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.

Christmas Eve In July

I think it's about time for some good news- which started coming in about the time I wrote my last post, and hasn't let up since then.

I'll start with the medical stuff. First, the abdominal CT scan, looking for tumors, came back negative. That was a major relief. Even though two doctors told me they seriously doubted I'd be positive, it was still nerve-wracking. Next came the latest INR reading, which was a robust 3.1. To put this in perspective, 3.5 is about as extreme as they go, which is for those who have mechanical heart valves. Now I get to have two weeks between blood tests instead of one.

The downside to all of this is that we still don't know what caused the clots. That's important because it can determine how long I'm on Coumadin. I know it will be at least six months. But if we don't find a cause, it could be a lifetime. That means no more bike riding on the road, which means no triathlons, and other activities could be eliminated such as skiing, ocean sailing and trail running. Needless to say, we still want to find the cause. As a result, I'll go to Boston for some far more advanced analysis. The search for the most appropriate doctor will be the subject of my next post.

When I saw the pulmonologist last week, I asked again about activity limitations. He said I could start back on the path to recovery, keeping my heartrate to no more than 60-80% of max. Excitement building. So I can go for a run? Yes. Great! "But I wouldn't do a road race until you've been on Coumadin for 3 months." Wahoo!!! I burst out laughing. Are you joking? The suggestion that I could do a road race two months from now gave me a huge lift. Not that I have anything planned, or will even feel ready for one by that point, but just having the prospect of being able to handle that kind of activity was a great moment. I decided then and there I'd go for a run on Thursday morning.

On Monday, I returned to the pool for the first time. It was great to see everyone, even though I received a few worried glances- Are you sure you can do this? Are you going to start bleeding all over the place? During the summer, we swim at an outdoor 25m pool in Portland. The water is crisp, clear and clean. I hopped in, swam down to the other end, turned, and pushed off. The feeling of streamlining off the wall was great. I only went 600m, but it felt incredible to be back in the pool. On Tuesday, I did a light spin on the bike, and on Wednesday returned to the pool for 1400m. The increase was after the doc said I could safely pick things up.

That night, we were hit by a series of huge thunderstorms. Leah freaked out, so she took my place in bed and I ended upstairs in the guestroom. Between the storm, stuffy air, allowing the dog to take shelter in the room, and sleeping in a twin bed (not great for someone who is 6' 2"), I didn't sleep very well. But the real reason for the lack of sleep was the anticipation for the run. It was like Christmas Eve as a kid. I finally got up around 4 and watched a bit of a movie. Then at 5, I headed out. I decided to alternate half miles walk/run, times three. It's a flat out-and-back, and I know the mileage markers. Those first running strides made my day. Sure, the legs felt heavy, slow and unstable. But I was running. I didn't care about the speed, and in fact kept it slow to keep my heartrate down. I had an ear-to-ear grin the entire way. The sun came up through the morning mist. The temperature was a perfect 70 degrees. U2's It's a Beautiful Day played. And I was running down the road. It's hard to accurately describe the feeling. I was on top of the world. It was the best Christmas in July.

Since then, I've had a few more runs and swims. It still feels great.


“You remember the rules. Keep yourself safe. Put a little joy into your life and those around you who you think may merit it. And never ever- that’s never ever- pass up an opportunity to kiss someone you love.”

Sunday, July 18, 2010

"You Were Very, Very Fortunate"

On July 4, 1939, at Yankee Stadium, Lou Gherig’s stepped to the microphone. Disabled by ALS, a disease that would claim his life two years later, he proclaimed, “Today, I consider myself the luckiest man on the face of the earth. That I might have been given a bad break, but I’ve got an awful lot to live for.” Here’s a baseball and sports icon, thinking he’s lucky. He was giving up the game he loved, and knew his days were numbered. I’m beginning to understand.

Now don’t jump to any conclusions. At this point in time, I expect to be healthy and competing again. I don’t believe my life is in danger. However I’m beginning to understand just how close I did come to death. (It’s hard to write that word.) And this is helping me to look at my life in a different light, to appreciate and treasure and value that which is really most important.

Over the last two weeks, I’ve been busy with medical appointments and plenty of blood draws. The major task has been to get my INR up to an acceptable level. The International Normalization Ratio shows how easily your blood clots. Most people are under 1. By taking Coumadin, my target is somewhere around 2.5, which should prevent further clotting. Given the extensive clotting and blockages, in particular in both pulmonary arteries, a further clot on top of what I already have could easily be fatal. The pulmonary artery takes blood from the heart to the lungs, splitting in two, one for each lung. Then the blood vessels keep splitting and branching out until they are tiny capillaries, at which point the blood absorbs oxygen, goes back to the heart, then out to the entire body. If blood can’t get through the lungs, no oxygen gets to the body and all of the organs- including the brain and heart. That isn’t good. My INR was taking its sweet time getting up to an acceptable level. It was only 1.2 when I got out of the hospital, then 1.6 around July 4th, 1.7, then it actually dropped to 1.6. Throughout, we kept increasing the Coumadin dosage. The dosing is taken very seriously- the drug is also used as rat poison. Take too much, and you bleed out.

All of the testing for genetic blood clotting disorders came back negative. That’s good, however the cause remains a mystery. As a result, my doctor referred me to a hematologist. In doing so, he warned me that outside of major metro areas that allow for medical specialization, hematologists are also oncologists, and the office I would be visiting was at the Maine Center for Cancer Medicine. He doesn’t think I have cancer, and didn’t want me to panic when I saw where I was going. I thanked him- without fully appreciating his warning.

When we returned from a weekend in Castine, I had mail waiting for me. It was a welcome package and forms to fill in before my appointment. I sat down. Wow. I’m filling in forms for a visit to a cancer office. Cancer. Cancer. What am I getting into? To make matters worse, I started Googling “cancer and blood clots.” I went from bad to worse. Then Christine started doing the same. Now two of us were in a tailspin. Then Nick walked in the room and saw the brochure from the Cancer Center. He paused, looked up and essentially asked if I had cancer. We explained that that’s just where the office was, and we’re just checking anyway. I’m not sure how affected he was- as a typical 14 year old, he doesn’t show excessive emotion.

So on Wednesday, I went to the hematologist. Walking in was tough. Here’s the sign that greeted me:

Checking in and going through the normal procedures was depressing. I prayed that I wasn’t going to become a long-term visitor of this office. They even took a picture of me for the computer file. I asked why, and she said, “we have a lot of people with the same name, so this helps.” Now that I think about it, I don’t buy it. That’s what birthdates, addresses and social security numbers are for. I wonder if it’s so they can see how patients’ appearances change over time- while they’re going through treatment. Not exactly a comforting thought.

To make a long story short, I’m going for another CT scan this week, this time for my lower abdomen- to look for tumors. As the doc in the hospital said, clots come from the legs and malignancies. I don’t have anything in my legs, so….. The hematologist really doesn’t think we’re going to find anything. At that point, we will probably do much more specific genetic blood work. My primary care doc completely agrees. Neither covers things up, so I trust their opinions. If I had a type of blood cancer, some of the earlier blood tests would have raised a red flag. And I still have zero additional symptoms. We just have to look for cancer so we can eliminate it as a possibility.

As we reviewed my CT scan from three weeks ago that showed the clots, the hematologist said to me, “you were very, very fortunate,” and explained that it’s very easy to die from what I had. That comment stuck with me. First, I began to realize how close I really came- something like 1.5 millimeters. That isn’t much. Second, and most importantly, I’ve turned around what he said. Instead of “were,” I say “are.” Or in the first person, “I am very, very fortunate.”

Being hit with significant bilateral pulmonary embolisms could prove to be one of the most influential experiences of my life. It has caused me to refocus back on my core values- my family, my health, and my work. In Christine, I have the best and most loving wife in the world. I have two great kids who are healthy. As a family, we are fortunate to live where we do and do the things we do. Nick and Leah will grow up and be great contributors to this world in some still to be determined way. By “great,” I don’t mean famous or monumental. I mean they will be positive contributors, even if it’s in a very localized way. And after all, isn’t that the most important thing we can leave behind?

I am incredibly fortunate to have done the physical things I have done. I love sports and competitions. Some of my clearest positive memories come from high school and college swimming. I don’t remember many times, but I do remember those moments- the great personal breakthrough races where I helped my team. As for triathlon, how many people even get to participate, much less achieve what I’ve done? Two Ironmans, tons of shorter races, all resulting in a spot earned on Team USA. I am incredibly fortunate to have progressed without injury. But honestly, if I had to choose between those accomplishments and all of the people I’ve met through the sport, there’s no doubt I’d take the latter. This is a group that wants to go faster than the next guy given every opportunity in the water or on the road- but when it’s over, helps each other out in any and every way possible. It’s a striking dichotomy and a great tribute to the sport. Triathlon can be a very lonely sport, and one that tests each individual almost daily during solo training sessions. It’s the unending support and camaraderie that gets us through to the next workout and race.

Again, don’t get me wrong- I have every intention of working hard and being competitive again. It will be done in a new light and in a new context, however. Greetings and conversations will be a bit longer and more sincere. There will be better balance in my life. I will look across the lake and view the road ahead with greater appreciation for how fortunate I am to be able to swim, bike and run at that moment and in that location.

And for my family, hugs last a little longer. I’m a better listener, especially for the meaning behind the words. And my life balance is better. I am incredibly fortunate to have had this scare, to have survived, and to have learned from it.

“You remember the rules. Keep yourself safe. Put a little joy into your life and those around you who you think may merit it. And never ever- that’s never ever- pass up an opportunity to kiss someone you love.”

Thursday, July 1, 2010

Head Games

First things first. In general, I feel better. I've been on blood thinners for almost a week now, and am told the risk of a further clot forming is extremely low.

That space between my ears, however, is messed up. I know it's normal, but that doesn't make it easier. I've become a hypochondriac, sensing every little sensation, wondering if something is going to go wrong. When I walked out of the hospital on Sunday, I felt like a ticking time bomb. Since then, I've begun to educate myself on what happened. Most clots come from the legs, and can first present themselves as tight or swollen calf muscles. What's that twinge in my calf? Is a clot about to dislodge, travel to my lungs and plant itself on top of my 85% blocked artery and kill me? I've learned that getting a massage, a perfectly normal solution, can help release them. Why is my chest tight? Airplane rides right after a race can also increase the chances of a problem. Why do my ribs hurt? I feel fine, I'd love to go for a run. I hope I don't drop dead. I can't wait to get back in the pool. I'm told this is much like post-traumatic stress disorder and is normal. Which in a strange way, is comforting.

I'm discovering that there are enough endurance athletes out there that have clotting issues and PEs that some work is being done on the topic. It's incredible how with several "life challenges/tragedies" we find they are more common than we ever imagined. I've made contact with two other triathletes- a 59 yr old male in VT who is still on coumadin but is back competing, and a 29 year old woman in CA who is currently in the hospital. Marit just had a few great workouts, went to the doctor, and landed in the ER with PEs and DVTs (deep venous thrombosis, or clots in the legs). Misery loves company. And given the lack of knowledge among many doctors, more awareness of the issues is a good thing.

A few seemingly small lifestyle changes serve as reminders of what happened and how things will be different. Two days ago I ordered medical alert bracelets. If I'm in some sort of accident, medics need to know I'm on coumadin. I'm not who I (thought I) was. Yesterday I walked to CVS to buy an electric razor. While a small cut won't be life treatening, it likely won't stop easily. I'm not who I (thought I) was. I can't ride a bike on the road as long as I'm on coumadin. A fall could either be life threatening (head) or a major problem (an other internal bruising or bleeding). I'm not who I (thought I) was. I need to really think twice before I go sailing, and certainly racing. Cuts and bruises can certainly occur, and it might not be easy to get to shore. I'm not who I (thought I) was.

Without a doubt, all of this has certainly helped put things in perspective. Family is number one. At the height of the crisis, I thought I might never be with Christine again or that I would see my kids again. Those are terrifying thoughts. Last night I acted, in a small way, on this new perspective. We went to a Winterkids fundraiser that had a silent auction and one item in the live auction- two hours of snowboarding with 2-time gold medalist Seth Wescott at Sugarloaf, followed by diner at his restaurant. It made zero economic sense, but I bought/won it with friends. Telling Nick he was going to ride with Seth and seeing his expression was worth every nickle. This will be an experience he will never forget.

As for workouts, I've walked about 2 miles every day. I can't go harder because my lungs can't absorb oxygen, and therefore my organs can't get the oxygen they need. As the clots start to dissolve, I'll be able to do more. I don't know how long it will take, but it will get better.

As for Budapest, the race is off. In fact, as I said, I can't take my bike out on the road for a while- at least until I get off of the coumadin. While crashes are very rare, they do happen. We've all seen them or been part of one. It became a very easy decision to make when I understood the risks. I don't have to like it, but it was easy. I worked damn hard to make the team, and badly wanted to wear the uniform and compete at that level. But living is more important.

Finally, I'd like to share with you something that I hear at 4:00 most days. I never get tired of it. Our head of operations on the floor of the NYSE, who talks to us every two hours (if we listen in), is a great man. He has had several family tragedies in his life, losing his wife and daughter. 9/11 also hit him very hard. Since then, he closes each day with the following. I suggest you take his suggestion:

"And you know the rules- keep yourslf safe, put a little joy into your life and those around you who you think may merit it, and never ever- that's never ever- pass up an opportunity to kiss someone you love."