Heart Transplant
I was recently asked if the Fontan would be Justin’s third and final heart surgery.
While the Fontan completes the third stage of the palliative surgeries, it is not guaranteed to be his last. There are too many scenarios I’d rather not dwell upon at this point, but “touch-ups” to his heart may be administered should it fail. Ultimately, when his own heart can no longer work for him, he will require a transplant.
In the beginning, my medically untrained mind could not understand why a heart transplant would not be the best solution to Justin’s half a heart. After he performed the echocardiogram on Justin while in utero, the pediatric cardiologist, Dr. Rebolledo, explained to us that the goal is to have Justin live with his own heart as long as possible. His doctors and surgeons would try every method possible for his heart to work for him with surgeries, medications, and lifestyle changes. A heart transplant would be a last resort.
At the time, I thought that the shortage of donor organs were the main issue for this reasoning. But, through internet research, and some eavesdropping (our hospital room neighbor had a liver transplant), I realized living with a donor organ would be much more difficult than with the half he has. With a donor’s heart, Justin would be required to take a slew of medications (more than the four he’s already taking) including anti-rejection medications that would suppress his immune system, making him susceptible to infections such as pneumonia. In addition, when that heart fails, he’ll require another transplant, which in itself raises new issues from finding a matching donor to eligibility to even get a heart transplant (depending on the amount of scarred tissue that has formed around his heart).
In addition, infant transplant patients face greater complications than older patients, as explained in this article.
With Justin, there is so much to worry about. To give each day its justice, I try not to ponder too deeply into the what-ifs of his future (like whether he’ll qualify for that transplant). I prepare his health the best I can with forming the best team possible for his care. With this, I hope that the surgeon will make the best decisions and the utmost care while performing the procedures as to not create too much scarred tissue. And, that his pediatrician and cardiologist are knowledgeably equipped to monitor his progress, and notice the signs and symptoms of his heart failing before he actually goes into heart failure.
My experience with Justin is each battle is easier to combat when it actually comes. To wonder and dwell on all the possibilities of the future could only bring greater anxiety. So, as always, I take it one day at a time.