We got the call yesterday.
“It’s UT Southwest, It’s UT Southwest! Answer it!” Riley screamed, running down the stairs after seeing the Caller ID post flash on the TV screen. I didn’t correct her pronunciation because Mike had already picked up the phone and was listening to our transplant case coordinator telling him the details of the transplant committee meeting. We had gotten a call the previous Tuesday telling us that the main doctor who was to have presented Michael’s case to the committee that day had been called away on an emergency, so the presentation had been postponed to this week. Part of me wondered if this was yet again another “The news is we have actually no news” phone calls.
But he was still listening, mmm-hmmmm’ing, nodding… and after a few moments he turned to give us a Thumbs Up while still continuing to listen. Riley broke into a big smile. But again, part of me hesitated… and wondered if the Thumbs Up was THE Thumbs Up or just a “it’s not a Yes but it’s not a No so we’re still in this” kind of thumbs up.
Those of you who know me will not be surprised at my reticence. Life has not always been kind to us in moments like this, Baylor-Who-Rejected-Us had not been kind to us in an exact moment like this, and my guard is always up… my inner Eeyore sighing and bemoaning.
But it turned out that it really WAS a They Said Yes Thumbs Up. Michael was officially being put on the Kidney Transplant List. They were saying Yes to Michael. They were seeing past the disabilities, the low weight, the seizures, and his being non verbal. Seeing him as we see him. As him being deserving of a transplant. And of us being capable of helping him through the process.
There is still one caveat… because, life. At this point he’s a Status 7 patient. That means he has an outlying medical concern that must be addressed before he can officially receive the transplant. But since it’s one that they know will be taken care of, he can stay on the list and work his way up the ladder of waiting.
To change him from a Status 7 to a Status 1, he must have a nephrectomy to remove his existing kidneys. Apparently in a standard transplant, they insert the donated kidney and hook it up into the existing plumbing, while leaving the 2 original kidneys in place. They just tuck the new kidney into the front of the abdomen, and don’t mess with the back side of the body where the original kidneys are. They do this because 1) it’s less complicated in terms of invasiveness and recovery time and 2) sometimes the existing kidneys are semi functional so they are left to be helper kidneys in whatever capacity they can be.
Michael’s kidneys are full of benign cysts. The concern is that down the road those kidneys could become malignant. Bodies being what they are, any compromised areas are more susceptible to cancer, especially when introduced to anti-rejection medications. So they’d like us to have those kidneys removed, and then we’ll do the transplant after he fully recovers from that surgery.
Setting up this time frame will be kind of tricky. While his kidneys are not removing waste from his body and are relying on the dialysis machine for that, they are still producing some urine which helps keep him from being bloated and retaining fluids. Once we remove his existing kidneys, we’ll have to adjust the machine to remove all of the excess fluid in his system. Odds are we’ll be doing longer and more frequent dialysis sessions in order to accomplish this.
And again, while we are very proficient at performing dialysis, it is not something we look forward to doing and not something we relish doing even more of. Our goal is to get him a functioning kidney and come off of dialysis. But it looks as though part of the interim time might be fairly dialysis-intensive.
We know we have some time to get this done, because the wait time for a “cadaver kidney” (their term) is either 3-5 years, or 4-7 years, depending on which publication you read. None of that is a feel good kind of read. The wait time for a living donor is non existent. You set your own timetable. But there are a lot of steps for the prospective donor to go through before being considered a match.
This morning I got online and filled out my application to be a kidney donor for Michael. I’d have done it right after the phone call yesterday, but we were on our way out the door for a Rangers game (they won 10-4, woo hoo) and I knew that 18 hours wasn’t going to matter in the grand scheme of all of this.
I answered questions about my height, weight, medical history, and personal habits. I was a No to all of the “bad habits” questions. Clean living has its advantages sometimes, even if you don’t have as many great stories to tell. But maybe this will be my great story to tell. I’d like to hope it starts with me and ends with me.
Be quiet, inner Eeyore.