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.
Short(ish) history: I had a provoked illio-femoral clot in my left leg in Dec. 2014 (10 months ago as of this writing). I needed an Anjiojet treatment a week later because my body wasn't absorbing the clot and then compression bandaging because the swelling was still severe and not diminishing. I spent 3 weeks in hospital but still went home with limited mobility as I couldn't get my heel down to the floor when barefoot.
Sooo.....
As of today, I am off Warfarin. I am to be tested in 6 weeks for clotting factors but the doctor doesn't think there will be any.
In the meantimeand for the rest of my lifehow do I NOT freak out every time there's a sensation in my legs/arms/chest? The only symptom I really had initially was a feeling like my quads were tightVERY common after dancing or working out.
The doctor just said that the benefit of being on the Warfarin currently outweighed the risks and that if I did clot again, it would just be treated. But I don't think I would be able to walk againmuch less danceif the experience was similar to this clot: it took me 6 months (with physiotherapy) to get that heel down and another 2 to be able to go down stairs without cursing every step. I couldn't handle going through this again.
It didn't help any either when the doctor told me that there's a school of thought that "when you have clotted once, it is inevitable that it's going to happen again, if in one year or ten." :(
How do you all handle the anxiety of knowing that you could clot again at any moment? When do you seek medical attention and when do you not? Despite the dangers of Warfarin, I felt protected while on it and didn't worry about clotting again; now I do.
Sooo.....
As of today, I am off Warfarin. I am to be tested in 6 weeks for clotting factors but the doctor doesn't think there will be any.
In the meantimeand for the rest of my lifehow do I NOT freak out every time there's a sensation in my legs/arms/chest? The only symptom I really had initially was a feeling like my quads were tightVERY common after dancing or working out.
The doctor just said that the benefit of being on the Warfarin currently outweighed the risks and that if I did clot again, it would just be treated. But I don't think I would be able to walk againmuch less danceif the experience was similar to this clot: it took me 6 months (with physiotherapy) to get that heel down and another 2 to be able to go down stairs without cursing every step. I couldn't handle going through this again.
It didn't help any either when the doctor told me that there's a school of thought that "when you have clotted once, it is inevitable that it's going to happen again, if in one year or ten." :(
How do you all handle the anxiety of knowing that you could clot again at any moment? When do you seek medical attention and when do you not? Despite the dangers of Warfarin, I felt protected while on it and didn't worry about clotting again; now I do.
Clot #3 came less than three months ago. My leg was a bit swollen but I didn't think much of it because I hadn't been on a long car ride. I had lumps on the inside of my leg below the knee. Because we had been walking the dog in a field, I assumed they were mosquito bites. A week later I had a routine appointment with the doctor and she noticed my ankle. I told her that I thought they were mosquito bites. She told me to go to the ER just to make sure, given my history. Went to the ER and much to my surprise was told that I had another clot. That was devastating news because it was entirely unprovoked.
I will be on Warfarin for life. Wasn't happy about it but now I have no choice.
As far as freaking out goes, I most likely have an anxiety disorder anyway but now that I am on Warfarin for life, I don't worry as much about getting another clot even though it is possible.
I am grateful that except for one day, the ability to walk never left me. As soon as I could I got right back on my exercise bike. I'm doing all that I can to see my grandchildren grow up which is my goal!
This article addresses length of treatment etc. If your dvt was provoked it says the risk of another is low. I hope it helps put things in perspective.
http://patientblog.clotconnect.org/2011/03/30/dvt-and-pe-how-long-to-treat-with-blood-thinners/#more-715
http://patientblog.clotconnect.org/2011/03/30/dvt-and-pe-how-long-to-treat-with-%E2%80%9Cblood-thinners%E2%80%9D/#more-715
Evaluating whether a person with a previous DVT wil reclot or not in the future is more or less impossible. There are large number of factors that can be considered to evaluate the risk of reclotting, and I could list up large number of factors that can be considered based on the large number of scientific papers I have read about this.
In your case several things can be done to reduce the risk of reclotting.
1) You should now be much more aware of potential DVT symptoms, and if you reclot, you may be able to intervene with anticoagulant treatment much sooner. I would go to E&R at any slightest suspicion of DVT.
2) You may want to have regular D-dimer tests. This would mean that clotting would be detected before it would evolve into a DVT. This is quite controversial approach, but you could ask your doctor about this.
3) If you need to be immobile for a while (e.g. if in lower leg cast) demand heparin shots. If you are hospitalised, ask for heparin (i.e. if possible, you will not get these if you will undergo operation).
4) When travelling, or sitting a lot, try to keep mobile and avoid dehydration, or inject yourself with heparin to be super safe.
5) If you are now excercising (or will do that when you have fully recovered), any extremly streneous exercise should be avoided and also avoid dehydration. It seems that these may increase the risk of clotting.
6) Compression stocking may be useful to reduce symptoms.
I understand fully your anxiety associated to come off warfarin, this was the same for me. In the end of the day, no one will be able to tell you that you will never reclot again. However, a person with DVT with known risk factor, (e.g. immobility), like in your case, has less risk of reclotting than person where the DVT just came out of the blue. It is true that the risk of reclotting is greater for persons that have clotted previosuly, but this may not necessarily happen, and this depends on how vigilant you are about potential symptoms and avoiding situations that could led to clot formation. Also, being the whole life on warfarin has risks, so this is about weighing the risk of reclotting (while on anticoagulation) while having bleeding incident (while on anticoagulation) . Good luck and I wished I could provide better answers. As you are mobile person and in good physical shape, that is important and can reduce the risk of reclotting.
What you could also do is to take baby aspirin. Dose of 75mg (or similar) every other day, or 30-40 mg a day is enough. These appear to reduce the risk of clotting, but are only around 20-30% as effective as conventional anticoagulants. However, at such low doses,there are hardly any side effects at all, and the risk of bleeding is very small. Larger doses are not effective at all. Some studies have suggested that you can ingest baby aspirin at such low doses the whole life without any side effects. It is mainly suggested to people with heart diseases as it has been shown to reduce the risk of heart attack.
There are now a trial of an anticoagulant that has much less bleeding risk than the current ones on the market. I cannot remember the name of it now, but I wrote some time a message about it on this forum. If this anticoagulant would have so much lower bleeding risk, it could be ideal in the long-term prevention of DVT/PE. However, there will be many years until this medicine will be fully tested and FDA approved (i.e. if approved..).
So far as when to seek medical attention, I err on the side of caution. If you have a good doctor, they'll do their part when you come with concerns. I know it's not helpful right now, but as you continue recovering, you'll know what are normal twinges and aches for you vs what's a symptom. When I clotted the second time, I knew what was up. Best wishes to you!
You do have much more awareness now than most people so you can try to avoid situations that are most dangerous. Stay hydrated when working out, walk around when you're flying, stop during long car trips. For most cases, you absolutely can protect yourself.
I mean, I'm a lifer on warfarin and that's not really a good thing. None of us who are lifers WANT to be on warfarin long term. It's a dangerous drug and it tends to cause more issues the longer you're on it. There are obvious risks coming off warfarin--but there are also risks to staying on. Neither one should be done without thought and consideration.
Really, this is a GOOD thing. You're healing and you're moving past this whole scenario. You're on the road back to normal ... and you will be able to move past this eventually.