New here curios and confused lol

[Chappy1708]

Hi my name is Rick I was diagnosed with adpkd on 5th jan 2022 I have never had any cases of pkd in my family before me and only discovered I had it while investigating high blood pressure I’m 38 and bar the blood pressure have had no symptoms until now , I constantly have to p during the night and am having terrible sleep also have slight puffiness around the eyes amd ankles also am very tired around mid afternoon is this normal or is it a sign of the disease worsening quite quickly ? Any time I google anything to do with it ur either grand or dying no in between , so just thought I’d ask some experts as I’ve no idea when my next appointment is goina be as I’ve heard nothing since my original appointment when I was there I didn’t get any figures other than I have 3 cysts in one kidney 4 in the other ranging from 1cm to the largest being 4cm ,kidneys are approx 14cm and my blood tests are apparently normal for someone of my age the only meds I’m on is amlodipine for blood pressure

[Alfredmynewkidney]

Hi Chappy. This definitely runs in my family. How did they diagnose you? You have very few cysts. Some cysts can be normal. My kidney were pretty much covered by 26. How is your lab work? How you are feeling could be part of it. My symptoms weren't bad until my kidney function was really bad. I had a transplant at age 53. My creatinine was 5.4. I was not yet on dialysis but was very close. This disease has so many variables. But unfortunately it is very common.

[Chappy1708 in reply to Alfredmynewkidney]

Hi thanks for the reply , I had an ultrasound done I’m waiting on an MRI but they said I would have another appointment within a months time as there would be too much info to take in all at once so I guess I’m trying to figure out what I need to keep an eye on and what questions I need to ask when I get my next appointment

[Alfredmynewkidney in reply to Chappy1708]

Mostly at least for me. It was keeping my blood pressure under control and monitoring my labs. My labs were yearly then every 6 months and then progressed to every month once I was on the transplant list. PKD can be very different in each person. Some never need dialysis and some need it in their 40s. It's crazy how different it can be. It is considered a genetic disease but can be a mutation. Mine is genetic as my dad and his father had it. It is dominant so if 1 parent has it there is a 50% chance of passing it on. Maybe 1 of your parents had/ have it. But could be ones that the disease is not an issue so they never knew. Crazier things have happened. Good luck with your appointments. Feel free to message me as my family has a long history of ADPKD

[YasmeenK]

In the beginning depending on blood work, you'll get seen once a year... its where they keep an eye on the levels and monitor the kidney condition. It's when conditions worsen that they move you up the ladder and you get seen by a different nephrology team.

High Blood pressure is not good for Kidneys so its good they got you on HBP meds.

Advice... drink 3-4 litres of water daily.... make it a habit. It's your saving grace.

Stop alcohol or have it sparingly.

You could ask if you are eligible for Tolvaptan

And ask what you can do to slow down any possible deterioration to your kidneys and they'll guide you.

I hope this helps

[bakun8]

Ditto: low salt/keep BP ~120/60; modify diet within reason.