Receiving a transplant is bittersweet in many ways. First, the fact that one needs a transplant is bad, but the fact that they could actually find an organ compatible is good. Second, the fact that one now has a functioning organ is good, but the fact that one will have to be on immunosuppressants, with all of their side effects, for the rest of one’s life is bad. Third, the relief as a parent of a child receiving a transplant is huge, but the constant worry that follows it is also huge. I am lucky in that I am typically a pretty optimistic person who does not want to worry about things that may not happen until they happen. But, in this situation, I find myself constantly in a state of underlying worry and stress. I am happy that M’s rejection level went from a 3 to a 2 in the last two weeks, but I am also worried that the number was not a 1 or 0 as the transplant coordinators seemed to want. I am also worried that M is now having to have twice as many biopsies as they original had her scheduled to have (she has another in two weeks). I am also worried everytime I think about all of the side effects of the medicines she is required to take. I find my stress level going through the roof everytime she has spits up more than a very slight amount (the digestive system is usually one of the first signs of heart failure in infants). It all weighs heavily on me, even if I don’t regularly “think” about it directly. I just want her to be well again, and really she is right now. She is doing great. But, I don’t want this rejection to get in the way of that. I can only make sure she gets her medicines that she is supposed to get and hope that they do the job they are designed to do and do not cause her any more health problems. I am so thankful that she has received a new heart that, by all medical tests and appearances, seems to be functioning well. But, that thankfulness is always tempered by these other worries – hence, the bittersweet reality of transplants.
On a positive note, research is moving forward constantly in the area of transplants. I am hopeful that some of this research can have a positive impact on M’s life – give her (and me) some relief from her lifelong pursuit of balancing rejection against maintaining her basic health. On that front, research being done right here at Lucille Packard Children’s Hospital is attempting to identify gene markers for those likely to be able to tolerate transplants without immunosuppressants and those who have a necessity for the immunosuppressants. For me, the most exciting prospect is this:
“The real value of this technology is the ability to easily and repeatedly monitor patients over long periods of time,” said Sarwal. “We can keep an eye on this genetic signature and watch for changes that might indicate the beginning of rejection before any clinical signs are apparent. This could be a very exciting advance for both patients and physicians as it can lead to the ability to, for the first time, safely customize immunosuppression for an individual patient.”
Right now, the immunosuppressant levels seem like such a guessing game for the doctors that this idea of being able to customize for the individual patient seems huge. You can read more about this research here.