GFR 19. late stage 4 polycystic kidney disease.

@tiffanya365 Welcome to Mayo Clinic Connect. Generally, dialysis is started when eGFR is about 10. Sometimes it is greater, but a lot depends on how an individual is feeling. In my case, my eGFR was 14, and my co-morbidity is multiple myeloma. I was feeling poorly, was already in treatment for the myeloma, so we decided to go ahead and start dialysis. For me, PD dialysis was the right move, and I have been on it since Sept 2022. How are you feeling?

Once you reach eGFR of 20, you can become eligible to be considered for transplant. Have you been able to connect with a transplant center to get started on the process, yet?

Having a good medical team who will support you and answer your questions, is very important. Has your team given you specific details? How has your eGFR been doing, as far as dropping?
Ginger

Hello TIffany356, This is my 2nd time writing on this support group blog (not sure what to call it). I've been using since May 2019 "Healthunlocked and chose kidney transplant". This group is out of England and vetted. Just letting you know of another location to seek answers from people who received a kidney transplant or the person who lives with them. My spouse of over 40 yrs received his kidney transplant at age 59 due to PKD (genetic from his mom). He was at GFR 13 when he was receiving his kidney from a deceased donor. He received this organ 6 yrs ago later this month and he is still waiting to feel like he's having a good day. He never was on dialysis and due to his blood chemistry and how he felt below 19 GFR it was not pushed to happen. Everyone is very different. My point is, for some people receiving a transplant is wonderful after the first 6-18 months of your body getting used to it. I wish our transplant center had told us alot more details that some people have major problems with the antirejection medications and never do feel good being on them no matter how often they are changed in dose or brand. We just saw our transplant Dr this week and let her know how disappointed we are at this point of close to 6 yrs and not able to go do things as we planned in life. THe quality of life is not there 'still' for my husband despite the organ is functioning well "finally". THe first 14 months he had so many serious problems resulting in severe fatigue and other problems. He never got over all the problems. I am so happy when people who do receive a kidney and immediately or in 6-18 months resume their life and fully enjoy it. We are still waiting and most likely it won't happen for my husband and the transplant Dr said she hears this story from others too. They don't know how to screen for everything pre wait list if you will do ok on the antirejection meds or not. I find that these forums spend little time about how things don't work out after the transplant. I think waiting 6 yrs to feel good for a day sure is a lot of patience to wait. I wish you all the best on your decisions on your PKD health.

Well, my nephrologist and I decided to go ahead and get the PD Cath placed which was done on Oct 14. From there dialysis reached out and I've been going over for flushes and was set to start the training this Monday. Wednesday tho all of my supplies were delivered to my place. But in a conversation with the nurse there I had stated my GFR was only at 19 and how my labs aren't all wonky yet as we were talking about the different percentages of fluid bags. So then I received a call last night telling me we had to hold off. My cycler has already been delivered to the dialysis center also. My nephrology has already discharged me from his care as I was suppose to start seeing the one at the center.
My other diagnosis is congestive heart failure; which is in an early stage. I do not retain fluid as of yet either. But I do have a harder time controlling my blood pressures even though I'm maxed out on Lisinopril.
As far as transplant, I am going to their center the beginning of next month to do the health evaluations to finalize getting on the list.

@tiffany365 I started dialysis at eGFR of 14. In my own personal opinion, it should start when a person is ready, and not be guided by a "magic number". You didn't mention who told you to hold off on the training. Perhaps you can reach out to you nephrologist and explain the confusing situation you are in?

For many people, chronic kidney disease, no matter the underlying cause, can be a sneaky beast. We don't realize how it affects us, and the way it makes us feel, because our bodies learn to adapt to the changing condition. It is not until we start treatment that we understand how much better we can feel!
Ginger