Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Hi, I'm new to all of this and I've been reading up some things on this website which are very helpful and informative, but I have a few questions and wondered if anyone could help...doctors are very evasive and not very informative!!
I'm a 29 year old female, I eat well, (I'm vegetarian, occasionally eat fish) and keep active.
For the past year I have been suffering with abdominal pains and cramps, constipation, (I was then diagnosed with IBS without any testing) and I've had recurring kidney infections too. I also have Raynauds phenomena for the past few years with a positive ANA, but I have never been diagnosed with an auto immune disease.
About 5 weeks ago I started to feel really sick, I was vomiting, with fever and aches and pains, first I thought it was a virus. The pains were worst in my abdomen and lower back and seemed to gravitate from my left side to the right side of my abdomen. I was like this for three days and couldn't get out of bed. On the third day I went to the doctor and he referred me straight to the A and E, suspecting appendicitis. In hospital, they didn't do a scan and took me straight to theatre the next day to perform keyhole surgery and took out my appendix. I was kept in hospital for a week after the operation, and still couldn't walk when I went home. I wore T.E.D. stockings in hospital and they injected me with heparin to prevent blood clots forming.
THree weeks later I still couldn't walk and was kept awake at night with pain in my abdomen, and down my left leg. My doctor again referred me to A and E and I was kept in hospital again for a week. They told me that my appendix was perfectly fine when they took it out, so it wasn't appendicitis after all.
They did a scan and found a blood clot that went from my iliac vein to my femoral vein. My left leg was red and swollen and twice the size of my right one. They told me it was a DVT, and that I possibly had another blood clot, but that there was no point doing another scan yet as the blood thinners would dissolve them. They started me on heparin injections for a few days and I'll be on warfarin for min 6 months.
I am now out of hospital and have been referred to a warfarin clinic. I was on the contraceptive pill but have stopped taking it. As the doctors didn't do a scan when I came to hospital first they don't know if my initial problem was from a blood clot or if I developed it after surgery. I still can't walk as I can't put weight on my left leg, I'm using a walking frame to get around the house.
I'm just wondering if anyone can shed light on a few questions:
*Any idea on how long it will be before I'm walking again? or able to do exercise?
* Could raynauds phenomena have anything to do with developing blood clots?
* Any suggestions on taking warfarin as a vegetarian?
* Is it common to get abdominal pains with a blood clot in the groin?
I am trying to determine how I got the blood clot (if it was pre or post surgery) and to figure out what my original problem was, as I still have digestive/abdominal problems.
Sorry this is such a long post!! Thanks a lot :)
I'm a 29 year old female, I eat well, (I'm vegetarian, occasionally eat fish) and keep active.
For the past year I have been suffering with abdominal pains and cramps, constipation, (I was then diagnosed with IBS without any testing) and I've had recurring kidney infections too. I also have Raynauds phenomena for the past few years with a positive ANA, but I have never been diagnosed with an auto immune disease.
About 5 weeks ago I started to feel really sick, I was vomiting, with fever and aches and pains, first I thought it was a virus. The pains were worst in my abdomen and lower back and seemed to gravitate from my left side to the right side of my abdomen. I was like this for three days and couldn't get out of bed. On the third day I went to the doctor and he referred me straight to the A and E, suspecting appendicitis. In hospital, they didn't do a scan and took me straight to theatre the next day to perform keyhole surgery and took out my appendix. I was kept in hospital for a week after the operation, and still couldn't walk when I went home. I wore T.E.D. stockings in hospital and they injected me with heparin to prevent blood clots forming.
THree weeks later I still couldn't walk and was kept awake at night with pain in my abdomen, and down my left leg. My doctor again referred me to A and E and I was kept in hospital again for a week. They told me that my appendix was perfectly fine when they took it out, so it wasn't appendicitis after all.
They did a scan and found a blood clot that went from my iliac vein to my femoral vein. My left leg was red and swollen and twice the size of my right one. They told me it was a DVT, and that I possibly had another blood clot, but that there was no point doing another scan yet as the blood thinners would dissolve them. They started me on heparin injections for a few days and I'll be on warfarin for min 6 months.
I am now out of hospital and have been referred to a warfarin clinic. I was on the contraceptive pill but have stopped taking it. As the doctors didn't do a scan when I came to hospital first they don't know if my initial problem was from a blood clot or if I developed it after surgery. I still can't walk as I can't put weight on my left leg, I'm using a walking frame to get around the house.
I'm just wondering if anyone can shed light on a few questions:
*Any idea on how long it will be before I'm walking again? or able to do exercise?
* Could raynauds phenomena have anything to do with developing blood clots?
* Any suggestions on taking warfarin as a vegetarian?
* Is it common to get abdominal pains with a blood clot in the groin?
I am trying to determine how I got the blood clot (if it was pre or post surgery) and to figure out what my original problem was, as I still have digestive/abdominal problems.
Sorry this is such a long post!! Thanks a lot :)
About 2 1/2 months after the clot developed, a vascular surgeon stented the veins. I'm almost three weeks out from that procedure, and I have had what seems to be complete relief from all my symptoms.
I'm still on warfarin and the surgeon said to use the hose for another 7 - 8 months.
Prior to the stent procedure, my calf was still almost 1" larger than the other and while I could be up on it for increasingly long periods, my leg still swelled and it felt "congested" when I'd been on it too long.
Happily, all those symptoms are now gone.
Blood thinners don't actually dissolve the clot - they just help keep it from growing while your body works on dissolving it. Some people's bodies manage to dissolve a good portion of the clot, but others don't dissolve much at all. Most people's bodies will develop alternative paths for the blood through smaller veins over time.
If they haven't recommended compression hose yet, take the research (which indicates that your risk of post-thrombotic symdrome is greatly reduced by earing compression hose for two years post-DVT) to your doctor and request them.
Once I started wearing mine, which are thigh-high, I was able to use my leg incredibly more than before I had them.
This group was a big help to me when I found it. Hang in there, do your homework, and be a pro-active partner in your treatment.
Short Answer - No
Long Answer -
Raynaud's by itself shouldn't cause clotting. If it is part of a broader autoimmune disorder or you go on to develop an autoimmune disorder, that might contribute to clotting. I have had raynaud's for years but didn't test positive for any autoimmune diseases. At the time of the clot in Nov., I tested positive for lupus anticoagulants also called antiphospholipid antibodies. Those will contribute to clotting. For me that may be transitory or part of an ongoing syndrome. I was also taking estrogen, have Factor V Leiden Mutation, was dehydrated and immobile for hours on a long trip.
So did raynaud's contribute to my clot? No. Did it indicate that I might have other autoimmune issues that might contribute to the clot? Maybe.
You were on birth control which is a known risk factor. That could have caused it by itself. You were sick and vomiting, so you were probably dehydrated. You were in bed for three days. Those could have been the triggering events. If the surgery was before the clot developed, it could have triggered it. It is hard to know for sure. Has your dr. had you tested for other things like lupus anticoagulant and genetic factors that could have caused the clot? The presence of those things will affect how long you have to stay on coumadin and how high you have to keep your INR.
It really depends. I've had two DVTs. The first was very bad, as I did not know what was going on and did not go to the doctor until I could barely walk and was in a lot of pain. That one took about two years to really recover from 100%.
My second DVT was four years after the first. My leg just felt "funny" in a way that reminded me of the first DVT. I went to the doctor within 24 hours and thankfully she believed me and sent me for a scan. That one, I felt completely normal after one week.
For you, recovery could be short or long. It will just depend on how your body handles it.
As for what caused the clot you had, I have to second what jan11965 said: the birth control could have done it by itself. (Both of my DVTs were BC related.) Beware the BC!
Get well soon!
Your story sounds somewhat familiar to me. I have had 3 acute abdominal attacks of severe pain waking me up in the night. The Dr.s in the er said I may have colitis or have eaten something bad, they just didn't know what caused the pains. The first 2 times they pretty much blew me off, but the 3rd time a CT was done and guess what they found. Two abdominal blood clots in the portal vein. I'm positive that the first 2 attacks were also caused from blood clots. Because the attacks happened over a period of 10 years they have not given me blood thinners. The Dr. said to wait and see if I get another attack. I know I will at some time, so here I am a sitting duck for another abdominal attack. Luckly for you your clot has been found and I hope you are getting good care.
I forgot to mention that I am wearing the compression stockings, my vascular doctor recommended that I wear the thigh-length ones (grade 2 compression) for 2 years. At the moment I only have the ones they gave me from the hospital, I still have to order the grade 2 ones, not sure what brand to go for...any ideas?
Up until now I haven't been able to put them on myself...they're really great for helping the swelling go down and I've heard that they're great for reducing the chances of developing another clot, etc, but they're not really user friendly!! :)
Also my doctor is testing for lupus anticoagulants and I'm not sure what else...I will check this out, thanks.
Thanks again for all the advice, its great to know that there's somewhere to turn for support with these things :)