We (my wife, Wendy; my son, Wil; and I) all had an interesting journey within the past month going through the process of getting our son on the transplant list. As of right now, the only "cure" for our son's condition, Primary Sclerosing Cholangitis (PSC), is to get a transplant, either from a live donor or from a dearly departed.
A few weeks ago, we had a day-long meeting with different specialists at Children's Hospital Colorado (CHC) who will be involved in Wil's transplant evaluation. It started at 7:45am lasting until 4pm.
We met with a transplant surgeon, anesthesiologist, dietitian, social worker, psych fellow, transplant coordinator, his doctor, got EKG, labs, and lastly, chest x-rays. Quite the information to process and digest in one day!
That Friday, Wil's doctor presented his case to a panel of doctors to be put on the list since the longer we wait for symptoms to really rear its ugly ass, it can impact his heart, bowel, and intestines in the long-term. His cholesterol number is in the stratosphere, because his liver hasn't been able to properly digest and clean toxins out of his body. Also, with being on the list now while reasonably healthy, we may be selective about accepting a donated liver rather than rushing and accepting a "good enough" liver. We can accept any liver if he becomes really sick. It's news to us that you may be selective based on the donor's history.
We went back to CHC the following week right before Christmas to do an echocardiogram (results looked good!), more labs, and one more meeting with the transplant coordinator to go through the paperwork before we signed to have Wil placed on the transplant list.
After a few weeks of wrangling, delays due to the holidays, we finally got the good news -- Wil is to be placed on the transplant list! Huzzah!
First things first tho', he has to get up to date on booster shots and other vaccinations which we did yesterday. Even though he's on the list officially, he won't be able to get a transplant for at least 30 days since the live-virus vaccination needs to be worked through his system.
Come February, we will be called at a moment's notice ANYTIME to get to the hospital to start the transplant process. Right now, it's heady to think that someone's liver will be transplanted inside of Wil. At the same time, we are excited as his quality of life would be improved dramatically.
One thing at a time.