I’ve wanted to write about our initial transplant evaluation, but for the past few days, whenever I talked about it, I started crying. I guess I’d held on to a lot of hope for months, while sadness had stayed inside of me, not allowed to take form until after this specific date, at a highly anticipated meeting where someone would finally start explaining the path to getting Vernon’s name the kidney wait list.
I took my dad with me. We drove up to The UC Irvine Medical Center, concerned we might be late. Turns out the meeting didn’t get started for another hour. I had to time to cross confirm Vernon’s transportation for the day. The plan was that I’d represent him for the morning information session, and then I’d meet him in the afternoon for the physical consultation. I’d arranged all of this in advance with the UCI people as well as his transport people, who would bring him over from his morning session of dialysis.
There were about a dozen people attending the morning session, half of them in need of an organ. The facilitators were friendly as they collected our medical questionnaires (15 pages each), but immediately, one of them, Marisola, pulled me out of the room. She sat down with me and told me she was already concerned that Vernon’s functional status and perhaps this wasn’t going to work for him to arrive on a gurney. She also thought he might be too vulnerable to go through with a transplant, but I could still talk to the doctor and/or stay for the class. She did find out that the specialist that we’d be meeting with did indeed know about Vernon’s condition and had approved him to come and be evaluated. It didn’t seem right to leave before even learning specifics. We’d come this far, might as well stay. But it was not a great start. Though Marisola was very kind and compassionate when she spoke to me, I was already experiencing a feeling of doom that quietly grew throughout the morning.
I had brought a notebook and filled 12 pages of scribbled notes, hoping to catch every single thing Marisola said in the session, which was a required part of the process as one can only make an informed decision when one is aware of all the steps and risks involved. I just wish I could have been told some of this earlier. I’d been looking forward to this meeting for months, making it a fork in the road to our future. Once I knew if Vernon was eligible to be a candidate, we’d move on accordingly. We even had a handful of “offers”…people willing to be tested as a match for Vernon. Joe has been talking about wanting to give his for a long time…even though its doubtful his would be healthy enough. But thanks to him, I got this ball moving into the transplant court at last, starting with Tuesday’s evaluation and class.
Marisola gave a list of pros and cons to kidney and pancreas transplantation. The advantages were simple: Improved life expectance, increased energy, improved mental and physical well being, quality of life, and the biggie for us, dialysis is not required. The disadvantages made a longer list…among them, increased risk of cancer and infections due to immunosuppressive meds and a lowering of the body’s defense system. It didn’t take long for the truth to dawn on me that Vernon might not be a candidate because of his already compromised immune system.
But I kept taking notes anyway. We learned about what they look for in donors (and what would disqualify someone), we learned about the different centers that do transplant: that we can continue to try to get on shorter lists in other counties and states, if we want to pursue those tracks instead, we learned about the wait list (depending on one’s blood type, a 6-10 year wait, though it can be less, especially if one multi-lists or brings in their own donor), and we learned how donation does not change the life expectancy for the donor and they are only in the hospital for 2-3 days after surgery, but the recipient that will require multiple clinic visits and 7-10 different anti-rejection medications everyday for the rest of their life…in order to convince the body that the foreign organ is it’s own.
Marisola asked us to imagine getting a splinter in a finger, which at first seems just a small prick, but after some time passes, the area becomes red and painful, as the body tries to fight against this alien object. How much more does the body want to reject an organ that does not belong to it…but its on the inside and at first, you might not see or feel the effects? Though I had a growing understanding throughout the morning, this simple comparison made the risks strikingly clear.
(Interestingly, there was a lady in the room who was hoping to get her second kidney transplant after the one she got ten years ago failed. She also admitted she had stopped taking the medications. But I guess it was still worth it to her to try for another, regardless of the problems she’d had.)
Vernon was supposed to arrive at 1:00, via ambulance. When he didn’t show up, I called both the ambulance company and the dialysis center. It turned out that the drivers had taken Vernon all the way back home to be cleaned and changed. I was so frustrated again that they hadn’t consulted me, who had been prepared for this problem. But by then, it seemed pointless to have him driven back…our window with the doctor would now be shared with others, and from what I’d gathered, his wasn’t a hopeful case. Marisola was as helpful and encouraging as she could be, which I found comforting. She told me she’d have the doctor talk to me on the phone as soon as he could.
The next morning, he did call. He told me he had wanted to meet Vernon before talking more specifically, but that he too, thought it was a very high risk. He suggested more cutting-edge, aggressive transplant clinics that might be used to dealing with invalids. He also told me that risks were much higher for someone like Vernon than a normal, functioning adult. It was more of what I’d already been told, but I was touched that he took the time with me to explain in detail.
So I don’t have to give up on this. A kidney transplant is a possibility. It just doesn’t seem like the best possibility any more. This is something that is more likely to complicate and potentially shorten his life than extend it and give him better quality. Nothing has changed really, we will continue dialysis as we’ve been doing it, five days a week. Indefinitely.
We did come to the fork in the road, but both roads are equally disheartening and full of effort that outweighs the result.
I told Joe the news yesterday. He was disappointed, but he has been working out with the PT guys in the gym every day as he’s got his 100 Medi-care days after being so long in the hospital last week. They’ve had him standing more than once. He’s feeling strong and encouraged. I asked him if he’d be willing to move south, if we can find a nursing home closer to our house. He said he wouldn’t want to move in the middle of this. So that’s that. I won’t move Vernon without Joe. Perhaps we will revisit the idea later in the year.
Nothing has changed. Not really. Something in me changed though. I’m no longer crying…but I feel less hopeful about the future. I see it clearly as just keeping him alive but not actually getting him much better. And that is disappointing and depressing.