Transplant issues
At the most general level, the issue with transplants is balancing between two
major threats (a rock and a hard place): rejection and infection. The
balancing dial is set by immunosuppressant drugs: more suppression helps
eliminate rejection, but opens up the system to infection. The other major
factor is time: rejection is a much bigger problem early on, and then the
system adapts and lower levels of suppression can be used. Thus, after
navigating this balancing act for a couple of years, the suppression levels
are typically low enough that infection is not a significant concern relative
to the rest of us. The trick is making it through the first year or two.
The reason they keep the kids in the hospital for 6 months after the
transplant is because there will be several infections from both
bacteria and viruses, and there will be episodes of rejection, as they
get this balancing act sorted out. They just have to stay on top of these
things in an intensive care setting: detect early and treat quickly. With
improvements in antiviral and antibacterial medications, plus better more
selective immunosuppression medications (tacrolimus/prograf and
thymoglobulin, pioneered at Children's Hospital Pittsburgh), they have
achieved 100% survival rates for the first 18 months in their latest series
of 74 patients. This is very encouraging. Nevertheless, some people do
develop chronic rejection and infection problems, and parents' ability to
stay on top these things is variable and not as good as an intensive care
unit. Thus, the rate falls to 86% survival after a few years. We are
hopeful that we can be better than average parents for Max, and he'll have a
very good chance of thriving. Nevertheless, it certainly will not be an easy
balancing act, and it will require sustained vigilance on all our parts.
Indeed, one of the most risky times for patients is when they become
teenagers, and are less reliable in taking their immunosuppressant drugs.
Some intentionally don't take them, as a kind of rebellion against the
oppression of having to take this pill every day of their lives. It must be
kind of strange knowing that if you don't take your pill every morning and
night (this is the typical stable schedule), you will almost certainly die
within a few days. We hope that Max will appreciate the miracle of his being
alive, and do a good job of taking his meds. And probably the drugs will be
better by then.