Yesterday was another doctor’s visit. I told Logan as we were leaving the hospital, it’s probably the first time I’ve actually felt happy when leaving the doctor’s clinic. Up until the transplant, I wrongly believed that every time I met with the doctor, he would tell me that either there was a misdiagnosis and I didn’t have PSC, or that magically, I was getting better. With that information in my head, you can imagine my disappointment when the doctor would tell me every time, that the disease was slowly progressing. Yesterday’s doctor visit didn’t have spectacular news, but it was still very good. I was most happy because we saw all but one surgeon that performed our surgeries, and all of them were very excited to see us.
Logan and I went down to the hospital early to make sure I got my blood work done and took my Tacrolimus (Prograf) at a reasonable time. That left us two hours until my appointment at 12:30. I ate second-breakfast while Logan had Earl Grey Tea, and then we decided to go on a walk around the hospital and surrounding buildings.
We were still early, so we sat outside the hospital and started people-watching. Then we watched the surgeon we were scheduled to meet with walk out of the hospital to get some fresh air, and we had an impromptu doctors appointment on a bench. He encouraged us to go back to the clinic to get our doctors appointment done early. All the clinic rooms were full, so we met the surgeon in his office. It felt like were were in the principal’s office in trouble, but really we had gained access to the doctor’s secret lair; patients don’t usually get to hang out in the doctor’s offices. The surgeon, knowing our love of numbers, started with “Boy, your bilirubin numbers really plummeted this week.” He was being his normal sarcastic self, as the number went from 3.0 to 2.8. At 2.8, the yellowing of the eyes is still visible; it’s not until 2.5 and below that there is no visual indication of jaundice. We continued to quiz him on other numbers, things we read in the medicine facts that are given with the drugs, and nonsensical things. The doctor visits now are about 20% how I’m doing, and 80% questions and discussions about PSC, transplants and liver disease.
I would argue that the appointments are 20% how Derek is doing, 60% questions about PSC, transplants and liver disease, and 20% yucking it up and talking about silly stuff. This particular surgeon likes to bust Derek’s chops about all the hair on his–ahem–chops, so this week I brought in a bunch of photos of Derek’s many facial hair experiments. He was cracking up at all of them and thanked us for cheering him up; I guess he was having a bad day. After the appointment was over, he asked us how else he could help. We mentioned that we were still looking for a few more surgeons to sign our liver poster. I ordered a poster online that’s just like the ones in the clinic and we’re having the team autograph it. They’re all very rarely in the same place, so we’ve been slowly gathering signatures. Derek’s surgeon told us to hang tight in his office and then said he would gather the troops for us.
Meanwhile I met with another member of the team to sign consent forms for another research project the hospital is participating in that involves live donors. I am more than willing to share all of my medical files in order to help others and I happily gave my consent. As we were talking, surgeons began filing in the office with huge smiles, plus hugs and handshakes all around. They were all so happy to see Derek in such good shape. His primary surgeon also came in and insisted that next time we go in–in two weeks–that we meet with him. Yes, now the doctors are fighting over Derek. On our way out, we also ran into Derek’s liver doctor who was more than happy to sign our poster. Derek has been seeing him for 10 years and of all the people in the clinic, I would wager his smile was the biggest when he saw how well Derek was doing.
We say this a lot, but this amazing team of doctors and nurses are now a part of our lives. They give us crap, and they laugh at our ridiculous attention to detail when it comes to Derek’s meds, and my inordinate amount of questions regarding all things livers, but, as they mentioned to us today, they love us. And we love them. They know now that we love to hear all about the science stuff and they talk to us like we’re colleagues, or maybe, just junior members of the team. They saved Derek’s life, and they made sure I made it through my surgery safely. It’s 100% icing on the cake that we like them so much and enjoy our visits.