fett on 20/5/2010 at 23:26

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So remember that trip to Boston I was taking in May to find out why I feel like crap all the time lately? It sucked.

I spent two mornings undergoing a variety of heart tests including a heart MRI, and stress echo at the HCM clinic at Tufts New England Medical Center. I visited Tufts in 2003 to great benefit, as they knew WAY more about the condition than the local docs. There are only 3 HCM clinics in the country and it's imperative for HCM patients to be evaluated at these clinics since most general cardiologists have little experience in treating the disease. These tests gave the HCM specialist (Dr. Maran) a very clear view of my heart condition. He was able to show us video of the MRI and explained that my symptoms have increased dramatically in the last year because the disease has progressed rapidly. I'll try not to bore with technical details, but essentially, the thickening and scarring of my heart muscle has been confined to the left ventricle since I was diagnosed in 1998. In the last year, that stiffening and scarring has increased significantly in the left side, and has now spread to the right side. Dr. Maran tells us that I have entered into “diastolic heart failure.” Unfortunately this cannot be treated with medications or myectomy surgery. He strongly believes I need to begin the candidacy process for heart transplantation. This comes as a bit of a shock to us, but also to Dr. Maran, as only 5% of HCM patients require a transplant. We're still trying to absorb this news and there are many more questions we need to ask. Dr. Maran also stressed that I need to start this process as soon as possible in the event that the heart failure continues to progress as rapidly as it has done in recent months.

Which brings us to the next issue: moving. Obviously, heart transplants are done with great success all over the country. The larger issue for us is the fact that I will still be living with very advanced HCM until the transplant (which could be almost 2 years away). We are told to expect frequent trips to the ER, hospitalizations, oxygen pumps, etc. if the disease continues to progress. There is a considerable danger for an HCM patient in these situations because most cardiologists, and especially ER doctors and nurses, deal almost exclusively with congestive, rather than diastolic, heart failure - and the treatments are radically different. Treatment with the wrong medications can be irreversible and potentially fatal. We've struggled to find cardiologists in Arkansas who are familiar with the disease, so it makes sense to us to relocate to the Boston area where we can be minutes away from an entire cardiology team that is intimately familiar with HCM as it relates to diastolic heart failure. Plus, Tufts Med Center has a strong history of transplant success, due to the caliber of its doctors and the sheer volume of transplants done at their hospital. We obviously intend to research all that we can about the hospitals closer to home, but it's important to understand that 1) I have to be evaluated for transplant in the region where the procedure will be done (I can't be evaluated in Arkansas and have the transplant in Massachusetts), and 2) it's imperative that I receive informed, experienced care from an HCM specialist until the transplant. Both of these points cause us to lean heavily toward relocating to Boston as soon as Christie is able to find a job there.

It's also important to correct some mis-information about heart transplants that many people have. On TV shows, transplants are often portrayed as the cure-all for heart problems, and people have often suggested that I “just get a transplant” to fix my heart problem. Although the actual transplant procedure is routine for transplant teams throughout the country, the aftermath for the patient isn't always as depicted in the movies. The body's immune system always tries to reject the organ because it is considered “foreign tissue.” This requires a lifelong dependency on immuno-suppressant drugs, which sometimes make the patient sick or cause hosts of other problems. Transplant patients are at high risk for infection, causing the transplant to fail. The most daunting news about transplants is that even with a good match and successful recovery, most transplanted patients only survive 10-15 years beyond the transplant. At that point they can be re-evaluated for a second transplant, if they are otherwise in good health. Hopefully those numbers will rise in the coming years, but it definitely makes a transplant a “last ditch” option, rather than the permanent cure-all often depicted in movies and TV. This is the hardest thing to deal with I think, given the ages of our boys, and the many things we hope to do in the future as a family. We have explained as much as we're comfortable with to them, but it will take a few weeks to ease them into the idea of me receiving someone else's heart - especially Richard. This also means that we need to have the boys tested to see if they have inherited HCM, which can be done more accurately at Tufts, where the research is being done. On the bright side, Dr. Maran says I am an excellent candidate for transplant because of my age, family, and otherwise healthy body. I will still have to go through a 6 month battery of physical and psychological tests to get the green light, but he's confident that I will pass them.

So what now? Everyone asks what they can do - the answer is “not much,” unless you have an apartment for rent in the Boston area! Pray, enjoy your family, your work, the weather, and all the good things the world has to offer. Just knowing you're thinking about my family and supporting us means more than you know. I'll keep you updated as we find out more and make plans. Thanks for asking.


To summarize: heart bad, death imminent, transplant needed, shit fucked up, beautiful day outside. :)

Dave
p.s. Sorry if some of you recieved this in your regular e-mail already or thru FB already...

Nicker on 20/5/2010 at 23:52

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Respect, fett.

I wish I could just send you some old game save files or new codecs. I will take your reminder to enjoy and embrace the life I have now. Not to be grim but death is always our companion, it's just that some of us can indulge the vain delusion that we are immortal or that we at least have a goodly string of tomorrows before us.

I am glad to hear there is an excellent facility to help you and I hope they can and do get you fixed up right quick.

Everything else I wrote sounded even more maudlin than the above so I'll quit while I'm ahead.

Chade on 21/5/2010 at 00:08

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:(
















:(

Shug on 21/5/2010 at 00:58

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Not really sure what to say, enjoy the time with your wife and the boys and trust in some of those world class docs.

Enchantermon on 21/5/2010 at 01:15

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Wow, dude. That's insane. I'll be praying for you.
Out of curiosity, you mentioned that you can have a second heart transplant after a while to hopefully extend your life past the 10-15 years. What about beyond that? Is there any hope for a third transplant? Fourth?