Care4Conway: Details on Heart Transplants FYI

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.

4 comments:

Unknown said...: Erin

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; July 29, 2009 at 10:33 PM
Unknown said...: Erin,
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~; July 29, 2009 at 11:42 PM
Yvonne Mallon said...: Erin,
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.

Yvonne; July 30, 2009 at 12:45 AM
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); July 30, 2009 at 12:50 AM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.