I was 26 when I was diagnosed with polycystic kidney disease. I'd known my mom had it. She called from Georgia to tell me she'd had a transplant, it was successful, and that her nephrologist advised that her kids get tested for it because it is caused by a dominant gene. The Air Force tested me using an Intravenous Pyelogram (IVP), and it was clear that I had cysts on my kidneys. So we've basically been monitoring a slow, steady decline in my kidney function ever since. I have now reached the point at which my nephrologist recommends that I try to get a transplant before I reach the point of needing dialysis.
I've had a few people volunteer as potential donors. To protect their privacy I will be cautious about how I talk about them. The first to be identified as a possible match went for evaluation earlier in the month. They determined that this individual was at long-term risk for diabetes, so they will not approve them as a donor. The team indicated to this individual that there were at least a couple other potential donors who had signed up.
Meanwhile, I am being evaluated as a transplant recipient. As a result of my initial tests, the transplant team has referred me to two specialists. Due to an irregularity in my stress test, they referred me to a cardiologist, indicating that when he cleared me we could proceed. I've met with him twice. He indicated that my strong heart functionality outside of this test led him to believe that, for now, we should just keep an eye on things, monitoring my heart functionality over time and taking further action when there is some other indication of a problem. He indicated that he would approve me for the transplant, but prepared me that the transplant team might nonetheless want a more definitive test before accepting his recommendation. The transplant team has since indicated that they will not approve me without my having first undergone a heart catheterization procedure to make sure there isn't a blockage to be addressed. This procedure requires dye or contrast that will need to be cleared through my compromised kidneys, but my local nephrologist will issue pre- and post hydration orders that will help with that.
The second specialist they've had me see is a neurosurgeon. PKD is associated with increased risk of aneurysms, and the MRA they did in my evaluation testing showed a spot they were concerned about. I expected this because of an issue shown on a previous MRA that was subsequently definitively determined not to be an aneurysm. I've met with the neurosurgeon, and he is confident that the area they are concerned about is also not an aneurysm, but rather an irregular but non-concerning deviation in the junction of a couple blood vessels. I'm still awaiting clearance on that.
Meanwhile we continue to monitor my kidney function to make sure I'm not seeing enough of a reduction to need to start dialysis, while the transplant team continues to evaluate my remaining potential donors, either as direct matches for me or for the donor swap program.
I appreciate your continued prayers and support. Part of the reason I'm posting this update today is that Easter seems an appropriate time to mention that I am not afraid of what lies ahead. I am confident in the One who holds both me and those whom I love.
I will post periodic updates.
No comments:
Post a Comment