A Little Bit about "Over" Immuno suppression

Today I had the good fortune to accompany Patty to Sarah's monthly clinic at Children's Hospital. Sarah's liver labs are looking extraordinary so everything appears good on that front. I got to meet the resident comedian, Dr. Reyes, who also happens to be the director of transplant services. He is the man who searches for donors and oversees surgeries at UW and Children's. He was a wealth of information and in our consultation with him today, a few things were noted.

First, Sarah still has very bad cradle cap. It gets so bad she picks at it and her head will bleed from the scratching. She also pulls her hair because of the irritation. This has come and gone but bugs her a lot. Dr. Reyes says that the tacrolimus can cause hair to fall out so that could be one of the reasons for her discomfort. She also gets dry skin around her mouth, no doubt somewhat because of her binky.

Second, the only lab numbers that Dr. Reyes is concerned about all look good. There is one that could indicate bile problems, but that is within the normal range.

Third, because of Sarah's skin issues and due to past experience, Dr. Reyes has suggested lowering the tacrolimus (the anti-rejection drug) to two doses per day three days a week and one dose per day the other four days. This is due to the possibility of an over immunosupression, even at the small dosage Sarah is taking. This type of hypersensitive immune system could be the reason for the scalp and skin issues.

It seems we have entered the stage (or have we really ever left?) of "balancing" things in Sarah's medical regimen. According to Dr. Reyes, about 70% of transplant recipients experience this drug toxicity, or hypersensitive immunosuppression. This can lead to future issues and that is why they pursue such a proactive stance. He admitted that they are right 70/30 in these cases. The 30% they are wrong can lead to liver rejection but he made the point those patients have been treated and returned to stable conditions. Not one has been lost in any way. That was comforting. We have realized from the start of this adventure that our lives (and Sarah's) would never really be "normal" again. A transplanted organ tends to do that.

We just roll with the punches and move on. This was good information to learn and will be helpful moving forward. As a logical being, I like to have all the facts and possible scenarios in front of me so I have an inkling of what to expect. There are always exceptions and surprises but to have some type of clue what is happening is important to me. Then again, maybe that is something God has to work on within me and maybe its because it is my daughter we are talking about.

We aren't concerned because Sarah is doing so well, the staff at Children's is unbelievable and she is in the care of Jesus. Your continued prayers are appreciated. Our lives would be incomplete without your involvement.

God bless,
Kirk