I’m discovering that so many things we’ve faced in real life lately have had zero relate-ability in my real life prior to this. Things like kidney failure and dialysis and transplant. We all know the words. We all know these things happen… but to whom? Not to anyone I knew. And in talking to so many people, nobody they knew either. Very occasionally I would meet someone who had an aging relative who had gone somewhere for dialysis. And there have actually been 2 people (one that Mike knows; one that I know) who have dealt with double transplants (simultaneously failing kidney and liver) just recently.
But by and large these seem to be foreign ideas. Something that happens to other people, somewhere else. Nobody had ever seen someone receiving dialysis, hooked up to a machine. If I talk about our dialysis sessions, I have to short hand the description of the process to most people, not because they’re too dumb to understand, but because it’s mind numbingly boring and detailed… and icky. And not really good lunch or poolside conversation: see there’s a machine and masks and there are these really big needles, and… stop, stop right there. Like so much of the journey with Michael I find myself feeling like I’m speaking a foreign language to people and it’s easier to switch topics rather than bore them with an unwanted lesson. Right now they’re biology lessons; previously they were special ed or IEP lessons.
Our current new Thing is the transplant application process. Part 2. As I’ve mentioned we applied to Baylor about 2 years ago, before we started dialysis, and they turned him down. Said they wouldn’t perform the surgery on him.
So now we’re at UT Southwestern applying to get on their transplant list. Prior to us going through this process, my base of knowledge for transplants probably best came from TV and movies. On the screen, either a reeeeally sick kid needed a transplant and was lucky enough (if a donor dying in a car accident can truly ever be considered lucky) to get a timely match, or someone was suddenly stricken with kidney failure and had a buddy with just the right kidney to hand over. Boom, all better.
And I think that’s where most of us fall in the Transplant Application Knowledge Department: You have kidney? I need kidney. Doctor, put in kidney. Roll credits.
What we have found out is that the process for transplant is much more complex than that. And even more complex for a patient like Michael. Every person that wants a working kidney to replace their failing or missing kidneys has to be approved by a hospital transplant committee before they get put on the list. A committee decides whether you can go on the list to receive a kidney. A committee decides whether a person can have the surgery. It’s not enough that the patient has a non-working organ and needs a functioning one. They have to run through a gamut of tests. They say it’s to make sure the body doesn’t have any other issues that would make it any more inhospitable to a new organ than a body already defaults to. But to me it feels like they are having to prove they’re worth the new kidney.
And it’s a many layered process. There is a paper application to complete, outlining your medical history, including all past medical conditions, all potentially harmful habits, and all genetic factors. Your height and weight are checked. You have to meet with various doctors to talk about the risks involved with the surgery, and what to expect after the surgery–the many doctor appointments you will have to attend, the types of medications you will be required to take for the rest of your life, the changes to your lifestyle that you will be expected to adhere to. You have to visit with a social worker to ascertain what your support system is like. You have to submit your income and your medical insurance information. There are medical tests that must be performed and passed including an MRI, a CT Scan, an echo cardiogram, an EKG, a 6 minute walking stress test, and so much lab work to check for so many things that they will draw 25 (count ’em 25) vials of blood.
Any number of things can toss you off during the application process, which is why not everyone is approved by the selection committee. Even if you have a living donor all lined up they can still deny you the necessary surgery. Many people are told “No, you are not a candidate for transplant” and at that point, the applicant will have to continue on dialysis forever… or as “forever” as they have before something gives out and they die. And there are some people who refuse to go on dialysis, or refuse to continue dialysis, and they will die, sooner than later, from kidney failure complications. Because, while dialysis is a life extending and life saving measure, it is fraught with a long list of negatives. The short list: it’s tiring, it can be painful, and it never fully replaces the miraculous function of a healthy, undamaged kidney.
For a patient like Michael, with a more complex medical history than most, the hurdles to get over to be on the transplant list are higher and more numerous. His current medication regimen has to be reviewed to make sure it’s compatible with the post transplant rejection medication regimen. Can’t have the regimens fighting each other. His seizure disorder was a flag, and we had to meet with the staff neurologist, not something every potential candidate has to do. We need an additional MRI on his brain (cuz one just wasn’t enough!) to assess future potential malignancies. His low weight has been a concern this time around, just as it was when we applied at Baylor.
They want to know that he, like any other applicant, is as healthy as can be (other than the pesky damaged organ that needs to be replaced, of course) to reduce the risk of the body rejecting the new organ. I get that. I understand the importance of wanting the best housing for the donated organ. I understand that these organs are scarce and fragile and precious. The wait list for a Cadaver Organ is 3-5 years, which tells you how scarce they truly are. It just feels that, as with so much with Michael, things are harder and less forgiving, even within a process that’s difficult in its own right. You’d think I’d be used to this feeling by now.
But we plod onward, holding onto hope that this hospital network will be able to work around all of the obstacles. That they will see that we are as willing as ever to continue to care for and support Michael, to give him the highest quality of life possible.
I’ll keep you posted…..