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How does GFR move up and down so dramatically?

Kidney & Bladder | Last Active: 1 hour ago | Replies (17)
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@mrainne

I'm guessing that's what Dr. Dahl will determine this month. I'm not sure my GFR is low enough to go on the transplant list, but as you say, PKD is not going to get better. My hope is that I will go on the list and that my kidney function GFR stays above 15 for...maybe 5 years? I'm probably being overly optimistic. The last thing anyone would want is an emergency situation.

I read stories on Google about people who had no idea their kidneys were failing until the last minute. Then it becomes do or die. In a weird way, I feel fortunate my GFR started gradually decreasing and my docs were alerted and finally I was diagnosed with PKD and nephrogenic diabetes insipidus. Since there are no symptoms, some may happily go along in life with no clue of kidney disease.

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Replies to "I'm guessing that's what Dr. Dahl will determine this month. I'm not sure my GFR is..."
Ginger, Volunteer Mentor | @gingerw | Jun 5, 2023

@mrainne Our bodies are a miracle machine. How so many different systems work together everyday is astounding! We learn to adapt to slow changes, not realizing something might be wrong. That often is the story with kidney disease, as it often comes on very slowly. It is not until we start to get treatment that we understand or realize that we haven't felt 100% for a while [sometimes a long time!].

I know many people who have started the search for a living kidney donor before they are officially qualified to be listed. 20% eGFR is the magic number to get listed on the transplant list. But getting a preemptive transplant can happen before that level. There is a lot to do to be active on the transplant list, physical/mental/lifestyle evaluations to be done. Have you considered looking for a living donor?
Ginger

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