my decade long story...

Hi everyone,

I wish I had found this group sooner! I’m on a mission to learn more about my condition and this forum seems like a great place to start! I am a 25 year old doctoral student, currently living in Montreal, originally from Ontario. English is not my first language, so please bear with me My story is a little long, since I’ve been on some sort of anticoagulant therapy for about 10 years now.

My story is similar to other girls diagnosed with DVT at a young age. At 15, my first DVT (thigh-groin area of leg) was caused by the use of the contraceptive pill, which I only took for about three weeks. After hospitalization and testing, we actually found out I had the Factor V Leiden mutation. Though the contraceptive pill did, in some way, speed things along, I would have eventually suffered a DVT since we had no previous knowledge of the Factor V variant in our family. As a precaution, my entire family got tested that year. We found out that it was in fact my Dad who was the carrier. Although he has no history of DVT or clotting, he was told by his doctor to take ASA as a preventive measure.

Since I was 15 when I got sick I don’t remember much (though this might be because of all the very strong pain killers they put me on). I only remember being in a lot of pain! I supposedly almost died, twice. I don’t remember much about diagnostics and treatment. If anything, my mom was the one keeping track of things. I was in the hospital on and off for about three weeks and it took about two and a half months for me to get better (to the point where I was able to walk around normally, go back to work, etc). I was really sick for a long time. During those months, we had difficulty finding the right combination of medication to get the INR right. We finished with some sort of pattern of warfarin and ASA. I also started to wear the circulation stockings (the heavy duty kind!). Obviously, I never touched another contraceptive pill again.

During the following year, I went to see many different blood specialists. Basically, none of them had the same opinion about my case. I’ve been told it is quite rare for 15 year olds to have DVTs, so normaly many doctors are not sure what are the best treatment options. One doctor even told me it was impossible for me to have another dvt since it was brought on by the contraceptive pill and I had stopped taking it. (He was wrong!)

My family doctor, who was the one monitoring me closely, agreed it would be fine to stop the warfarin after 10 months of therapy. The scans and ultrasounds showed that the DVT had cleared up. Even though there was some scar tissue, new veins had formed and circulation was fine. So I stopped… and six months later I was back at the hospital. This time the blockage was on a lower part of the leg (same one) and three veins were completely blocked off. So we started the same process of medication and doctors. I was told that I would be on warfarin forever and that was that. Thinking back, I don’t think the doctors even tried to find out what (if anything in particular) caused the second DVT. They simply attributed it to the Factor V variant. In fact, the first doctor I went to see sent me back home, thinking it was not probable it was a clot.

Since being back on the medication, I have never had another clot. I’ve never had any serious problems with the medication either. My INR is sometimes out of range, but I’ve learned to control it myself. Of course I bruise more easily then others, my gums sometimes bleed, and my periods are heavyset: it’s always very annoying, but controllable. At 18, my doctor and I decided it would be best for me to stop wearing the stockings. They were unbearable for me to wear and my legs always felt so tired when I wore them all day. I even tried different types of compression and nothing work. Now, I only wear them when I go on very long trips, especially on airplanes. I have some swelling on and off (less than more), it always seems to vary with the activities that I do. Of course, being a grad student means alot of time sitting down!

During the last 10 years, I’ve broken two toes and fracture my ankle twice, but there were no complications from the anticoagulants during those incidents. In fact, I’ve never had any major bleeding episodes except once when I got my wisdom teeth pulled out (they put me to sleep). My mouth bleed for almost a week afterwards, but I am convinced it is because the proper procedure wasn’t followed before and after the operation. All in all, I think my life has been pretty normal despite being on the medication. Of course I can’t do any extreme sports, but I’ve still done a lot of other stuff. I’ve travelled a lot for example. I’ve managed to take some very long overseas trips. This meant radical changes in diet, routine, and above all, reduced INR monitoring. No problems so far.

But now that it’s been 10 years I’m ready to learn more about living with DVT. I am starting to worry about the long-term effects of talking theses medications (warfarin and ASA). I don't want to take the medications forever if it's not necessary. I also want to know what I should expect in the future, with pregnancies, hormonal changes, etc. I’ve started to see some new specialists, but I have yet to find one who could really answer any of my questions. So now, I am trying to do as much research as I can by myself. I feel that because I got sick at such a young age that I was never involved in the decision making process. I don’t even remember any doctors telling me anything about my condition other then I needed to take medication for it. In fact, I have always had a hard time explaining to people exactly what my condition is. I feel as if I don’t have the scientific background to really understand it profoundly.

So I’m happy to have found this online community and I am very excited to learn from everybody !

Salut et BIENVENUE sur LADVT, pas la meilleur manière de faire conaissance mais...
Et oui, un autre Franco-Ontarien...
Not to worry, your english is probably better then you think, I would say that it is very good!!!!
To explain to you that doctors do not like to explain what they are doing because most of the time they are just guessing and MAY hit on something, sometime. That said, I have to admit that I found a bunch of excellent doctors in the field of Thrombosis at the "Civic Hospital" in Ottawa at the Thrombosis Assessment, Threatment, Centre (TAT Centre) Guess I lucked out.
In Montréal, there is a Dr. that has done a lot of research and if I remember correctly she is at the Montreal Jewish Hospital. I will look for her name and coordinates...

Again, BIENVENUE sur LADVT.

Salut et merci pour l'accueil sur le site !

I'm looking forward to exploring the forum a little more.

hi!
sounds like we have been through almost the exact same thing in our teens. - never thought id read a story that sounds so familiar!

i was interested to see that you have traveled overseas, i would love to one day also, but at the same time- the thought of long flights and not knowing whats going on in my leg - terrifies me! docs have said it is definatley possible, i see you had to change your diet and doses etc, did you have to find places overseas to have your blood tests? and what was the longest flight you went on?

argh! and thanks for the warning about the wisdom teeth - mine havent even appeared yet, and i hope it stays that way! it would have been awful to have it bleed for that long. also, you mentioned monthly's being heavyset - mine were ridiculous also, so the doctors recommended i have marina IUD - i did, and its been absolutely fantastic. lasts 5 years, reduces monthly's to literally nothing, and is one of the best forms of contraceptive out there.

i also have a difficult time telling people my condition- complicated! as soon as they spot the stocking they want to know! anyway thanks to this groovy website link, Dero posted, www.rejuvahealth.com, my stockings can actually look chic!

have a great day

this one might actually open! - http://www.rejuvahealth.com/

Hi Codylee!

Sorry for the slow response. Glad to share my story - and very happy to find out someone has gone threw the same thing(s)! Thanks for the info on the contraceptives; I will definitely check it out!

Don't be afraid to travel! You can go anywhere as long as you take a few precautions... I'm always on the go! The longest flight I have been on was a 10-11 hour one. I can't remember any noticeable side effects (no swelling or pain, no tired legs). The important thing to remember is to walk around as much as you can during the flight. And of course, wear your stockings and adjust them as needed (this has always been a problem for me as they never stay in place).

I have also travelled intensively by car, bus and train. Trains, as you might already know, are great for moving around, but buses can definitely be a little trickier since they are usually so cramped. I have been on 24 hour-long bus rides and I can sometimes really feel the pain/stiffness afterwards. I just remember to walk around and do some exercise in the following days... Breaks between traveling days also help.

Driving can also be a tricky one if you are the one doing all/most of the driving since I find legs can become stiff easily. My trick is to stop every two hours or so to walk around (it's good for everybody, even people without a DVT history). I also try to book a few extra days in between locations if I am driving more then 12-15 hours a day. Of course, I do understand that not everyone has as such great distances to cover in one day (Canada is huge!).


As for testing while traveling, I now carry around a monitor. The downside is that they are very expensive to use and few insurance will cover them! Not counting the cost of the device itself, it will cost between 10-15$ per test. I would only recommend it to people who need their blood checked every 3 to 6 weeks or so.

That being said, my first europeen trip was 90 days and I didn't get any testing done for the whole duration. I had asked my doctor and he saw no problems with it as long as I kept track of my medication. I adjusted my diet too by learning which foods contain a lot of vitamin K and vice-versa, could be blood-thinning. Nothing really complicated, I just made sure not to eat the same things everyday and to vary my diet. I also paid close attention to any signs of increased bleeding.... And, it's always a good idea to have a medical id bracelet on you and/or a note from the doctor explaining why you carry blood thinners. (This can also help you at border crossings!).

In fact, the only thing I sometimes find difficult to manage during traveling is alcohol. I know some doctors entirely forbid alcohol to their DVT patients, but mine has always understood that, as a young adult, I would often be in social situations with alcohol. The key is to know the early signs of intoxication as it usually takes (a lot) less for people on bloodthinners. Taking extra precaution not to get hurt while driking is a must... but you probably already know all of this!

Looking forward to hearing more of your story

I too am grateful to have found this site. Here is my story of "how I found out I had a DVT." I fell from a cottage deck, and badly sprained my left ankle and tore three ligaments. It wasn't until three weeks later that I found out I had a DVT. Here is how this was handled: a) was immediately put on Warfarin, then b) told to get off oral contraceptives, after 20 years of use, I am just turning 40 next week; then c) given an air cast for my ankle which cut off circulation so I rarely wore it for first few weeks and told by the ortho surgeon " well I could give you physio but no one will touch you cause you have a blood clot". I was then given a battery of tests to see "why" else this may have happend; came up positive for Lupus anticoagulant and low protein C and S levels; but that was promptly dismissed by the hematologist who just looked through me and said "keep taking thinners". So, given all of this....the pain is still awful and I am into month four with my DVT, I have been off work for two months, I am a teacher a desperate to get back to work...but the pain is unbearable. I have sought so many answers from different healthcare professionals...and being told very little, harkens back to "sorry here are your socks" ; finally got socks but my GP has said; "don't wear it with your painful clot". So I am incredibly frustrated!!!! not sure WHAT to do in terms of getting better, find it tough to work out at all..let alone walk.

I haven't been referred to a vascular surgeon, I see another hemotologist in November cause the first one just said "this should all disappear in a few weeks...it is a small DVT";' GAWD it does NOT feel SMALL!!!

So here I sit, in my time off, with WAY too much time on my hands, doing what research I can find....and the only consistencies I see, are that doctors seemingly have NO consistent method for treating DVTs!

Not sure how to get into the "groove" so that I feel capable of going back to work....there are so many conflicting messages about the duration of how long a clot takes to dissolve...and what if..it doesn't...what then? can I return to work and be the same? unlikely? How do I even work out when I can barely walk??

Any thoughts? help??? so glad this forum exists. I know I echo many of the same sentiments that others do.....

thanks