# A tale from a nursing home



## Russell Williams

Tales from the nursing home.

Louise told me that this happened Friday.

Background  Sunday, March 25 Louise weighed herself and weighed 377 pounds. Friday at the nursing home staff decided to weigh her again. First they weighed her walker and found that it weighed 9 pounds. Then they weighed Louise and the walker and found that together Louise and the walker weighed 386 pounds. They subtracted the weight of the walker from 386 and told Louise that she weighed 277 pounds. They were amazed that Louise and lost so much weight since the last time she was in the nursing home.


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## Miss Vickie

So your point in this is to say that sometimes the nursing staff has poor math skills? Is it any better than anyone else pointing out your spelling errors?

How is this in any way beneficial to the members here? Or am I missing something?


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## Russell Williams

Louise's lost over 100 pounds in less than a year. That should make it much easier for her to get up and moving rapidly. People had complimented her when, probably due to having C diff, she lost about 70 pounds in five months. However she got the C diff under control and then started gaining weight back. I worried about this. Now that she is down to 276 pounds she should be putting much less stress on her hip replacement joint.

A year ago when she left the nursing home she was about 380 pounds. Many medical professionals would believe that 276 is a vast improvement.


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## moore2me

Ms Vicky,

I can't speak for Russell, but I thing accurate math is important in health care for several reasons. The main reason is to properly calculate dose of medication based on the patient's body weight. The amount of an antibiotic given a 277 pound woman could be vastly different than the amount given a 377 pound woman. 

I know that RNs are trained in calculating dose based on body weight, so it probably seems like water off a duck's back to someone with education. (My niece is currently going thru the last year of RN training and the only test she failed was on calculating medicine dosages. She was devastated, but had to study hard to master the subject.) I can see where someone with less medical education, might need some tips or refresher training and supervision working around medicine. (And yes, I know that there are restrictions on who can administer meds - but in nursing homes/home health care RNs or Drs. are not always there when needed.)

[And yes, I am aware there are other reasons for inaccurate dosing of patients like poor handwriting on doctors scripts, medication labeled in a confusing manner, emergencies when the pressure is on, and poor communication between patients, nurses, and doctors.]

That is why I think schools and trainers should emphasize to students the art of estimating answers to math problems so you can check yourself when dealing with medicine. For example . . . 

1. One raisin weighs about one gram.
2. One ml and one cm3 are the same thing.
3. One gallon a milk (or water) weighs about 8.8 lbs.
4. A one liter coke has 1000 ml.
5. A two liter coke has 2000 ml.
6. The average woman weighs about 150 pounds.
7. The average man weighs about 175 pounds.
8. One inch is 2.54 centimeters.
9. One kilogram is 1000 grams.

10. Sample question  if Patient A is prescribed 1 milligram of pain medication per pound of body weight and she weighs 200 pounds, how much should the pain medication weigh?  200 mg

11. If you had to eyeball the amount of this patients total dose, what would be the size of it?  (Answer  if one raisin weighs one gram, or about 1000 mg. So, a 200 mg dose would be about 1/5 the size of a raisin - or 20% of the raisins size.)


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## cinnamitch

moore2me said:


> Ms Vicky,
> 
> I can't speak for Russell, but I thing accurate math is important in health care for several reasons. The main reason is to properly calculate dose of medication based on the patient's body weight. The amount of an antibiotic given a 277 pound woman could be vastly different than the amount given a 377 pound woman.
> 
> I know that RNs are trained in calculating dose based on body weight, so it probably seems like water off a duck's back to someone with education. (My niece is currently going thru the last year of RN training and the only test she failed was on calculating medicine dosages. She was devastated, but had to study hard to master the subject.) I can see where someone with less medical education, might need some tips or refresher training and supervision working around medicine. (And yes, I know that there are restrictions on who can administer meds - but in nursing homes/home health care RNs or Drs. are not always there when needed.)
> 
> [And yes, I am aware there are other reasons for inaccurate dosing of patients like poor handwriting on doctors scripts, medication labeled in a confusing manner, emergencies when the pressure is on, and poor communication between patients, nurses, and doctors.]
> 
> That is why I think schools and trainers should emphasize to students the art of estimating answers to math problems so you can check yourself when dealing with medicine. For example . . .
> 
> 1. One raisin weighs about one gram.
> 2. One ml and one cm3 are the same thing.
> 3. One gallon a milk (or water) weighs about 8.8 lbs.
> 4. A one liter coke has 1000 ml.
> 5. A two liter coke has 2000 ml.
> 6. The average woman weighs about 150 pounds.
> 7. The average man weighs about 175 pounds.
> 8. One inch is 2.54 centimeters.
> 9. One kilogram is 1000 grams.
> 
> 10. Sample question  if Patient A is prescribed 1 milligram of pain medication per pound of body weight and she weighs 200 pounds, how much should the pain medication weigh?  200 mg
> 
> 11. If you had to eyeball the amount of this patients total dose, what would be the size of it?  (Answer  if one raisin weighs one gram, or about 1000 mg. So, a 200 mg dose would be about 1/5 the size of a raisin - or 20% of the raisins size.)



Most nursing homes nurses have very few times they will have to calculate a dose Furthermore if for some reason a weight is off by more than 20 lbs ,in many states we are required to notify the doctor .


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## Miss Vickie

Russell Williams said:


> Louise's lost over 100 pounds in less than a year. That should make it much easier for her to get up and moving rapidly. People had complimented her when, probably due to having C diff, she lost about 70 pounds in five months. However she got the C diff under control and then started gaining weight back. I worried about this. Now that she is down to 276 pounds she should be putting much less stress on her hip replacement joint.
> 
> A year ago when she left the nursing home she was about 380 pounds. Many medical professionals would believe that 276 is a vast improvement.



I'm still not clear what your point was in your post. And weight loss is not always a beneficial thing. In some cases it is, but in the case of -- say -- diabetes, when it's lost due to muscle wasting, obviously it's not. I had to fight with my diabetic brother to get him to take his insulin because it made him gain weight. It didn't matter to him the physiology behind it, or that he was shortening his life. He was obsessed with the weight thing, and it ended up killing him, because he developed renal failure from his diabetes which led to his loss of life.

I agree that 276 is less stress on a hip joint than 380; however, if she lost muscle mass, that won't help her with her rehab. But that wasn't your point, was it? I get the feeling your point was more that 386 minus 9 does not, indeed, equal 277. Yes?



moore2me said:


> Ms Vicky,
> 
> I can't speak for Russell, but I thing accurate math is important in health care for several reasons. The main reason is to properly calculate dose of medication based on the patient's body weight. The amount of an antibiotic given a 277 pound woman could be vastly different than the amount given a 377 pound woman.



First of all, it's Vickie. Secondly, we don't, as a rule, dose antibiotics based on weight in adults. Perhaps we should, but we don't. Thirdly, pharmacists do that calculation, though obviously we check their math. We can't even add a medication to an IV bag; it's done in the pharmacy. As a (very nearly licensed) NP, I do calculate doses of medications for the children I treat, but the pharmacist checks my math. It's not as though I'd trust anyone to be responsible for any decision I make, but one of the things that hospital accrediting bodies have learned is that the more "eyes" on something like this, the better. This is why we co-sign insulin, narcotics, and the like.

So I really don't think you need to lecture someone who's been an RN for eight years, who's getting her masters in nursing, that medication math is important. (Sorry if I sound uppity but it really does sound like you're lecturing me). Unlike those for whom this is an intellectual exercise, I actually live it every day that I'm at work or during my clinical rotation. 



> I can see where someone with less medical education, might need some tips or refresher training and supervision working around medicine. (And yes, I know that there are restrictions on who can administer meds - but in nursing homes/home health care RNs or Drs. are not always there when needed.)



It doesn't matter whether a RN or MD is there or not, if you don't have a license, you can't administer medications. LPNs can -- in some states -- administer some medications, but usually not IV meds. This is because it's not just the dosage but rather the whole clinical picture that needs to be evaluated before giving a med. What's the patient's pulse before giving digoxin? What's the patient's blood pressure before giving an IV antihypertensive med? What's compatible with what? Is this the appropriate time? I would hope no one but an RN or LPN would be giving meds to a patient, even (or especially!) in a nursing home.



> That is why I think schools and trainers should emphasize to students the art of estimating answers to math problems so you can check yourself when dealing with medicine. For example . . .
> 
> 1. One raisin weighs about one gram.
> 2. One ml and one cm3 are the same thing.
> 3. One gallon a milk (or water) weighs about 8.8 lbs.
> 4. A one liter coke has 1000 ml.
> 5. A two liter coke has 2000 ml.
> 6. The average woman weighs about 150 pounds.
> 7. The average man weighs about 175 pounds.
> 8. One inch is 2.54 centimeters.
> 9. One kilogram is 1000 grams.
> 
> 10. Sample question  if Patient A is prescribed 1 milligram of pain medication per pound of body weight and she weighs 200 pounds, how much should the pain medication weigh?  200 mg
> 
> 11. If you had to eyeball the amount of this patients total dose, what would be the size of it?  (Answer  if one raisin weighs one gram, or about 1000 mg. So, a 200 mg dose would be about 1/5 the size of a raisin - or 20% of the raisins size.)



Yeah, I'm not playing math games with you right now. I'm writing management guidelines for peripheral edema. Also, pain meds aren't dosed by weight. One thing I keep in mind when calculating dose is the "reasonable amount" test. If the amount I have to give is either a ridiculously large amount (several pills) or a ridiculously small amount (so small as to be nearly impossible to measure) I take a second look; hell, I take a second look anyway. In my experience, most medications are dosed in forms and amounts that are reasonable to give a patient. An IM injection is almost never more than 2 ml. An IV medication is almost never less than .2 ml except insulin which is dosed in units. I should almost never have to give a patient six, seven, or eight pills of anything (except misoprostol, which we routinely give 10 at a time for our moms who are hemorrhaging after delivery). 

See where clinical experience comes in handy? Errors usually happen during times of stress when the usual safety features we have in place end up being ignored, usually with the best of intentions. This is why appropriate staffing ratios are so important, to keep the nursing staff alert, awake, and not rushed, in order to do the very best job they can.



cinnamitch said:


> Most nursing homes nurses have very few times they will have to calculate a dose Furthermore if for some reason a weight is off by more than 20 lbs ,in many states we are required to notify the doctor .



True. Plus, with the advent of computer charting, any wide variation like that would create enough red flags in the chart that it'd be quite obvious.


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## Dromond

moore2me said:


> Ms Vicky,
> 
> I can't speak for Russell, but I thing accurate math is important in health care for several reasons. The main reason is to properly calculate dose of medication based on the patient's body weight. The amount of an antibiotic given a 277 pound woman could be vastly different than the amount given a 377 pound woman.
> 
> I know that RNs are trained in calculating dose based on body weight, so it probably seems like water off a duck's back to someone with education. (My niece is currently going thru the last year of RN training and the only test she failed was on calculating medicine dosages. She was devastated, but had to study hard to master the subject.) I can see where someone with less medical education, might need some tips or refresher training and supervision working around medicine. (And yes, I know that there are restrictions on who can administer meds - but in nursing homes/home health care RNs or Drs. are not always there when needed.)
> 
> [And yes, I am aware there are other reasons for inaccurate dosing of patients like poor handwriting on doctors scripts, medication labeled in a confusing manner, emergencies when the pressure is on, and poor communication between patients, nurses, and doctors.]
> 
> That is why I think schools and trainers should emphasize to students the art of estimating answers to math problems so you can check yourself when dealing with medicine. For example . . .
> 
> 1. One raisin weighs about one gram.
> 2. One ml and one cm3 are the same thing.
> 3. One gallon a milk (or water) weighs about 8.8 lbs.
> 4. A one liter coke has 1000 ml.
> 5. A two liter coke has 2000 ml.
> 6. The average woman weighs about 150 pounds.
> 7. The average man weighs about 175 pounds.
> 8. One inch is 2.54 centimeters.
> 9. One kilogram is 1000 grams.
> 
> 10. Sample question  if Patient A is prescribed 1 milligram of pain medication per pound of body weight and she weighs 200 pounds, how much should the pain medication weigh?  200 mg
> 
> 11. If you had to eyeball the amount of this patients total dose, what would be the size of it?  (Answer  if one raisin weighs one gram, or about 1000 mg. So, a 200 mg dose would be about 1/5 the size of a raisin - or 20% of the raisins size.)



I need a raisin sized dose of morphine after reading this.


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## moore2me

Miss Vickie said:


> I'm still not clear what your point was in your post. And weight loss is not always a beneficial thing. In some cases it is, but in the case of -- say -- diabetes, when it's lost due to muscle wasting, obviously it's not. I had to fight with my diabetic brother to get him to take his insulin because it made him gain weight. It didn't matter to him the physiology behind it, or that he was shortening his life. He was obsessed with the weight thing, and it ended up killing him, because he developed renal failure from his diabetes which led to his loss of life.
> 
> I agree that 276 is less stress on a hip joint than 380; however, if she lost muscle mass, that won't help her with her rehab. But that wasn't your point, was it? I get the feeling your point was more that 386 minus 9 does not, indeed, equal 277. Yes?
> 
> 
> 
> First of all, it's Vickie.
> 
> *I am guilty as charged. :doh: I apologize Vickie.*
> 
> So I really don't think you need to lecture someone who's been an RN for eight years, who's getting her masters in nursing, that medication math is important. (Sorry if I sound uppity but it really does sound like you're lecturing me). Unlike those for whom this is an intellectual exercise, I actually live it every day that I'm at work or during my clinical rotation.
> 
> *Vickie. I would never lecture an RN on anything. However, I am an expert and would qualify as having a Post Doctorate on getting lectured by RN. Mom got her RN degree and license in late 30's. She had me in the early 50's and as soon as I understood English, mom began my lecture series. After that my personalized RN lecture series were delivered all day, everyday - and still continue with mom over 80 years old. To make my training by Nurse Mom M2M, she has forgotten what she discussed previously so I am hearing the same lectures (or tutorials) again, and again, and again . . .
> 
> *
> 
> It doesn't matter whether a RN or MD is there or not, if you don't have a license, you can't administer medications. LPNs can -- in some states -- administer some medications, but usually not IV meds. This is because it's not just the dosage but rather the whole clinical picture that needs to be evaluated before giving a med. What's the patient's pulse before giving digoxin? What's the patient's blood pressure before giving an IV antihypertensive med? What's compatible with what? Is this the appropriate time? I would hope no one but an RN or LPN would be giving meds to a patient, even (or especially!) in a nursing home.
> 
> 
> 
> Yeah, I'm not playing math games with you right now. *Any math-y games you would win hands down. My math skills are dismal - I try to help students turn math stuff into something they can understand better. I wasn't try to teach the expert - I was trying to give an example how to check and test students. I guess my example bombed?*
> 
> I'm writing management guidelines for peripheral edema. Also, pain meds aren't dosed by weight. One thing I keep in mind when calculating dose is the "reasonable amount" test. If the amount I have to give is either a ridiculously large amount (several pills) or a ridiculously small amount (so small as to be nearly impossible to measure) I take a second look; hell, I take a second look anyway. In my experience, most medications are dosed in forms and amounts that are reasonable to give a patient. An IM injection is almost never more than 2 ml. An IV medication is almost never less than .2 ml except insulin which is dosed in units. I should almost never have to give a patient six, seven, or eight pills of anything (except misoprostol, which we routinely give 10 at a time for our moms who are hemorrhaging after delivery).
> 
> See where clinical experience comes in handy? Errors usually happen during times of stress when the usual safety features we have in place end up being ignored, usually with the best of intentions. This is why appropriate staffing ratios are so important, to keep the nursing staff alert, awake, and not rushed, in order to do the very best job they can.
> 
> * I am in your court on the safety features, staffing ratio, and scheduling you mentioned. Unfortunately, the hospitals and other health care providers are trying to cut costs by cutting nursing personnel. Really bad idea for the patients and for the hospital workers carrying the extra load.*
> 
> 
> 
> True. Plus, with the advent of computer charting, any wide variation like that would create enough red flags in the chart that it'd be quite obvious.





Dromond said:


> I need a raisin sized dose of morphine after reading this.



*Dromond - make mine a double. I'll wash it down with some Old Charter 7.*


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## moore2me

*Woo Hoo!

Please notice I used my 5000th post to answer the above post.

This has been a recordsetting month for me!

M2M*​


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## Surlysomething

When I read this kind of a post I wonder what the purpose is. Are there 5 people that know of this person? Does it have to be public? Why not send messages to the handful of people that know her instead of starting a THREAD about it?

So weird.


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## Dromond

moore2me said:


> *Dromond - make mine a double. I'll wash it down with some Old Charter 7.*



You make no sense in this thread.


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## pdgujer148

Shit. I've been away awhile. When did the tone get this toxic?


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## Russell Williams

Surlysomething said:


> When I read this kind of a post I wonder what the purpose is. Are there 5 people that know of this person? Does it have to be public? Why not send messages to the handful of people that know her instead of starting a THREAD about it?
> 
> So weird.



Well let's see, Louise was a member of the Board of Directors of NAAFA for several years and one year was was the president of NAAFA. Louise organized some of the early fat group conventions on the West Coast. For years Louise was a member of Fat Lip Readers Theater which performed up and down the West Coast. Louise is a published author. If any of the people on this board are also members of any ToastMaster groups in the Bay Area they probably know if Louise because Louise was an officer at, I believe, the regional level, of Toastmasters. Scrabble players may know her because at one point she was one of the top 40 Scrabble players in North America. It is at least possible that there are people here who were in the Peace Corps with her.

"Are there five people who know this person". I, and probably many other people here, wish that they had $10 for every person that knows Louise Wolfe. If so, we would all have considerably greater resources available.


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## Russell Williams

Yesterday, using a walker, Louise walked about 100 feet. This is probably 50 feet further than she is walked in the last two years. Is certainly further than she has walked in the last year and a half. For the last year and a half what would stop her would be the pain becoming unbearable after about 30 feet. Yesterday she was stopped because she ran out of air. During the whole trip there was no severe pain.

Last evening I visited with Louise. As I was leaving a nurse told me that she wanted me to know that she was filling out a complaint form. She did not tell me what the complaint form was about and it is certainly possible that she was complaining about me. There are at least two other possibilities:

One) About seven o'clock Louise decided it was time to sit on the edge of the bed and wait for someone to help her into bed. She turned on her call light, got out of her chair, and sat on the edge of the bed. About 7:20 PM, as her pain was increasing by the minute, she sent me to go see if I could find the person responsible for helping patients into bed. I wandered around the halls asking a variety of people and each person I asked explained that the responsibility lay with someone who was not currently visible. About 7:50 PM I went back to the room where Louise was crying because the pain was so great. I was not properly trained on how to move the legs of a person with a recent hip replacement but I did the best I could and got her legs into bed. About eight o'clock someone came to answer her call light.

Two) After Louise was in bed the wound nurse and an assistant came. Louise's dressing was coming off and needed to be replaced. The wound nurse partially lifted Louise's hip off of the bed and removed the dressing. She then asked the assistant to help her hold the hip up so she could put the new dressing on. The assistant had disappeared. The wound nurse called out for the assistant and no assistant appeared. Finally the woman nurse let part of the uncovered wound down onto the sheet while she walked the halls hunting for her assistant. Finally she found the assistant and the two of them came back into Louise's room and together they raised Louise's hip and wound off of the sheet and, with the help of the assistant, the wound nurse very carefully cleaned out the wound and covered it with bandages.

In no way am I criticizing any of the above actions. All of these actions were taken by highly trained people or people supervised by highly trained people. It is quite possible that the complaint form was filed against me for something including the possibility that the nurse was outraged because I put Louise's legs back into bed.


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## Surlysomething

Russell Williams said:


> Well let's see, Louise was a member of the Board of Directors of NAAFA for several years and one year was was the president of NAAFA. Louise organized some of the early fat group conventions on the West Coast. For years Louise was a member of Fat Lip Readers Theater which performed up and down the West Coast. Louise is a published author. If any of the people on this board are also members of any ToastMaster groups in the Bay Area they probably know if Louise because Louise was an officer at, I believe, the regional level, of Toastmasters. Scrabble players may know her because at one point she was one of the top 40 Scrabble players in North America. It is at least possible that there are people here who were in the Peace Corps with her.
> 
> "Are there five people who know this person". I, and probably many other people here, wish that they had $10 for every person that knows Louise Wolfe. If so, we would all have considerably greater resources available.



She's not an active participant here any more. And you rarely are. I think it would be more beneficial if you posted to the people directly than making these rambling posts that don't make any sense to the MAJORITY of people here. It's just really odd.


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## Surlysomething

Russell Williams said:


> Yesterday, using a walker, Louise walked about 100 feet. This is probably 50 feet further than she is walked in the last two years. Is certainly further than she has walked in the last year and a half. For the last year and a half what would stop her would be the pain becoming unbearable after about 30 feet. Yesterday she was stopped because she ran out of air. During the whole trip there was no severe pain.
> 
> Last evening I visited with Louise. As I was leaving a nurse told me that she wanted me to know that she was filling out a complaint form. She did not tell me what the complaint form was about and it is certainly possible that she was complaining about me. There are at least two other possibilities:
> 
> One) About seven o'clock Louise decided it was time to sit on the edge of the bed and wait for someone to help her into bed. She turned on her call light, got out of her chair, and sat on the edge of the bed. About 7:20 PM, as her pain was increasing by the minute, she sent me to go see if I could find the person responsible for helping patients into bed. I wandered around the halls asking a variety of people and each person I asked explained that the responsibility lay with someone who was not currently visible. About 7:50 PM I went back to the room where Louise was crying because the pain was so great. I was not properly trained on how to move the legs of a person with a recent hip replacement but I did the best I could and got her legs into bed. About eight o'clock someone came to answer her call light.
> 
> Two) After Louise was in bed the wound nurse and an assistant came. Louise's dressing was coming off and needed to be replaced. The wound nurse partially lifted Louise's hip off of the bed and removed the dressing. She then asked the assistant to help her hold the hip up so she could put the new dressing on. The assistant had disappeared. The wound nurse called out for the assistant and no assistant appeared. Finally the woman nurse let part of the uncovered wound down onto the sheet while she walked the halls hunting for her assistant. Finally she found the assistant and the two of them came back into Louise's room and together they raised Louise's hip and wound off of the sheet and, with the help of the assistant, the wound nurse very carefully cleaned out the wound and covered it with bandages.
> 
> In no way am I criticizing any of the above actions. All of these actions were taken by highly trained people or people supervised by highly trained people. It is quite possible that the complaint form was filed against me for something including the possibility that the nurse was outraged because I put Louise's legs back into bed.



I feel like I need to reply with a play by play of my day. But who cares.


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## Russell Williams

Surlysomething said:


> She's not an active participant here any more. And you rarely are. I think it would be more beneficial if you posted to the people directly than making these rambling posts that don't make any sense to the MAJORITY of people here. It's just really odd.



your opinion has been duly noted and I thank you for having the kindness to take the time to express it.


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## Surlysomething

Russell Williams said:


> your opinion has been duly noted and I thank you for having the kindness to take the time to express it.


 
Why don't you start a thread for all of your Louise updates. Then people can subscribe to it and be updated everytime you post and are kept in the loop. I realize she's been an active member of the size acceptance movement in the past, but I gaurantee you that most people on the site don't know who she is. The information would be better on a subscription basis, don't you think? Of course, it's just a suggestion.

I don't mean to downplay her struggles, they're very real, but I don't think starting a new thread about her issues is very productive.


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## Russell Williams

Surlysomething said:


> I feel like I need to reply with a play by play of my day. But who cares.


I care, you sound like a person who leads a very interesting life and I would be interested in knowing more about it. Your thoughts, your hopes, your goals, your aspirations, your successes.


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## Marlayna

This woman has greatly contributed to the movement in the early days, and I respect her and wish her well. I'm familiar with her name, and have often seen her photos. Without NAAFA there would be no size acceptance movement.


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## Surlysomething

Marlayna said:


> Without NAAFA there would be no size acceptance movement.


 

Really? I didn't know anything about them and i've always been pretty ok with things. Haha.


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## moore2me

My 2 cents worth,

I love to hear Russell & Louise's stories. The stories are educational and entertaining. Some of his stories are even like puzzles to be figured out. Let him speak - this is a free Forum.

And, one of these days I am likely to end up in a nursing home. Due to MS it may be sooner than most people. It is not something I look forward to, but I am very, very interested in what goes on behind their doors. Louise and Russell are telling me what I want to know and what can happen to me and some of the others on this board. Going to a nursing home is like taking a trip to the North Pole. It may not be a horrible place to go to, but I really need to know what to pack and what to expect.

I am also interested in what happens to my fellow DIMMERS in Canada. Knowledge is power.


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## Surlysomething

moore2me said:


> My 2 cents worth,
> 
> I love to hear Russell & Louise's stories. The stories are educational and entertaining. Some of his stories are even like puzzles to be figured out. Let him speak - this is a free Forum.
> 
> And, one of these days I am likely to end up in a nursing home. Due to MS it may be sooner than most people. It is not something I look forward to, but I am very, very interested in what goes on behind their doors. Louise and Russell are telling me what I want to know and what can happen to me and some of the others on this board. Going to a nursing home is like taking a trip to the North Pole. It may not be a horrible place to go to, but I really need to know what to pack and what to expect.
> 
> I am also interested in what happens to my fellow DIMMERS in Canada. Knowledge is power.



That's really not the point I was making. I think all the updates could live in a thread of their own not multiple threads about the latest adventure du jour.


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## Miss Vickie

Surlysomething said:


> That's really not the point I was making. I think all the updates could live in a thread of their own not multiple threads about the latest adventure du jour.



Also, it seems like his posts in this thread have been intended to diss the nursing staff. First, a mathematical error which would have easily been caught, and secondly a discussion about how no one was around to get Louise into bed at a time of her choosing.

Well, here's my take on that: It may be the right time for her to go to bed, but unless she's in a very exclusive place, she has to share the staff with other patients. So, what if the nurse or aid was in another room, cleaning a patient? Or dealing with a medication reaction? Or caring for a patient who was having a medical emergency? Or cleaning up a patient who'd had an accident? Or maybe she was even in report. In a lot of places, the patient to nurse ratio is ridiculously high, and the patient to nurse aid ratio is worse. While we would ideally all love to cater to every need of our patients, we have to prioritize the care we provide.

The best way, if you're interested, to get what you want in a hospital or nursing home is to be proactive and talk to your nurse or aide early in the day and make a plan. If you think you'll need help with an ADL, see if you can arrange it at a certain time, and that way you can be pre-medicated prior to the event and you and your nurse will be on the same page. You guys can negotiate for a time that works for you which won't compromise the other patients' safety if she's with you for a protracted period of time.

This is how I try to do things with my patients who need assist to shower, or want a bed bath, or scheduling time to monitor their baby or have a wheelchair ride; part of my first "rounding" in the morning, is discussing the plan for the day, when they want to do what, and arranging our day. That way we both know what to expect, inasmuch as you can plan anything in a unit where babies happen at a moment's notice. I'm very clear with them that if a medical emergency comes up and I can't make it (and since I'm responsible to go to deliveries several times a day, that's a very real possibility), I'll be with them as soon as I can. And then I use my iPhone to set alarms so I don't forget.

I also carry a cordless phone with me, and give the number to my patients at the beginning of the shift, writing it in nice big numbers on their rounding board. That way they can call me if they need anything, and I can help them much more quickly. I can also call them if I'm running late for our "appointment". I tell them that I will always answer the phone except if I'm in the bathroom (I tell them nobody needs to hear me tinkle, which usually gets a laugh), at a delivery, or with another patient and to use their call light if they need immediate assist and can't reach me. And I promise them that when I'm with them, they, too, will have my undivided attention and I will not leave their room until we're done unless there is a medical emergency.

So, Russell (et al), just as you would want your nurse to give you their undivided attention when they're caring for you, it helps if you can understand that when they're with another patient, that patient also deserves (and may well need!) undivided attention. I'm sorry she went without pain medication (I consider pain a medical "emergency" and treat it with great significance so my patients are always well medicated). Not knowing what was going on at the time, I can't even guess as to why that happened, though I'm guessing it was a staffing issue. However, I encourage my patients that when they *start* to feel their pain coming back to contact me, since it's easier to keep pain under control than to have to play catch up. 

I'm not saying there aren't bad nurses who don't care, because I know there are. I work with some. However, more likely we have a heavy assignment, are an hour behind in everything, haven't eaten or peed since we got to work God knows how many hours ago, and are doing our best to get everyone's needs met. But if you feel you aren't getting safe or appropriate care, ask to talk to a charge nurse on duty. If you can't get help that way, use the hospital phone and call the operator and ask for the nursing supervisor. They're ultimately responsible for the nursing care in the hospital and can address staffing issues and get you what you need.


----------



## Marlayna

Surlysomething said:


> Really? I didn't know anything about them and i've always been pretty ok with things. Haha.


Every movement for equality had to have a pioneer, and NAAFA is ours.


----------



## Surlysomething

Marlayna said:


> Every movement for equality had to have a pioneer, and NAAFA is ours.



Yours. Please don't speak on behalf of everyone.


----------



## CastingPearls

Surlysomething said:


> That's really not the point I was making. I think all the updates could live in a thread of their own not multiple threads about the latest adventure du jour.


In all honesty, I don't think this is an unreasonable request. Can a mod round up all the Louise threads and merge them? I'm thinking it would be beneficial to all her fans who like catching up on her activities......


----------



## Marlayna

Surlysomething said:


> Yours. Please don't speak on behalf of everyone.


 Sorry, the size acceptance movement owes it all to NAAFA... fact not opinion. 
Many of us were there at the beginning, and can attest to that.

Perhaps our Webmaster can chime in with his vast knowledge, if you don't believe me.


----------



## CastingPearls

The size acceptance movement is comprised of thousands of individuals many of whom have never heard of NAAFA and many of those thousands consider living their lives with dignity and self-respect personal activism. 

Whatever NAAFA achieved then, many current vocal activists are more concerned with getting work done NOW than crowing over and over and over again about past crowning glories. Those of us who know appreciate but decline to worship, sorry. 

NAAFA has done a lot that many people don't know of but to imply that people who were there from the beginning have some kind of edge over those who aren't or never were part of it is condescending.

Smugly calling in Conrad as if it's going to impress or shame people who don't agree is nauseating not to mention immature. Are you sure he'd appreciate your summoning him as if he's some spirit of fatties past? I've been wrong in the past but I don't think he does requests.


----------



## vardon_grip

There was a Time.com article about NAAFA that had a great quote...

"...NAAFA's public-relations director, Peggy Howell, says her group doesn't encourage anyone to lead an unhealthy lifestyle but recognizes that for some people weight loss isn't possible. "We don't encourage people to get fat," Howell says."


----------



## Surlysomething

Marlayna said:


> Sorry, the size acceptance movement owes it all to NAAFA... fact not opinion.
> Many of us were there at the beginning, and can attest to that.
> 
> Perhaps our Webmaster can chime in with his vast knowledge, if you don't believe me.




Honestly, i've had nothing to do with the 'size movement' and i'm too young to remember your glory days of the 70's and 80's. I'm also Canadian and had never heard of this stuff until I came here. Which by the way was through the 'chat' portion of the site. Just because your history involves this doesn't mean mine does or many of the other people here. Quit painting with broad strokes, it doesn't look good on you..

Plus what Lainey said.


----------



## Surlysomething

I also have a hard time wrapping my head around the opinion of someone who's only been on the site less than a year.


----------



## cinnamitch

Miss Vickie said:


> Also, it seems like his posts in this thread have been intended to diss the nursing staff. First, a mathematical error which would have easily been caught, and secondly a discussion about how no one was around to get Louise into bed at a time of her choosing.
> 
> Well, here's my take on that: It may be the right time for her to go to bed, but unless she's in a very exclusive place, she has to share the staff with other patients. So, what if the nurse or aid was in another room, cleaning a patient? Or dealing with a medication reaction? Or caring for a patient who was having a medical emergency? Or cleaning up a patient who'd had an accident? Or maybe she was even in report. In a lot of places, the patient to nurse ratio is ridiculously high, and the patient to nurse aid ratio is worse. While we would ideally all love to cater to every need of our patients, we have to prioritize the care we provide.
> 
> The best way, if you're interested, to get what you want in a hospital or nursing home is to be proactive and talk to your nurse or aide early in the day and make a plan. If you think you'll need help with an ADL, see if you can arrange it at a certain time, and that way you can be pre-medicated prior to the event and you and your nurse will be on the same page. You guys can negotiate for a time that works for you which won't compromise the other patients' safety if she's with you for a protracted period of time.
> 
> This is how I try to do things with my patients who need assist to shower, or want a bed bath, or scheduling time to monitor their baby or have a wheelchair ride; part of my first "rounding" in the morning, is discussing the plan for the day, when they want to do what, and arranging our day. That way we both know what to expect, inasmuch as you can plan anything in a unit where babies happen at a moment's notice. I'm very clear with them that if a medical emergency comes up and I can't make it (and since I'm responsible to go to deliveries several times a day, that's a very real possibility), I'll be with them as soon as I can. And then I use my iPhone to set alarms so I don't forget.
> 
> I also carry a cordless phone with me, and give the number to my patients at the beginning of the shift, writing it in nice big numbers on their rounding board. That way they can call me if they need anything, and I can help them much more quickly. I can also call them if I'm running late for our "appointment". I tell them that I will always answer the phone except if I'm in the bathroom (I tell them nobody needs to hear me tinkle, which usually gets a laugh), at a delivery, or with another patient and to use their call light if they need immediate assist and can't reach me. And I promise them that when I'm with them, they, too, will have my undivided attention and I will not leave their room until we're done unless there is a medical emergency.
> 
> So, Russell (et al), just as you would want your nurse to give you their undivided attention when they're caring for you, it helps if you can understand that when they're with another patient, that patient also deserves (and may well need!) undivided attention. I'm sorry she went without pain medication (I consider pain a medical "emergency" and treat it with great significance so my patients are always well medicated). Not knowing what was going on at the time, I can't even guess as to why that happened, though I'm guessing it was a staffing issue. However, I encourage my patients that when they *start* to feel their pain coming back to contact me, since it's easier to keep pain under control than to have to play catch up.
> 
> I'm not saying there aren't bad nurses who don't care, because I know there are. I work with some. However, more likely we have a heavy assignment, are an hour behind in everything, haven't eaten or peed since we got to work God knows how many hours ago, and are doing our best to get everyone's needs met. But if you feel you aren't getting safe or appropriate care, ask to talk to a charge nurse on duty. If you can't get help that way, use the hospital phone and call the operator and ask for the nursing supervisor. They're ultimately responsible for the nursing care in the hospital and can address staffing issues and get you what you need.



I can give an idea on why the med might have been late. If it is close to bedtime, most nurses are doing a med pass. In most homes I have worked in that means bedtime meds to all the residents I am assigned to that night. Most of the time my bedtime med pass would involve meds being administed to around 30-35 people. That includes IV meds, Meds administered via tube and insulin when needed. Its not an excuse but most of the time it is only one nurse, you cant always get where you are needed in a timely manner. We really do try. Most of the time if you are in pain we will try our best to gt it to you in a timely manner, but we are human. We might be up to our elbows giving an enema or running in to some trouble with an IV. Just find out what's going on. If you feel the need to have it done sooner , call the supervisor. I have had a supervisor give a med if I am tied up where I can't get away. People need to be active in their care and their family members care, but they also have to realize they aren't the only patient there.


----------



## Marlayna

CastingPearls said:


> The size acceptance movement is comprised of thousands of individuals many of whom have never heard of NAAFA and many of those thousands consider living their lives with dignity and self-respect personal activism.
> 
> Whatever NAAFA achieved then, many current vocal activists are more concerned with getting work done NOW than crowing over and over and over again about past crowning glories. Those of us who know appreciate but decline to worship, sorry.
> 
> NAAFA has done a lot that many people don't know of but to imply that people who were there from the beginning have some kind of edge over those who aren't or never were part of it is condescending.
> 
> Smugly calling in Conrad as if it's going to impress or shame people who don't agree is nauseating not to mention immature. Are you sure he'd appreciate your summoning him as if he's some spirit of fatties past? I've been wrong in the past but I don't think he does requests.


Wow, just wow. Thanks for twisting my words.
"Crowing", "worshiping", "condescending", "nauseating", "immature"... you sure have an active imagination.
Thanks for the laugh!


----------



## Marlayna

Surlysomething said:


> Honestly, i've had nothing to do with the 'size movement' and i'm too young to remember your glory days of the 70's and 80's. I'm also Canadian and had never heard of this stuff until I came here. Which by the way was through the 'chat' portion of the site. Just because your history involves this doesn't mean mine does or many of the other people here. Quit painting with broad strokes, it doesn't look good on you..
> 
> Plus what Lainey said.


That explains a lot. LOL. :kiss2:


----------



## Marlayna

Surlysomething said:


> I also have a hard time wrapping my head around the opinion of someone who's only been on the site less than a year.


Yes, you do have a hard time, but it's not my problem. I subscribed to Dimensions when it was a magazine, back in the day, as they say.


----------



## Marlayna

vardon_grip said:


> There was a Time.com article about NAAFA that had a great quote...
> 
> "...NAAFA's public-relations director, Peggy Howell, says her group doesn't encourage anyone to lead an unhealthy lifestyle but recognizes that for some people weight loss isn't possible. "We don't encourage people to get fat," Howell says."


Thank you. It's important to educate people about the discrimination against fat people, and what they can do about it. Thankfully, there are now laws against it.


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## Surlysomething

Marlayna said:


> Yes, you do have a hard time, but it's not my problem. I subscribed to Dimensions when it was a magazine, back in the day, as they say.



That has nothing to do with the site as it is now. Get out of your way-back machine.


----------



## Miss Vickie

cinnamitch said:


> I can give an idea on why the med might have been late. If it is close to bedtime, most nurses are doing a med pass. In most homes I have worked in that means bedtime meds to all the residents I am assigned to that night. Most of the time my bedtime med pass would involve meds being administed to around 30-35 people. That includes IV meds, Meds administered via tube and insulin when needed. Its not an excuse but most of the time it is only one nurse, you cant always get where you are needed in a timely manner. We really do try. Most of the time if you are in pain we will try our best to gt it to you in a timely manner, but we are human. We might be up to our elbows giving an enema or running in to some trouble with an IV. Just find out what's going on. If you feel the need to have it done sooner , call the supervisor. I have had a supervisor give a med if I am tied up where I can't get away. People need to be active in their care and their family members care, but they also have to realize they aren't the only patient there.



So true. I don't have any experience in nursing homes, so thank you for educating us about how it works in nursing homes. 

And yeah, how many times have I gone into a room to "give a med real fast" and been stuck there because the IV infiltrated, or the patient is nauseous, or -- more recently -- because the new fancypants and no doubt very spendy EMR system we have doesn't recognize the medication [insert voluminous and descriptive swearing here]. Passing meds went from a quick and straightforward operation to a time consuming mess.


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## Surlysomething

Thank you for giving knowledge on how things work with meds etc in hospitals/nursing homes, ladies. Your job is often thankless but those of us with chronic health conditions and family/friends that have health issues really do appreciate all the hard work you do.


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## Dromond

NAAFA means nothing to me, and never has. I had never heard of it until I joined Dimensions. From what I've seen since joining Dimensions, NAAFA is a club. More social than anything. They've had no impact on my life.


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## Marlayna

Surlysomething said:


> That has nothing to do with the site as it is now. Get out of your way-back machine.


Thanks for your "witty" comebacks. Too bad all they show is a lack of respect for what came before and how far the movement has come due to the hard work of others.
I'm done with you, so get the last word in and do a happy dance around the room!


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## Marlayna

Dromond said:


> NAAFA means nothing to me, and never has. I had never heard of it until I joined Dimensions. From what I've seen since joining Dimensions, NAAFA is a club. More social than anything. They've had no impact on my life.


I'm not going to list all the good things NAAFA had done and continues to do. You have no interest in it and that's fine.


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## Russell Williams

It appears that what is happening here is that people are being provided with a lot more information about how to improve their own condition should they wind up in a nursing home or the condition of a friend or relative should they happen to wind up in a nursing home. That is very useful information.

Today Louise was told that she will probably be in the home for another month or so. Next Tuesday they plan to take the staples out. They will take her to her first doctor's appointment next Thursday and they will do it by ambulance but after that they will see if she is able to get in and out of our car. Today, on the first of her three walks she walked 75 feet. Based on previous experience my biggest fear is that she will suddenly have a setback to some sort of infection since she seemed to very prone to infections.


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## Surlysomething

Marlayna said:


> Thanks for your "witty" comebacks. Too bad all they show is a lack of respect for what came before and how far the movement has come due to the hard work of others.
> I'm done with you, so get the last word in and do a happy dance around the room!



Grow up.


----------



## Surlysomething

Russell Williams said:


> It appears that what is happening here is that people are being provided with a lot more information about how to improve their own condition should they wind up in a nursing home or the condition of a friend or relative should they happen to wind up in a nursing home. That is very useful information.
> 
> Today Louise was told that she will probably be in the home for another month or so. Next Tuesday they plan to take the staples out. They will take her to her first doctor's appointment next Thursday and they will do it by ambulance but after that they will see if she is able to get in and out of our car. Today, on the first of her three walks she walked 75 feet. Based on previous experience my biggest fear is that she will suddenly have a setback to some sort of infection since she seemed to very prone to infections.



Apparently all of the suggestions went right over your head. Tunnel vision is a pretty sad state to be in.


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## Marlayna

Russell Williams said:


> It appears that what is happening here is that people are being provided with a lot more information about how to improve their own condition should they wind up in a nursing home or the condition of a friend or relative should they happen to wind up in a nursing home. That is very useful information.
> 
> Today Louise was told that she will probably be in the home for another month or so. Next Tuesday they plan to take the staples out. They will take her to her first doctor's appointment next Thursday and they will do it by ambulance but after that they will see if she is able to get in and out of our car. Today, on the first of her three walks she walked 75 feet. Based on previous experience my biggest fear is that she will suddenly have a setback to some sort of infection since she seemed to very prone to infections.


I hope you'll keep us all updated, in spite of any negative voices. I don't doubt that there will be those here who will have to undergo this sort of surgery, and they can know what to expect. Louise is very lucky to have you. It sounds like quite a challenge to have to go through a hip replacement.


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## Russell Williams

If you have no interest in what happens to Louise then please do not read any of the following. If you read the following please do not complain that you did not wish to read the following.:


Louise has started to bleed from her incision. On top of her sheet they placed a pad which is about 2.5' x 2.5'. One side is plastic and the other is paper. Thursday night she bled to the point where the entire pad was covered with blood. When she stood up to use the bedside facility she was dripping blood on the floor. This morning when she woke up the pad was again completely covered with blood. She is still taking Coumadin and I have strongly suggested, since the staff cannot get a hold of a Dr., that she considered stopping the Coumadin.

Update. Louise says that a doctor has been contacted and he said to continue the Coumadin until he gets the results of a blood test. Meanwhile they have put something called a pressure bandage over top of the wound and they have said that from now on if the pressure bandage starts leaking they will put a bigger pressure bandage over the leak. As best I can tell Louise is still talking coherently.


----------



## Miss Vickie

Russell Williams said:


> If you have no interest in what happens to Louise then please do not read any of the following. If you read the following please do not complain that you did not wish to read the following.:
> 
> 
> Louise has started to bleed from her incision. On top of her sheet they placed a pad which is about 2.5' x 2.5'. One side is plastic and the other is paper. Thursday night she bled to the point where the entire pad was covered with blood. When she stood up to use the bedside facility she was dripping blood on the floor. This morning when she woke up the pad was again completely covered with blood. She is still taking Coumadin and I have strongly suggested, since the staff cannot get a hold of a Dr., that she considered stopping the Coumadin.
> 
> Update. Louise says that a doctor has been contacted and he said to continue the Coumadin until he gets the results of a blood test. Meanwhile they have put something called a pressure bandage over top of the wound and they have said that from now on if the pressure bandage starts leaking they will put a bigger pressure bandage over the leak. As best I can tell Louise is still talking coherently.



Hi Russell. I just wanted to reassure you that this is completely normal after a big surgery such as Louise's. Assuming her incision is intact (which I assume someone has checked???) her biggest risk at this point is a blood clot, and the best way to determine her clotting ability isn't what's going on with her incision but rather the results of the clotting tests. Stopping the coumadin -- rather than adjusting the dose -- can throw her clotting into disarray and in the long run make her sicker and place her at greater risk.

As she gets up more, she may bleed more, and those pads don't hold a lot of blood so it looks like more blood than it actually is. Adding a bigger pressure bandage makes sense and is the usual treatment when you have a site that's "weepy". I have lots of patients whose surgical sites do this and they're not on blood thinners, though you're right -- a blood thinner doesn't help and should be re-evaluated.

The bummer is that it sounds like it's taking awhile to get those results back. In a hospital, we'd have them back in an hour and could progress from there but it seems a nursing home it takes longer? Any idea how long until he gets them back? Titrating anticoagulants is tough, and when you're waiting for test results, it makes it tougher.

In the meantime they need to be taking close tabs of her vital signs, because even subtle changes -- increase in pulse, decrease in blood pressure -- can indicate too much bleeding.


----------



## Russell Williams

"The bummer is that it sounds like it's taking awhile to get those results back. In a hospital, we'd have them back in an hour and could progress from there but it seems a nursing home it takes longer? Any idea how long until he gets them back? Titrating anticoagulants is tough, and when you're waiting for test results, it makes it tougher."

Ms. Vicky, I thank you for your kind and comforting words. Saturday morning they took blood to do a test. Saturday noon they told Louise that they had not taken enough blood and that they would not be able to do another test until Sunday.


----------



## Russell Williams

Last week, day by day, Louise, using her walker, went further and further. By Thursday she was up to 225 feet. At night on top of the sheets there is a cloth pad, on top of that a 2' x 3' pad that has paper on one side and plastic on the other. Friday morning when she woke up the paper pad was completely full of a red fluid. When Louise stood up to use the bedside facilities red fluid was dripping on the floor. Louise was told she should not be doing physical therapy. Saturday morning when she woke up the pad was again full of a red fluid and Louise was again told she should not be standing and doing physical therapy. Pressure bandages were applied and by Saturday night there was very little red fluid oozing out of the wound. There is no physical therapy on Sunday. Today will make at least three straight days in which she has not done any walking physical therapy. I worry that the laying in bed without exercise will increase the chances of a return of C diff but the nurse told me that laying in bed without exercise has no effect on C diff rates. The only thing that affects C diff is whether or not the person is taking antibiotics.

One of the complicating factors is that Louise is on Coumadin. Coumadin helps to prevent clotting. She is on Coumadin because after such significant surgery the chances of a blood clot increase. However, because she is on Coumadin it becomes more difficult for clots to form to stop the red fluid from leaking out. (I have not seen the large amounts of red fluid therefore I do not know if it is actual blood or mostly plasma tinged with some red cells.)


----------



## Jack Secret

Russell Williams said:


> Last week, day by day, Louise, using her walker, went further and further. By Thursday she was up to 225 feet. At night on top of the sheets there is a cloth pad, on top of that a 2' x 3' pad that has paper on one side and plastic on the other. Friday morning when she woke up the paper pad was completely full of a red fluid. When Louise stood up to use the bedside facilities red fluid was dripping on the floor. Louise was told she should not be doing physical therapy. Saturday morning when she woke up the pad was again full of a red fluid and Louise was again told she should not be standing and doing physical therapy. Pressure bandages were applied and by Saturday night there was very little red fluid oozing out of the wound. There is no physical therapy on Sunday. Today will make at least three straight days in which she has not done any walking physical therapy. I worry that the laying in bed without exercise will increase the chances of a return of C diff but the nurse told me that laying in bed without exercise has no effect on C diff rates. The only thing that affects C diff is whether or not the person is taking antibiotics.
> 
> One of the complicating factors is that Louise is on Coumadin. Coumadin helps to prevent clotting. She is on Coumadin because after such significant surgery the chances of a blood clot increase. However, because she is on Coumadin it becomes more difficult for clots to form to stop the red fluid from leaking out. (I have not seen the large amounts of red fluid therefore I do not know if it is actual blood or mostly plasma tinged with some red cells.)



I can empathize with a c-diff infection. When I broke my neck. I got a good case of It. It helped me lose 25 pounds And I am skinny to begin with ! Best of luck to her


----------



## Miss Vickie

Russell, I hope they're able to determine what's going on with Louise and why her incision is draining so much. It sounds like she should be re-evaluated by her surgeon; in the meantime, hopefully the results of her clotting factors are in and you know whether or not this is contributing to her problem.

And that's right, activity (or lack thereof) doesn't cause C. Diff infection, although lack of activity does contribute to pneumonia. So, she should still try to be up as much as she can, and when she can't, to be sure she's taking good, deep breaths and if they've given he an incentive spirometer, she should be using that. C diff happens, usually, from antibiotics killing off all the beneficial bacteria in the gut, allowing the nasties, like C diff and others, to over-populate. There is some research that seems to show that taking probiotic supplements helps prevent C diff infection. I'll see if I can find it for you today.

I hope she is feeling better and that they're getting some answers about all that wound drainage.

I did a quick search on google scholar and there are several small studies which seem to show a decrease in recurrent C diff diarrhea with probiotic use. Despite long term studies, they are considered a safe and hopefully effective option for prevention and adjunct treatment for C diff. Here is a link to an Uptodate article about their use. You'll have only limited access but it does reference other research articles which may be of interest to you.


----------



## Russell Williams

While Louise still has a problem with leakage it is no longer completely covering 2' x 3' pads overnight. About 25 of her 52 staples have been removed. The remaining ones are in the areas where there is still some leakage. She is walking further every day that she has therapy and she is doing it without pain. She is now able to lift both feet up and down and, without help, put them on the foot rest of the scooter she uses. She has not yet been approved to get in and out of bed on her own but, if no one has shown within 20 min. of the time she pushes the button, she gets out of bed or in bed on her own. 

She has been approved for getting in and out of our Van and today at one o'clock she has a doctor's appointment which she anticipates I will be taking her to. It is certainly possible that on the way back to the nursing home she may request a stop off at Taco Bell.

She has a desire to go to the regularly scheduled Saturday Texas hold 'em game. I pointed out to her that if she goes to the Saturday game she may be too tired for church on Sunday. She looked at me with an expression that indicated she thought I was saying something rather strange.


----------



## Russell Williams

Jack Secret said:


> I can empathize with a c-diff infection. When I broke my neck. I got a good case of It. It helped me lose 25 pounds And I am skinny to begin with ! Best of luck to her



Louise and I have had a year-long adventure with the C diff of Louise. Finally we were able to become the patients of a Dr. John Bartlett who apparently is one of the leading experts in the nation. Louise and I had already looked up and discussed what is known as a fecal transplant. It apparently is highly effective in cases in which all other methods have failed. Unfortunately, as best I understand what Dr. Bartlett was telling me, the relevant federal government authorities have not yet approved fecal transplants for use and, therefore, Johns Hopkins does not do them. Dr. Bartlett says there is a doctor in Canada who has publicly stated that, since the hospital he works out of does not approve it, he goes to people's homes to do fecal transplants. Fecal transplants can be done through the mouth (which gives a whole new meaning to the phrase "eat my") or through the rectum. Louise and I were never quite courageous enough or foolish enough to do it on our own. We use a medicine called vancomycin which, at the rate of four pills a day cost about $3500 a month. Fortunately, so far the insurance company has been willing to pay for it. If they start to balk at paying for it we will probably be looking at fecal transplant again.

While Louise was having bouts of C diff she went from about 395 to about 320 and did it in about six months. In the last year, even though she has been trying not to gain weight, she has gone back up to about 380. While I fear the results of the weight gain and never encourage her to eat or offer to bring candy home I am unable to prevent myself from enjoying the increasing size of her body. Louise understands this and is not offended by it.


----------



## cinnamitch

Russell Williams said:


> "The bummer is that it sounds like it's taking awhile to get those results back. In a hospital, we'd have them back in an hour and could progress from there but it seems a nursing home it takes longer? Any idea how long until he gets them back? Titrating anticoagulants is tough, and when you're waiting for test results, it makes it tougher."
> 
> Ms. Vicky, I thank you for your kind and comforting words. Saturday morning they took blood to do a test. Saturday noon they told Louise that they had not taken enough blood and that they would not be able to do another test until Sunday.



Sounds like the Doctor should have done a STAT lab order, that way it would have been done sooner and the results would have come in much sooner. It really sucks sometimes when waiting for lab results. Once it leaves the facilities doors, all are at the mercy of the lab and sometimes it isn't done in as timely a manner as one would like. Hopefully you will find out the results soon. Miss Vickie is right though those hip incisions can bleed A LOT, especially when you are on Coumadin.


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## Russell Williams

Update on Louise
Wednesday Louise got about half of her staples pulled out. She now has about 25 left. They are over the area were some seepage was still occurring. Thursday Louise walked, with a Walker, for about 300 feet. In occupational therapy she stood at the sink and pretend to wash dishes. She then stood at a cabinet and put dishes away. This is probably the first time in two or three years that she has been able to stand and do those tasks. During this whole activity time there was no significant leakage from her wound.

However:

She went to the heart Dr. for a regularly scheduled checkup. There it was discovered that Louise is now in atrial fibrillation. I commented that before she had always been in normal sinus rhythm. The Dr. said that about three weeks ago, during a chemical stress test, Louise had gone into atrial fibrillation but then come out of it. Since I first developed atrial fibrillation in 1976 and it was controlled by quinidine and digoxin until 1996 I asked knowledgeable questions. The doctor explained to me that studies had shown that whether or not atrial fibrillation was, through the use of drugs, turned back into normal sinus rhythm made no difference on long-term patient outcomes. However, in some instances the drugs used to turn atrial fibrillation back into normal sinus rhythm had negative effects upon the body. Therefore the Dr. was not recommending the use of quinidine, digoxin, or other such substances.

When we got back to the nursing home Louise commented that she probably should have told the Dr. about her belching. Louise said that for the past three or four days she has been doing more and more belching. Unfortunately, one possible cause of belching is a serious heart problem.

I wanted to spend the night but Louise forbade it. When I got home I called Louise up and forcefully told her that if she thought she was having a heart attack she should not just press the button and wait she should scream and scream and yell" heart attack!!!!" until somebody showed. I then waited until I was pretty sure the night nurse had come on and I called the night nurse, explained the situation, told her what I had told Louise, and asked her if she would be kind enough to look in on Louise every half-hour or so just to make sure she was still breathing and not in distress. The night nurse said that she would and I thanked her for her kindness.


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## Russell Williams

In my mind, Louise is a courageous activist.

There are those who are fat activists when surrounded by other fat activists. There are others who are fat activists when there are no other fat activists around. While she was in the hospital, and now that she is in the nursing home, some days Louise wears her No Diet Day T-shirt. I am not sure that I would have the courage to wear a No Diet Day T-shirt in the hospital and the nursing home.

Her wound is still leaking a bit but not enough to go through the dressings and get on her clothing. Last physical therapy session she had she was standing without a Walker or any other supporting item and playing volley balloon with a therapist. It is probably between four and five years since she would last have been able to do such a thing. She has greatly reduced the amount of painkillers she takes and much of the time her pain level is between a zero and three.

She has decided she's got to start keeping a record of the elapsed time between the time she pushes the call button and the time someone shows up. I believe it was Sunday that her roommate pushed the call button and then 10 min. later Louise pushed her own call button. After 50 min. a staff member wandered into the room to do something or other. The staff member was not responding to the call button. 50 min. beat the record set last week of 40 min. between the time the call button was pressed and the time someone responded to the call button.


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## Russell Williams

I wish to thank all of those especially Ms. Vicky who have been kind enough to make suggestions, correct me when I am wrong, and otherwise provide useful input on the situation with Louise.

Yesterday while Louise was taking occupational therapy she started leaking out of her wound. Soon the leakage was down her leg and onto the floor where, during the wipe up process, it filled a half of a towel with reddish fluid. The occupational therapy people told her to go back to bed.

Yesterday I was with Louise from about 3:45 PM to 8:30 PM.

During this time I noticed that some parts of her right leg, which is where the hip replacement surgery was done, felt hotter.

The nurse came in to change her dressing and the nurse observed that there were four lines going around her upper right leg. Each of these lines was about an inch wide and 6 to 8 inches long. Each of them seemed to be a little hotter than the surrounding tissue. The nurse said they're going to start her on antibiotics and the nursing home will try to get her in to see her surgeon today or tomorrow.. The nurse said that one possibility is that the fluid draining out of Louise has become infected and also is beginning to spread under the skin.

I said that it was possible that the antibiotic will not only knockout the bacteria in the fluid still in her body that it is possible that the antibiotic will knockout much of the good bacteria in her intestinal area and that once this is happened the C diff come roaring back. The nurse did not say anything indicating that she disagreed with my analysis of possibilities. As I departed I informed of the staff members I could see of Louise's history of getting systemic infections. About 11 PM Louise called me to tell me antibiotics have been started.


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## Miss Vickie

Oh no, Russell. It definitely sounds like she has a cellulitis infection and that's what the red lines were. It's good that you noticed that and that they have her on antibiotics, even though I understand your concern. Hopefully you guys caught it early enough and it can be treated quickly and effectively. The good news about the draining is that it gets the fluid out -- rather than trapping it inside. 

If you PM me your email address, I can email you a couple of articles from Up To Date, which is a database that is the go to place for information about pretty much everything. I've got two articles bookmarked -- one on c diff prevention, and one on the role of probiotics. They are referenced articles that your surgeon should pay attention to.

Just let me know, ok?


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## Russell Williams

Update on Louise.

Yesterday we went to see the surgeon who had closed her up. He looked at the wound and decided that there was nothing there to worry about. The antibiotic had been started the night before and the redness was diminishing. The surgeon said that if Louise had gone straight home he would probably have prescribed Keflex (?) but because Louise is in a nursing home he worries about MERSA and so he prescribed an antibiotic that will work, so far, on MERSA. Louise is still taking vancomycin and we will see whether or not it holds off the C diff. After seeing the surgeon Louise did her physical therapy and there was no leakage.

At the surgeon's office we waited for about 45 min. At one point Louise commented that she had not been given her a painkiller that morning. I asked her what her pain level was and she said it was about zero. That is probably the first time in two or three years that, without pain medication, her pain level has been zero. She asked the nursing home staff to reduce the amount of pain medication she is given. The person she talked to was a loss to understand why on earth she would want to have her pain medication level reduced.

The night before the visit to the surgeon I told Louise that she should probably make sure that they had not ordered an ambulance for her. Louise pointed out that the physical therapy staff had approved her getting in and out of the car. I pointed out that large organizations the right-hand often does not know what the left hand is doing. Thursday morning she found out that they had ordered an ambulance and she told them to cancel it. That round trip cancellation probably saved the insurance companies several hundred dollars.


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## Marlayna

This is good news, thanks for the update, and bless you both.


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## Russell Williams

Doctors tend to use complicated words, sometimes I try to follow their example.

Tuesday when Louise was getting a checkup from the surgeon who sewed her up I asked him if it's some point will be possible for her to lay on her back, spread her legs, and support a heavyweight. The Dr. seemed perplexed by the question so Louise said, "He wants to know if two fat people can have sex?".

The Dr. said," In time that will be possible."

That interaction reminded me of one several years ago when I was in a two bed hospital room. The doctor kept asking the elderly man in the other bed if he had been having an unusual amount of flatulence. The doctor kept asking the question in slightly different ways. Finally I called out, "The Dr. wants to know if you have been doing a lot of farting lately." The elderly man responded that he had been doing a lot of farting lately. The Dr. said something to the effect that I was a lot more graphic than the Dr. had been.


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## CastingPearls

Russell Williams said:


> Update on Louise.
> 
> Yesterday we went to see the surgeon who had closed her up. He looked at the wound and decided that there was nothing there to worry about. The antibiotic had been started the night before and the redness was diminishing. The surgeon said that if Louise had gone straight home he would probably have prescribed Keflex (?) but because Louise is in a nursing home he worries about MERSA and so he prescribed an antibiotic that will work, so far, on MERSA. Louise is still taking vancomycin and we will see whether or not it holds off the C diff. After seeing the surgeon Louise did her physical therapy and there was no leakage.
> 
> At the surgeon's office we waited for about 45 min. At one point Louise commented that she had not been given her a painkiller that morning. I asked her what her pain level was and she said it was about zero. That is probably the first time in two or three years that, without pain medication, her pain level has been zero. She asked the nursing home staff to reduce the amount of pain medication she is given. The person she talked to was a loss to understand why on earth she would want to have her pain medication level reduced.
> 
> The night before the visit to the surgeon I told Louise that she should probably make sure that they had not ordered an ambulance for her. Louise pointed out that the physical therapy staff had approved her getting in and out of the car. I pointed out that large organizations the right-hand often does not know what the left hand is doing. Thursday morning she found out that they had ordered an ambulance and she told them to cancel it. That round trip cancellation probably saved the insurance companies several hundred dollars.


Russell, I'm curious as to which new antibiotic was prescribed to hold off MRSA since I had it in 08 (VERY bad case) and was treated with vancomycin, which you're saying she's already taking, but also levaquin, the combination of which was very hard on my body but did the trick and brought my existing MRSA under control and eventually stopped it.


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## Russell Williams

She did not remember the name of the new antibiotic but she will try to find out what it is so that I may tell you and anyone else who is interested.

Louise is definitely feeling better

Thursday they did an echocardiogram on her. While one person did the echocardiogram another person had to keep her breasts out of the way. At the end of the echocardiogram Louise said that she could not resist saying to the breast holder, "Was a good for you?"

Another person in the room commented, "What happens in the echocardiogram room stays in the echocardiogram room."


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## Marlayna

Lol, yeah, a sense of humor can get us through the hard times. I'm so happy that things are going well.


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## Russell Williams

Louise can now go up and down a flight of four steps twice. She can stand for 10 min. while pedaling the arm cycle. Today we were both doing upper arm exercises and my arms got tired before hers did. Last night she was able to stand out of her wheelchair and give me a hug and kiss good night. She can stand alone for, I think the amount is, 15 min. Her incision is not leaking.

In the last two years she has several times been in this nursing home. Today there was a meeting and various staff members who have known her the whole time said that she is in far better shape than they have ever seen her before. She's supposed to come home Saturday.

Being a pessimist I worry because in September of 2010 when she was in this nursing home all systems were go for her to come home in four days and then a systemic infection developed that put her in a coma. That was followed by C diff and the combination of things weakened her so much that she could not get out of bed for a month and a half. She did not finally come home until 1 February and then it took the crews of two ambulances to get her in the house.


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## Marlayna

It sounds like she's doing really well, so don't let those pessimistic thoughts into your head. I know it's easier said than done, but not impossible.
We have to be strong for our loved ones when they need us most. Attitude is important in healing. Good luck to you both.


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## moore2me

Russell,

I am glad your wife is coming home. I know she will be more than ready to get out of public health care for a while and into her own house. 'Hope things go well for you guys. On an unrelated note, my niece starts her first day at her brand new RN job (she just graduated from college) on Monday. I have tried to give her a few tips, but she had so much to learn, her little cup was full most days. However, I will keep at it, trying to educate the caretakers, one at a time.

Back to Louise, is she still on the Coumadin? Will she be on it at home? If so, I have some tips for you guys. My mom, has been on and off coumadin for almost 40 years, most recently about 2 months ago. We had some problems with getting her dose right and her doc gave us warnings about what she could not eat. Some foods work against the desired effect of coumadin (keeping the blood thin). This can cause 2 problems - one is if her coumadin dose is stable and one or more of the foods counteracts the effect, then blood clots could form. 

The second problem is that if her clotting factors have been artifically lowered by diet, then her doc might raise her coumadin dose by mistake. When she stops eating the food(s) that caused the problem, "pow" you get a whole bucket of thinned blood, and the result of bleeding after therapy or activity, etc.

*I am enclosing some links that discuss this problem in more detail and give a list of foods to avoid (or at least keep constant in your diet). To summarize foods to avoid are ones rich in Vitamin K. *This includes:

*Some foods to avoid when on Coumadin*
Green, leafy vegetables & herbs
Liver
Avocados
Hummus (Garbanza beans or chick peas)
Grapefruit 
Lentils, Soybeans
Fermented soybean products
Multivitamins (Use no Vitamin K)
*Also read labels in vitamin enriched products (for example my mom drank a lot of Ensure. Ensure is enriched with Vitamin K.)
*
http://www.ihtc.org/payors/conditions-we-treat/clotting-disorders/coumadin-interactions-with-food/

http://www.coumadin.com/index.html
http://www.coumadincookbook.com/


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## moore2me

The editing feature of this board is on the fritz this afternoon. Please disregard the last two webpages on the above post. I was trying to delete them in Edit, but it would not work. Thanks. M2M


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## Russell Williams

If all goes well, in about one hour I will be picking Louise up and bringing her home. She has been in and out of this nursing home several times over the last 2 1/2 years. Those members of the staff who have been around for two and half years say that this is the best shape they have ever seen Louise in. One of the problems is she must make sure that the angle between her thigh bone and her backbone is never less than 90°. If it is less than 90° the new hip ball may pop out of the new hip socket. She has had a lifetime of often bending forward to reach for something or bending forward as she gets up out of a chair. She must be very careful to never, without thinking, reach for something or simply leaned forward as she is getting up out of a chair.

The past three years or so every time she was moving and often when she was not she was in pain. Pain makes enjoyment of life more difficult and it tends to destroy motivation to do things. Now, still or moving, she usually has no pain. She has talked with the doctor that prescribes her pain medication. Normally Louise takes a background pain medication that lasts for 24 hours and then take short-term pain medication for breakthrough pain. She and the Dr. both agreed that she no longer needs the background pain medication and will only need the short term pain medication occasionally. She gets tired of me asking her repeatedly what her pain level is on the 0 to 10 scale but in the past week the highest she is ever reported has been a three and usually it is a zero.

Louise loves flowers and on the front steps of the house loves to have pots with flowers growing in them. Because my legs hurt it is very painful for me to work in the garden. Yesterday Lori and I purchased some flowering plants for Louise, we bought some big flowerpots, and planted the flowering plants in the flowerpots and placed them on the front steps. When Louise comes home the conversation may go something like this:

R: I know you like flowers and so Lori and I purchased some flowering plants and put them in pots on the front steps.

L: How thoughtful.

Shortly after and as we get to the front of the house and Park.

L: What are those tomato plants doing in pots on the front steps?

R: You love flowers and I love tomatoes and in due course those tomato plants will have flowers so it works for both of us.

Yesterday I did not get the chance to plant the watermelon seeds in the remaining pots.


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## Russell Williams

Louise is home. She left the nursing home about noon and was well enough so that we promptly went to a free world Tavern poker session. We did not get back to the house to until after dark. Louise saw that I had thoughtfully planted some sort of plant the front steps. She thought that was very kind of me to put flowers there. She asked what kind of plant was and I told her that it was tomatoes. She knew I was joking and figured she'd look at it more closely in the daylight.


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## Marlayna

That's nice. Thank God it all worked out.


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## Russell Williams

Some of those who read this will be considering a hip replacement. Some of those who read this have people they know who are considering a hip replacement. I am not recommending that such unknown people get hip replacements. I'm simply providing information about one person.

Monday night Louise was on the phone talking to various friends. She talked from about nine o'clock until about 11:30 PM. Somewhere around 10:30 PM I realized that she had not done this in a long time. She was full of life, animated, and thoroughly enjoying what she was doing. Afterwards I asked her some pain level questions. For the two or three years before the hip replacement, with painkillers in her, her normal background pain level was about a three and often went much higher. When she was talking with people or playing games or even watching TV she always had the pain in her. Now, without painkillers, her normal pain level was zero therefore there is not the background pain level to interfere with her enjoyment of social activities.

Last night we were at a Texas hold 'em tournament and I asked the director if he had played that evening at the same table that Louise was playing at. He said he had. I asked him if he noticed any difference in Louise. I forget the exact word he used but he said that he noticed that Louise was much more (animated, full of life, joyous,?). He said something like that. Later in the evening I was talking with one of the friends that Louise had been talking with Monday night. The friend said much the same thing as the man at the Texas hold 'em tournament said.

As I previously stated Louise was approved for hip replacement surgery when she weighed 339 pounds and the hip was actually implanted when she weighed 376 pounds. The surgeon said that with the new hip, for person of her size, the hip can be expected to last for about 15 years. For a thin person the hip can be expected to last for 20 years but, if the thin person goes out and does a lot of running and jogging, the hip will probably only last for about 15 years.


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## Russell Williams

Saturday Louise spent eight hours playing free Texas hold 'em poker. After about five hours she was shivering and wearing a quilt. To me her forehead felt hot. I and others suggested she give up and go home. That was not an acceptable course of action. That night at bed time she took her temperature and I forgot to ask what it was. In the morning she told me it had been 100.1 but that by morning it was down to 99.4. By Sunday afternoon the lower portion of the hip replacement leg started to feel hot and sore. Although her temperature had gone down Louise suspected that cellulitis had started.

Monday we went to the urologist for a scheduled visit. The urologist felt that cellulitis was out of his specialty area. Today we went to the family physician who agreed with Louise that she had cellulitis. He started her on antibiotics and wrapped the leg. He said that it was not good to use lymphedema pumps in leg infections because that could pump the infection into the rest of the body.

I started asking questions. The physician said that the danger is that the cellulitis infection may go systemic. (Two or three times in the last three years Louise has had a urinary tract infection that went systemic). I asked further questions. If the infection goes systemic it may then attach itself to the new hip. I told the physician that I had read that once an infection gets into a new hip they usually wind up having to remove the hip and replace it. The physician did not contradict me.

Such a situation would be a very major disaster. I am very, very, concerned.


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## Marlayna

I hope to God that things improve for her. Take care of yourself, too.


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## Miss Vickie

Oh, Russell. I'm sorry to hear about this complication. It sounds like she's in good hands. Yes, you're right -- it could become systemic and it could affect the hip and it might lead to removal -- but those are steps way way way down the line.

Right now, all you know is that she has cellulitis and it's a very very treatable infection. I know it's easy to worry but try not to borrow trouble, ok? Sounds like you caught it early and I'm going to be optimistic that she will respond to the antibiotics. Remember, though, if she doesn't get better, get her back to the doctor or hospital so she can get bigger and badder antibiotics.

Hang in there, you guys.


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## Russell Williams

Yesterday Louise had her two-year follow-up. It was done by the surgeon who removed her cancerous uterus. He saw absolutely no signs indicating a return of the cancer. He said that if cancer is going to return it usually returns with in the two-year framework although he will be following her on a yearly basis for the next three years.

In addition, the cellulitis infection, while still there, seems to be less serious than it was. She will continue taking the antibiotics, as per doctor's orders, for the next several days.


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## Russell Williams

In the past, while going to Johns Hopkins and traveling the two or 3 mile stretch of Route 40 from Cook's Lane to the Orleans Street viaduct, an extremely bumpy road, I had to be very careful and relatively slow so that I did not hit the worst of the bones because every time I did hit one Louise would cry out in agony.

That was before the hip surgery.

Yesterday, traveling that section of Route 40, in both directions, going the speed limit or occasionally slightly over it, not once did Louise cry out in pain.


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## Russell Williams

Louise seems to beaten back the cellulitis. She has no fever, her lower leg is nor is it sore to the touch nor is it red and swollen. And, even though she was taking antibiotics, there's no sign the return of C diff. Louise is very happy that she is now leading a life without pain medication.


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## Russell Williams

As of about 6:30 PM Eastern daylight Time, Louise Wolfe has once again been admitted to the hospital. She has a fever of 101.3 and has a urinary tract infection. She has a white cell count of, I believe they said, 25 and I forget the number of zeros.

Right over top of the artificial hip that was put in about two months ago the skin has become red, hot, with a lot of bumps about the size of pennies. That red and inflamed spot was not there two days ago. There is also some suspicion that the cough she's been having for the last two weeks may be a sign of walking pneumonia. She has been started on antibiotics.


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## Marlayna

I'm so sorry, please keep us informed. I hope things improve soon.


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## Russell Williams

For the first time in several years Louise was out of pain, she no longer needed her pain killers, and walking did not hurt. For the first time in several years she could be happy and joyous without having to do it through constant background pain and the use of heavy painkillers. Her hip worked, there was no C diff, the cellulitis had finally been beaten, and she had no urinary tract infections. It was a period of great joy. It lasted five days.


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## Yakatori

Are you saying that the antibiotics aren't working?


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## Russell Williams

In the last three years, repeatedly the antibiotics have managed to beat back various infections of Louise has had. The problem has been that every time she stops the antibiotics the same or some other infection returns relatively soon.

From what I have read if an infection gets into the new hip joint there are no antibiotics that will get it out unless Louise is open up and somehow or other the hip joint is flushed with antibiotics. If that fails then the new hip must be pulled out and another one put in to replace it.

I presented the scenario to, if I correctly remember two doctors and two nurses. Unfortunately, none of them told me that I was wrong. The best I could get was a, "Well we're not there yet."


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## moore2me

Russell Williams said:


> In the last three years, repeatedly the antibiotics have managed to beat back various infections of Louise has had. The problem has been that every time she stops the antibiotics the same or some other infection returns relatively soon.
> 
> From what I have read if an infection gets into the new hip joint there are no antibiotics that will get it out unless Louise is open up and somehow or other the hip joint is flushed with antibiotics. If that fails then the new hip must be pulled out and another one put in to replace it.
> 
> I presented the scenario to, if I correctly remember two doctors and two nurses. Unfortunately, none of them told me that I was wrong. The best I could get was a, "Well we're not there yet."



Jez Russell, I sure hope Ms Louise does not have to have the flush or the replacement. I will be praying for you guys and put you on the man upstairs speed dial. M2M


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## Russell Williams

It appears that the infection did not get to the joint and Louise appears to be rapidly getting better. I am so very glad because I was so very worried.

Her urinary tract infection is an E. coli infection and the cellulitis infection is a gram-negative bacteria which is present in many people's digestive tracts. The gram-negative bacteria have a very long list of antibiotics that work agains it. The cellulitis on top of her new hip joint has pretty much disappeared and the area, while still a little bit red, is no longer hot. The cellulitis on her lower leg is still red but not as hot and no longer reaches to the black magic marker lines that were drawn at its top and bottom edges when the antibiotics were started. I am daring to hope that once again she has pulled through a very potentially dangerous situation.

She has, what I think is called a PIC line, and, as best I remember, the current plan is to give her IV drugs every day for at least 30 days. The remaining concern is that the C diff may very well return but so far, the oral vancomycin works against the C diff. If it doesn't there is the transplant or whatever it is they call it.

Again, I thank people for their kind words and kind thoughts.


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## Diana_Prince245

Russell Williams said:


> It appears that the infection did not get to the joint and Louise appears to be rapidly getting better. I am so very glad because I was so very worried.
> 
> Her urinary tract infection is an E. coli infection and the cellulitis infection is a gram-negative bacteria which is present in many people's digestive tracts. The gram-negative bacteria have a very long list of antibiotics that work agains it. The cellulitis on top of her new hip joint has pretty much disappeared and the area, while still a little bit red, is no longer hot. The cellulitis on her lower leg is still red but not as hot and no longer reaches to the black magic marker lines that were drawn at its top and bottom edges when the antibiotics were started. I am daring to hope that once again she has pulled through a very potentially dangerous situation.
> 
> She has, what I think is called a PIC line, and, as best I remember, the current plan is to give her IV drugs every day for at least 30 days. The remaining concern is that the C diff may very well return but so far, the oral vancomycin works against the C diff. If it doesn't there is the transplant or whatever it is they call it.
> 
> Again, I thank people for their kind words and kind thoughts.



It's a PICC line, and they're used pretty frequently. They're great for situations where longer term access to veins is needed for medication or when the medication is particularly irritating to veins (and many antibiotics are irritating). They're also used when somebody has veins that are hard to start IVs in because of scarring from past IVs (or IV drug use).

I hope Louise is out of the hospital soon.


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## Russell Williams

A staff member at the hospital came in, looked at the floor, and asked Louise what was all the brownish stuff on the floor. Unknown to everyone and not seen by x-rays an abscess had been building somewhere underneath the incision that had been used to insert the new hip. Last night it opened up through two spots in the incision and poured out. It is not yet known how deep the abscess reaches nor whether or not it involves the bone around the new hip.


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## Russell Williams

If Louise and I did not have good medical insurance by this point in time we will both be out on the street (Louise would have to wait to be put out in the street until she got out of the hospital)


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## moore2me

Russell Williams said:


> A staff member at the hospital came in, looked at the floor, and asked Louise what was all the brownish stuff on the floor. Unknown to everyone and not seen by x-rays an abscess had been building somewhere underneath the incision that had been used to insert the new hip. Last night it opened up through two spots in the incision and poured out. It is not yet known how deep the abscess reaches nor whether or not it involves the bone around the new hip.



Russell - 
1. Is there a way she can have a CAT scan to look at the abcess? Of course, you have to make sure the CAT will handle her current size and make sure the new hip doesn't have material that cannot be scanned?

2. You mentioned PICC line. There are some risks associated with PICC lines. Here is some info on that http://picclinenursing.com/picc_risks.html

3. Where would you like your medical knowledge certificate sent? I assume you will be awarded at least a Master's Degree?

4. I also assume Louise should also be awarded a citizen's version of the Purple Heart medal for her bravery, persistence, and composure under such difficult medical procedures and treatments.


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## Russell Williams

The saga continues. Part of the reason I tell this is because there are many people who know Louise Wolf and care about her. Another reason is that many of the people reading this will have to deal with hospitals and nursing homes and some of this information can be both a warning and a useful set of instructions.

The hospital wanted to send Louise home and have a home healthcare nurse come in once a day to administer the IV antibiotics. Had we not had insurance we would've had to do that but we do have insurance and with Louise having a PIC line and a draining sore on her hip and another draining sore on her calf- Situations that need to have dressings changed two or three times a day, and I having severe problems with walking-we decided to try for nursing home. Friday evening she was sent to a nursing home. There been so many things happened since Saturday that before this I have chosen not to post information that has probably become a boring litany of unpleasant things. Saturday I went to see Louise in the nursing home. Louise was experiencing pain and discomfort and difficulty when she was exiting or entering the hospital bed. I showed Louise and the hospital staff how to arrange the side rails so that Louise would have no trouble getting in and out of the bed. Louise had been rapidly gaining weight, probably because her fluid pills have been stopped. The bed had a scale on it but the bed scale was not working and they wanted to weigh Louise once a day by hauling her to a scale another floor. I fixed the bed scale so that it would work and Louise did not have to be removed from the bed in order to be weighed.

Sunday Louise called up crying and, as those who know her know, Louise very rarely cries. When her bandages were changed it would not take more than two or three hours to for them to fill with fluid and the fluid to start leaking out of the bandaged area. When Louise went to the bathroom she would leave bloody footprints and mess around the toilet. Since the toilet is shared with another room and therefore is shared with four people there were times in which she needed to go right away and the toilet could not be entered. She would then stand there bleeding and eventually voiding onto the floor and her clothes.

She did not want to upset the staff by leaving them messes to clean up and therefore was not going to the bathroom if her dressings were draining and therefore she was voiding in the bed.

I wished to change the staff behavior but to do it without yelling at them.. I told Louise that the primary goal must be to prevent her from voiding in the bed and that meant she had to go to the bathroom quite regularly, especially since they had just started giving her her fluid pills again. I told her that if her dressings had not been changed she must go even if she left bloody footprints. I told her that if the bathroom was occupied for more than about three or 4 min. she needed to get into her electric scooter and go to the nearest bathroom that was for general use. I told her that if she left a mess in the bathroom she should go to the nurse's station and tell what it happened.

Once a staff member showed up in Louise's room I told the staff member what I had told Louise and I told the staff person that if I had given Louise i incorrect advice please correct me and give Louise the correct advice and the correct way to handle her situation. In front of Louise the staff member said that my solutions were the correct ones. Now Louise had the staff telling her to go even if, because of the dressings not being changed, she was leaving bloody footprints. Louise now felt better.

Of course because she is taking antibiotics and has a history of C diff I am fully expect in the C diff to return in the very near future. 
But it makes me so happy that this beautiful wonderful talented and gifted woman has chosen to live with me. I am so fortunate.


----------



## Marlayna

Wow, you're both so strong. I'm in awe. Good luck and good thoughts sent your way.


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## Jack Secret

Miss Vickie said:


> Russell, I hope they're able to determine what's going on with Louise and why her incision is draining so much. It sounds like she should be re-evaluated by her surgeon; in the meantime, hopefully the results of her clotting factors are in and you know whether or not this is contributing to her problem.
> 
> And that's right, activity (or lack thereof) doesn't cause C. Diff infection, although lack of activity does contribute to pneumonia. So, she should still try to be up as much as she can, and when she can't, to be sure she's taking good, deep breaths and if they've given he an incentive spirometer, she should be using that. C diff happens, usually, from antibiotics killing off all the beneficial bacteria in the gut, allowing the nasties, like C diff and others, to over-populate. There is some research that seems to show that taking probiotic supplements helps prevent C diff infection. I'll see if I can find it for you today.
> 
> I hope she is feeling better and that they're getting some answers about all that wound drainage.
> 
> I did a quick search on google scholar and there are several small studies which seem to show a decrease in recurrent C diff diarrhea with probiotic use. Despite long term studies, they are considered a safe and hopefully effective option for prevention and adjunct treatment for C diff. Here is a link to an Uptodate article about their use. You'll have only limited access but it does reference other research articles which may be of interest to you.



I know I am really late on this post but I wanted to back up what Miss Vickie said about probiotics and C.diff. It took forever for me to get rid of my condition. I Kept my veins full of antibiotics for weeks without much change until my G.I. Dr. started me on big doses of prescription grade probiotics. I made my turnaround within a week and a half.


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## Jack Secret

Russell Williams said:


> The saga continues. Part of the reason I tell this is because there are many people who know Louise Wolf and care about her. Another reason is that many of the people reading this will have to deal with hospitals and nursing homes and some of this information can be both a warning and a useful set of instructions.
> 
> The hospital wanted to send Louise home and have a home healthcare nurse come in once a day to administer the IV antibiotics. Had we not had insurance we would've had to do that but we do have insurance and with Louise having a PIC line and a draining sore on her hip and another draining sore on her calf- Situations that need to have dressings changed two or three times a day, and I having severe problems with walking-we decided to try for nursing home. Friday evening she was sent to a nursing home. There been so many things happened since Saturday that before this I have chosen not to post information that has probably become a boring litany of unpleasant things. Saturday I went to see Louise in the nursing home. Louise was experiencing pain and discomfort and difficulty when she was exiting or entering the hospital bed. I showed Louise and the hospital staff how to arrange the side rails so that Louise would have no trouble getting in and out of the bed. Louise had been rapidly gaining weight, probably because her fluid pills have been stopped. The bed had a scale on it but the bed scale was not working and they wanted to weigh Louise once a day by hauling her to a scale another floor. I fixed the bed scale so that it would work and Louise did not have to be removed from the bed in order to be weighed.
> 
> Sunday Louise called up crying and, as those who know her know, Louise very rarely cries. When her bandages were changed it would not take more than two or three hours to for them to fill with fluid and the fluid to start leaking out of the bandaged area. When Louise went to the bathroom she would leave bloody footprints and mess around the toilet. Since the toilet is shared with another room and therefore is shared with four people there were times in which she needed to go right away and the toilet could not be entered. She would then stand there bleeding and eventually voiding onto the floor and her clothes.
> 
> She did not want to upset the staff by leaving them messes to clean up and therefore was not going to the bathroom if her dressings were draining and therefore she was voiding in the bed.
> 
> I wished to change the staff behavior but to do it without yelling at them.. I told Louise that the primary goal must be to prevent her from voiding in the bed and that meant she had to go to the bathroom quite regularly, especially since they had just started giving her her fluid pills again. I told her that if her dressings had not been changed she must go even if she left bloody footprints. I told her that if the bathroom was occupied for more than about three or 4 min. she needed to get into her electric scooter and go to the nearest bathroom that was for general use. I told her that if she left a mess in the bathroom she should go to the nurse's station and tell what it happened.
> 
> Once a staff member showed up in Louise's room I told the staff member what I had told Louise and I told the staff person that if I had given Louise i incorrect advice please correct me and give Louise the correct advice and the correct way to handle her situation. In front of Louise the staff member said that my solutions were the correct ones. Now Louise had the staff telling her to go even if, because of the dressings not being changed, she was leaving bloody footprints. Louise now felt better.
> 
> Of course because she is taking antibiotics and has a history of C diff I am fully expect in the C diff to return in the very near future.
> But it makes me so happy that this beautiful wonderful talented and gifted woman has chosen to live with me. I am so fortunate.



as long as this is been going on (I don't know what made her sick to begin with). I really would start questioning the quality of care she's getting. Dude, this is been going on for way too long. I sure wish her the best But this whole story is just sounding more and more awful for you guys!


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## cinnamitch

Russell Williams said:


> The saga continues. Part of the reason I tell this is because there are many people who know Louise Wolf and care about her. Another reason is that many of the people reading this will have to deal with hospitals and nursing homes and some of this information can be both a warning and a useful set of instructions.
> 
> The hospital wanted to send Louise home and have a home healthcare nurse come in once a day to administer the IV antibiotics. Had we not had insurance we would've had to do that but we do have insurance and with Louise having a PIC line and a draining sore on her hip and another draining sore on her calf- Situations that need to have dressings changed two or three times a day, and I having severe problems with walking-we decided to try for nursing home. Friday evening she was sent to a nursing home. There been so many things happened since Saturday that before this I have chosen not to post information that has probably become a boring litany of unpleasant things. Saturday I went to see Louise in the nursing home. Louise was experiencing pain and discomfort and difficulty when she was exiting or entering the hospital bed. I showed Louise and the hospital staff how to arrange the side rails so that Louise would have no trouble getting in and out of the bed. Louise had been rapidly gaining weight, probably because her fluid pills have been stopped. The bed had a scale on it but the bed scale was not working and they wanted to weigh Louise once a day by hauling her to a scale another floor. I fixed the bed scale so that it would work and Louise did not have to be removed from the bed in order to be weighed.
> 
> Sunday Louise called up crying and, as those who know her know, Louise very rarely cries. When her bandages were changed it would not take more than two or three hours to for them to fill with fluid and the fluid to start leaking out of the bandaged area. When Louise went to the bathroom she would leave bloody footprints and mess around the toilet. Since the toilet is shared with another room and therefore is shared with four people there were times in which she needed to go right away and the toilet could not be entered. She would then stand there bleeding and eventually voiding onto the floor and her clothes.
> 
> She did not want to upset the staff by leaving them messes to clean up and therefore was not going to the bathroom if her dressings were draining and therefore she was voiding in the bed.
> 
> I wished to change the staff behavior but to do it without yelling at them.. I told Louise that the primary goal must be to prevent her from voiding in the bed and that meant she had to go to the bathroom quite regularly, especially since they had just started giving her her fluid pills again. I told her that if her dressings had not been changed she must go even if she left bloody footprints. I told her that if the bathroom was occupied for more than about three or 4 min. she needed to get into her electric scooter and go to the nearest bathroom that was for general use. I told her that if she left a mess in the bathroom she should go to the nurse's station and tell what it happened.
> 
> Once a staff member showed up in Louise's room I told the staff member what I had told Louise and I told the staff person that if I had given Louise i incorrect advice please correct me and give Louise the correct advice and the correct way to handle her situation. In front of Louise the staff member said that my solutions were the correct ones. Now Louise had the staff telling her to go even if, because of the dressings not being changed, she was leaving bloody footprints. Louise now felt better.
> 
> Of course because she is taking antibiotics and has a history of C diff I am fully expect in the C diff to return in the very near future.
> But it makes me so happy that this beautiful wonderful talented and gifted woman has chosen to live with me. I am so fortunate.



Is she in the Transitional Care Unit of the nursing home?


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## cinnamitch

Couple of quick suggestions. Ask for a bedside commode. For her hip wound have they considered a wound vac? Also if she is not in a nursing homes Transitional Care Unit, she needs to be on one. Lower staff to patient ratios and nurses more qualified in post surgical wound care.


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## Russell Williams

Louise was sent to the nursing home on Friday. Yesterday she discovered that she was in a first class room and was expected to pay extra money because she was there. Louise demanded to be put in (what I choose to call) a third class room and that she should not be charged for being in a first class room for four days.

So far the following differences I have discovered between a first class room and a third class room.

One) first-class rooms have bedside TVs that are mounted to the wall and on flexible arms that allow the patient to position the flatscreen TV within 2 1/2 to 5 feet of their face. Third class rooms only have TVs if a family member has brought a TV to the room. First-class rooms have nice phones which can be put right next to the bed. Third class rooms have no phones. First-class room people can go to the lounge where, during most of the day, they have an activities director who will get games for you, play a game with you if you have no partner, and provide you with free soft drinks. Third class people are not allowed in the lounge. There may be other differences but I have not yet discovered them.


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## Russell Williams

Every 24 hours, 8 PM Louise is supposed to get IV antibiotics through her PIC line. Last night at about nine o'clock she was told that all of the IV antibiotics had disappeared out of the refrigerator and that they need to order more IV antibiotics. Finally, at 3 AM the IV antibiotics arrived and were started on Louise. Louise was told that, since the IV antibiotics are supposed to be given every 24 hours, from now on they would wake her up at three in the morning to give her IV antibiotics.

Louise's stools are becoming looser and looser and we are both assuming that the C diff is returning. Since potentially four people share the bathroom that Louise uses Louise told the staff that the toilet, the grab bars next to the toilet, and the sink and the immediate area around the sink needed to be wiped down with something with bleach in it every time Louise used the bathroom. (Louise did offer to have me bring in the bedside commode and I forget what the staff's objection to that was)

The staff told Louise that to protect the other users of the bathroom from C diff the custodial staff would be told to flush the toilet twice when they clean the bathroom and to clean it more often. At nine o'clock last night Louise used the bathroom and told the staff that she'd used the bathroom. Louise was informed that the custodial staff went home at 8 PM.

We have some Clorox wipes which, in print that I did not see when I bought them, do not have any bleach in them. These wipes are in one of these pop up plastic containers. It takes bleach to kill C diff germs. Hoping I would not generate any noxious fumes I added some bleach to the pop up plastic containers. Louise asked me to bring these wipes in. Louise felt that in good conscience she should inform her roommate of what the situation is. Louise reports that the roommate is not happy with the staff proposal for the proper cleaning regimen for the bathroom. (The roommate is probably is not happy about being in a room with someone who has C diff  if she has an


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## Webmaster

All my best to Louise, Russell. It is awful that she has to go through all this.


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## Russell Williams

Webmaster said:


> All my best to Louise, Russell. It is awful that she has to go through all this.



I hope that some who do not know Louise will be more prepared for what they may face in nursing homes.


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## Russell Williams

The bad news is that she now officially has C diff. However we both expected that to happen. Louise has now been told that while staff is not allowed to use Clorox in the bathroom supervisors are allowed to use Clorox in the bathroom. The reason given is that Clorox will ruin the tile. Louise actually convinced them that in the past Flagyl did not work and so Louise has been started on vancomycin. The problem with vancomycin is, at four pills a day, a month supply cost $3000. Fortunately, so far the insurance covers it. If the insurance stops covering it we are in deep do do. I need to call the insurance company up and find out if there is a lifetime limit on payments to the patient and their doctors.

I explained previously about Louise not getting her IV antibiotics until 3 AM and being told that in the future she would have to get them at 3 AM every morning. Tonight the person on duty explained that since the computer said that Louise was supposed to get her antibiotics at eight o'clock she would have to get them according to the computer schedule and so she got them at nine o'clock.

I refuse to get upset about the food because I consider it not a major problem. Louise however does get upset when a dietitian comes in and she and Louise carefully discuss what she will be having for her three meals each day and the dietitian carefully writes it down and then the food that actually shows up bares little or no resemblance to what was discussed and written down.


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## moore2me

Dear Russell,

What you have described happen in Louise's room is deplorable infection control practice. Louise should not be made a culprit of passing C diff to her room-mate. C diff can be a death sentence to some folks - especially the infirmed in a nursing home. If you are in the state of Maryland, the health authorities should be notified about the danger to other residents. As usual, I am copying some links and info from Maryland's regs. Also, since the nursng home receives money from Medicaid/Medicare - federal regs also apply. If the home wants to keep getting federal reimbursement, it has to follow federal requirements. If you or Louise does not want to file a complaint, you can complain anonymously to your state elderly resource person - called an Ombudsman.




http://www.ltlmagazine.com/news-item/hhs-action-plan-has-reduced-healthcare-associated-infections
*
Rates of Clostridium difficile, which kills 14,000 Americans each year and adds an estimated $1 billion in extra costs to the healthcare system, remain historically high, HHS said.*

A separate recent CDC report showed that 75 percent of C. difficile infections now begin in medical settings outside hospitals, such as nursing homes and outpatient clinics.

An announcement of the request for public comments on the National Action Plan will be published in the Federal Register the week of April 23, HHS said.
*Report from CDC. (Russell, you and Louise should submit commits to this bunch. It will help people in the future who are facing the same fight you are in. You may even get to testify to a Congressional committee.)

Making Health Care Safer Stopping C. difficile Infections*
http://www.cdc.gov/vitalsigns/HAI/index.html
C. difficile germs move with patients from one health care facility to another, infecting other patients.

* Half of all hospital patients with C. difficile infections have the infection when admitted and may spread it within the facility.
 The most dangerous source of spread to others is patients with diarrhea.*


*Doctors and Nurses Can*:
 Prescribe antibiotics carefully (see http://www.cdc.gov/getsmart/specific-groups/hcp/index.html). Once culture results are available, check whether the prescribed antibiotics are correct and necessary.

 Order a C. difficile test (preferably a nucleic acid test) if the patient has had 3 or more unformed stools within 24 hours. 

 Be aware of infection rates in your facility or practice, and follow infection control recommendations with every patient. This includes isolating patients who test positive for C. difficile infection and wearing gloves and gowns to treat them.

*Patients Can:
* Take antibiotics only as prescribed by your doctor. Antibiotics can be lifesaving medicines. 
 Tell your doctor if you have been on antibiotics and get diarrhea within a few months. 
 Wash your hands after using the bathroom. 
 Try to use a separate bathroom if you have diarrhea, or be sure the bathroom is cleaned well if someone with diarrhea has used it.
What Can Be Done

*Federal Government Is:*
 Tracking and reporting national progress toward preventing C. difficile infections in many types of health care facilities. These programs help track the size of the problem, antibiotics used, and people at risk. 
 Promoting C. difficile prevention programs and providing gold-standard patient safety recommendations
(see http://www.cdc.gov/HAI/organisms/cdiff/Cdiff_infect.html. 

*Maryland Nursing Home requirements* (below)
http://dhmh.maryland.gov/SitePages/Home.aspx
http://dhmh.maryland.gov/ohcq/SitePages/Regulations.aspx

*Making a complaint in a Maryland Nursing home *(links below)
http://voicesforqualitycare.org/MDOmbMan.pdf
http://www.voicesforqualitycare.org/id176.htm
http://www.voicesforqualitycare.org/id77.htm

http://www.cdc.gov/hai/pdfs/toolkits/CDItoolkit2-29-12.pdf Cleaning Rooms with C Diff


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## moore2me

Russell Williams said:


> The bad news is that she now officially has C diff. However we both expected that to happen. Louise has now been told that while staff is not allowed to use Clorox in the bathroom supervisors are allowed to use Clorox in the bathroom. The reason given is that Clorox will ruin the tile.
> 
> *I am shocked that the nursing home values the cost of their precious bathroom tile more than they do the lives of the other patients using the communal restroom. Since the cleaner go home at 8 PM - there is plenty of time to expose others to C diff. Louise is just trying to save some lives.*
> 
> Louise actually convinced them that in the past Flagyl did not work and so Louise has been started on vancomycin. The problem with vancomycin is, at four pills a day, a month supply cost $3000. Fortunately, so far the insurance covers it. If the insurance stops covering it we are in deep do do. I need to call the insurance company up and find out if there is a lifetime limit on payments to the patient and their doctors.
> 
> *Why are you guys having to pay out of your pocket for an infection Louise caught in a hospital? I would think the place she contracted this infection from should be paying the lion's share of the bill. Is there a record when she caught this stuff? Can you lawyer help you with this?*
> 
> I explained previously about Louise not getting her IV antibiotics until 3 AM and being told that in the future she would have to get them at 3 AM every morning. Tonight the person on duty explained that since the computer said that Louise was supposed to get her antibiotics at eight o'clock she would have to get them according to the computer schedule and so she got them at nine o'clock.
> 
> I refuse to get upset about the food because I consider it not a major problem. Louise however does get upset when a dietitian comes in and she and Louise carefully discuss what she will be having for her three meals each day and the dietitian carefully writes it down and then the food that actually shows up bares little or no resemblance to what was discussed and written down.



*I think in this tragic Greek comedy of errors that the food deal is hilarious. I think Louise should ask who is getting her pre-ordered food. Someone in the nursing home probably ordered what Louise is eating. Also, since C diff is transmitted ususally by a fecal/oral route - the authorities should not be so casual about what happens to Louise's meals.*

*(Is the nursing home run by Moe, Larry, and Curly or by Simon Legree?)*


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## CastingPearls

I'm horrified by how this nursing home is treating Louise and doubtless many other patients. God help those who have no insurance at all.

EDT: Russell, please consider a consult with an attorney. First consult is normally free. I think you need one. Immediately. Because we're not talking about quality of life at this point. We're talking negligence to the degree of 'quantity' of life.


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## Russell Williams

And I've been copying these posts to him.


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## Russell Williams

Louise entered the nursing home last Friday. Since then she has been pushing to get a sponge bath. Today, Thursday, they took her to the shower room and gave her a sponge bath. Because Louise is taking fluid pills again she gives off a lot of fluid and her bedclothes were pretty well soaked. Before she left for the shower room she took all of her wet bedclothes and put them in a ball in the center of the bed and took down one quarter of the fitted sheet to indicate that it was time for fresh sheets to be put on the bed. When she got back from the shower room she saw that the bed had been very neatly made with all the pads and sheets properly placed in the bed. As she started to get into bed she found out that the bed had been remade using the urine soaked sheets. Louise refused to get into the bed until it was changed and fresh clean and dry sheets put on it.

Because of some of Louise's special needs due to the type of wounds she has, in her closet, a bag of specialized supplies including sterile gauze dressings and the special type of tape that her skin needs for the sterile gauze dressings to be attached to her. Louise had been wearing a T-shirt which also become urine soaked while she was laying in bed. The urine soaked T-shirt had been put in the bag and on top of the specialized sterile dressings and other supplies.


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## moore2me

Russell,
I can barely read your posts without getting so mad I could bite myself. If you give me the name of the home, I will turn them in using my name.


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## Russell Williams

Last night when I talked to Louise. I told her that on the dimensions board I was being encouraged to talk to the state and federal authorities and being provided with addresses to send information to. Louise told me that she wished that I would not do such a thing. I am not yet ready to do something that Louise is explicitly told me she does not want me to do.

What is going on?

From what I observe, Louise is very willing to stand up for the rights of others especially if they are fat people being discriminated against. She is less willing to stand up for her own rights. She has mentioned that she is afraid that she will be banned from all the nursing homes in this County. Because of her size she is already banned from most of the nursing homes in this County.

I have told Louise that I would like to make copies of all the posts I've made about events in this nursing home. I would then like to take copies of these posts and show them to the administrators of this nursing home.. I plan to explain to them that I have been not only posting this on the dimensions board. I have also been sending copies of them to the leaders of my church and to the local equivalent of the Council of churches where many ministers will be able to read them. I would then tell the administrators that there is a very good chance that one of the ministers in the Council of churches or the church leaders of my church will ask me which nursing home Louise is in. I will then ask the administrator, "When they ask me that question what should I say?" I hope to do that today.

Louise told me that last night, at some point, it was mentioned that she had had her bedtime snacks to eat. She told the staff member that she had not gotten a snack. An investigation was done and Louise was told that, while the snacks had been brought to the floor, the previous shift had not done their job and passed them out. On the whole floor Louise was the only one who had mentioned the lack of snacks. I do not consider this to be a major problem but rather indicative of the whole situation.

Yesterday, with a walker, Louise walked about 200 feet. She also walked up and down a flight of low steps the top of which was 4 feet above the floor. The wound surgeon looked at Louise's two wounds and says that neither seems to be a cause of concern. The wound over her hip replacement has no redness nor heat. In 24 hours it did leak about two thimbles full of clear fluid. The wound on her lower leg was cut into and is currently about half the size of a dime and perhaps three dimes deep. The Dr. said that the wound no longer needs to be packed but only to have the dressing changed twice a day. I watched one of the hospital staff change the dressing on Louise's leg. I trust my ability to maintain sterility more than I trust what I saw. The plan is to stop the IV antibiotics on Tuesday. At that point Louise wants to go home even if it is against medical advice. She has started vancomycin and the C diff has not gotten worse. Louise tells me that her roommate, who also had a hip replacement had a redness and swelling all along the line of the surgery. An appointment was set up for the roommate to go to be seen by a Dr. No arrangement was made to transport her there although her son was apparently told the transportation would be provided. The woman, with recent hip surgery, was transported to the doctor's appointment in her sons(I believe it was) Corvette. The Dr. looked at the wound and sent the woman straight to the hospital.

I thank all of those people who have taken the time to provide advice and links to Louise and I as we work our way through this situation. So many different things have happened to Louise in the last three years I becoming desperately afraid that one of these times she will not recover.


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## Russell Williams

Louise just called with an update. 

Louise told me that the director of nursing came in to see her and told Louise that she did not wish to discuss anything that happened before yesterday. Louise said that when she described some of the events of yesterday the director of nursing told Louise that each of those problems had been fixed. 

Louise then proceeded to tell me about a whole bunch of things that were happening to her and her environment. The following is a very partial list: In the bathroom, for three days there was a feeding bowl and spoon apparently used with one of the men on the other side. Somebody opened up a box of something and left the box top on the sink. After three days Louise was the one that put it in the trashcan right under the sink. Louise was using the soap dispenser and somehow knocked it loose and it fell to the sink counter. It is still there. After she uses the toilet she frequently experiences great difficulty in getting someone to wipe and clean her. She often winds up doing it herself.


I decided to post the name, address, and phone number of the nursing home. I realize that this will anger Louise but I decided that for the sake of everybody else in that nursing home I need to do at least that much. This particular nursing home is not listed in the three different phone book Yellow Pages that I looked at. Because of my trouble with names I do not remember the name although I will recognize that once I see it.

I will see Louise tonight and hope to collect the information at that time.

Louise said that the motto of the places something to the effect of, "We treat you like they do at home." Louise commented to me that if I treated her like that we would have been separated and divorced by now.

I think I have to risk the wrath of Louise. Louise cannot be the only one in the nursing home that is being given this kind of treatment and many of them are not as smart or as verbal as Louise is. I cannot continue to sit and cursed the darkness. I must somehow try to light a candle.


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## Russell Williams

In light of Louise's desires I provide this information in case any of you are looking for a nursing home for yourself or for family or friends of yours.

http://juliamanor.org/

Our focus is on providing excellent skilled nursing care, outstanding rehabilitation services and attention to detail in everything we do. Julia Manors professional staff works diligently to accommodate you whether the length of stay is anticipated to be many years or just a few weeks.
To arrange for a personal tour of our facility and a free consultation "click here" or call 301-665-8700.
Everything is running smoothly
in house keeping, laundry and our floor
technician department for the past three
months.
In housekeeping, we have two
housekeepers on the third floor, three on
the second floor and one on the first floor.
Part-time evening housekeepers will be
hired, to help clean dining rooms after
evening meals. They will also help on the
nights that we have Candlelight Dinners.
The laundry department has had no
change in employees and continue to do
an excellent job of inspecting residents
personal items for wear and tear.
- Rochelle Shawyer, Housekeeping

Greetings friends, families, co-workers and most importantly our family of residents.
During the last few months, I have really enjoyed meeting all of you. It has been a
pleasure being able to provide quality professional care and services to each of you. Our
focus is on providing excellent skilled nursing care, outstanding rehabilitation services and
attention to detail in everything we do. This could not be possible without our professional,
dedicated, and hardworking staff who works diligently to accommodate all your needs.
I would also like to take this opportunity to remind everyone about the monthly
candlelight dinners. Please come out and enjoy some good food and socialization with your
loved one. I look forward to seeing you there!
- Nola Blowe LNHA, Administrator


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## cinnamitch

Julia Manor only received a 2 star rating from Medicare, not good at all. I would definitely report them to state and to Medicare. They have been cited for not having adequate nurse staffing. Sounds like it needs a surprise inspection.


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## Russell Williams

Greetings friends, families, co-workers and most importantly our family of residents.
During the last few months, I have really enjoyed meeting all of you. It has been a
pleasure being able to provide quality professional care and services to each of you. Our
focus is on providing excellent skilled nursing care, outstanding rehabilitation services and
attention to detail in everything we do. This could not be possible without our professional,
dedicated, and hardworking staff who works diligently to accommodate all your needs.
- Nola Blowe LNHA, Administrator[/QUOTE]

Louise provided me with the following information. This morning a man who can only use the bathroom with assistance used the bathroom that Louise uses. After he and the assistant left Louise went in and found poop on the seat and on the floor around the toilet. Eventually that was cleaned up. Later on the same man went into the bathroom, with assistance, and the toilet was not flushed. Louise talked with one of the aides who, when called, comes when Louise's uses the bathroom and who cleans up behind Louise. The aide said that no one had ever told her anything about using bleach. Someone came in to give Louise her insulin. The man insisted that he had to give it to her on the sliding scale because that's with the rules said. Louise said no there were rules that said that Louise got to tell them how much to give. The man went and looked and found out that yes they were rules that said Louise was to tell them how much insulin to give her. Apparently the man was also planning to give her IV treatment at about one o'clock instead of the 8 PM when she is supposed to receive it.


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## Russell Williams

Conrad, I hope that you do not require that the threat be deleted. As the situation gets worse and worse and Louise comes closer and closer to deciding that she's going to talk to the authorities about it (please do not tell her that I have already sent some e-mails to some of the addresses given to me) it is at least possible that I will be asked to describe exactly when did these various things happen and the posts I have made here are a running record. I never expected it to get this far, this complicated, and this (I'm not sure what a good adjective might be  appalling  disgusting - outrageous  something like that

The following is not crucial but it is at least interesting  tonight at dinner my spinach smelled sort of like cigarette ash and so did Louise's. I was afraid to eat it because I do not know what spoiled spinach smells like. Perhaps it smells like cigarette ash. I commented to one of the food workers that the spinach smelled like cigarette ash. She said she did not know and that she does not eat the food. Later, when no one else was in the dining room I believe it was the same worker who quietly said to me, all of the spinach I served tonight smells like cigarettes.

I've already mentioned about the shared toilet being covered with poop. After Louise uses the toilet now she rings the call bell and people respond very quickly and she is told that it will be cleaned. She then places a piece of toilet paper on the toilet seat to see whether or not it is still there the next time she uses the toilet. This evening, Friday, June 15, 2012, a man from the other room used the toilet. When he uses the toilet he is always accompanied by staff. When Louise went in she found that presumably the toilet user had left some sort of clear body fluid on the seat that was sticky enough to hang down from the seat toward the water. Louise turned on the call light and somebody came quickly and Louise said "Does this toilet look usable to you?" The person used regular body soap and a paper towel to clean the top of the seat and wiped it off with a hospital gown. He did not clean off the side of the toilet seat, the bottom of the toilet seat nor anything else in the room. The person explained that after the custodian staff went home at eight o'clock the people still on duty had no access to regular cleaning supplies. Louise took the bleach wipes that I made for her and went to the first floor to the public toilet. She used it, she used the bleach wipes to wipe down everything that she had touched, and then, since it was a place where staff members who cleaned the public toilet were supposed to put their names and the time they cleaned it Louise added her name to the list and put down her room number.

Louise took a blank copy of their cleaning record and taped it to the door of her bathroom. She plans to tell people to sign it after they cleaned the toilet.


	Note The above has been read to Louise and she has made the appropriate corrections and says that it is now correct.  Louisa said that she is not so sure whether I am her Boswell or her Watson. For obvious reasons I did not read Louise the sentence between the parenthesis.


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## Russell Williams

These events are occurring at Julia Manor, the one behind Bester Elementary School. The events I have described are, to the best of my ability an accurate rendition of what Louise has told me. A few of them have been read back to Louise before I e-mailed them. If others have different memories and interpretations I would not want it to be automatically assumed that my memories and interpretations were correct. I'm trying to simply describe the activities without value judging them.

8:53 AM June 16, 2012 Louise calls to report the following:

About three o'clock in the morning Louise pulled the call button and an aide came. Louise asked the aide what they used to clean the bathroom with. The aide went out and pretty soon the nursing supervisor came in. The nursing supervisor explained that at eight o'clock the cleaning staff on home and they lock the cabinet so in the evening no one can get access to the cleaning supplies. Louise pointed out that she had a special situation and the bathroom needed to be cleaned with bleach. The nursing supervisor went out and after while came out with a bottle of bleach that she found supposedly in a shower somewhere. The nursing supervisor explained that there was no need for the cleaning supplies to be available at night because "This is not normally a problem". (The above was read to Louise Wolfe and she said that, to the best of her knowledge and belief, it was correct)

Research question: Some of the people reading this take care of people who are in hospitals or nursing homes. Have you ever had a situation in which a patient used the bathroom in the middle of the night? Have you ever had a situation in which the bathroom should be cleaned up after the patient used the bathroom?


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## Diana_Prince245

What I've seen in cases of C-Diff in facilities is that the person is placed in isolation -- private room, private bath, staff and visitors gown and glove up before entering the room, hands must be washed with soap before leaving the room (ie. hand sanitizer doesn't kill C-Diff). I have not noticed the bathroom being cleaned after each use, but that doesn't mean the aides aren't doing it. There are usually cleaning supplies in the bathroom, which isn't normally the case.


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## Russell Williams

Diana_Prince245 said:


> What I've seen in cases of C-Diff in facilities is that the person is placed in isolation -- private room, private bath, staff and visitors gown and glove up before entering the room, hands must be washed with soap before leaving the room (ie. hand sanitizer doesn't kill C-Diff). I have not noticed the bathroom being cleaned after each use, but that doesn't mean the aides aren't doing it. There are usually cleaning supplies in the bathroom, which isn't normally the case.



In this case Louise shares the bathroom with someone in another room. Louise has not mentioned any cleaning supplies in the bathroom except for hand soap and the bar of Dial soap that we brought in. Louise has been leaving a piece of toilet paper on the toilet seat after she uses the toilet. One time, after the person the other room, with the help of an aide, had used the toilet and left some clear sticky fluid on the toilet seat the piece of toilet paper was still there. Louise did not understand how that could have happened. I suggested that perhaps the person was simply coughing up a lot of clear phlegm and hit the toilet seat instead of the toilet.


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## Russell Williams

Diana_Prince245 said:


> What I've seen in cases of C-Diff in facilities is that the person is placed in isolation -- private room, private bath, staff and visitors gown and glove up before entering the room, hands must be washed with soap before leaving the room (ie. hand sanitizer doesn't kill C-Diff). I have not noticed the bathroom being cleaned after each use, but that doesn't mean the aides aren't doing it. There are usually cleaning supplies in the bathroom, which isn't normally the case.



actually, when Louise was in the hospital with C diff the gowns and gloves and handwashing were what were used. Here there are no gowns, no gloves, and no instructions on handwashing before leaving the room. Louise eats in the main dining room with other residents. As best I remember the people who picked up her tray when she is finished eating in the dining room do not wear gloves. I know that they do not wear a mask or a gown


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## Diana_Prince245

Russell Williams said:


> actually, when Louise was in the hospital with C diff the gowns and gloves and handwashing were what were used. Here there are no gowns, no gloves, and no instructions on handwashing before leaving the room. Louise eats in the main dining room with other residents. As best I remember the people who picked up her tray when she is finished eating in the dining room do not wear gloves. I know that they do not wear a mask or a gown



Russell, you or Louise should ask to see the facility's policies for dealing with diseases such as C-Diff, MRSA, and VRE. I can't fathom that isolation isn't required for all three anywhere. The facility may not be following their own rules, and they are placing everyone in the facility at risk for C-Diff by doing so.


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## Russell Williams

Diana_Prince245 said:


> Russell, you or Louise should ask to see the facility's policies for dealing with diseases such as C-Diff, MRSA, and VRE. I can't fathom that isolation isn't required for all three anywhere. The facility may not be following their own rules, and they are placing everyone in the facility at risk for C-Diff by doing so.



Your experience has been gowns, and handwashing, and gloves. In this nursing home the medical professionals have told Louise, who has a nagging cough and has been diagnosed with C diff, that today she can go out and spend four hours at a free poker tournament playing cards.


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## Diana_Prince245

Russell Williams said:


> Your experience has been gowns, and handwashing, and gloves. In this nursing home the medical professionals have told Louise, who has a nagging cough and has been diagnosed with C diff, that today she can go out and spend four hours at a free poker tournament playing cards.



Yes, gowns, gloves, and handwashing until the course of vanco is complete and there are three days of negative stool samples in a row.


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## moore2me

Russell Williams said:


> (snipped)
> 
> 8:53 AM June 16, 2012 Louise calls to report the following:
> 
> About three o'clock in the morning Louise pulled the call button and an aide came. Louise asked the aide what they used to clean the bathroom with. The aide went out and pretty soon the nursing supervisor came in. The nursing supervisor explained that at eight o'clock the cleaning staff on home and they lock the cabinet so in the evening no one can get access to the cleaning supplies. Louise pointed out that she had a special situation and the bathroom needed to be cleaned with bleach. The nursing supervisor went out and after while came out with a bottle of bleach that she found supposedly in a shower somewhere. The nursing supervisor explained that there was no need for the cleaning supplies to be available at night because "This is not normally a problem". (The above was read to Louise Wolfe and she said that, to the best of her knowledge and belief, it was correct)
> 
> Research question: Some of the people reading this take care of people who are in hospitals or nursing homes. Have you ever had a situation in which a patient used the bathroom in the middle of the night? Have you ever had a situation in which the bathroom should be cleaned up after the patient used the bathroom?



In answer to your bathroom use question, of course people have to go to the toilet in the middle of the night. (One thing that might decrease the amount of toilet trips in a nursing home is that many of the residents wear adult diapers and due to their weakened physical state cannot get up and use the toilet without assistance.) It would be interesting to get a % of the Manor's residents that use the toilet unaided. You would also have to calculate the number that use adult diapers.

As to our own personal experience, I spent a week in a hospital once with a bad skin problem. The hospital classified me as infectious and labeled my room as an hazardous area, posted the door with biohazard signs, and required personnel to wear protective equipment. And yes, the staff was required to clean the restroom with solution to disinfect surfaces of hazardous waste. (I obviously had a private room with a private bathroom.) It is ridiculous and perhaps negligent or even criminal to let other unaware sick patients to be exposed to C diff. Of course, many nursing home patients are confused, or have dementia, or other mental problems that would prevent them from understanding the necessary precautions. This would require the home notifying the person with their family who is in charge of okaying the patient's care and the patient's progress.


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## moore2me

Russell Williams said:


> Your experience has been gowns, and handwashing, and gloves. In this nursing home the medical professionals have told Louise, who has a nagging cough and has been diagnosed with C diff, that today she can go out and spend four hours at a free poker tournament playing cards.



Russell, Do not let Louise sit in one place for 4 hours without walking and moving around. Sitting too long will most likely damage her hip and reduce the necessary circulation to her hip structures. Most back doctors do not even want a patient to sit for an hour without getting up and moving around.


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## Russell Williams

moore2me said:


> Russell, Do not let Louise sit in one place for 4 hours without walking and moving around. Sitting too long will most likely damage her hip and reduce the necessary circulation to her hip structures. Most back doctors do not even want a patient to sit for an hour without getting up and moving around.



thank you for the helpful advice. Louise has agreed to get up and use the bathroom every two hours, at least when she is awake. In physical therapy, which only occurs during weekdays, using her Walker, she has been able to walk about 200 feet each day. She is now been able to go up and down, twice, in one day, a of steps that is about 4 feet high. I have suggested to her that when she comes back to the house she may no longer need to use her her scooter in the house. 

On a totally irrelevant note Louise loves to play Texas hold 'em poker and so we play in a free poker Texas hold 'em tournament once a week we go to one bar and once a week we go to another bar. I play in the bars because Louise goes to church with me. Louise goes to church with me because I play in the bars with her.

In each bar it is possible to qualify for the regional finals. The spring finals wrapped up yesterday. Louise was not happy with having to both battle with her treatment at the nursing home and with the unpleasant knowledge that I had qualified it both bars and she had not qualified at either bar. The tournament director at one bar said would be acceptable for me to give my place at that bar in the regional finals to Louise. I gladly did. If it would have made Louise happier I would have gladly given both of my places to her.

While I would need much more data before making a decision if I were to find that I had a place in heaven and she did not I would seriously consider giving her my place in heaven.


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## Yakatori

Russ,

If we post stuff here, will you tell Louise about it?

Do you have a laptop that you can bring to the nursing home, to watch DVDs on and such?

Do they have Wi-fi that you can post from there?


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## Russell Williams

Also, today, at 9 AM Louise is supposed to be discharged from this nursing home and will then be able to read everything herself.

She asked to see the internal manual guidelines to the staff for infectious procedures since Louise's case management form simply said that the staff should follow infectious procedure instructions. She was told that A: the staff manual was a private document and that B: it was technical and Louise was probably not smart enough to be able to understand what it said.

If it had been a manual telling how to take a 12 V alternator and step the voltage up to 24 V, Louise might have agreed. But to tell Louise that she would be unable to read a set of instructions on how to clean a bathroom is not the way to produce a happy Louise.


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## Webmaster

To claim that something is a proprietary document not to be shared I can understand. But telling someone they are not smart enough to read a document seems almost unthinkable rude and hostile in today's society, unless it was implied rather than said directly.


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## Yakatori

Russell Williams said:


> "_... at 9 AM Louise is supposed to be discharged from this nursing home.._"


To go home? Or to another facility?

Maybe, for them, that was the point all along. For her not to get too comfortable and lose motivation to leave. That's what it seemed like, to me, when my mom was last in the hospital (ICU). It was like they thought she was "milking-it."

I mean, hospitals are great for some things. But, I think, when people have the proper support, they tend to do even better at home. Especially as their primary care-providers/advocates (in this case, you) aren't dealing with the constant stress of traveling back and forth and worrying the whole time they're not in contact and negotiating with staff over every little detail. 

So, if that's the case, that she's going home, you'll have a much easier/simpler time just being able to clean things to your own liking and not have to deal with all that...bureaucracy. I recommend, if you can find it, this product in particular. It's concentrated; so, not only can you smell just how strong it is, but it won't splash all over and ruin your colors.


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## CastingPearls

Russell Williams said:


> Also, today, at 9 AM Louise is supposed to be discharged from this nursing home and will then be able to read everything herself.
> 
> She asked to see the internal manual guidelines to the staff for infectious procedures since Louise's case management form simply said that the staff should follow infectious procedure instructions. She was told that A: the staff manual was a private document and that B: it was technical and Louise was probably not smart enough to be able to understand what it said.
> 
> If it had been a manual telling how to take a 12 V alternator and step the voltage up to 24 V, Louise might have agreed. But to tell Louise that she would be unable to read a set of instructions on how to clean a bathroom is not the way to produce a happy Louise.


Russell, you can have you brother the attorney demand to see the protocol unless you don't see any point to pushing this further now that Louise is leaving (or has left). 

They're unbelievably rude and condescending, not to mention unethical.

Is she going to a new facility or home?


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## Russell Williams

Tuesday Louise came home from the Julia Manor nursing home (I will here mention that all of my comments so far about Julia Manner are the best of my knowledge and belief and based on information I was either given or personally observed. Where other people have different interpretations, recollections, or beliefs about the data I have provided I would not it want to be automatically assumed that my interpretations, recollections, or beliefs, were more accurate than theirs). Did I mention that my brother is a lawyer?

I had suggested to Louise that people would like to hear Louise's comments about some of the things that have been posted in this thread. Tuesday Louise said that she would probably do it on Wednesday but Tuesday night she was just so tired and then we she wanted to organize things she would need and get to bed.

Wednesday the computer was down the whole day because a friend of mine was kind enough to purchase and install the equipment necessary to make our TV handle Netflix. Wednesday was a wonderful day for Louise and I (and a English majors out there who could tell me if the proper pronoun should be "me". )We both went to the monthly luncheon that retired Smithsburg teachers and their spouses are invited to. Louise had a wonderful time talking with the people there, after the luncheon we went to see the infectious disease Dr. who gave Louise and overall good report and then we went home and enjoyed each other's company and went to bed.

I believe it was Wednesday that someone from Julia Manor called and asked Louise if she would recommend Julia Manor to a friend. Louise responded, "I would not recommend Julia Manor to my worst enemy."

Thursday Louise got up, we got things organized, we went to the appointment with the primary care physician who, while worried about Louise's wounds was not really upset by them. We went to the drugstore to get Louise's new prescription for antibiotics and then Louise said the following:

" Russell, I did not tell you before because I did not want to worry you. You have noticed I've been doing a lot of belching. I am also experiencing a heaviness in my chest. I have taken one of my nitroglycerins and the situation has not improved. I think we should go to the emergency room."

We did and she is now on 24 hour observation status. Her white cell count is 11,000 which is probably due to the infection she still has and a whole lot of better than the 28,000 that it was when she went in about a month ago. The tests they have done to see if Louise has any of the chemicals in her bloodstream that would indicate heart damage have come back negative. I spent some time watching her bedside EKG. In about a half an hour only three or four times did I see something that would suggest that a particular heartbeat had been initiated in her ventricles. I cannot say she was in normal sinus rhythm because, about two months ago, she was first diagnosed with atrial fibrillation. But, other than the varying lengths of time between heartbeats and the lack of clearly indicated, least to me, P waves there is nothing in the heartbeat that I, working on my experience from 30 years ago of being a paramedic a volunteer with the local ambulance service, saw that would cause me to worry.

In conversation from the hospital Louise told me that she's hoping to be home soon and in the very near future to post her answers and her thank you's to the many people who have been providing helpful information and asking concerned questions in this thread.


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## Webmaster

Having lived through similarly exhausting, scary and frustrating situations, all I can say is that I wish that the two of you finally get a break and can return to a normal life. While Dimensions cannot directly do anything other than be a place where people can share, vent and comment, I hope in some small way that helps. In addition, of course, to the valuable help, suggestions and information other posters often provide.


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## EMH1701

Russell Williams said:


> I believe it was Wednesday that someone from Julia Manor called and asked Louise if she would recommend Julia Manor to a friend. Louise responded, "I would not recommend Julia Manor to my worst enemy."



I seriously have to wonder about the training that nursing home staff received and their lack of professional behavior.

My grandmother is now in a nursing home. It's in a small town. I worry about her, but my aunts are posting photos of her regularly of Facebook as they visit and take her out and about. So at least I know she is as okay as she can be for all of her issues (memory problems & having to be in a wheelchair).


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## Russell Williams

The wound on Louise's leg was, at first, the size of a dime. Now it is the size of a quarter. Louise has just been told that it is a Mersa infection.


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## moore2me

Russell Williams said:


> The wound on Louise's leg was, at first, the size of a dime. Now it is the size of a quarter. Louise has just been told that it is a Mersa infection.



Son of a ************!!!!!

CDC info on MRSA (methicillin-resistant Staphylococcus aureus )

http://www.cdc.gov/mrsa/


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## Russell Williams

In early November of 2007 Louise's sister, the brilliant Mary Jane Wolfe, had a wound on her leg. Mersa got into the wound. About 7:30 PM on the second Thursday of November 2007 Louise was called out of a meeting and told that her sister, Mary Jane Wolfe, had been killed by the Mersa infection.


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## Russell Williams

I am sitting here, thoughtfully reading the material in the links that have been kindly provided to me and suddenly I realize, as I am reading them, that I am in a cold sweat.

My tension level is high and is difficult for me to relax yet, I must stay healthy in order to be of as much assistance as I can to Louise.


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## moore2me

Russell,

I agree Louise needs you to take care of yourself. I notice you were reading and posting in the middle of the night. This is not taking care of yourself. Get 8 hours of sleep to be at your best. Worry will not help. Education will, but sleep is important too. If you need, get some Ambien (generic) for sleeping pills - I take them when I can't sleep. 

Keep your faith too.


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## CastingPearls

Russell Williams said:


> In early November of 2007 Louise's sister, the brilliant Mary Jane Wolfe, had a wound on her leg. Mersa got into the wound. About 7:30 PM on the second Thursday of November 2007 Louise was called out of a meeting and told that her sister, Mary Jane Wolfe, had been killed by the Mersa infection.


Russell, listen to me, I survived a horrific case of MRSA and so can Louise. I know that people are lost to it everyday, and it nearly took my whole body and did disfigure me, but I made it. This is not a death sentence for Louise. You said yourself that she's a tough cookie. The road is long and hard but neither of you are at the end of it by a long shot. This is one more speedbump but Louise can survive it.

The generic for Ambien is called Zolpidem. Talk to your doctor about a mild dose to help you get some rest, Russell.


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## Russell Williams

Louise has now been officially admitted to the hospital. She is now taking oral vancomycin for her C diff and intravenous vancomycin for her Mersa. Flagel does not work for Louise's C diff. Vancomycin does. Vancomycin appears to be one of the few drugs left that is somewhat effective against Mersa. One of Louise's doctors is Dr. John Bartlett http://sciencespeaksblog.org/2011/0...-on-aids-a-30-year-perspective/#axzz1yjezaI3F

he explained to us, as best I remember, that vancomycin taken orally does not get into the bloodstream. He said several tests showed that a person taking oral vancomycin had none of the drug in their bloodstream. He explained that the molecule is too large to get through the intestinal wall. I asked him about C diff developing a resistance to vancomycin. As best I remember he said that that would not happen because of the size of the vancomycin molecules. I did not ask for a detailed explanation. Whether the same applies to Mersa I do not know. I did not ask because at the time I was talking with Dr. Bartlett about this Louise did not have Mersa.

I have not actually looked at the wound since Thursday. Louise has no fever. She does not know what her white cell count is. When I go visit today I hope to get more information from the nurse. Again, I thank all of the people who have been reading this and have been giving helpful suggestions and links.


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## Russell Williams

moore2me said:


> Russell -
> 3. Where would you like your medical knowledge certificate sent? I assume you will be awarded at least a Master's Degree?
> 
> 4. I also assume Louise should also be awarded a citizen's version of the Purple Heart medal for her bravery, persistence, and composure under such difficult medical procedures and treatments.



Thanks for the advice. Love your sense of humor. No Purple Heart yet.
Louise (Yes, I really exist.)


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## Russell Williams

cinnamitch said:


> Couple of quick suggestions. Ask for a bedside commode. For her hip wound have they considered a wound vac? Also if she is not in a nursing homes Transitional Care Unit, she needs to be on one. Lower staff to patient ratios and nurses more qualified in post surgical wound care.



I offered to bring in my own bedside commode and they refused. I was in the short term "rehabilitation" unit after I transferred from the luxury unit that cost an extra $150 per month.

Thanks for the advice. Louise Wolfe


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## Russell Williams

*(Is the nursing home run by Moe, Larry, and Curly or by Simon Legree?)*[/QUOTE]

We.re not sure since her title was simply "The Aministrator". Despite all my many complaints I never met her.

Thanks for all your valuable information. Louise Wolfe


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## Russell Williams

Diana_Prince245 said:


> Yes, gowns, gloves, and handwashing until the course of vanco is complete and there are three days of negative stool samples in a row.



But the problem with C Diff is once its under control, they will not test any samples that are no longer watery diarhhea. Just like Russell and I had to wait 3 days after we were sure I had C Diff before my stool was watery enough to be tested. Louise Wolfe


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## Russell Williams

I am finally home again and feeling much safer under the loving care of my dear husband, Russell. 

Thank you so much for all of your helpful advice and support. You have all built up a lot of good karma.

I do plan to pursue an official complaint (no, compaints!) against the nursing home. Will keep you posted.

Louise Wolfe


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## Russell Williams

Last night I used my hands to hold the inside of Louise's upper arm and joyously snuggled my face into the outside of her upper arm. I commented to Louise i worked very hard to keep her healthy. With a loving and mischievous smile on her face she said that I deserve to enjoy the benefits of my hard work.

Russell Williams who has the honor of being married to the beautiful brilliant and wonderful Louise Wolfe.


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## Russell Williams

An update on Louise as of July 10.

Louise is now been out of the nursing home for two weeks which of late is, unfortunately, a record.

She did not tell me that addition to having MRSA in her leg wound she also had MRSA in the abscess over her new hip joint and she had MRSA in her blood. I found out this information on a visit with Louise to the wound clinic. Louise was getting a very strong antibiotic but it was only prescribed for 10 days because it is not only hard on MRSA it is also hard on many body parts. They are now prescribing a different antibiotic but it has been tested and found effective against the type of MRSA that Louise has in the three places.

For the last two weeks she has had no fever, her blood sugars are about normal, and her white cell count, as far as I know, is not elevated so she probably no longer has MRSA in her bloodstream. When we went to the wound clinic yesterday the doctor said that the abscess over top of her new hip joint seems to have completely healed. The only remaining wound is one on her calf which is a little smaller than a quarter and is about two quarters deep. A week ago the widest circumference was 1.7 (I think it was 1.7 and not 2.7) and yesterday the widest circumference was 1.3 cm. I am changing the dressing twice a day and putting Silvidane in each time I change the dressing.

She is doing her exercises and gaining strength daily. Sunday for the first time in perhaps three years she was able to leave her scooter at the back of the church and use a cane to walk down to the front of the church were Louise and I and Lori usually sit. After church we went to a place called Pen Mar where they have ballroom dancing. When the song "I just called to say I love you.", was being played Louise and I stood up and I pulled her close to me and we swayed back and forth. It felt wonderful. Later on, two different times, when faster ballroom music was being played, we both stood up and, facing each other while holding onto the Walker, we proceeded to move our feet more or less in time with the music.

It was wonderful to be able once again to hold her close and to dance with her.


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## Yakatori

Just awesome....

But what about the probiotics and fiber and such? Did the doctor get into any of that?


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## CastingPearls

Russell, you need to check with the infectious disease specialist whether Louise is colonized or not. That means that anytime she would have a wound or infection, MRSA would jump in because it's living on her body. You can battle it, knock it back, etc. but it remains on the body even after a wound is healed. You need to know this info; knowledge is power and if she is colonized you both have to be very careful even with innocuous things like papercuts.


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## Yakatori

Why not just assume that she is? I mean, isn't like 1/3 of the population?


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## CastingPearls

Yakatori said:


> Why not just assume that she is? I mean, isn't like 1/3 of the population?


I think it's smarter to not assume anything, don't you? 

MRSA is prevalent in nursing homes and hospitals so it could be the environment and not the individual. If you remove the individual from the environment and they're recovering, (as I was) there's a risk that they're colonized but it's also possible they weren't. I wasn't, thankfully. I was sent home with active MRSA but pretty much kept isolated and everything was virtually sterilized (as much as possible in a home, it's not like the cats walked around in spacesuits) but visiting nurses had to suit up. In fact, my medical team told me I was safer at home with the infection than in the hospital. 

It wasn't until I had small cuts and scrapes that the scare was over. More recently (three years later), I had another scare involving my original illness and there was no infection present at all.


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## Yakatori

Some risks are worth taking. Practically speaking, we have to rely on certain assumptions every day. Besides, if being colonized just means being extra careful, why not just be that careful anyway?

Yeah, it is more common in hospitals and nursing homes. But it's not like it's this alien-strain from another dimension. If she had it before, why couldn't it be somewhere else in house? Or that he's been colonized from taking care of her for so long? Lots of possibilities/opportunities to be "colonized" with or without institutional stay. 



CastingPearls said:


> "_..my medical team told me I was safer at home with the infection than in the hospital._"


Yeah, that's pretty much the consensus. Once you're out of surgery, emergency care, etc...it's like you're an infection waiting to happen or worsen. But folks expect things out of these facilities that they're just not prepared to deliver...



CastingPearls said:


> "_..It wasn't until...that the scare was over. ...(three years later), I had another scare..._"


To me, this problem is born out of the idea that the solution to everything is in a bottle of pills (antibiotics) that you can wash down with some bleach. I don't think of it as a problems that's "bombed" to be solved; it's more of something that has to be managed day by day. You know, de-cluttering the house, starting with some regular household cleaners, etc...steady wins the race. But I'm no expert.


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## CastingPearls

No, you're not an expert. I think someone who has had MRSA and has extended hospital stays might know a wee bit more than you on this.

It's not an alien from another dimension but MRSA and superbugs that hang out in hospitals and nursing homes are the result of overuse (and under-use, not finishing the full dosage) of antibiotics, among other things. They've evolved from weaker germs, not to mention viruses can mutate (this was a big concern when AIDS was first being researched-could it mutate to become airborne, could it mutate to be transmitted via mosquito) so we can sit around and casually dismiss strong concerns and say throw more bleach at it but we don't know the full picture which is why I recommend Russell speak with an infectious disease specialist for real answers rather than rely on rhetoric from forum regulars. 

If you've been following Louise' story, she's been in nursing homes pretty regularly so yes, while it's possible that there may be some MRSA hanging around at home, her spending a great deal of her time (a month in, a week out, another month in, a few days out, another month in, lather rinse repeat) in the nursing home where Russell and Louise have witnessed some abysmal waste management and biohazard nightmares in her room and bathroom would strongly suggest it IS probably the nursing home environment.


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## Yakatori

I don't really mean for anyone -NOT- to talk to whatever specialists, I'm just seizing on that we all have be on guard against the solutions that ask the least of us. Support staff will always make for a convenient scapegoat.

Note: Russ still hasn't followed up on the probiotic/fiber angle....


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## Russell Williams

The state inspector went to the Julia Manor nursing home and three different people at the nursing home told her that, because Louise had C diff, while Louise was there she had a bedside commode that she was using. This of course meant that was no bathroom problem at all because Louise was using the bedside commode rather than the bathroom.

So it appears that Louise and I both had hallucinations about all the events that occurred in the bathroom and traumatic amnesia because neither of us is the slightest memory of the bedside commode. Any other explanation would involve libeling or slandering the nursing home.

Earlier this week I saw the family Dr. and told him about my episode of hallucinations and traumatic amnesia. For whatever reason he did not see the need to either give me any antipsychotic medicine or to refer me to a psychiatrist or psychologist.


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## Russell Williams

Is now 25. I am not happy.


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## moore2me

Russell Williams said:


> The state inspector went to the Julia Manor nursing home and three different people at the nursing home told her that, because Louise had C diff, while Louise was there she had a bedside commode that she was using. This of course meant that was no bathroom problem at all because Louise was using the bedside commode rather than the bathroom.
> 
> So it appears that Louise and I both had hallucinations about all the events that occurred in the bathroom and traumatic amnesia because neither of us is the slightest memory of the bedside commode. Any other explanation would involve libeling or slandering the nursing home.
> 
> Earlier this week I saw the family Dr. and told him about my episode of hallucinations and traumatic amnesia. For whatever reason he did not see the need to either give me any antipsychotic medicine or to refer me to a psychiatrist or psychologist.



You and Louise were not psychotic or blind, perhaps you were smoking some of that illegal green, leafy vegetable matter. Or walking on the wild side by using fungal hallucinogens.



Russell Williams said:


> Is now 25. I am not happy.



Russell, I give up. What is GFR? Glomerular Filtration Rate?


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## Russell Williams

.



Russell, I give up. What is GFR? Glomerular Filtration Rate?[/QUOTE]

If I have the initals correct yes that is what GFR is.

Last Dec it was about 60.

In the spring it was about 45

In the early summer it was 38

Now it is 25.

We have been told that if it hits 15 the roof caves in.

Does a GFR rate ever go up and what can help it do so.

My GFR is greater then 60.


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## moore2me

Dear Russell, 

I have done some research and it appears that the GFR can go up. It would do this if the kidney heals from a disease, or if the owner takes better care of his/her kidneys, or if something changes (such as a kidney transplant).
The kidney is an organ just like any other organ (heart, lungs, skin, stomach, liver, etc,). If they are damaged, most of the time they can be healed (unless too far gone).

I did some research and found the following info. Some drugs cause kidney damage (called nephrotoxic) and some drugs can heal kidney damage. Just a few examples below. Also note that the length of time the drug is taken and the dose is also important in this consideration.

Cyclosporine  can damage kidney or nephrotoxic
Ifosfamide  can damage kidney or nephrotoxic
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Since diabetes can damage the kidney, controlling diabetes & blood sugars is one way to control kidney damage. Drugs for this include Glucophage, insulin, and diet management to lower sugars. Monitoring blood sugars regularly (daily) is also important  as is exercise and proper diet.

We can also help our kidney by lowering the burden on its work. We can do this by drinking plain water instead of carbonated drinks, alcoholic beverages, etc. However, if the doctor recommends you reduce your water intake due to congestive heart failure or some other problem  follow the doctors orders.

Check with the kidney organizations for more information
National Kidney Foundation
http://www.kidney.org/
also most states have their own branch of this organization, here is just one example - Marylands http://www.kidneymd.org/

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How to improve GRA.
The definitive diagnosis of the type of kidney disease is based on biopsy or imaging studies. Biopsy and invasive imaging procedures are associated with a risk, albeit usually small, of serious complications. Therefore, these procedures are often avoided unless a definitive diagnosis would change either the treatment or prognosis. In most patients, well-defined clinical presentations and causal factors provide a sufficient basis to assign a diagnosis of chronic kidney disease. . 

*Diabetic kidney disease is a type of glomerular disease, but it is singled out here because it is the largest single cause of kidney failure*. Both type 1 and type 2 diabetes cause chronic kidney disease. Because of the higher prevalence of type 2 diabetes, it is the more common cause of diabetic kidney disease. The clinical features, natural history and treatment for diabetic kidney disease are well known because it has been the subject of numerous epidemiological studies and clinical trials. Diabetic kidney disease usually follows a characteristic clinical course after the onset of diabetes, first manifested by microalbuminuria, then clinical proteinuria, hypertension, and declining GFR. Clinical trials have established a number of effective treatments to slow the development and progression of diabetic kidney disease, including strict glycemic control, angiotensin-converting enzyme inhibitors and angiotensin receptor blockers, blood pressure control, and perhaps dietary protein restriction. 

A variety of diseases, including other glomerular diseases, vascular diseases, tubulointerstitial diseases, and cystic diseases, are often grouped together under the label *nondiabetic kidney diseases* for the purpose of epidemiological studies and clinical trials. Amongst these,* hypertensive nephrosclerosis and glomerular diseases are the second and third most common causes of kidney failure*. The various diseases in this group differ widely based on history, clinical presentation, risk for progression, and response to treatment. Differentiation among the diseases can be difficult, often requiring kidney biopsy or invasive imaging studies.. Specific therapies are available to reverse abnormalities in structure and function for some types of chronic kidney disease: for example, immunosuppressive medications for autoimmune glomerular diseases, antibiotics for urinary tract infections, removal of urinary stones, relief of obstruction, and cessation of toxic drugs. A thorough search for reversible causes of decreased kidney function should be carried out in each patient with chronic kidney disease. 

Kidney disease in the transplant is probably the fourth largest cause of kidney failure. Both immunologic and non-immunologic factors appear to play an important role. The most common causes are chronic rejection, toxicity due to cyclosporine or tacrolimus, recurrent disease, and transplant glomerulopathy. In addition, differential diagnosis includes all the diseases that can occur in the native kidney. For a variety of reasons, especially the ease and safety of kidney biopsy, there is generally a much lower threshold for performing invasive procedures to establish a definitive diagnosis in kidney transplant recipients. 


I have a couple of charts to go with the above info. However, they are lost temporarily in my computer. I will look more this afternoon and send them later. M2M


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## Russell Williams

I have printed out what you said and gave it to Louise. We thank you for taking the time to collect and post it.


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## Miss Vickie

Russell, I assume that Louise sees a nephrologist (kidney specialist)? If not, she should. Yes, the GFR can increase, but the concern I have is that hers is trending down. As M2M pointed out, there are many diseases that can cause kidney damage; some of them are manageable and the GFR can improve with treatment. I don't know what Louise's other health problems are but long term hypertension and diabetes are really, unfortunately, hard on the kidneys. Ultimately, despite numerous heart attacks, it was kidney disease that went untreated that led to my brother's death two years ago.

One of the people I know who had Sarcoidosis like me had a really nasty hit to her kidneys due to hypercalcemia. (Sarcoid can throw off vitamin D metabolism which affects calcium levels; calcium in excess is hard on the kidneys as the body tries to get rid of it). Her GFR was very low, her serum creatinine was incredibly high (another measure of kidney function). But once they treated her excess calcium, her kidneys returned to normal function.

I'm glad they're continuing to evaluate it, but they need to have a fall back condition if it continues to fall despite treatment. That may include dialysis which -- from my limited experience with my brother's experience -- should be started sooner, rather than later. He ignored his symptoms, refused to see his doctor, and paid the ultimate price. Louise is lucky that you're looking out for her.

Get her to a kidney specialist if you possibly can.


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## Russell Williams

Louise is seeing a kidney specialist and at the last appointment the kidney specialist told her that they have to start thinking about dialysis. The way things have been going I expect her to be on dialysis by Christmas. I very much hope that I am very wrong. Louise has been told to drink a lot more fluid and she has been drinking a lot more fluid. She is measuring her output to keep close track of what her output is. For several days she tried not taking fluid pills because some of them are hard on her kidneys and her weight went up rapidly. She took a fluid pills lost 10 pounds and 48 hours. She finally has felt that she is regained her strength enough so today we went driving. It is the first time she has driven the car since, I believe, 2009. She did a fine job.

She stopped driving when she realized that due to her sore hip (which has been replaced) in order to get her foot on the brake she had to use her hand to help lift it up off of the gas pedal so that it could reach the break.


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## moore2me

Russell,

If Louise cannot use the brakes adequately, I recommend hand controls. I have used them myself for years on several of my cars during a bad spell of MS and the steering wheel can be used nicely to operate the brakes and the gas. Also if anyone wants to use the regular gas & brakes, they are still attached and continue to function normally. Most handicapped adaption places that work on vehicles can add them to a car. These controls work like those of a motorcycle and will hopefully let Louise continue to drive.

If you need more details I can look some up for you.

You also might be interested in the fact that my mother's next door neighbor was able to get home dialysis for the time his kidneys were not functioning. I am not sure how the whole thing was set up, but I think he used it for about a year. He also no longer has to have the dialysis.


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## Miss Vickie

Russell Williams said:


> Louise is seeing a kidney specialist and at the last appointment the kidney specialist told her that they have to start thinking about dialysis. The way things have been going I expect her to be on dialysis by Christmas. I very much hope that I am very wrong.



I hope you're wrong too but dialysis isn't like it was 20 years ago. There are many options and it can be done outpatient with minimal discomfort and disruption. Also, since ideally they have to make a fistula between artery and vein in the arm it's a minor surgical procedure but it has to heal before it can be used.

Because my brother wasn't as on top of things as you guys, they used an emergency IJ site which doesn't work as well. So the earlier you guys start talking about this and preparing -- even if it's years before you need it -- the better.



> Louise has been told to drink a lot more fluid and she has been drinking a lot more fluid. She is measuring her output to keep close track of what her output is. For several days she tried not taking fluid pills because some of them are hard on her kidneys and her weight went up rapidly.



The whole management of fluid and preserving kidney function is a tough one. Too much lasix is hard on the kidneys; but a build up of fluid is dangerous to the heart. So... it's about using the minimal amount you can get away with in order to have good cardiac function without stressing the kidneys.

I recall they also had my brother on a special diet with low salt, low potassium. Be sure your doctor (or a nurse in their office) is telling you the best diet for Louise so her kidneys can be happy.

Hang in there you guys! And keep talking to your doctors!


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