Several people have asked about Mattea getting a heart transplant, including me!
The reason is that Mattea's lungs are also damaged. That's also the reason she can't have her heart repaired. The solution sounded simple to me, why not a heart-lung transplant? The cardiac nurse at Denver Children's Hospital explained to me that the only 100% cure for pulmonary hypertension is a lung transplant. However, lung transplants have a very, very poor mortality rate with something like only 5 or 10% surviving more than 5 years. The heart transplant part would be easy with a high success rate, but the lung transplant part would unfortunately probably shorten her life, not to mention what it would do to the quality. We were also told that there are people in their 50's with pulmonary hypertension, who have been medically managed only. So if that's the case, then it may not be the death sentence we thought it was.
Mattea is a happy camper this morning scouting around looking for trouble, without her oxygen tubing trailing her. Viva, Viagra!
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Thanks Lou, for the post! I was one of those who asked about a transplant. You explained it very well! Sounds like medical management is the way to go. You are so on top of things!! What a great mom Mattea found for herself!!
ReplyDeleteHi Lou!
ReplyDeleteMedical managment is always the way to go and transplant is generally a last resort -- particularly hearts and lungs or both!!!
I'm not sure if it is different for very young children -- though I don't think the differences are all that much: mortality rates for lungs are a bit higher than you mention -- maybe it was misspoken... 5 year survival rate is often a little better than 50%. that's still not great, but it's far better than the 5-10% you mentioned... And, those survival rates are climbing as each year passes with improvements in immunosuppressive drugs and management of lung or heart-lung recipients...
I do agree that the lung part of a heart-lung transplant might be the cause of reduced life expectancy... But the improvements in quality of life for hearts and/or lungs can be truly amazing... Yes -- there are many potential side effects from the numeous drugs we take... But the ability to breathe like a "normal" human being is truly mind-blowing for some of us...
I'm a little over 9 years post double-lung transplant... My life was saved by a beautiful, thoughtful girl from Iowa named Kari... Part of my mission in life now is to tell others about her, and what she means to me -- and through that, help them understand the pure goodness shown through organ donation... I hope if Mattea ever needs a gift like those Kari gave -- I hope they are there for her and I will do everything within my influence to see that people know about the Mattea's of the world... She is absolutely precious...
Mattea, and you, are in my thoughts and prayer...
Love, Steve