"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Wednesday, July 29, 2009

Details on Heart Transplants FYI

Over the last couple of years, we have been asked several times, "Why don't they just give him a heart transplant?" There is a lot of logic to that question because it makes sense to get a healthy, perfectly formed heart in exchange for a diseased, overworked, misshapen heart. Heart parents learn quickly that heart transplant is a "last resort" and the "least desired" route. The reasons center around inevitable rejection and lifelong invasive procedures to check for rejection. Often times, the anti-rejection meds actually cause cancer so then the child is faced with chemo treatments. Here is a little info from another children's hospital that gives answers to FAQ's about pediatric heart transplantation. The number I have seen a lot concerning life expectancy of a transplanted heart is in the neighborhood of 10 years. Even if a healthy heart did last him into adulthood, he would need retransplantation at some point because transplanted hearts develop coronary artery disease. Often patients have to have monthly biopsies of the heart done via cath to check rejection level and adjust meds. Let's just say that that choice is certainly not "the easy fix" or the one that provides for the best quality of life. Don't get me wrong, heart transplant far exceeds death, but if we can, we'd like him to keep his own heart as long as possible! Just for the record.


meesha2601 said...


I totally agree!!! People ask us the same question all of the time. I tell them, "well if the heart transplant is rejected then the game is over". No, second chances usually. So, ya we all want to keep our little kiddos damaged hearts as long as we can. It's so hard for everyone to understand. I can only imagine what you are going through right now. We are praying and thinking of you and Connie everyday. Connie is a lucky little man. Keep up the great work.

Heart Hugs,
Nicole Hoagland mom of Lorelei HLHS

Lisa said...

Yeah, they make it sound so simple. Like, wow. Why didn't I think of that?!?!

I'm sorry that you have to entertain the thought (and that you are up right now Googling information about transplantation!).
Adding my prayers that God will grant you the strength you need for such a time as this.

Take care~

Yvonne Mallon said...

Since I talked with you today, I have thought about Conway all day. I am really eager to hear Dr. Bove;s input. I mean, really, why can't they just work on the valves? That is just one person's opinion...and he is head of transplant...so to me, he is going to think transplant. I am hoping and praying that Dr. Bove feels that he can operate on the valves.
You know I am here for you day or night.

Take care and remember....Breathe.


ellen mcdonald said...

Erin, I'm so sorry that you're getting this news, and hope that Dr. Bove will have a different take. For what it is worth, with enzo's post-DS aortic insufficiency, Dr. Hanley and our PC have always so far said that there were surgical options - it may be worth a paper consultation out here if you don't get the answer you want in Michigan. You're an amazing mom to be dealing with this,

Ellen (Yahoo L-TGA)