EGD Adventure and Candidacy Acceptance

Wednesday this week, Roy and I got to know a new tower at Houston Methodist – Jones – as he now will have things like the EGD done within their system by liver-center affiliated personnel. It was a long day, made longer by a set of instructions absolutely in conflict with the desires of a cranky anesthesiologist: a sip allowable on the printed EGD instructions triggered a 2 hour minimum delay for the procedure. Roy’s 2 pm EGD actually happened at 4:30 pm. We got to eavesdrop on the nursing staff for a good 3 plus hours as the pre-op area cleared out around us and they prepared for the next day’s patients. The nurses let us know that Roy was the fifth patient given a delay by this doctor in the past week. The good news is that the second anesthesiologist was funny and the gastroenterologist was content to spend the time doing his charts before doing the procedure. The EGD was very quick and Roy had no varices; he did not need any bands and does not have to repeat this for at least a year. Note: anesthesiologists get the last say on if a procedure goes forward and we will just err on the side of caution going forward and say no to any sips.

Thursday brought a quick unexpected call from his social worker asking me for the names and numbers of his primary caregivers so that she could verify their agreement before the Medical Review Board met at 11:30 am. The official paperwork for the 24 Hour Care Plan and his official agreement to comply (by not doing the things that he is already not doing) if they give him a liver were not due back until next week. While the Medical Review Board met in Houston, I met with Cathy and Kathy about the care plan and we sketched out some preliminary structures in case Roy got an approval. The Middleway Urban Monastery in College Station has a very peaceful space for such conversations and it was a quiet, refreshing break in my work day.

By the time that Don, Dave and Jennifer helped me retrieve a credenza from downtown Bryan later that afternoon (many thanks!), Roy was on the phone with Transplant Coordinator Vala and receiving the Medical Review Board’s decision. Roy has been accepted as a transplant candidate and they are referring him to the transplant center pending some additional tests and the elimination of his HCC. He needs to see the cardiologist for their standard pre-transplant cardiac tests and he was being tasked with an EGD, but he just did that, so doesn’t have to do it again.

Roy has accumulated two more specialists: an oncologist and a Methodist pulmonologist. One is for the HCC and the other is because of his pulmonary function tests during the transplant evaluation. The listing on his MyChart made it appear we might have to drive to Baytown (they are based at Methodist Baytown), but we learned today that these two specialists will see him at the HMHMC Liver Center so we are not going to visit the bay after all and they are already scheduled. We await scheduling with the cardiologist. I made the mistake of saying to a colleague that the next few weeks would allow for some focused work (annual reviews, several summer preps, semester wrap ups) because Roy’s medical dance card should be empty for a bit. Silly me.

Coordinator Vala told Roy that he was the only one they voted on yesterday that got a unanimous approval and that Dr. McFadden was there ready to fight for him. He explained that the spots that have appeared on Roy’s liver are not currently cancerous (other than the tumor being treated) and that after the cancer is eliminated, there will be a waiting period of about 6 months before Roy can be activated on the list; when he is activated the HCC will give him a base MELD score of 30. The average liver transplant recipient at Methodist has a MELD of 34. Roy’s actual Transplant Coordinator will be Ashley and we expect to get more details this week.

We celebrated this milestone by indulging in Champions pizza and salads. Roy then spent a lot of his evening talking to his friends and sister on the phone and I sent out texts to care team folks and family.

The pathway still has many potential forks ahead – the cancer remains a formidable roadblock and there are any number of ways a transplant process could go. (In my mind the way ahead looks something like a tangle of tree branches because there are so many variables that might force our steps from one path to another and back again at any given time – there’s not a single straight road.) However being granted transplant candidate status is a definite step forward toward a hope that has previously seemed very out of reach. Thursday was a positive day and we’re still savoring the moment.