Charlie’s health has been pleasantly uneventful for 4 1/2 years since his second transplant. He had some gastrointestinal issues for a while, but found that they were caused by medications and got it all worked out.
Friday, Jan 29, 2010, Charlie fainted at school. We took him to Phoenix Children’s Hospital. He was kept overnight, monitored and released the next day. They really didn’t know what happened, but suspected something to do with his heart. A day later, (Sunday) he was in the kitchen, fell, and hit his head on the floor. We took him to the hospital the next day so they could run tests, heart monitor, heart cath, etc. His heart cath. in November showed that one of the coronary arteries was beginning to narrow in one spot. It was still pretty wide open and nothing to worry about, but the UCLA doctors were concerned that it could be humeral rejection. We sent blood to UCLA for antibody testing, but had not gotten the results until our cardiologist asked them about it while Charlie was in the hospital. It had showed some rejection. The transplant doctors felt that there was enough concern about his heart causing the fainting/falling that they decided to put in a defibrillator.
Humeral rejection, or Antibody Mediated Rejection as it is also called, is different from the acute rejection that he had so often with his first heart. They can’t bombard him with antirejection meds for a couple of weeks and send him home. Humeral rejection is a vascular type of rejection that affects the arteries and blood vessels of the transplanted organ, building up a type of plaque similar to coronary artery disease. Charlie probably had humeral rejection with his first heart as well, but they didn’t know enough about it at the time. There is very little they can do to treat it, except plan for another transplant and hope that they can find an appropriate match.
It has been 3 weeks now since defibrillator surgery. Charlie is doing great, back in school, but not allowed to play basketball or go to PE.
We have an appointment to go to UCLA for a consultation with the transplant doctors on March 22. We’ll find out what the plan is, but it looks fairly certain that heart transplant number 3 is in the works.
