In the past year, I have been asked the same question many times. "So, he's good now, right?" I understand completely where the question comes from, but I feel the need to clarify the answer. I always just give the vague answer of "For now, yes." Here is the truth: Christopher is not, nor will he ever be in this life, cured. There's a saying that goes, "Transplant trades one set of problems for another." While this is true, we have never looked back and we would take the set of "problems" that we have now any day over the problems we had pre-transplant. He was dying. He was always blue, his oxygen saturation was never above 80% (which, in addition to not being good for your organs, causes a lot of physical pain), he couldn't roll across the floor without stopping and panting for ten minutes, he was very delayed in his motor development, he was hospitalized for EVERY SINGLE illness he contracted, he had a very poor appetite and was tube fed for most of the time, and he vomited any time he started crying and frequently for no reason at all. The vomiting became so common place for us that we just had towels and containers strategically placed throughout the house. Here he is a few weeks before he received his new heart. You can hear him panting, and he looks very sick.
So what are these new problems we've inherited with transplant? Well, to start, Christopher will have to take medications every day for the rest of his life. He was already doing that, but these new meds suppress his immune system so that his body will not attack the heart that is seen by his immune system as a foreign thing. He will get sick more easily than most people and will have to adjust his life accordingly. In addition to this, the meds that he's on are famous for causing kidney damage and cancer. Luckily, he has not had any problems with his kidneys thus far, and the cancer that the drugs can cause is pretty treatable.
Another problem arising from transplant is that a transplanted heart doesn't last as long as a non-transplanted heart. Plain and simple. We've heard that on average they will last from five to ten years, but with newer and better treatments and medications, that statistic is improving. I personally know two young children who have already had to undergo a second heart transplant, but I also personally know two people who have had their transplanted heart for over 20 years. There is really no telling how long it will last, and if and when it does fail, he will need another transplant to survive. Current statistics say that 90% of heart transplant recipients survive to one year post transplant. The number goes down to 75% at five years, and about 50% at 15 years. We remain very hopeful that his heart will last a long time, and that by the time he needs another one, stem cell researchers will have developed a way to grow his own heart. Amazing things are happening in this field. Just watch this video to see what they are already doing!
In order to prevent damage to the heart, we keep a close eye out for any signs of rejection, take vital signs every day, have frequent blood draws to check the levels of his immunosuppressants, and he will have a biopsy every year. These seem like such small things to me to take care of his donated heart.
Those are most of the serious problems associated with transplant. Now for the weird and interesting. Most people don't realize that the heart is innervated, and that when it is transplanted, that nerve, of course, is severed. It's the tenth cranial nerve, called the vagus nerve. This is what sends signals from the brain to the heart saying, "We're exercising now, let's beat harder and faster." Now Christopher's heart can only respond to chemical changes in his blood (adrenaline released from the adrenal glands as part of the parasympathetic nervous system) in order to beat faster and stronger. I have a friend who was a young teenager when she was transplanted and she said it takes her heart about 15 minutes to start beating faster when she exercises, as opposed to the almost immediate response most of us have. While this doesn't cause any real problems, I thought it was interesting. Here is more information on that:
This anniversary is a joyous one for us, but we are keenly aware that for someone else, it is a completely different kind of anniversary. A year ago, someone, somewhere (we still have had no communication from our donor family, although we did write to them) allowed a surgeon to take their child and remove his or her heart. I think it would be so hard to not be holding my child as he or she took his or her last breath, but these donor families don't get to do that. They hold and kiss their child's still warm body, then say goodbye at the operating room doors. What brave, selfless, and amazing people. There is no way to sufficiently say thank you. The best I can do is enjoy every minute that I have been given with my children. I've been given another year with my boy, and it has been incredible. We will make the most of every day.
