We have a problem!

Well, here’s something else we have to work on… Adults with Congenital Heart Defects (CHDs) don’t fare as well as others when they receive a heart transplant.

That’s what the research shows, but I can tell you that ain’t always so. My friend Anthony had has defective heart replaced just over a year ago and he is doing quite well! Paul Cardall is also doing well – and on June 9, 2010, Paul is going to climb Mount Olympus just outside of Salt Lake City, Utah!

But let’s look at the “official” numbers. First, this report is from the United Network for Organ Sharing (UNOS) so there is no doubt it is legitimate. According to the new research, almost 8500 patients who received a heart transplant between 1990 and 2008 were studied. Of the 8496 people in the study, 575 of them were adults who had a CHD. While the number of Heart Transplants seems to be trending down, the number of adult CHDers receiving a transplant trends up! (This may sound strange, but the study focus on patients who received a heart transplant only. Overall, we seem to be doing more multi-organ transplants – heart/lung, heart/liver. The study does not count these patients.) And while more of us are getting new hearts, we don’t seem to do as well. More of us need another transplant, or even pass away.

These are scary statistics, no doubt about it. But they are helpful – before we can fix a problem, we have to realize that there is a problem. I am sure that some transplant surgeons have known for a while now that Adult CHDers don’t seem to do as well after transplant, but all they had to base that on was experience. Now we have scientific evidence to prove it.

The next step is to study the numbers some more, or redesign the study, and try to find out why we don’t do as well after transplant. I’m willing to bet that UNOS is already doing that.

Find the problem, then fix the problem.

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4 Responses to “We have a problem!”

  1. Holly McKell Says:

    Hello!
    I am an adult CHD (single ventricle, single atrium, etc..) I am currently waiting to hear if I have to have just a heart translpant or a heart/liver transplant. I found your blog through my friend Paul Cardall’s blog. I’m so happy to find even more people that understand the difficulties that I face.
    Thanks
    Holly

  2. Melanie Says:

    While waiting for Scott to get a new heart we were told many times that his risks were greater than the average heart transplant because he was ‘congenital’. They considered a VAD as well but his anatomy made it much more risky and possibly less effective. It was a very difficult road -more so than the others we met who had transplants around the same time but Scott is still going 16 months later! He would not have made it without the transplant.

    • Steve Says:

      The two CHD Transplant patients I know are doing well – one is a little more than a year post-transplant; the other one nine months. I hope Scott continues to thrive!

      Steve

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