Yesterday I got up uber-early to head up to Gainesville with my brother, Geoff. He had an 8:30 appointment with the transplant specialists at the Shands Medical Center. His clinical day, Monday, was Shands in the morning then Moffitt in the afternoon and lots of time on the phone with the Miami transplant center in between.
Essentially, being sick is a full-time job.
Shands turned him down. But the trip wasn’t an entire waste of time because you learn something every go-round – and this was the first opportunity I’d had to actually sit in on a conversation with one of the doctors.
Essentially, Shands said “no” for the same reasons Mayo did in Jacksonville… then more besides because it’s been a few months since the comprehensive Mayo evaluation and a couple more things have gone south since.
I’m not posting my blog today to hang all my brother’s personal medical details out for public view, but to talk about a couple of Big Picture stories that Geoff’s journey bumps up against and sheds some light on.
First is the enormity and complexity of liver disease. The doctor told us there are 15,000 people on the transplant waiting list at any given time – and around 4,000 procedures annually. One reason people don’t get new organs is availability, and the other is when the team doesn’t think a new liver would solve the problem.
Another story is cost. Cost is a tricky issue to talk about because there are a lot of internal contradictions, logical non-sequiturs and “1,000 pound gorillas in the room”.
First of all, cost is entirely irrelevant if you don’t qualify for a procedure for medical reasons. Then, and certainly related to this, no amount of money is capable of effecting a cure that’s not there to be had. At the same time, all resources are in a finite supply, so both benefits and expertise are allocated according to industry standards. It’s a fact of life in that enough money will certainly buy preferential access… but dollars probably won’t buy a liver you can’t use, and money certainly won’t change the medical facts of your case.
We also discovered that cost-cutting measures back at Geoff’s old workplace (the people who provided medical insurance as an employment benefit) directly impact his point of service options. Simply put, when my brother’s old boss decided to switch to a cheaper healthcare policy, Geoff lost benefits.
The doctor at Shands was personable, friendly, engaging, knowledgable, familiar with Geoff’s file, frank, realistic and – this is important – attentive. He was not rushed or conscious of time, he fielded every question and he wasn’t evasive out of fear that we’d quote him somewhere else or attach unreasonable expectations to his opinions. Above all, he obviously respected Geoff, Geoff’s medical knowledge, and his level of understanding. The doctor even offered concrete suggestions as to what specific questions he would have addressed next if Geoff had been accepted as his patient.
So, kudos on the doctor… but ongoing disappointment in Geoff’s liver. His liver is supposed to be a vital organ, but it seems to have commitment issues, and is continuing to move toward an increasingly vulnerable future.
I may be learning a lot – but I don’t necessarily like what – now – I know.