February 9, 2015

Behind the Curtain - Part I

Here it is CHD Awareness Week again, and I have been giving some thought about what to write. Last year I posted each day about each of Tim’s surgeries, but I feel like that chapter has closed. Tim’s heart transplant was indeed a gift of life, and I worry less about his heart, but more about things I could have never predicted.

I thought this year I’d try to answer the question we hear so often, “so now what, is he just normal?”

When Tim was waiting for a transplant, the nurses and doctors told us that a transplant is not a cure, it’s just trading one chronic medical condition for another, the difference being that with a transplant the patient has a much better quality of life. For Tim this is 100% true. His diseased heart could not support him very much longer, and he was lucky, he received a heart that was a perfect match for him.

Tim looks like an average 8 year old. He is definitely on the small side, but can physically do anything he wants to do. On the inside, it’s a different story. For us, the cardiology part is familiar – daily medicine, lab work, and frequent check-ups. I think what has surprised us are the new specialties we must become familiar with - neurology, nephrology, neuropsychology and now infectious disease.
Following his transplant, Tim had a brain bleed, which has left him with a seizure disorder. There seems to be no specific trigger for them, and they are pretty well under control with medication. Still, he has been rushed to the hospital 3 times after becoming unresponsive. Also, the medicine for his seizures is tough on his kidneys, so he sees a nephrologist to make sure his kidneys are healthy. We have been fortunate that despite his immunosuppression, Tim has been able to weather the usual colds that float around school, but this fall he contracted c. diff, a nasty intestinal infection that is not a danger to you or I, but quite dangerous for Tim. He was treated and recovered, but seems to have had a relapse in the last few weeks. The result of this is he lost about 10% of his body weight, and has felt much less than 100%. Additionally, the medicine to treat this infection interacts with his transplant medication, meaning he has to have blood draws at 7:00 a.m. every several days. We are seeing an infectious disease specialist this week to figure out a new treatment plan.

No comments: