We live 1 day at a time and remain flexible. Our coordinator called me Thursday morning and said labs from Wednesday showed elevated LFTs and they would like us to bring Alli to Children’s for an ultrasound and liver biopsy as soon as possible. They asked if we could get there for a Monday morning appointment but we said if they wanted us there sooner we could be. So they got everything scheduled for Friday and we packed up as soon as we had confirmation that the tests were scheduled and came up here to Denver. We got to the hotel around 11:30 and hit the hay. Alli had to be at the lab at 8 and, of course, had to be NPO from midnight since the biopsy is done under anesthesia. Ultrasound looked good, so off to wait for 2-3 hours in pre-op until they were ready to take her for the biopsy. We got results from that today and it showed some mild rejection starting so the plan is to start IV steroids and give her 3 doses over 3 days and if labs look good on Monday morning we can go home after her Monday morning dose.
Everyone is different so there’s really no way to predict how many times she could fight rejection. One person might have a total of 1 rejection episode in their lifetime. The next person will have the exact same treatment and could fight rejection every few weeks for a couple years. It is expected to level out after 6 months to a year as they figure out the proper balance of Tacro for each individual. Some people will be able to settle for a very low dose and some will need a higher dose just because their body tends to fight the new organ more. Children have very active immune systems so they tend to have more frequent rejection spells, which just means their immune system is working well. Alli’s immune system is incredible when it comes to viruses so I would expect she may fight it more but who knows? The steroids knock the immune system down when it gets too strong for the transplanted organ and lets everything settle down again to a level that the Tacro can handle. Since steroids aren’t good for a body long term, they only use that as the extra kick the immune system needs when it’s too strong for the Tacro. Then they immediately begin to wean the steroids again. (So yes, we are back to where we started 2 months ago… roid rages, puffy cheeks and belly and mood swings ?? they haven’t given her the first dose yet cuz it was nap time and they pitied us enough to give us a few moments of peace ??)
They tell us this rejection episode is likely caused by the fact that her Tacro level was so high (20) a couple weeks ago, then they had her skip taking it for 2 days and resume at half dose. Then it dipped down to 6 and was low for a few days. This is why it’s very important for her to take Tacro on time (e.g. within 30 minutes of 9am and 9pm every day) so the levels in her blood don’t drop low enough to let her body start rejecting. If the Tacro gets behind it can’t catch up without help from the steroids. And it’s also the reason that labs are done so frequently as long as she is coming off steroids. They want her Tacro trough to be between 10 and 12. If they were only doing labs every couple months the rejection could be escalated by the time they find it out. If she goes into acute rejection they’re looking at re-transplant…usually within a very short time frame-like 48 hours. So…the earlier we can catch it the better and easier it is to treat.
It’s all about balancing the immune system…suppress it enough that it doesn’t reject the transplanted organ, and stay away from contagious illnesses. If the immune system is weak it can’t fight off bugs as well, and the organ suffers and when the body tries to fight off the virus it fights the organ too. That’s why we try to avoid anyone who is sick, especially during this early post-transplant phase.
The good news is…they eventually outgrow it and rejection episodes get less frequent the farther out from transplant we get.
And in all honesty, we would MUCH rather deal with rejection than infection or other possible complications! So we are thankful!!