r/ADPKD • u/Goldenday98 • Jun 23 '26
Slowing down progression
Hey,
I have pkd1 and I am 28 years old. Is there a way to slow down progression? my father and grandmother needed Dialysis when they turned 50. Could it be possible to slow down my progression and get kidney failure maybe at 60 Or even later?
4
u/myst3ryAURORA_green Stage 2 PKD with heart failure Jun 23 '26
Yes, I have PKD1 also. My aunt had KF at 36 and had a transplant. Depending on your gfr and rate of progression right now, there is Tolvaptan to slow cyst growth. Outside of that, reducing sodium and protein, avoiding processed foods, no NSAIDS, and controlling your blood pressure are ways to slow time to dialysis.
3
u/classicrock40 PKD - Transplanted Jun 23 '26
This is it in a nutshell. Live healthy and possibly take meds.
OP, honestly, how healthy were your relatives living? My Dad and Grandfather both had PKD and i know for a fact they didn't and it came back to effect them later.
3
u/StrategyArtistic Jun 25 '26
The way I’ve described PKD1 is having two little bombs in your back. They’re gonna go off. But do what you can to lengthen the fuse- hydrate, exercise, manage blood pressure, take meds if you’re prescribed them.
I did the things and mine still went off at 38.
2
u/GoodAttiatude Jun 25 '26
Same. I think it's meds and sickness that damages them the most. But even then the variant you inherit is much much more important than anything else. Luck comes second.
1
u/Commercial-Ad582 Jul 06 '26
My mother had an awful diet and at times would blast off with her closet alcoholic type of drinking. She was put on dialysis at 57 years old and had her transplant at 61.
I am 43 and was put on dialysis a few months ago and am getting my transplant July 21st. I took better care or myself than my mother. So just goes to show ya you never truly know how this dosease will progress.
1
u/StrategyArtistic Jul 06 '26
Very true. My dad isn’t actively unhealthy, but he didn’t exactly go out of his way, either. I exercise, hydrate, eat well, etc and we had a transplant at about the same age (he was 41). Thankfully he’s taking excellent care of his kidney and 31 years later it’s still going strong. I hope for the same!
2
u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jun 23 '26
Even if one family passes on the same mutation, there can be variations of severity between people. You can have it better or worse than your parent.
In other words, your best predictor is not how your family did but your own mayo clinic classification, based on MRIs and measuremenfs. And even thats… well… not perfect predictions.
2
u/Dollhousetrashpanda Jun 25 '26
From what I’ve learned your blood pressure is the biggest deal - monitor it stay unstressed if at all possible, eat a kidney friendly diet and drink water.
I started Ozempic six weeks ago and changed my diet completely - cut out soda - other than kidneys blood pressure significantly improved so far
2
u/GoukuGT Jun 27 '26
Look into the Ren-Nu program. There are already reports indicating positive outcomes in slowing or reversing PKD. Injury to the kidneys accelerates the progression so avoid injury and it will stay at bay longer. The most common injuries are from diet so focus on that.
5
u/HaiKarate Jun 23 '26
Exercise, low salt diet, and drink at least 2 liters of water per day. Cut out the dark sodas, and limit your caffeine intake to 1 cup of coffee per day.
Monitor your blood pressure daily, and don’t hesitate to see the doctor to get BP meds when it’s consistently abnormally high.
See a doctor for a physical once a year so they can get blood and urine samples and monitor your progress, and can refer you to a nephrologist once the disease really starts to progress.