I'm Just the Wife

This is a two-hour class required by the hospital for all transplant recipients and their primary support person. A transplant coordinator once again gave an overview of the process, the pharmacist went into great detail about the post transplant medication and regimen, and the importance of following their directions, and the living donor coordinator presented as well. They closed the class with a lot of information about life post-transplant. It's just a lot of information and no two patients are alike. They can talk about "in most cases," for "most people," but until you've been transplanted, there is no way to know what your experience will be. They stressed the importance of being available at all times for a kidney while you're on the list. The coordinator relayed a situation that happened just a few weeks ago - three kidneys were available at the same time and she couldn't get a hold of anyone to accept them. People weren't answering...

We received a letter today from the hospital stating that all testing was complete, that my husband's case had been presented to the team, and he is officially on the list for a transplant. This is the necessary next step in our journey, but it is daunting to say the least.

My husband went in for a repeat MRA and a chest x-ray, and he met with the neurologist immediately following the MRA. An MRA is an MRI without the dye. The dye can cause kidney damage so it's not an option for him. The problem with an MRA is clarity - an MRI is much clearer. The doctor is not sure if he has an aneurysm or an infundibulum behind his left eye. He will have a repeat test in 6 months to check artery stability, and in the meantime was schooled on all the symptoms of a burst aneurysm. I can't imagine what it feels like to be him, but for my part, I feel like I'm living with a ticking time bomb. The good news is whatever this "outpouching" is will not prevent him from being officially listed for a transplant. No one met with him to discuss the results of the chest x-ray, but we are hoping his nephrologist has those results on Tuesday at his next appointment, and that this turns out to be "nothing." There's a 60% chance he'll recei...

It was with great trepidation that I turned the calendar to 2020. We have no idea what is in store for this year. His case was presented to the transplant team, and two things came up: an outpouching on a carotid artery a nodule on a vessel in his lung Further testing is required, and then a determination will be made for transplant eligibility. 

There are two or three outstanding tests that have be done to determine transplant eligibility. He had those done today. Now, we wait.

I went to this appointment. The nephrologist confirmed only 15% kidney function. Someone from the transplant team will be calling within the next week or so to set up an evaluation. We chose Allegheny General for the surgery, when it comes to that. For now, the nephrologist feels that dialysis can be put off. We return in December to re-evaluate, sooner if necessary. Another bit of good news is that his numbers stayed exactly the same from September. Additionally, the swelling he was exhibiting has completely gone away, thanks to switching to a low salt diet. After this appointment, I felt like we can take on the world. I can only hope that feeling lasts.

I've lost 6lbs in the last 6 days. We already changed up our diet to one of no salt/low salt. I feel better physically, but it has come at a price. Mentally and emotionally I'm still all over the map. For his part, I don't even know if he even thinks about his disease. For him it's life as usual. He doesn't want to talk about, which I can appreciate, but I have so many questions. I followed a few online PKD groups / support groups, and then I had to unfollow them. It's just too much information right now, too much bad stuff when at home nothing has changed. Mostly I ponder the meaning of life. What is the point of all this? Why Why Why?