Monday, July 26, 2010

Looking for Help in the 21st Century

As I said in my last post, I'm headed to Boston for further analysis. The docs in Maine, while solid, just don't specialize enough. In Boston, I might end up with an academic-based doctor who can spend the time figuring me out. At this point, however, I don't know who I'm going to see. I have one recommendation from my hematologist, but I want to make sure we get this step right. As a result, I'm trying to leverage the internet. I'm calling on all readers and friends who know someone- or know someone who knows someone- to pass this along.

Specifically, I'm looking for a doctor who specializes in blood clotting disorders in otherwise healthy subjects- even better, someone who includes strong endurance athletes in their work- especially those who have no other freakin' symptoms.

Here's a rundown of what we know:

First, the short story. No other symptoms or risk factors- other than the clotting itself. In other words, a total mystery.

Now the long story. I'm a successful endurance athlete (triathlons), training 10-11 hours per week. Before the ER, had chest pain and felt like I was training at altitude. I occasionally spit up a small amount of bright red blood, generally after exercise. No family history or other typical risk factors (flights, dehydration, etc.). No DVTs. Lower right lung adalectisis. Both pulmonary arteries about 90% blocked, additional clotting, especially on the right side. Cardiac echos were fine. Mildly prominent prostate. Otherwise clear abdominal contrast CT scan. Pleural-based opacities within lower lobes. Upon arrival to the ER, thrombotic risk profile all within normal, including Factor 5 Leiden. Tested for PNH and to determine PSA, waiting for results, very doubtful. Currently on 12.5 mg. warfarin with an INR of 3.1. I'm happy to provide more details or doctors' files.

So for those reading this post who know a doctor who might have a suggestions, please pass this along. My future athletics may rely on finding the right person.

There's also a bigger picture here. First, if I have a genetic disorder, a day will come when my kids should know about it. Second, if this is a result of some sort of confluence of events or factors, there's a good chance other endurance athletes should know about it. Their lives may depend upon it.

Thank you in advance for your help.


  1. I will think about who I might know that could help..networking is great. Such a mystery..can't wait for you to find answers!

  2. I hope you find the answers soon - heading to Boston seems like a good move - more specialists there. Wish I had more suggestions but all I can offer is well wishes.

  3. Did you ever find the help you were looking for? I've been training for my second marathon with my sights set on a full IM and Climbing Everest... which leads me to this: I'm Factor-5 Leiden deficient, 29 yrs old, 3 back surgeries and never had a problem with clots (was tested after my less active sister 10 yrs my senior had an issue).

    Who did you end up talking with about the issues you encountered? I'm doing as much research as I can upfront to determine what I can do to prevent problems and if it's suicidal to embark on anything high-altitude. Any help is appreciated!!