# Keep in Check with DVT



## BBWMoon

It's really important to have a certain awareness of *DVT*. (Deep Vein Thrombosis).

An internet friend of mine had a blood clot in her leg from sitting at her computer all of the time. 

My Mother's friend's 30 year old daughter passed away from it 3 years ago.

It's especially a health risk, if you're overweight, lack mobility, or suddenly
change your mobility due to an injury.

I know this has been brought up before recently, I think Saucy posted information about it, I believe.

So, if you're in front of your computer more often than not...
(Which more and more people are... I go from my Office Computer to my Home Computer.)

Please Check this site out, 
And keep in check with your legs especially.

*Have a healthy 2006!*

http://www.dvt.net/home.do


----------



## swamptoad

Thanks for posting this BBWMoon! :bow:


----------



## bigdog

Ive heard DVT referred to as economy class syndrome, as someone died from it on a long, cramped, flight from the US to Australia a few years back. 

Scary stuff.  

http://www.economyclasssyndrome.net/


----------



## TallFatSue

Thanx for the info, Allie. This confirms my New Year's resolution to get more exercise, or at least take regular walks to tone my muscles a bit more and help my blood circulate a bit better.


----------



## BBWMoon

You're welcome! 

I hope more people become aware of it. 


I'm going to be a little more proactive about my health this year.


----------



## BBWMoon

Reviving this thread so others can know about it...


http://www.dvt.net/default.aspx

http://hcd2.bupa.co.uk/fact_sheets/mosby_factsheets/Deep_Vein_Thrombosis.html

http://www.preventdvt.org/


----------



## SamanthaNY

Excellent bump, Moon. 

Also important to note is that many fat women are prescribed (and _overprescribed_, I feel) birth control pills, either for contraception, regulating cycles, or as treatment for amenorrhea. The pill is a leading risk factor for blood clots, as is a history of smoking, and the other things mentioned above. 

p.s. *HEALTH FORUM*


----------



## Donna

I can't give out anymore rep today, just felt it was very important to chime in on this very important subject. 

ditto p.s. health forum


----------



## Esme

Hmmm... this is fairly timely for me. I actually just got out of a week's hospital stay with DVT issues.

Yes, it is important to get things checked out. Don't ignore those little pains, and be sure you have a doctor who doesn't either. 

I keep my legs up when at the computer, and it still happened to me.

Just be careful folks, this is nothing to take lightly.


Great words of advice BBWMoon!


----------



## ATrueFA

When I was in the hospital for for my lung cancer surgery they put inflatable cuffs on my legs that were hooked to a air compressor that was suppossed to come on and off randomly to stimulate my legs and that was supossed to lessen the chance of getting DVT. Only problem is after putting the cuffs on they forget to turn it on for more than 24 hours. Sure enough after I got home 8 days later a pain developed just below and behind my right knee so they gave me a blood thinner and it went away...Don't ignore those pains, A friend at a place I used to work died from that when he ignored the pain for several days and he dropped dead at work when the clot went to his heart.

Dave


----------



## Donna

Esme said:


> Hmmm... this is fairly timely for me. I actually just got out of a week's hospital stay with DVT issues.
> 
> Yes, it is important to get things checked out. Don't ignore those little pains, and be sure you have a doctor who doesn't either.
> 
> I keep my legs up when at the computer, and it still happened to me.
> 
> Just be careful folks, this is nothing to take lightly.
> 
> 
> Great words of advice BBWMoon!



And we're so happy to have you back with us, Es! :wubu:


----------



## mottiemushroom

My dad died of DVT in June. He was not overweight & was an active man BUT some years ago he broke his leg in several places when he fell off a roof ... & that made him more prone to develop DVT. We only knew of this increased risk AFTER it was too late. So please be aware & check out anything suspect ... better safe than sorry.


----------



## Ericthonius

SamanthaNY said:


> Excellent bump, Moon.
> 
> Also important to note is that many fat women are prescribed* (and overprescribed, I feel) birth control pills*, either for contraception, regulating cycles, or as treatment for amenorrhea. The pill is a leading risk factor for blood clots, as is a history of smoking, and the other things mentioned above.
> 
> p.s. *HEALTH FORUM*





And if it's not called '_Birth Control Pills_', Doctors refer to it as HRT, (Hormone Replacement Therapy). Odd that the medical community sometimes takes this end-run around this issue as a contraindication for most of the b/c pills is, "Extreme obesity". That's why medicine is an, "Art", not a "Science", so a Dr's ego A/K/A Judgement, can ignore warnings and proscriptions in the prescribing of medications and not be responsible for anything bad that happens to the patient.

Now admittedly there are lots of necessities for HRT, S/P Radical hysterectomy, Ovarian Cancer, etc. but as mentioned above using HRT for _Amenorrhea / Dismenorrhea_ can cause more harm than good, (Like almost bleeding to death to name one I've seen personally)

P.S.*HEALTH FORUM! Says me too!*


----------



## Miss Vickie

ATrueFA said:


> When I was in the hospital for for my lung cancer surgery they put inflatable cuffs on my legs that were hooked to a air compressor that was suppossed to come on and off randomly to stimulate my legs and that was supossed to lessen the chance of getting DVT. Only problem is after putting the cuffs on they forget to turn it on for more than 24 hours.



You are KIDDING me!!! It's obvious -- or should have been to every nurse who entered your room -- that they weren't on. It's one of the things I always check, because they get leaks and stop working and get kinked up. Holy cow. Besides, they're pretty loud. And hot. And sweaty.

BTW, they're called SCD's (sequential compression devices) and anyone who has surgery should have them if they're not up and around the same day. However, if for some reason you don't get them, you can do the same thing for yourself by flexing and extending your feet, tightening your leg muscles, several times every hour. That action keeps the blood in your veins moving back up to your heart and reduces your risk of a DVT.


----------



## BBWMoon

Esme said:


> Hmmm... this is fairly timely for me. I actually just got out of a week's hospital stay with DVT issues.
> 
> Yes, it is important to get things checked out. Don't ignore those little pains, and be sure you have a doctor who doesn't either.
> 
> I keep my legs up when at the computer, and it still happened to me.
> 
> Just be careful folks, this is nothing to take lightly.
> 
> 
> Great words of advice BBWMoon!



Wow, Esme...

I'm so glad you're doing better. It's really shocking how common this is.

Keep in check!

Big Hugs!


----------



## BBWMoon

Mottie,

I'm very sorry to hear you lost your Father. It certainly is something that most people aren't aware of, or informed of.

Such a terrible loss...


----------



## ATrueFA

Miss Vickie said:


> You are KIDDING me!!! It's obvious -- or should have been to every nurse who entered your room -- that they weren't on. It's one of the things I always check, because they get leaks and stop working and get kinked up. Holy cow. Besides, they're pretty loud. And hot. And sweaty.


The next day I grabbed a nurse and asked about it and she turned it on and asked me how long it had been off and I told her it had never been on since they put it on me after surgery, If you think thats bad they had set me up with a spinal tap morphine machine and it kept getting error codes and beeping a minute after they reset it it each time and they screwed with it on and off for several hours before they gave up and put me on an IV drip push button machine but when they did they missed with the needle and it only just went under my skin so for several hours the morphine drip was leaking out of my arm and dripping on the floor. I tried several times to get a nurse to look at it but they wouldn't come no matter how many times I used the call button. When they finally came to fix it the nurse slipped on the puddle under my gurny. So for nearly the first 24 hours after my lobetomy I got almost zero pain killer. Many other things were screwed up also making it 8 days in hell. Fortunately the surgery itself went very well.

Dave


----------



## Miss Vickie

Aw, Dave, I'm sorry. I hope you follow up with hospital administration. That kind of malpractice is just inexcusable (and I say this as a nurse who has had her share of busy shifts but hopefully hasn't missed the mark THAT badly).

I'm glad you're doing better and I wish you the very best.


----------



## Esme

BBWMoon said:


> Wow, Esme...
> 
> I'm so glad you're doing better. It's really shocking how common this is.
> 
> Keep in check!
> 
> Big Hugs!




Thanks BBWMoon... It was actually a sort of scary thing, and it doesn't end once you leave the hospital either. I'll be dealing with this for the next 4-6 months directly, and it will be an issue for me the rest of my life most likely. I'm glad you posted this so that hopefully others will be aware and not take an "it won't happen to me" attitude. I always thinks it's better to be safe than sorry.


----------



## Frankie

I delurked specifically to respond to this thread.

I had a massive DVT and a pulmonary embolism a year ago. It's something I never thought would happen to me, and I didn't realize how serious the situation could get. To make a long story short, a giant blood clot developed in the intersection of three of my major abdominal veins - which is supposedly a very rare and very dangerous location (not that all DVTs aren't dangerous). As the pain and other symptoms increased over the course of a few weeks, I saw several physicans - either in their offices or in the ER, and none of them suspected that anything was seriously wrong with me. Everyone, including myself, kept chalking it up to extreme stress. I was popping narcotic painkillers like they were candy, and they couldn't touch the pain. One day the pain that radiated throughout my entire torso became so excruciating, I had a third ER visit, and finally - finally!- a physician ordered a CT scan that uncovered the source of my pain. (When you want attention, it helps to be vomiting uncontrollably, pooping your pants, and screaming.) I ended up being hospitalized for two weeks. 

Due to the nature of my DVT and the lack of a good explanation as to why it happened, I'm on lifelong treatment with warfarin. I have to get the "clottiness" of my blood checked every two or three weeks. The DVT is supposedly gone now, but what it left in its place is a huge mass of scar tissure.

My lesson for anyone, fat or otherwise: don't be afraid to speak up if you're in pain and want a physician to exam you more closely. Stress can cause physical problems, but try to listen to your body and know when you need and deserve a better explanation than that. Don't let yourself feel intimidated and don't try to be a good little uncomplaining patient and cope with sudden, mysterious pain. I didn't think it was my place to second guess all of the physicians that initially examined me. In retrospect, I regret not being more aggressive and demanding more. I can't help but feel a little disappointed in the medical community - and in myself. I know that I am extremely fortunate - more than words can possibly express - to have survived this mess.


----------



## Miss Vickie

Hey, it's Frankie!!! Welcome, darlin'!

And thanks for delurking and giving us some very good advice from a very personal perspective.

Don't be a stranger, 'k?


----------



## Frankie

Thanks for the welcome, V! I hope I can participate more - merely trying to keep up with the board reading makes my head spin.


----------



## SamanthaNY

Very wise words, Frankie. I'm glad you delurked to share this with us. I'm impressed by your bravery and tenacity in dealing with your health. 

I'm also glad that you've weathered through, and are still with us. Continued health wishes for you, and I hope you stay here on the boards. Your contributions are a welcome addition.


----------



## Frankie

Thanks, Samantha. But I have to admit, I was anything but "brave." During my hospital stay, I carried on like a baby. We'll never be sure how much of the heavy duty narcotics I received was for my pain and how much was for the hospital workers' sanity.  



SamanthaNY said:


> Very wise words, Frankie. I'm glad you delurked to share this with us. I'm impressed by your bravery and tenacity in dealing with your health.
> 
> I'm also glad that you've weathered through, and are still with us. Continued health wishes for you, and I hope you stay here on the boards. Your contributions are a welcome addition.


----------



## SamanthaNY

Frankie said:


> Thanks, Samantha. But I have to admit, I was anything but "brave." During my hospital stay, I carried on like a baby. We'll never be sure how much of the heavy duty narcotics I received was for my pain and how much was for the hospital workers' sanity.


LOL  
But I still don't lessen your experience in light of that. You _survived_. And you came here to tell your story. 

Bravery. Plain and simple. Admirable, too.


----------



## Donna

*P.S. HEALTH FORUM*


----------



## Miss Vickie

Donnaalicious said:


> *P.S. HEALTH FORUM*



PPS -- Yup. Agree completely. Hell, I'll even moderate it, if Conrad thinks I can be trusted.


----------



## SamanthaNY

Miss Vickie said:


> PPS -- Yup. Agree completely. Hell, I'll even moderate it, if Conrad thinks I can be trusted.


DITTO.
I can behave. I swear.


----------



## Esme

Frankie said:


> Thanks, Samantha. But I have to admit, I was anything but "brave." During my hospital stay, I carried on like a baby. We'll never be sure how much of the heavy duty narcotics I received was for my pain and how much was for the hospital workers' sanity.




See, for me, the "carrying on like a baby" was a integral part of the "hospital experience"... and mine wasn't nearly as scary as yours... so I agree with Sammie... you were very brave.


----------



## liz (di-va)

I found this thread by accident...but would like to chime in. Five weeks ago I found out I had a blood clot too!

I had *no* idea I had one, had no idea what the symptoms were. I ended up in the ER on a Wednesday night after 1) first noticing it over the weekend--it felt like a charlie horse in my calf I couldn't stretch out then 2) working two 12-14/hour days with almost no breaks, all smashed at my computer. 

Luckily for me, all the health care professionals I talked to on Wednesday brought up the possibility that it might have been a clot, so it was a very very good thing when I went to the ER (skeptically). And the treatment totally sucks--I had to give myself 4 subcutaneous shots a day for a week (something I never thought I could do--totally phobic) and as others were saying, I'll be on Wayfarin for the next 6-8 months. 

Although I do have this rockin hot pink medic alert dog tag necklace now  (it ROCKS). Heheheh (now listen to your auntie Liz!)

In my case they've connected the clot to BIRTH CONTROL PILLS, which at that point I had been on (for the first time) for only three months, and at a v. low estrogen dose, but--BLAMMO. BCPs + stress + the sittingest job ever. I am lucky--this is not a chronic situation, but it has shaken me out of my frustrating inability to really (like everyone where I work) look out for myself at my job. It has rejiggered my priorities in a way that I certainly already *knew* cerebreally I should, but hadn't been able to.

It was scary as hell! And my calf still hurts. I'm much much better and more active and taking v. good care of myself, but still--scary as hell.


----------



## LillyBBBW

We're twins Liz! I had the same thing happen 15 years ago. It was a slightly different circumstance than yours though. I was active, in a gym, went hiking, yada yada but got the clot anyway because of birth control pills and a sedentary job. And the pills were a low dose. I thought the calf pain was a pulled muscle, a perfectly reasonable assumption given my lifestyle. I'm glad your docs were on the ball and pegged it right. 




liz (di-va) said:


> I found this thread by accident...but would like to chime in. Five weeks ago I found out I had a blood clot too!
> 
> I had *no* idea I had one, had no idea what the symptoms were. I ended up in the ER on a Wednesday night after 1) first noticing it over the weekend--it felt like a charlie horse in my calf I couldn't stretch out then 2) working two 12-14/hour days with almost no breaks, all smashed at my computer.
> 
> Luckily for me, all the health care professionals I talked to on Wednesday brought up the possibility that it might have been a clot, so it was a very very good thing when I went to the ER (skeptically). And the treatment totally sucks--I had to give myself 4 subcutaneous shots a day for a week (something I never thought I could do--totally phobic) and as others were saying, I'll be on Wayfarin for the next 6-8 months.
> 
> Although I do have this rockin hot pink medic alert dog tag necklace now  (it ROCKS). Heheheh (now listen to your auntie Liz!)
> 
> 
> 
> 
> 
> 
> In my case they've connected the clot to BIRTH CONTROL PILLS, which at that point I had been on (for the first time) for only three months, and at a v. low estrogen dose, but--BLAMMO. BCPs + stress + the sittingest job ever. I am lucky--this is not a chronic situation, but it has shaken me out of my frustrating inability to really (like everyone where I work) look out for myself at my job. It has rejiggered my priorities in a way that I certainly already *knew* cerebreally I should, but hadn't been able to.
> 
> It was scary as hell! And my calf still hurts. I'm much much better and more active and taking v. good care of myself, but still--scary as hell.


----------



## Tina

Woah, Liz, my God that is scary. Glad you were so quick in having it checked and that it temporary for you. Something you can do to keep the blood flowing even if you're having to be sedentary at work is, every so often, contract and release the muscles in your legs, from bottom to top. It gets the blood flowing. Take care now. Love that pic.


----------



## Emma

Oh God not another thing to worry about.


----------



## liz (di-va)

LillyBBBW said:


> We're twins Liz! I had the same thing happen 15 years ago. It was a slightly different circumstance than yours though. I was active, in a gym, went hiking, yada yada but got the clot anyway because of birth control pills and a sedentary job. And the pills were a low dose. I thought the calf pain was a pulled muscle, a perfectly reasonable assumption given my lifestyle. I'm glad your docs were on the ball and pegged it right.



Gah! I'm sorry that happened to you, too! Your situation highlights the fact that DVT can still happen, whatever your activity level--if there is a sedentary job or a long plane trip or whatever!

It's weird to be a statistical anomaly, isn't it? I was sitting in my GYN's office afterward as he said, "These are a very rare occurance with birth control pills--blood clots," and I just started waving my hands at him. HELLO! Here I yam! Duh.


----------



## Esme

liz (di-va) said:


> It's weird to be a statistical anomaly, isn't it? I was sitting in my GYN's office afterward as he said, "These are a very rare occurance with birth control pills--blood clots," and I just started waving my hands at him. HELLO! Here I yam! Duh.




You know, I think that "rare occurance" stuff is a load of crap because the BCP caused my DVT as well. 

Just be careful folks... any unexplained pain has an explanation somewhere.


----------



## LillyBBBW

One more dire warning for you folks. The BCP at the same time it brought on the clots also brought on another disorder I have called pseudo tumor cerebri. It's a build up of too much cerebral spinal fluid that causes headaches and other disturbances that mimic the symptoms of a brain tumor. It's an even rarer disorder but from what I hear some people discovered they developed this around the same time as the clots from the pill. If you start getting headaches and other strange symptoms, take it seriously and get it checked out. It's not going to kill you but it can make you pretty damned uncomfortable that's for sure. PM me if you are interested in knowing more.


----------



## SamanthaNY

I don't think the issue with blood clots and BCP is rare at all anymore. *Especially* with fat women. In my opinion, BCP is completely overprescibed to deal with amenorrhea as a result of obesity. Women are left on the prescription for years, and when combined with obesity and a possibly sedentary lifestyle, it's a perfect storm for thrombosis.

_Know the warning signs: _
*Deep vein thrombosis*

Swelling of the leg
A strangulated feeling, from inside the leg
Pain or tenderness in the leg-the pain is usually in one leg and may only be present when standing or walking
Feeling of increased warmth in the area of the leg that is swollen or that hurts
Red or discolored skin.
*Pulmonary embolism*
Chest pain when you take a deep breath
Shortness of breath.
Be aware. *We are all at risk. *


----------



## LillyBBBW

You will also find that the affected area of the clot is warmer to the touch than the unaffected leg. I learned this trick in the hospital during my glorious stay for pulmanary emboli:

1. place the back of one hand over the affected area on one leg and the back of the other hand over the same area on the other leg.

2. hold your hands over the respective area for a slow count of ten, allowing your hands to adjust to the temperature.

3. after the slow count of ten, quickly switch your hands to the opposing sides. If you detect a difference in temperature, i.e. one side being warmer/cooler than the other, you may have a clot. You should get to a doctor immediately if you suspect you have a clot. Better safe than sorry.


----------



## liz (di-va)

I think yer right, Esme, Sam, and, if you ask me: I might venture to deduce that DVTs are more common, period. Across the statistical board, also *younger* than before. Because of the nature of work these days, the long sedentary + stressy nature of many jobs, whatever they are. Run run run run, siiiiiiiiiiiiiiiiiiiit.

One example: The friend I've been talking to the most since this happened is about 6'4" and maybe 160 on a good day...total bean pole. He's very physically active, but also has a very stressful sitting computery job and...whammo. Two years ago he had a DVT in his leg, that was (unfortunately) much more serious than mine, due to when it was caught. He's been telling me about all the people he's run into that've had them too...


----------



## LillyBBBW

That is so true Liz, this is not just a fat issue. I was out on a date with a guy who had the same thing happen to him sans the birth control pill of course. I don't know his stats as I usually don't ask those kinds of things but he's a petite guy. Shorter than I and small in stature but he attended to the gym regularly. We seemingly had nothing in common accept for the fact that we both did very extensive stretching routines on our calves in the gym. We suspected that maybe the extreme stretches may have done some damage to the veins in our legs that made us more prone to getting DVT but of course we don't know and probably never will. There are TONS of people on coumadin/warfarin now and what doctors won't tell you is that a significant number of them are not what anyone would consider obese or even overweight. Dan Quayle was hospitalized with DVT from a long plane flight. It can happen to ANYONE.



liz (di-va) said:


> I think yer right, Esme, Sam, and, if you ask me: I might venture to deduce that DVTs are more common, period. Across the statistical board, also *younger* than before. Because of the nature of work these days, the long sedentary + stressy nature of many jobs, whatever they are. Run run run run, siiiiiiiiiiiiiiiiiiiit.
> 
> One example: The friend I've been talking to the most since this happened is about 6'4" and maybe 160 on a good day...total bean pole. He's very physically active, but also has a very stressful sitting computery job and...whammo. Two years ago he had a DVT in his leg, that was (unfortunately) much more serious than mine, due to when it was caught. He's been telling me about all the people he's run into that've had them too...


----------



## mottiemushroom

A close friend of mine has recently come back from a short haul flight from Spain. She had chest pains & assumed that she had cracked some ribs. After a couple of days she couldn't stand the pain anymore & took herself off to hospital. Turns out she had had DVD in the lge without knowing it & part of the clot had broken off & gone into her lung. Thank God she went to the hospital !!! Now she is on Warfrin, with the nurse coming out twice a day to do blood tests & has been told it will be 6 months before she is fit again.

You just can't be too careful.


----------



## snuggletiger

Thats sad but a good reason to be more careful.


----------



## BBWMoon

Keep in check! :wubu:


----------



## BBWMoon

Keep in check! :wubu:


----------



## Esme

Is this the DVT thread you were mentioning, Sammie?




(thinly veiled attempt to bump what I consider to be an important thread!)


----------



## SamanthaNY

Why, yes! Yes it is!


----------



## Esme

Good! Glad I could help.

And just an update. My bloodwork at my last appointment was all pretty good. Only one "mutation" so the doc blames my DVT on birth control pills. 

Be careful ladies!


----------



## SamanthaNY

mutation? what's that referring to? 

Surely you're not growing another set of ears or something?


----------



## Esme

SSSSSSSSSHHH.... I can't tell you. I joined the X-Men and had to take a vow of silence.:bow:


----------



## SamanthaNY

Wonderful! You'll look fabulous all naked, painted blue head to toe.


----------



## Esme

Blue like my eyes?? :batting:


----------



## SocialbFly

I have wanted to post this here for so many times, and i always have missed it, and here it is...thank you to those for bumping it up....

ok...here is the thing...i have seen many posts regarding DVT, but no one has posted any info regarding factor V Leiden...often called thrombophilia (meaning instead of bleeding you clot easier)...

here is an article on it...


http://www.fvleiden.org/

i learned about it when my sister was diagnosd with it after having two blood clots in her arms after an IV was there...my nieces both have it too, but i do not. 

the thing is, statistics vary, but say as much as 10% of the population may have this...and that is statistically significant...why, that means one out of 10 of us have it...my sister also had blood clots in her legs with birth control pills, but this test and the info was not even found until the 1990s...wild huh....

so, i would bet that many of the people who have had blood clots should be checked to make sure you dont have this...it would require different treatment if you get hospitalized etc...

thanks again for bringing this up...and lets spread that word...cause even if it is 6% of the population, that is 6 out of 100 too many and it is scary...


----------



## SamanthaNY

That's very good information, Sosh... anyone who has had a blood clot should probably be tested for factor V Leiden - do you know if that's a standard for DVT patients? That they're automatically tested?


----------



## SocialbFly

it is not commonly known...even some of our heart kids have been tested if they get a clot from a line, and many have come up positive...

if you have a family history of someone else having blod clots, or if you have had a serious blood clot, i would suggest being tested for it...often times just a baby aspirin a day will counteract the problems with leiden...my sister was on coumadin (wafarin) for 2 years or so...then went to a diff hematologist and he changed her meds around...i still think her high blood pressure is partially related to her blood clots in her arms...and i am thankful those clots didnt travel...

i think the more info we have is better...i always tell my parents of the kids i take care of...that you have to be an informed consumer now days...you need to take some responsability for your own life as well...we have the power to know what is going on in our lifes and bodies...if something doesnt feel right get it checked out, you know your body...and i tell them, they know their kids....most agree....


----------



## SamanthaNY

That's really good to know, Sosh... my grandmother died from blood clots, so I'm going to have this test done. I printed out the page from the link you gave earlier, and I'm bringing that with me to my next appointment.


----------



## Esme

I'll have to check too when I go in for my next test. Thanks for the info!


----------



## LillyBBBW

SamanthaNY said:


> That's really good to know, Sosh... my grandmother died from blood clots, so I'm going to have this test done. I printed out the page from the link you gave earlier, and I'm bringing that with me to my next appointment.



To this day no one knows what causes my clotting. I've been on thinners for years. To give you a glimpse of how completely discouraged about the whole thing I am, I thought of doing as you are doing Sam but I can almost see the smug look on my doctors face as he proudly proclames, "We already checked for that." Then again, why bother if the treatment for it is the same as what I'm doing now? A whole lot of nothing.


----------



## SamanthaNY

I can see how it would get mighty discouraging, Lilly - but why not just call the office and ask if that test has already been run? The nurses should be able to access that in your chart. 

All information is ammunition, ya know?


----------



## Frankie

I had all the genetic and other testing performed after my blood clot was diagnosed, and nothing was found. I was tested for everything and anything. My case is supposedly pretty fascinating, and I recall several occasions while I was hospitalized when I briefly awakened from my painkiller fog to see a group of physicians standing at the foot of my bed talking about me. I've been taking an anti-coagulant for over 18 months and my hematologist has no plans to have me stop taking it. I'm waiting for the new meds coming down the pike in a couple of years that will self-regulate the anti-coagulation action and not require constant blood monitoring the way warfarin does. A normal person's PT/INR (standard of measuring blood clotting) is between 0.8 and 1.2; my level must be kept between 3.0 and 3.5. If I eat too many leafy greens or other vitamin K laden foods, my level goes sub-therapeutic. Many medications tend to interact with warfarin, too, such as antibiotics. One week my level was 3.2; the next week, for no apparent reason except for the antibiotic, it plummeted to 1.3.


----------



## LillyBBBW

Frankie said:


> I had all the genetic and other testing performed after my blood clot was diagnosed, and nothing was found. I was tested for everything and anything. My case is supposedly pretty fascinating, and I recall several occasions while I was hospitalized when I briefly awakened from my painkiller fog to see a group of physicians standing at the foot of my bed talking about me. I've been taking an anti-coagulant for over 18 months and my hematologist has no plans to have me stop taking it. I'm waiting for the new meds coming down the pike in a couple of years that will self-regulate the anti-coagulation action and not require constant blood monitoring the way warfarin does. A normal person's PT/INR (standard of measuring blood clotting) is between 0.8 and 1.2; my level must be kept between 3.0 and 3.5. If I eat too many leafy greens or other vitamin K laden foods, my level goes sub-therapeutic. Many medications tend to interact with warfarin, too, such as antibiotics. One week my level was 3.2; the next week, for no apparent reason except for the antibiotic, it plummeted to 1.3.



We're living the same life Frankie, only add 14 years to the equasion. I can have green vegetables no more that twice a week and I get my warfarin deliverd in the mail. I had a team of chin rubbing doctors and students copping feels and asking hundreds of questions at random intervals during my luxurious stay at the hospital years ago. They still don't know what is causing my clots. Same ol' story everyone else tells, birth control triggered it. They try to keep my INR between 2 and 3 so I have a bit more slack than you do.


----------



## GrowingBoy

Speaking from experience on pulmonary embolisms (I've had two), they are one of the more potentially deadly illnesses, because you don't necessarily have symptoms that make you think "I need to get to an emergency room, now!". Yet if you don't, they can kill you. More people die each year from DVT than breast cancer. 

Before the first one, I had fevers that came and went and got steadily worse, but no pain at all. When I finally got back pain I thought I had pulled a muscle, and when it got so bad I went to the ER, they diagnosed me with pneumonia. Probably the only reason I'm alive today is that the other side of my back started to hurt too, and it occurred to me that "pneumonia doesn't work like that!". It took a CAT scan to diagnose the PE and then I spent most of a week under an oxygen tent. Bummer. 

The second time I was wiser; after running a fever and getting my initial back pain I went straight to the ER and told the nurse exactly what it was and how to diagnose it. 

I'm still not exactly sure what brought on the first one, but I can say that at the time I was eating a lot of spinach salad, drinking green tea, and taking vitamin supplements. Turns out that each of those things has a lot of Vitamin K, which aids clotting.


----------



## SamanthaNY

Wow, GB - I think the common thought is that PEs start from clots in the leg and move to the lung. I've never heard of it associated with back pain or fever, so I'm glad to hear of your experience. 

Glad you're okay now.


----------



## LillyBBBW

I've had about eight pulmonary emboli that I know of offhand. The first happened on a trip to a desert campground in amish country in PA. I had started taking birth control a week previously and after a nights sleep in the camp tent I awoke with a knot in my calf. I thought I pulled a muscle on the hiking trail. Worked it out and went about my day, a little winded but figuring that it was the dusty dry conditions. The next morning the cramp returned. I worked it out again and my breathing became worse. This went on a third time on the day it was for me to leave, a six hour drive back to Massachusetts. By the time I arrived home my calf was throbbing and I felt like hell. The maniacal health nazi who was driving refused to stop for any reason till I threatened to pee on his seats. When I arrived home I carried all my camping gear up and down three flights of stairs by myself.

I went to work using a cane still struggling to breath. Three days later the calf pain disappeared but my breathing was awful. I went to the gym thinking a good workout would whip me back into shape. When that didn't work I went to the doctor and he told me I needed more exercise and to lose some weight. A month went by and I got another calf cramp. I was too stupid to make a connection between a cramping calf and my difficulty breathing. The doctors continued to give me the runaround about the breathing suggesting that my sedentary job was the culprit. The breathing got so bad I quit going to the gym and started taking life easy. I knew something was wrong but no one was interested in helping me.

I got another clot. It went away. I got another clot. I also got a slew of calls for gigs and concert performances that are the bread and butter of my life. I finally went to my doctor and DEMANDED that he find something wrong because I had to work and at the point where I was there was no way that I could. Just rising from my chair had me gasping and puffing as though I had run a marathon. I called him on a daily basis asking for test results and pushing his buttons. Finally in frustration he said that he seriously could.not find anything physically wrong with me: no asthma, no heart condition. He suggested a blood clot and asked me if I had any pain in my leg. I told him that as a matter of fact, I'm using a cane today because some recurrent calf pain has returned to haunt me again. 

He told me to leave my office RIGHT NOW and come see him. He looked at my calf and sent me straight to the emergency room. My first day in the hospital, there were a total of 33 doctors, residents and interns surrounding my bed staring at me as if they were viewing the Messiah. This was approximately five months after my initial clot in the desert. My lungs were so full of clots that the doctors could not even see my lungs via the VQ scan. Apparently I should have been dead.


----------



## Frankie

Wow, Lilly - what a frightening story. I'm not usually a religious person, but I have to say that someone up there loves you very much. Thank God you survived that experience.

I know of someone who was hospitalized a few years ago with encephalitis? I think it was. During that ordeal, it was discovered that her lungs were riddled with dozens of pulmonary emboli. She has a genetic mutation that makes her prone to blood clots.


----------



## liz (di-va)

LillyBBBW said:


> He told me to leave my office RIGHT NOW and come see him. He looked at my calf and sent me straight to the emergency room. My first day in the hospital, there were a total of 33 doctors, residents and interns surrounding my bed staring at me as if they were viewing the Messiah. This was approximately five months after my initial clot in the desert. My lungs were so full of clots that the doctors could not even see my lungs via the VQ scan. Apparently I should have been dead.



Gawd, LIlly...that is beyond harrowing. I feel incredibly lucky that so many people were persistent in suggesting the possibility to me--I never would have guessed I had a clot. Yer amazing.

The thing that strikes me about your story--something I've been thinkin about recently as I undergo treatment for problems in that same leg now--is that in order to get the right treatment sometimes--often--you not only have to have a sense that they're missing something or have a sense where the real problem *might* be, you have to be prepared to hound your doctor to the end of the earth. Which is tantamount--sometimes--to saying you have to know better than they do. And when you don't...you can lose time/ground, sometimes more.

That charlie horse feeling in my calf now makes me feel panicky! Yuck.


----------



## GrowingBoy

liz (di-va) said:


> That charlie horse feeling in my calf now makes me feel panicky! Yuck.



The problem I think is that diagnosing a clot is not easy or inexpensive. My initial X-Ray couldn't distinguish between pneumonia and a clot; it took a CAT scan to definitively identify it. I've also had ultrasound in my legs to look for clots there, and the first time they didn't find anything; after the second PE, they did. 

If there were some simple and inexpensive test that could diagnose a clot, it seems like that could save many lives.


----------



## liz (di-va)

GrowingBoy said:


> The problem I think is that diagnosing a clot is not easy or inexpensive. My initial X-Ray couldn't distinguish between pneumonia and a clot; it took a CAT scan to definitively identify it. I've also had ultrasound in my legs to look for clots there, and the first time they didn't find anything; after the second PE, they did.
> 
> If there were some simple and inexpensive test that could diagnose a clot, it seems like that could save many lives.



They had a very hard time diagnosing my clot too--basically my leg was too swollen to see how swollen it was. And they really only diagnosed it circumstantially after the fact (with a very painful ultrasound!).

It all seemed very...sketchy!


----------



## LillyBBBW

After my initial clot horror story I was on thinners for a year. A month after I came off of them I was back in the hospital with another clot. During my stints in the hospital I was a popular teaching probe and people would come in all the time with students and interested parties. I figured it was the least I could do to help prevent what happened to me from happening to somebody else and because I was in there so long. Hospital stays are not cheap or easy by any means. While I was there I learned from the masters different ways to check the legs for clots. Even while on the thinners I get superficial clots and unexplained bruising, etc. It's feast or famine.

The most invasive way they discovered the clots was with an angiogram. They make a hole in your groin and wire a catheter up through your artery, through your heart and into the lungs. They inject this stuff that acts like a dye so it helps them see exactly where the blockages are in the lungs. I had that done each time I was in the hospital. Again, it's a very invasive and expensive procedure. If this happens to me again in my lifetime I will probably refuse the procedure. I'm not sure it makes much difference, the treatment is the same and at this point I'm known as a high risk anyway so what's to see?

I have a bunch of long flights coming up this summer. *shudders* I'm going to talk with my doctor about upping my meds slightly to raise my INR a tad.


----------



## Esme

One of my docs talked about a shot of somethingorother for when I have to fly. One of the nurses showed me some stretches to do too while on airplanes... I'm still afraid to fly with my clot history though. You have my sympaties Lilly


----------



## Frankie

Esme said:


> One of my docs talked about a shot of somethingorother for when I have to fly. One of the nurses showed me some stretches to do too while on airplanes... I'm still afraid to fly with my clot history though. You have my sympaties Lilly



The shot would be heparin, which is faster acting than warfarin. 

I read somewhere (perhaps it was in this thread!) that people should refrain from sleeping during long plane flights - people need to be awake, flexing their leg muscles while seated, keeping well hydrated, and trying to walk around the cabin abit to keep their blood moving.

Someone once posted on one of the Dim boards that they avoid drinking anything on flights so as not to have to use the tiny plane bathrooms - I think this was even made as a suggestion to another member. I thought that was bad advice.


----------



## LillyBBBW

I will be traveling all 'round Europe for two weeks. I thought of asking for Lovenox® to take with me for the return flight which is a prescription form of Heparin. The problem is that Lovenox® is administed through pre-measured hypodermic needles and I fear the customs agents might call the dogs on me.

As for sleeping on planes, I have never been on a flight and not fallen asleep. I'm not sure if its the air pressure or what but even on a flight that's only 45 minutes long I will slip into a sleep coma and wake just before landing. The say the urge to sleep on a plane is very common. I try to wake myself up every hour or so and do some leg exercises to keep the blood from pooling in the legs, I get up to go to the bathroom, etc. I flew to Hong Kong which was a 26 hour flight.  There was no way I could not sleep on the plane. I try to raise my INR a little before flying. Other than that doctors really don't recommend much more. They stop short of saying Don't Ever Go Anywhere.


----------



## Esme

In a weird way, it's comforting for me to know that I'm not the only one out here who's gone through the whole clotting thing... not that I'm glad anyone got them, far from it, but at least I feel a little less alone on the issue.


----------



## Frankie

Esme said:


> In a weird way, it's comforting for me to know that I'm not the only one out here who's gone through the whole clotting thing... not that I'm glad anyone got them, far from it, but at least I feel a little less alone on the issue.



Yeah, I was surprised to hear so many stories after I got my clot. It's much more common than many people realize.


----------



## LillyBBBW

Blood clots are indeed much more common than anyone realizes, and not just among the fat. I was once taken out on a date by a guy whom one would consider very petite. I was droning on about my story of clots when he chimed in saying that my story matched his almost identically. He was 5' 5" and a bit dainty for his height. There was one glaring similarity in our stories that I thought I should mention.

He and I both belonged to muscle gyms. We each had this habit of overstretching our calves. I would stand on the edge of a stair and lower my heels to extremes after each workout. He did something similar and both of us had frequent clots that began in our calves. We are lead to conclude that maybe the overstretching damaged the lining in the veins making us more susceptible to clots there. I mentioned it to a foot doctor who said that it's quite possible but he can't say for sure. Though I can't be certain I would say to anyone reading this to be conservative in your stretching routines. Less is more.


----------



## GrowingBoy

LillyBBBW said:


> He and I both belonged to muscle gyms. We each had this habit of overstretching our calves. I would stand on the edge of a stair and lower my heels to extremes after each workout. He did something similar and both of us had frequent clots that began in our calves. We are lead to conclude that maybe the overstretching damaged the lining in the veins making us more susceptible to clots there. I mentioned it to a foot doctor who said that it's quite possible but he can't say for sure. Though I can't be certain I would say to anyone reading this to be conservative in your stretching routines. Less is more.



Wow. I also do calf exercises as you describe (and also with weights). 
My clots began 6 months after I started training. And after my second PE they found a clot in my calf.


----------



## liz (di-va)

1) Wow (calves). I'm thinkin about this one. That's where my clot was too, as I said...

2) HOW oh HOW do y'all who are on blood thinners handle dentistry? Did you have to find a new specialized dentist? Go to your regular one? Go off blood thinners for a while before work/then back on?

I'm lookin at a bunch of gnarly dental work and am not sure how to proceed at the moment, since I am between dentists.

Any thoughts appreciated!


----------



## SamanthaNY

Calf (from what I understand, that's where the bulk of DVTs occur) and leg exercises are really important in keeping circulation up, and thus hopefully avoiding clots. That's a big part of the reason I use one of those pedal exercisers. 

I *think* you can still have dental work done (though, more serious procedures like gum lengthening, etc - maybe not) while you're on blood thinners - but you do need to advise the dental office beforehand, and for some procedures, suspend the blood thinners beforehand. This is from a great *FAQ* on blood thinners:

"*Surgery and Dental Work*
_Before any treatment is provided, tell all your doctors and dentists that you are taking warfarin. Before having a surgical or dental procedure, you may need to have a blood test, and you may need to stop taking warfarin for a few days. Do not stop taking warfarin without first consulting with the doctor who monitors your warfarin/INR._"


----------



## LillyBBBW

I've had no issues with the dentist. I've had the same dentist for the past 21 years. I told him that I was on blood thinners which they need to know but given my history of methodical cleanings every 6 months that last merely a half an hour no one gives me any trouble on it. I think I've even had a root canal since and there was no issue. The dentist merely needs to be made aware but I haven't noticed anything extra that I have to go through for dental visits. 

I've had other surgeries three times since though, and had to come off thinners three days before only to start back up immediately after surgery. To be safe I was given three days worth of Lovenox® to take after surgery while I waited for the coumadin/warfarin to become therapeutic again.


----------



## Esme

liz (di-va) said:


> 2) HOW oh HOW do y'all who are on blood thinners handle dentistry? Did you have to find a new specialized dentist? Go to your regular one? Go off blood thinners for a while before work/then back on?



I had a root canal while on coumadin (oh yeah, I know how to have FUN!). The dental doc said it was okay, but my vascular doc almost flipped when I told him what I'd had done. He's kind of protective of me though, and I really had no problems with it. Just be sure and let the dentist know what's up.


----------



## Frankie

liz (di-va) said:


> 1) Wow (calves). I'm thinkin about this one. That's where my clot was too, as I said...
> 
> 2) HOW oh HOW do y'all who are on blood thinners handle dentistry? Did you have to find a new specialized dentist? Go to your regular one? Go off blood thinners for a while before work/then back on?
> 
> I'm lookin at a bunch of gnarly dental work and am not sure how to proceed at the moment, since I am between dentists.
> 
> Any thoughts appreciated!



1) My clot was located in my abdomen, at the intersection of three veins: mesenteric, splenic, and portal. If I had had a clot in my leg, I might have been off the blood thinner by now. My clot was just too crazy, so my hematologist doesn't want to take any chances. 

2) Um, dentistry, yeah. I haven't been to the dentist in a couple of years. I have dentist phobia! As I like to say, I'd rather go to the gyno every day of the year than see the dentist twice a year. The weird thing is, I've never even had a bad experience with dental work. Three or four cavities, one painless root canal, even gum planing (not pleasant, but not painful either). I'm just terrified for no good reason. I'm trying to psych myself up to go soon, though.


----------



## liz (di-va)

Thanks for the advice about dentistry...I'm way overdue  and really need to freakin deal with this, but the coumadin's been a new worry in it all. I will check w/ dr/try to find a dentist... I wanna get my teeth in good enough shape that I'm back to maintenance and not Overhaul. WIll take a while.

I'm all phobic about dentists too, sigh. I have a really tiny mouth and a high palate, and it makes dental work fairly nightmarish. Between that and the coumadin, I really need somebody who's used to a Dental Challenge, not to mention a fat chick who gets so wigged out she pops the head off of stress dolls while she's in the Chair...


----------



## LillyBBBW

liz (di-va) said:


> Thanks for the advice about dentistry...I'm way overdue  and really need to freakin deal with this, but the coumadin's been a new worry in it all. I will check w/ dr/try to find a dentist... I wanna get my teeth in good enough shape that I'm back to maintenance and not Overhaul. WIll take a while.
> 
> I'm all phobic about dentists too, sigh. I have a really tiny mouth and a high palate, and it makes dental work fairly nightmarish. Between that and the coumadin, I really need somebody who's used to a Dental Challenge, not to mention a fat chick who gets so wigged out she pops the head off of stress dolls while she's in the Chair...



No two dentists are alike I find. I find you have to shop for a dentist similar to how you shop for a hair dresser: you see someone with great hair and ask who's their stylist. You can go to one dentist who butchers your mouth up and you never go back again, meanwhile the chap next door is as gentle as a lamb and a totally different animal. I found my dentist through the place where I work. Everybody was going to him and they loved him and raved about his state of the art facility and location. Since then I've turned other people on to him, even the dentist squeamish like yourself and they really liked his approach. I would suggest asking people which dentist they see and how they feel about him/her. People who love going to the dentist or go fairly regularly are the ones who have happened upon a gem.

Once the dentist has a looksee in your mouth they will be able to tell you weather or not you have to go through any extra steps to be seen. If they have to do anything deep within the gums they may have you stop your thinners for fear of bleeding but you would have to be in pretty bad shape and have a pretty bad dentist for that to be an issue. Ask around for a good dentist. Don't just pick one.


----------



## Miss Vickie

Lilly's right, Liz. The only other thing I can suggest is that you a) tell them your phobias and maybe ask for Valium (believe me, lots of people do), and b) see if you can have a friend come with you for your appointments, a kind of dental doula of sorts. I've done this for friends and it really makes them feel a LOT more comfortable. Definitely check with the dentist first (dental ops are pretty tiny places) but having a friend there, sitting at your feet, can make all the difference.


----------



## Miss Vickie

missaf said:


> There are dentists who will put you in a twilight sleep (short general anesthetic). A simple quick IV, and a half hour later you're back on your feet with your cleaning, fillings and what not all done! I've not had to do this myself, but if you have a real phobia of dentists, why not?



My only caution about this is that a patient needs to be sure that the dentist has had thorough training in anesthesia and the means to reverse the sedation immediately. Sadly, many dentists can complete an afternoon course and are "certified" to provide this kind of sedation. It's pretty scary, especially if you're dealing with children, the elderly, or anyone with a preexisting circulatory or pulmonary condition, but even the general public is at risk. It's a good idea -- we just need to be sure that the dentist knows what he (or she!) is doing.


----------



## SamanthaNY

Folic Acid Supplements Cut Stroke Risk

FRIDAY, June 1 (HealthDay News) -- Folic acid supplementation may reduce the risk of stroke by 18 percent or more, but it's not clear whether it boosts outcomes for other cardiovascular conditions, researchers say.

A study published last year in the journal Circulation found that there was a significant drop in stroke death rates in Canada and the United States after both countries mandated folic acid fortification of cereals and breads in 1998.

For the new research, a U.S. team reviewed eight studies of folic acid supplementation, which lowers concentrations of homocysteine in the blood. High homocysteine levels are believed to increase the risk of stroke, cardiovascular disease, and *deep vein thrombosis.* (emphasis mine)

more here


----------



## Esme

So, Liz, did you call the dentist yet??? Hmm???


----------



## Esme

Okay, I made my next doppler and doctor appointment. I get so nervous about these anymore. I am almost at the year point with this whole DVT experience and I want it to be done. I worry though.

Does anyone else think that everything you feel that's just a little weird is a clot once you've had a DVT? I'm thinking I may just be obsessing, but I worry about my leg all the time.


----------



## liz (di-va)

Esme said:


> So, Liz, did you call the dentist yet??? Hmm???



gah! I missed this!  I am looking! I found one dentist who was convenient, but I just couldn't stand him, so I'm lookin again...



Esme said:


> Okay, I made my next doppler and doctor appointment. I get so nervous about these anymore. I am almost at the year point with this whole DVT experience and I want it to be done. I worry though.
> 
> Does anyone else think that everything you feel that's just a little weird is a clot once you've had a DVT? I'm thinking I may just be obsessing, but I worry about my leg all the time.



Query: Are you supposed to keep having Doppler appointments when you have had a blood clot? I've had a few Doppler, but only because the first ones didn't show results, but once we could see the leg....that's it. I guess I'm a little unclear about what's the expected maintenance in this situation, when it's not chronic...

anyhow, yeah, I do know what you mean, Esme! That charley-horse feeling is enough to make me clench with fear! it's awful. But I also can't worry about all this too much, otherwise I'd stress-bomb.


----------



## Esme

liz (di-va) said:


> Query: Are you supposed to keep having Doppler appointments when you have had a blood clot? I've had a few Doppler, but only because the first ones didn't show results, but once we could see the leg....that's it. I guess I'm a little unclear about what's the expected maintenance in this situation, when it's not chronic...



Yes, Liz. I had a clot and was hospitalized for it last August. Most horrible week of my life I'd have to say. I was on coumadin for six months, and have had regular dopplers since then. My vascular doctor says that the clot has basically made scar tissue in my vein, so I have to keep an eye on it. 

I'm a natural worrier, so I'm a stressball over things like this. I know I need to get the stress under control, but sometimes that's easier said than done.


----------



## LillyBBBW

Esme said:


> Yes, Liz. I had a clot and was hospitalized for it last August. Most horrible week of my life I'd have to say. I was on coumadin for six months, and have had regular dopplers since then. My vascular doctor says that the clot has basically made scar tissue in my vein, so I have to keep an eye on it.
> 
> I'm a natural worrier, so I'm a stressball over things like this. I know I need to get the stress under control, but sometimes that's easier said than done.



What is a doppler?


----------



## Esme

The doppler is the ultra-sound whoosh-whooshy thing that shows the inside of my leg so they can check the clot.


----------



## Esme

*bump*

Just got back from my latest DVT doppler and doc visit, so I wanted to share. Things are looking okay. There's still scar tissue in the vein, but it's a lot better than it was. I've got a six-month pass this time. YAY! It feels good to know that this situation, while it may never go away, is completely managable and mostly hassle-free. For something so potenetially dangerous, the management has been pretty easy.

Please keep in check!


----------



## Frankie

That's great news, Esme. It's such a huge relief, isn't it?

I have a large mass of scar tissue where my clot was. I don't believe it ever goes away. Thank goodness for collateral vein growth.

What's a pain now is that with all of this heat, I'm in the mood to eat more leafy green salads. But I don't care to have to take more warfarin. 

Do any of you know anything about those INR home testing devices - kind of like a blood sugar monitor for diabetics? I need to research them more. I wonder if they're accurate. I know they're very expensive.


----------



## Esme

Frankie said:


> That's great news, Esme. It's such a huge relief, isn't it?
> 
> I have a large mass of scar tissue where my clot was. I don't believe it ever goes away. Thank goodness for collateral vein growth.
> 
> What's a pain now is that with all of this heat, I'm in the mood to eat more leafy green salads. But I don't care to have to take more warfarin.
> 
> Do any of you know anything about those INR home testing devices - kind of like a blood sugar monitor for diabetics? I need to research them more. I wonder if they're accurate. I know they're very expensive.



Hmm... No, I don't know much about the home INR test kits. Right now I'm off the rat poison (Warfarin) and just taking aspirin to keep things flowing nicely. The thing I did want to comment on was the leafy greens. I take a food-based vitamin called Medi-Safe, which has no K in it, so my doctor actually told me not to cut out the dark greens completely since our bodies do need them. She basically told me just to eat them in moderation; I can't eat a bushel of spinach, for example. I was also instructed to take a B complex vitamin by the blood specialist, though I'm not remembering what it was supposed to do for me right now. D'oh!:doh: 

My biggest problem right now is the stupid compression hose. I just can't make myself wear them in the summer, so I got a talking-to from the vascular doc today and a "gentle nudge" from my DO yesterday. I'm good about keeping it elevated though, so I'm only going to wear them around the house and for walks and things right now. We're compromising.  I love my doctors... I really do!

I hope things go as well for you as they have for me. I've been blessed with amazing doctors and nurses throughout this experience, and my heart aches when I read the horror stories others have experienced with their medical professionals.


----------



## squurp

All of you that have struggled with DVT, you should see a hematologist. Doctors know now, thanks serendipitously from IVF research, that there are at least 6 (that they know of and can test for) genetic traits that can cause increased risk of DVT, blood clots, etc. If you have certain of these factors, there are medications for treatment, and birth control alternatives that can make your life much easier, and probably longer. I don't know all the genetic lingo, but if you see a hematologist, they can fill you in, for sure. Good luck to you all.


----------



## Esme

squurp said:


> All of you that have struggled with DVT, you should see a hematologist. Doctors know now, thanks serendipitously from IVF research, that there are at least 6 (that they know of and can test for) genetic traits that can cause increased risk of DVT, blood clots, etc. If you have certain of these factors, there are medications for treatment, and birth control alternatives that can make your life much easier, and probably longer. I don't know all the genetic lingo, but if you see a hematologist, they can fill you in, for sure. Good luck to you all.



Good info. I've been there; done that. I had enough blood drawn and tested to make a vampire squeal. I have one mutation, but I can never remember how to pronounce it. My doc said to call it the "days of the week" mutation... something about the letters forming an acronym. *shrugs* Anyway, they pretty much determined that the birth control pills and a long car ride made mine noticeable. I go back for retesting in about four months. I'm kind of coming to the conclusion that this will be a life-long issue, but also a very manageable one.


----------



## Frankie

squurp said:


> All of you that have struggled with DVT, you should see a hematologist. Doctors know now, thanks serendipitously from IVF research, that there are at least 6 (that they know of and can test for) genetic traits that can cause increased risk of DVT, blood clots, etc. If you have certain of these factors, there are medications for treatment, and birth control alternatives that can make your life much easier, and probably longer. I don't know all the genetic lingo, but if you see a hematologist, they can fill you in, for sure. Good luck to you all.



I realize you're trying to be helpful, but I find this post naive on your part. I'm not sure what makes you think none of us haven't already been treated by a hematologist. I've been studied up and down, backwards and forwards, inside and out by hematologists. You don't end up with one clot totaling about nine inches that's managing to nearly occlude three different abdominal blood vessels simultaneously AND survive a pulmonary embolism and NOT be seen by a hematologist. I was hospitalized for two weeks. I'd wake up and find groups of doctors surrounding my bed looking at me and talking about me. I've been tested for everything and anything that might contribute to DVT, including all tests for all known genetic mutations. Nothing was found. Last I heard I was going to be written up as a case study because my situation is so rare, and I do recall my binder during my two-week stay in the hospital being several inches thick, as at times I held it in my lap as I was wheelchaired from one procedure to another.

And if you really want to see me get cranky, ask me about how one doctor thought I was a drug addict because 1) I have a Valium prescription I use maybe twice a year, and 2) I was in such constant, excruciating pain caused by the blood clot that yes, I did want a continuous supply of painkillers and the only thing that was strong enough was Dilaudid HP, aka drugstore heroin. Ironically, that idiot's belief coupled with a nurse's mistake on my chart ended up with me being overmedicated, but that's another story. Imagine being a wet towel that's violently rung out every other second non-stop, and that's the best metaphor I can give for how I felt. There was just no relief. At one point I had shots of morphine that would wear off after 15 minutes. It took weeks and several visits to different doctors and emergency rooms to finally get some real treatment and a diagnosis. My hospitalization was an awful experience, and the icing on the cake were the severe corneal ulcers I developed during that time because I forgot (and nobody asked) about the contact lenses I'd been wearing.


----------



## Frankie

I never thanked you for your response, Esme. I plan to look into this Medi-Safe stuff. I haven't heard about taking a B complex vitamin, so I'm going to check that out, too.

I don't have the compression hose issue since I had an abdominal blood clot, but I do think twice about wearing too tight pants that cut me in two when I sit. That can't be a good thing for circulation.



Esme said:


> Hmm... No, I don't know much about the home INR test kits. Right now I'm off the rat poison (Warfarin) and just taking aspirin to keep things flowing nicely. The thing I did want to comment on was the leafy greens. I take a food-based vitamin called Medi-Safe, which has no K in it, so my doctor actually told me not to cut out the dark greens completely since our bodies do need them. She basically told me just to eat them in moderation; I can't eat a bushel of spinach, for example. I was also instructed to take a B complex vitamin by the blood specialist, though I'm not remembering what it was supposed to do for me right now. D'oh!:doh:
> 
> My biggest problem right now is the stupid compression hose. I just can't make myself wear them in the summer, so I got a talking-to from the vascular doc today and a "gentle nudge" from my DO yesterday. I'm good about keeping it elevated though, so I'm only going to wear them around the house and for walks and things right now. We're compromising.  I love my doctors... I really do!
> 
> I hope things go as well for you as they have for me. I've been blessed with amazing doctors and nurses throughout this experience, and my heart aches when I read the horror stories others have experienced with their medical professionals.


----------



## Esme

Frankie said:


> I never thanked you for your response, Esme. I plan to look into this Medi-Safe stuff. I haven't heard about taking a B complex vitamin, so I'm going to check that out, too.
> 
> I don't have the compression hose issue since I had an abdominal blood clot, but I do think twice about wearing too tight pants that cut me in two when I sit. That can't be a good thing for circulation.



Here 'tis! I have friends who own a health food store who found this product for me. I take the B Complex from the same company. 

http://www.megafood.com/products/dailyfoods/medisafe.php


----------



## squurp

Frankie said:


> I realize you're trying to be helpful, but I find this post naive on your part. I'm not sure what makes you think none of us haven't already been treated by a hematologist. I've been studied up and down, backwards and forwards, inside and out by hematologists. You don't end up with one clot totaling about nine inches that's managing to nearly occlude three different abdominal blood vessels simultaneously AND survive a pulmonary embolism and NOT be seen by a hematologist. I was hospitalized for two weeks. I'd wake up and find groups of doctors surrounding my bed looking at me and talking about me. I've been tested for everything and anything that might contribute to DVT, including all tests for all known genetic mutations. Nothing was found. Last I heard I was going to be written up as a case study because my situation is so rare, and I do recall my binder during my two-week stay in the hospital being several inches thick, as at times I held it in my lap as I was wheelchaired from one procedure to another.
> 
> And if you really want to see me get cranky, ask me about how one doctor thought I was a drug addict because 1) I have a Valium prescription I use maybe twice a year, and 2) I was in such constant, excruciating pain caused by the blood clot that yes, I did want a continuous supply of painkillers and the only thing that was strong enough was Dilaudid HP, aka drugstore heroin. Ironically, that idiot's belief coupled with a nurse's mistake on my chart ended up with me being overmedicated, but that's another story. Imagine being a wet towel that's violently rung out every other second non-stop, and that's the best metaphor I can give for how I felt. There was just no relief. At one point I had shots of morphine that would wear off after 15 minutes. It took weeks and several visits to different doctors and emergency rooms to finally get some real treatment and a diagnosis. My hospitalization was an awful experience, and the icing on the cake were the severe corneal ulcers I developed during that time because I forgot (and nobody asked) about the contact lenses I'd been wearing.



Wow. Just Wow.

I sat at my wife's bedside in the hospital for two weeks while she suffered with a pulmonary embolism. I talked with doctors, nurses, etc. I dealt with her severe reaction to coumadin. I dealt with her having multiple miscarriages. FOr years, I dealt with all of this and not once, not a single time, was she referred to a hematologist. It is for this reason, that I suggest anyone with DVT history see one. 

I made no assumption in my post about who had and had not seen one. I offered it as help, to avoid what my wife and I have gone through. 

I also made no assumptions about your life sir, as I know nothing about it. I think in fact, your post may be naive, to assume that some do not need to hear that there may be help out there, and how they might take advantage of it. 

You've made a lot of assumptions about my post, and you sure went at it with a chip on your shoulder. Perhaps it is worth re-reading - without the chip.


----------



## liz (di-va)

Update: I am still shoppin for a good dentist; think I may have found one! Yay. 

THANKY, Y'ALL.


----------



## LillyBBBW

squurp said:


> Wow. Just Wow.
> 
> I sat at my wife's bedside in the hospital for two weeks while she suffered with a pulmonary embolism. I talked with doctors, nurses, etc. I dealt with her severe reaction to coumadin. I dealt with her having multiple miscarriages. FOr years, I dealt with all of this and not once, not a single time, was she referred to a hematologist. It is for this reason, that I suggest anyone with DVT history see one.
> 
> I made no assumption in my post about who had and had not seen one. I offered it as help, to avoid what my wife and I have gone through.
> 
> I also made no assumptions about your life sir, as I know nothing about it. I think in fact, your post may be naive, to assume that some do not need to hear that there may be help out there, and how they might take advantage of it.
> 
> You've made a lot of assumptions about my post, and you sure went at it with a chip on your shoulder. Perhaps it is worth re-reading - without the chip.



I agree. I'm sorry your ordeal was so harrowing as was mine Frankie, but my ordeal happened over 15 years ago. I've been religiously taking my warfarin daily but it never occured to me that new developements and understanding could have come along since then. It's possible I could be doing better for myself and without squurp's post I would have never bothered to take a second look. Might not lead to anything new for me but it's good info. His post may have seemed patronizing to you but for me it was useful.


----------



## Frankie

I did find squurp's post patronizing, but I guess I was taking it for granted that everyone has access to the same level of health care that I have. I did have a bad experience when I was hospitalized, but I switched hematologists after that and have other doctors whom I trust and respect, doctors who take time to answer my questions and provide me with information. Additionally, I guess I shouldn't assume that everyone who's taking warfarin has (or maybe is able to have) regular visits with a hematologist. 

As for new developments, my doctor told me that medications are in the works that have a wide therapeutic range without the need for routine anti-coagulation monitoring or dosage adjustments. Unfortunately, the one that appeared to be the most promising practical alternative to warfarin, a direct thrombin inhibitor called ximelagatran, was abandoned last year after liver toxicity was reported during trials. So, for the time being we're still stuck with warfarin and its unpredictability. It's not the only option, but it's the most convenient as other available agents are administered via injection.




LillyBBBW said:


> I agree. I'm sorry your ordeal was so harrowing as was mine Frankie, but my ordeal happened over 15 years ago. I've been religiously taking my warfarin daily but it never occured to me that new developements and understanding could have come along since then. It's possible I could be doing better for myself and without squurp's post I would have never bothered to take a second look. Might not lead to anything new for me but it's good info. His post may have seemed patronizing to you but for me it was useful.


----------



## LillyBBBW

Frankie said:


> I did find squurp's post patronizing, but I guess I was taking it for granted that everyone has access to the same level of health care that I have. I did have a bad experience when I was hospitalized, but I switched hematologists after that and have other doctors whom I trust and respect, doctors who take time to answer my questions and provide me with information. Additionally, I guess I shouldn't assume that everyone who's taking warfarin has (or maybe is able to have) regular visits with a hematologist.
> 
> As for new developments, my doctor told me that medications are in the works that have a wide therapeutic range without the need for routine anti-coagulation monitoring or dosage adjustments. Unfortunately, the one that appeared to be the most promising practical alternative to warfarin, a direct thrombin inhibitor called ximelagatran, was abandoned last year after liver toxicity was reported during trials. So, for the time being we're still stuck with warfarin and its unpredictability. It's not the only option, but it's the most convenient as other available agents are administered via injection.



I didn't know any of this. I guess I've just been on autopilot these past few years in a routine that allows me to function like a normal person. I wanted to get away from doctors and medical scare mongering all together and just drone through life getting by. It was so much easier for me than to spend every waking moment in terror like I was before. No one seemed eager to do anything but send me to Jenny Craig so I didn't think much would change.


----------



## Frankie

Well, you haven't missed much to the extent that warfarin still seems to be our only practical option.

Wikipedia has a nice little summary of ximelagatran, including a chart at the bottom of the page showing the different classes of anti-thrombotics.

http://en.wikipedia.org/wiki/Ximelagatran


----------



## SamanthaNY

News reports say that this is more useful for people yet to be prescribed Warfarin/Coumadin... not so much for those already on it and at a comfortable/effective dose. 

_Warfarin, sold under the brand name Coumadin and in generic forms, on Thursday became the first widely used drug to include genetic testing information on its label. The information can help doctors determine how best to prescribe the drug.

"This means personalized medicine is no longer an abstract concept but has moved into the mainstream," the Food and Drug Administration's clinical pharmacology chief, Larry Lesko, said in announcing the label change.

The updated label for warfarin suggests that lower doses may be best for patients with variations in two specific genes. One produces an enzyme that helps the body metabolize warfarin and other medicines; the second produces the blood-clotting protein that warfarin blocks._

more


----------



## liz (di-va)

I had a consult with a surgeon about some potential surgery recently and he told me that having had (even one) clot, I am now considered a surgery risk. That is, in order to perform the surgery with general anaesthetic, they will have to implant a lil umbrella (fergit tech term) into my largest vein to prevent me from throwing a clot.

My clot arrived 3 mos after a birth control pill, and I've never had others, so evidence is strong I'm not inclined to them in general, but...regardless--now, for any surgery apparently I will have to do something like this. Have y'all heard mention of such things? It's a little daunting, given that now any major surgery carries even more things to think about, yick. I just wondered what else people have been told. I'm sure it varies for other reasons--and I like that this surgeon is a conservative guy and not into carvin ya up willy nilly--but I wonder what the story is for other folks.

My apologies, as ever, if I'm missing a previous discussed bit in this thread!


----------



## LillyBBBW

liz (di-va) said:


> I had a consult with a surgeon about some potential surgery recently and he told me that having had (even one) clot, I am now considered a surgery risk. That is, in order to perform the surgery with general anaesthetic, they will have to implant a lil umbrella (fergit tech term) into my largest vein to prevent me from throwing a clot.
> 
> My clot arrived 3 mos after a birth control pill, and I've never had others, so evidence is strong I'm not inclined to them in general, but...regardless--now, for any surgery apparently I will have to do something like this. Have y'all heard mention of such things? It's a little daunting, given that now any major surgery carries even more things to think about, yick. I just wondered what else people have been told. I'm sure it varies for other reasons--and I like that this surgeon is a conservative guy and not into carvin ya up willy nilly--but I wonder what the story is for other folks.
> 
> My apologies, as ever, if I'm missing a previous discussed bit in this thread!



I had pulmonary emboli one month after birth control. I don't take BC but still have an inclination to create clots so I'm on warfarin for life.  I've had surgery three times since the clot and each time I had to come off warfarin three days before the surgery. Immediately after, I began taking Lovanox which is an injection form of anticoagulant. I took that while waiting to regain therapeutic levels on Warfarin which took three days. I've heard of the screen catch thing and when I had my second clot they threatened to put that in me if I created any more. It was never mentioned for surgical procedures. In fact, the Lovanox routine was suggested at my urging because I was nervous about being bedridden after surgery and not being therapeutic. The Lovanox worked like a charm for me, but you've got to be okay with sticking needles into your belly at the exact same time each day or having a visiting nurse come by and do it for you if your insurance allows. 

I wonder if the screen catch idea is being suggested because of the length of time of your surgery? A surgery that is only going to take an hour or two give or take might not make them worry but if you will be surgically immobile for a significant amount of time they may be more fearful of clotting. Or if they feel that after your surgery you will not be coherent enough to remember to take your meds of care for yourself properly? If you don't feel like the screen catch is necessary ask them about the Lovanox regimen.


----------



## LillyBBBW

*bump*

I dug up this old thread because of a very interesting conversation I had last night with a singer in the chorus. I was recounting my issues with DVT and how they were caused by the pill and she told me that hers and my story could be identical. This woman is petite yet normal sized and EXTREMELY health concious to the point of almost hysteria. I get tired of listening to her sometimes but I digress. She's always been like that and she got blood clots that left her with edema in her leg(s)? She had terrible swelling for years and was a regular wearer of compression stockings but the swelling is gone now thanks to a relatively new procedure she had in December. The procedure is the same one they use to get rid of vericose veins. They find the defective vein with the broken valves, injected it with saline and destroy it. It sounds a little strange to me yet she had it done in December and says she hasn't had any swelling issues since. She said it's based on the theory that the body will naturally create new veins to compensate for the one destroyed and it's worked like a charm for her. She wore compression stockings for 72 hours after the procedure, actualy performed in a concert the day after it was done, and when the 72 hours were up that was the last day she ever needed them.

I have dropped off of the face of the earth with my doctors and have been AWOL for years so I don't know what's newly developed or what they're saying now. Does anyone know anything about this?


----------



## Frankie

I've never heard of that, Lilly (not that that means anything). Hopefully I'll remember to ask my hemo the next time I see him.


----------



## squurp

LillyBBBW said:


> *bump*
> 
> I dug up this old thread because of a very interesting conversation I had last night with a singer in the chorus. I was recounting my issues with DVT and how they were caused by the pill and she told me that hers and my story could be identical. This woman is petite yet normal sized and EXTREMELY health concious to the point of almost hysteria. I get tired of listening to her sometimes but I digress. She's always been like that and she got blood clots that left her with edema in her leg(s)? She had terrible swelling for years and was a regular wearer of compression stockings but the swelling is gone now thanks to a relatively new procedure she had in December. The procedure is the same one they use to get rid of vericose veins. They find the defective vein with the broken valves, injected it with saline and destroy it. It sounds a little strange to me yet she had it done in December and says she hasn't had any swelling issues since. She said it's based on the theory that the body will naturally create new veins to compensate for the one destroyed and it's worked like a charm for her. She wore compression stockings for 72 hours after the procedure, actualy performed in a concert the day after it was done, and when the 72 hours were up that was the last day she ever needed them.
> 
> I have dropped off of the face of the earth with my doctors and have been AWOL for years so I don't know what's newly developed or what they're saying now. Does anyone know anything about this?



This is news to me, but the science behind it makes some sense. However, I would think it'd have to do with the severity of the clotting, and might not work for patients with already compromised circulation. Also, it doesn't do much for pulmonary embolism, etc.


----------



## LillyBBBW

squurp said:


> This is news to me, but the science behind it makes some sense. However, I would think it'd have to do with the severity of the clotting, and might not work for patients with already compromised circulation. Also, it doesn't do much for pulmonary embolism, etc.



That is true, it won't do anything at all to prevent more clots however I forsee other benefits. Aside from the cosmetic effects it seems it would cut down on the degenerative effects constant swelling has on the skin. I've been very careful with my skin but I'm told you can develope ulcers and increased chances of cellulitis. I admit I don't know an awful lot about how it works but I reckon if you're able to stop the swelling it can greatly reduce the incidence of other things. Getting rid of non working veins can only aid in the body's ability to create better pathways and improve curculation, it seem like a win/win. Am I off base?


----------



## squurp

Nope, I think you are dead on. If it has good results and reduces swelling, it should surely be an option on the table.


----------



## Neen

DVT is scary!! I read those resources and am making sure to get out and walk, run ,ect. I am young..24, but stuff like that could happen to anyone! Thanks for enlightening us!


----------



## liz (di-va)

hey Lilly - 

I'm fairly sure that that is the surgery my vascular surgeon considered but then rejected as too much of a risk for me. As with all these things the reasons in retrospect now don't seem so clear, but suffice to it to say I'm now starting to wish I really could look into something like this. Most of the swelling in my left leg is caused by this blood being dumped in my calf that has no big vein to get it back out...wish it could get Fixed.

Will probably ask again at some point, so will report back.


----------



## LillyBBBW

liz (di-va) said:


> hey Lilly -
> 
> I'm fairly sure that that is the surgery my vascular surgeon considered but then rejected as too much of a risk for me. As with all these things the reasons in retrospect now don't seem so clear, but suffice to it to say I'm now starting to wish I really could look into something like this. Most of the swelling in my left leg is caused by this blood being dumped in my calf that has no big vein to get it back out...wish it could get Fixed.
> 
> Will probably ask again at some point, so will report back.



May be worth it to have a look see. Since the procedure is relatively new it is possible that not enough was known regarding risks and such at that time. Now there may be a more clear picture leaning more towards the positive. Age may play a factor in how well one would do with such a surgery. An FYI, my friend who had the procedure is thinish, a mother of five and in our age realm if not a smidge older.


>>>GRAPHIC DESCRIPTION, DO NOT READ IF YOU ARE EASILY SQUEAMISH<<<​

Your story reminds me of a friend of mine who somehow managed to bumble her way into medical school. Naturally I hadn't seen her in a while with her studies. When I did I asked of her adventures and she went wide eyed telling me of a surgery she was in on where a woman's large vein was replaced with some kind of gortex material?  She said it was some material used for scuba gear. Anyway, an instrument similar to a long gavel was inserted in the leg and drawn back out peeling the vein with it. then the tube was placed in as a replacement. She glowed that it was the most wonderous thing she'd ever seen. I've no idea what became of the patient.


----------



## imfree

Here's a copy of one I posted in another thread.

I've broken about half a dozen chairs at my computer desk.
I think they've been hurting me, too, not by fall injury, but
by causing circulation problems in my lower legs. Most of
the chairs put pressure in my mid-thigh. This Carex bath
seat allows my feet to rest on the floor. It still put
pressure on my mid-thighs and caused circulation
problems. A few days ago, I adjusted the back legs and
raised the back about 1&1/2 inches. The pressure has
been relieved and it will be interesting to see if that helps
my legs heal.* ....snipped.........Guys watch out for those 
computer chairs and don't let them cut your circulation in 
the lower legs! My legs already feel better and stronger. I 
don't get leg pain when I'm at the computer desk anymore.

* I have celulitis and the fluid weeping, leg wounds, and
infections that go with it. The chairs caused uncomfortable
pressure in the mid-thigh area and would cause my lower
legs to tingle and hurt when I sat for extended periods.


----------



## LillyBBBW

*bump*

Serena Williams was just treated at Cedars-Sinai for a PE. The article presented some interesting info about PE that raised one of my eyebrows at least. I've had two PE and was never told some of this.

http://www.aolhealth.com/2011/03/02/serena-williams-suffers-pulmonary-embolism/?ncid=webmail


----------



## bonified

Just a sideish note, for those who are less active desk bound a lot etc try a swiss ball. Seriously, they are awesome, comfy & fun! You can bounce and move around. Take a lil bit of getting used to, but no biggie, it's sedentary without being so sendentary plus you never get a sore arse, back or legs or any of the associated ailments from sitting for such long periods. Also you work your core just sitting when you dont even know you're doing it. 

Invest in a good one, mine I took from work when I was made redundant, it's anti burst for 500lbs but even when I was more than that, it held up and ive had mine since 2000 poor thing lol


----------

