Life long blood thinning therapy

Lifer here.  I took the first 6 months off and just rode the trainer.  After I became a 2 time loser and lifer, and after much discussion with my wife and evaluating the risks, I now ride, race, ocean swim, trail run (as well as scuba dive, and meant to go back to snowboarding last winter but just never got around to it).  Like you, lots of tests, no cause found.

I do some things differently.  Ride the trainer if it's raining or during the week.  Ride outside on weekends and days off, but don't ride certain routes, or in large groups.  I don't bomb down hills, or run reds, etc.  I always let my wife know when I am off the bike.  I wear med alert tags, and my riding friends know I am on thinners (two of whom are also on thinners). 

I also test at home, and keep my range in the lower end.  If I go above 2.3 or so, I adjust the meds slightly to bring it back down.  I am very happy at 1.9-2.1.

Yes, I know all about the risks of internal bleeds and head injuries, and have weighed them.  There is always a risk when you get on a bike.  It's just elevated a bit with us.

My original hematologist said "go live your life, wear a helmet when you ski or ride, and don't be stupid."  My current pulmonologist said he understood, all he could do was warn me of the risks and the decision was mine.  I was not willing to give up the things that made me happy on an outside risk that someday, something bad might happen.  it might happen slipping in the shower, or someone could rear end you.  I refuse to live in a bubble.  All we can do is accept and, to the extent we can, control the risks.  I can say I might feel differently if I had children, but I don't

There is not a whole lot in my life that is different than before, other than a nightly pill and a test now and then (try to do weekely, but at least every other week).  About the only thing I won't do is go on very isolated live aboard dive trips that are 24+ hours from land, which I've done a few of.  I am thinking about going to Indonesia to dive next year at an isolated land based resort.  I had thought all of these destinations were beyond my reach, but my universe keeps expanding. 

That's just my .02.  As you say, it's a personal decision people have to make for themselves.  I know there is at least one other lifer here that races. and a few on ST as well.

Good luck with whatever you choose.

Tough Decision.  The risk of head injury is the prevailing risk, base your decision on that, but know that hitting your head only increases the risk, many elderly on coumadin fall and hit their heads without serious consequenses.  As far as your coumadin levels being stable only during the 'off' season, how were your levels the first time you were on coumadin? A little, or even a lot of exercise can all be managed with proper monitoring, especially if your training regimen is rather consistant.  And if it really becomes a bear to keep your levels in range, there are other options now for treatment that don't require monitoring/adjustment that were not around a few years ago.

-Mike, CACP (Certified Anticoagulation Care Provider)

Interesting, did not know there was such a thing (my clinic folks are probably that...). 

As to the last sentence, I am aware of these for a fib patients etc (rivoroxaban - sp?) but a little concerned that there is no way to reverse the thinning effects i.e. with a high does Vit K injection in the event of a trauma.

My levels the first time always hung around 2.7 or 2.8. Back then (2004) I was fresh out of the military with a destroyed knee and 6-8 months of rehab in front of me. I wasn't very active during the treatment so maintaining those levels was easy. By the time rehab was over the Dr's considered the clot resolved and I stopped taking thinners.

Your reply brings up a few questions about maintaining levels. Currently I pretty much eat anything that isn't nailed down. I also stay away from things that will mess with my levels like leafy greens etc. When I train I live on leafy greens and well just about anything else that would mess with my levels. Next is hydration and that consideration. Right now I stay hydrated with respect to my activity level. When I train I am probably close to over hydrated. How are these two issues managed? What does a tri diet look like when on thinners?

I have asked the Dr to prescribe an INR machine for home use for now. Beyond that I had considered Pradaxa (SP) but it is having some issues and like Chris mentioned you cant counter it with Vit K.

I am a believer in dosing to the diet, not dieting to the dose. I probably have a salad every day, often times with spinach in it. Honestly (and unfortunately) I basically eat whatever I want, but try to be consistent with it. Consistency is the key, rather than barring any food outright.  But I've been on the meds going on 2+ years now, and I am pretty stable at a single dose.  The only thing that really whacks me out is antibiotics

I found that man health professionals don't really know their way around this topic very well, as I was initially told NO leafy greens at all, which is utterly wrong.

Dehydration for me is an issue, as I had borderline HBP when diagnosed so had to go on BP meds. If I ge too dehydrated I start getting a bit dizzy as the BP drops, so I need to watch that.

I've been on Coumadin/Warfarin for twelve years after getting a mechanical aortic valve.

My INR theraputic range is 2.5 - 3.5.  Fortunately my INR has been remarkably stable over the years.  The biggest issue I've had has been been when I've had to discontinue my Coumadin to have colonoscopies and had to do a Lovenox bridge.

The best advice I can offer is to educate yourself to be an informed consumer.  Unfortunately there is a lot of misinformation and myths out there regarding anti-coagulation therapy, even within the medical community.

I'm aware that there are some increased risks from continued participation in triathlon and other so-called  "risky" activities, but they are risks that I understand and am personally willing to accept. 

Good luck to you.

Mark   

Very good advice ChrisM.  Consistancy is the key with diet and to an extent exercise or activity level.  Some older not well informed medical and lay people will still say to avoid Vit K foods, it's poor advice.  Eat what you like, keep it consistant, and adjust the med accordingly. 

OP, if you were stable before, there's high liklihood you will be stable again.

Rivaroxaban (Xarelto) and Pradaxa (Dabigatran) are both FDA approved for Afib, Rivar has also been approved for DVT prevention for ortho surgeries.  However both have been well studied for post DVT treatment and are a reasonable option.  You are right though about reversibility.  We can fairly easily reverse warfarin in case of life-threatening bleeds, the new agents, not so much.  There are very small studies to suggest we can, more so with Riv, but only animal models and lab studies so far, no real "human experience" to bank on which is why in riskier patients, warfarin is still the treatment of choice.

-Mike 

Sorry to hear about your struggles.  I'm sure it's frustrating for you, but it sounds like you've got your priorities straight. 

I was in congestive heart failure for a couple of years prior to my surgery and it was no fun. 

I hope that your health improves and you are able to increase your activity level over time.

Good luck,

Mark