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Posts : 1
Join date : 2010-06-02

PostSubject: New to forum - looking for advice   Thu Jun 03, 2010 12:00 pm

Greetings all-

I was diagnosed with a DVT in my left calf last Halloween. I had been in a walking boot for 8 weeks, trying to treat an achilles injury. I had a Platelet Rich Plasma treatment the week before my diagnosis, but before then I was suffering from pain in my calf. I thought it was just a cramp from being in the boot...even went so far as to get a massage on it!!

Anyway, the day after my diagnosis, I was a bit light-headed with a faint ringing in my ears. Sure enough - I had a PE. 2 days in the hospital to get my INR levels up and I was then sent home. Follow-up tests revealed that I have Factor V Leiden.

I am now 6 months post PE and my scans a few weeks ago reveal that I am clot-free, thankfully. My hematologist wants me on Coumadin for at least another 6 months, but is also indicating he wants me on it indefinitely. For me, that is a no-go. I am an active cyclist / bike racer. Clearly not a good activity for a guy on Coumadin. FYI, I take 2mg daily and keep my INR around 2.2.

The risk factor for me moving forward is the amount of travel I do, both domestically and internationally. However, I have been travelling internationally for 15 years and never had an issue. Even my DVT and PE were not the result of travel, but from the walking boot.

Does anyone have experience with using low-dose aspirin or other treatment methods to raise INR levels for travel, etc. It seems to me that if my travel was never an issue before, I could manage the risk by using aspirin and compression calf guards to lower my risk.

I really have no desire to be on Coumadin for the reaminder of my life. I am 44 and enjoy an active lifestyle. Any insight or advice is appreciated!!
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Posts : 3
Join date : 2010-03-28

PostSubject: Re: New to forum - looking for advice   Wed Jun 09, 2010 5:22 pm

Do you have any symptoms? I have seen studies on the internet which suggest wearing the compression socks for longer periods than 6 months lowers the incidence of long term problems, but that is a medical issue.

I'm 60 and am very active. I've had 3 big medical issues in the last 3 years-open heart surgery to replace a valve and fix an aneurism, a bad cycling accident that put me in a wheelchair for 8 weeks and then the dvt and PE from being in the wheelchair. I've been out of the wheelchair and on coumadin and compression socks for about 4 months. I'm riding again and managed 25 miles last Saturday. I don't have any issues with the dvt when I ride, but I have some issues from the accident/surgery that I hope will go away.

My prior experience with doctors and the heart issues leads me to believe you have to be your own advocate. If you had the one episode of dvt, if you don't have any of the genetic markers or whatever for it, and if your doctor concurs, I would find an alternative to coumadin. There are natural products that you can use. My personal, non-medical, opinion is that doctors want to give us drugs because if something goes wrong, they can't be criticized for taking the most conservative approach. The other thing you'll discover is that most doctors don't know how to treat people who are really active and fit. For instance, if you can quanitfy your risk for a future dvt and bad complications, you could weigh that against the risk of having a very bad outcome from a cycling crash while on coumadin. You might discover the coumadin risk is higher than the dvt risk, but you need to at least try to make that analysis.

Keep looking!

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Posts : 904
Join date : 2007-12-09
Age : 58
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: New to forum - looking for advice   Mon Jun 14, 2010 4:55 pm

Yes, I totally agree with John (67walkon), when I was diagnosed in 2007, since I was "idiopathic" at that time it was said that I was a lifer on anticoagulants, but then one year and a half later, a study came out stating that doctors were presently looking at "QUALITY OF LIFE" as oppose to arbitrarily keeping you as a LIFER on anticoags.
Mind you, when I clot AGAIN (I was told not IF but WHEN) I will be a lifer but not before. It has now been been almost three years since that first clot.
What I have been told to do when I fly is to get in touch with my hematologist and get Fragmin injection (Dalteparin Sodium injection) 12 hrs before the flight and one for the flight home. While on the plane, drink WATER, no coffee and no alcool (both dehydrate you) and wear your compression socks and get up and walk a lot if this is a flight longer then 6 hrs. Falling asleep is not a good idea, imobilisation is not a good idea. And drink plenty of water (I know I said that already, but that is the key, hydration promotes better blood circulation).

If we are not our own advocates, who else will. This is OUR health so WE have to be our own advocates.

Risk of injuries while on anticoags is what stopped me from ridding my mountain bike for two seasons. My Hematologist was happy to hear that...
Some do ride and some stop while on anticoags, it's a personal choice.
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