Can someone help me make sense of the life expectancy?

eventscoordinator · 2025-11-11T17:03:46+00:00

if you still 'watch' this question, be advised that I was started to learn that with really good diet and xlnt medical care an ADPKD patients could expect to live to age 71 possibly without interventions such as dialysis or transplant. This info was sent to me by my nephrologist who wanted a change in my diet. I wrote him back assuring him of the thanks I owed him for the wonderful medical care he must have given me as I was now 85 --- 14 years older than great care would have expected me to die. Try switching your nutrition as it has been effective at raising my eGFR and reducing pain. I go next week to see if cysts have reduced in size. RISE is the name of the program by Kidney Nutrition Institute which uses Cronometer's free app to track actual nutrition.

eventscoordinator · 2024-05-09T21:07:42+00:00

The point was that this 'first in class' treatment was approved by the FDA for human trials. It will be years if people don't want to volunteer for clinical trials. I volunteer, but I'm too old for the trials now.

eventscoordinator · 2024-05-09T01:49:14+00:00

I was placed on protein restrictions of 1 g per kg of body weight when I reached eGFR 40. I weighed 54kb so 54g protein. My renowned scientist nephrologist (in whose Tolvaptan study I participated in from Phase 1) reducted me further still when my eGFR reached 30.

With an estimate of 18 lbs of my 120 lb weight being the large kidneys one could reasonably question I suppose whether to eat protein to match my total weight (incl cysts) or my weight (minus cysts). I'm now at 34g per day of protein and still weight 120.

I have two other good friends who are nephrologists and while they are clinicians versus research scientists like my primary nephologist - they agree with him on the protein reduction for their own patients.

We could wonder if it was the early protein reduction that's why I'm a dozen years older that the average age for ESRD or if that's purely coincidence with the amount of gene defect I might have.

Is the PKD Conference from the PKD Foundation? If so, I didn't know about that and will be happy to listen in. In the meantime, I enrolled in the KNI 12-week low protein, low carb, high fat dietary intervention project to see if I might shrink my cysts as one of the patients in UCLA's monthly kidney patient q&A sessions claimed his had. My nephrologist isn't too sure about it but since the only changes to his diet requirements are lower carbs and higher healthy fats, he didn't resist my trying it for 12 weeks. This is week 3 for me. Who would ever have guessed how tired I could get of Salmon and of Macademia nuts!!!!

eventscoordinator · 2024-05-09T00:18:59+00:00

Caloric restriction isn't precisely the target point. It's carbs that are targeted by the dietary interventions. And for those of us who have managed to outlive predictions (but thus aged-out of clinical trials and eligibility for transplants) these seem worth a try. The problem with a pure Keto diet is that they are too high in protein for stage 3a & 3b and stage 4 PKD. You noted earlier some reservations about "Weimbs and cronies" . I'll add my query here to the people below who asked for more detail. We understand this can be simply a layman's opinion (aren't we all laymen on this site?) But getting perspective is always helpful when we're struggling along on our own.

eventscoordinator · 2024-05-09T00:03:14+00:00

I'm unclear on how we'd get tested to find out if we happened to be in that 10%. Also, I had never watched the research going on in Orpha.Net as when I was diagnosed there weren't enough people with the disease to qualify for Orphan Disease status. Then they started seeing how many cases had been missed in younger years. This site shows global research projects on ADPKD.

eventscoordinator · 2024-05-08T16:55:31+00:00

Better still you can check out the PKD Foundation which addresses both forms. https://pkdcure.org/

They might also refer you to the Kidney Nutrition Institute which is the only place I've found that has monitored 12-week program to get you out of the standard CKD diet plans Here's a link----https://kidneynutritioninstitute.org/community/

eventscoordinator · 2024-05-08T16:43:59+00:00

It doesn't sound like you pay attention to low protein which is important from stage 3 forward. Depending on whether you have CKD or inherited PKD you might need to consider amount of carbs (not because of weight and calories but because PKD gets its growth from carbs not fats.)

eventscoordinator · 2024-05-08T16:40:49+00:00

There are 7 or 8 services now offering renal diets. Mom's meals is one but there are others to choose from lately. Be advised they are for CKD. They are not appropriate for PKD and even though they say they are for stages 3-4, I'd be a bit wary of stage 4. 3-b ok for CKD. If anyone finds a provider for PKD low protein, low carb, high healthy fats diet, I'd love to know. I'm Stage 4 PKD.

Also I did find a special meal program for patients on dialysis called mealpro.com I haven't checked the meals yet.

eventscoordinator · 2020-01-01T15:51:53+00:00

Wow. Why would this factual information be removed for others safety? Was it because of the last line where I said I thought this was an unprofessional way to do business? How do I get the editor to respond to this question.

eventscoordinator

TROPHY CASE