New here!

[heynaomiii]

Hello! I’m Naomi, 24 in London, diagnosed with PKD not long ago and trying to learn to live with it and how to advocate for myself. Glad to be here 😌

[Spaceace]

Hello and welcome, My limited experience with apkd has taught me to keep in close contact with my renal unit.

Also keep a close eye on blood pressure and do what you can to stay healthy.

I'm fortunate to live a fairly normal life so far.

Stay well, keep calm.

[RonZone]

Hi, I just found this group. I've had PKD all my life (inherited). Been seeing a kidney doc for 12 years on the referral of my Primary Care Doc. I really didn't have any "symptoms" until January 2020 when I was told my eGFR was like 13. It was down to 9.6 this past September. I'm supposed to see my kidney doc tomorrow to see what the labs I did last week look like. Looks like I'll probably be starting dialysis this coming year. My mom had it but didn't have major issues up until she died at age 84. All of her brother's and sister had it. All had kidney transplants. Some went well, lasting 18 years, others didn't last that long. I'm still not sure I want to go the transplant route at age 69. Guess I'll be having that discussion with my doc tomorrow.

So I hope that this note gives you some encouragement that at 24, you most likely have many, many, many years to go before you will need to address dialysis or transplant, but it's all based on the numbers from your labs the Nephrologist (Kidney doc) get's you to do.

I was able to delay dialysis (I'm going to do the PD variety) for the last two years by changing my diet. My doc never suggested I do that, but I found friends on the general Kidney Disease forum on Health Unlocked that gave me lots of tips on how to reduce salt, potassium, and phosphorus from my diet. Those are the three big no-no's for kidney disease folks. Some people have gone to a fully plant based diet, but I haven't gone that far. Still eat some chicken, turkey and fish, but no red meat which is hard on kidneys I found out. I'll be happy to look up some of their sources of information to give you if you are interested in all that. You have plenty of time to make these adjustments over the years, not two years like I had. With some adjustments along the way, you can slow the progression down, hopefully. There's also a new medication available for folks in the early stages that I was not eligible for at stage 5.

Write when you can. Hopefully this site will send you my message and I'll receive yours.

----r-o-n-----

[Christine501]

Hi, I inherited my PKD, and have lived with it for nearly 40 years since it was confirmed. Initially I was told to just live my life and not worry about it, so I did. How I wish now I had been advised to keep a check on my diet, and avoid things like salt. You are right to seek to inform yourself, and this group is a good place to come for advice and support. I had my Kidney Transplant last year after a period of PD, and despite a tricky year, my life is so much better. One thing I would suggest is that you see whether it is possible to join NHS Patient View. This documents all your blood results, Hospital letters and more. I have been on this for 10 years, and have adjusted my diet many times as a result of reading my results - especially Sodium, Potassium, and Phosphate. By understanding what affects your Kidneys, you are in a better position to discuss things with your Nephrologist. Best wishes.