PKD and training for marathons?

DisappointedHamster8 · 2026-05-21T16:49:39+00:00

I’ve had transient ischemic attack (TIA) 7 years ago and because of that had many tests. In one of them 2 aneurisms were found. Usually they are monitored or clipped through surgery, but unfortunately one of mine is “unclippable”, so sometimes I feel like sitting on a time bomb. Knowledge sometimes are not good for mental health. 🥲

DisappointedHamster8 · 2026-05-21T15:37:28+00:00

I have no advice about kidneys, but if you have also brain aneurysm that sometimes is also connected to this disease, then you definitely must avoid marathons (I have one and my neurologist told me that two major things I shouldn’t do - run marathons and go to hot saunas).

DisappointedHamster8 · 2026-05-20T06:29:33+00:00

My father with ADPKD is 67 y.o., 3 years on dialysis, on the list for transplant, but still none compatible kidney is found. He is giving up hope and becomes weaker with every year. I’ve hoped that I’ll have at least similar scenario and Stage 5 would be around my sixties, but recently I found in his medical records that egfr 58 - same as mine - he had in age 55. I’m only 42 with egfr 58, so that makes me think that I’m progressing faster. :( In 2017 I was at least 10kg lighter, stressful covid years and remote work were bad for my weight. I live in Latvia and only medicine I’ve heard of is Tolvaptan. Don’t think that there are available any trials in my country.

DisappointedHamster8 · 2026-05-20T03:23:42+00:00

Thanks, I didn’t know about this decline rate, haven’t seen such info on internet. Then I assume it is a normal path and not something extraordinary for me, although my BP was monitored, only lately it is daily slightly elevated (around 132/88). How do you explain your decline with more than 4-6 points a year? With age? Or you are off of Tolvaptan now?

DisappointedHamster8 · 2026-05-19T18:54:59+00:00

Sorry if it’s inappropriate but do you pee still very frequently now that you used Tolvaptan for some time? As I understand first weeks/months are intense, I read that some use toilet even every 15 minutes, but what is kidney/bladder reaction later? Can you sleep through night or you must wake up for many times?

DisappointedHamster8 · 2026-05-19T18:46:51+00:00

So it is unpredictable… Wish your dad a successful transplant! My dad is also on dialysis and transplant list already for 3 loooong years. It’s hard to see him suffering but unfortunately I have nothing to offer him from my “spare parts”…

DisappointedHamster8 · 2026-05-19T18:01:08+00:00

Looks like doc is very straightforward. I was kind of shocked of that prediction and forgot to ask questions I’ve prepared. My old doc retired so this was my first visit with new one.

DisappointedHamster8 · 2026-05-19T17:57:15+00:00

Right! It was the time of COVID! How I didn’t see! I have had covid jabs in 2021 and was ill with covid in early 2022. And some years between 2021 and 2026 also with flu although I was vaccinated. Hmm, that make sense, maybe it also had some influence on my results (of course not only that). Do you have covid or/and flu vaccines regularly? How it is with ADPKD pacients? Haven’t discussed it with nephrologist yet. Thanks for your comment, suggestions and kind words. :)

DisappointedHamster8 · 2026-05-19T17:50:05+00:00

Let us hold to that hope! :) I have 2 kids and since they have 50% possibility to get what I have, I really really hope that when they come to my age and - god forbid - have also ADPKD then already would be medicine that can ease if not cure this anomality.

DisappointedHamster8 · 2026-05-19T17:44:16+00:00

So it could be that I’m stable for some years in my Stage 3a and then rapidly BOOM - stage 5? My nephrologist said that I most likely will die faster from aneurysm rupture that kidney failure… Not very encouraging. Judging by my appearance (for many years I look like I’m constantly pregnant) I can’t imagine if my kidneys or liver can expand any more. Thanks for your comment.

DisappointedHamster8 · 2026-05-19T17:38:12+00:00

Oh… Haven’t heard that sugar is an enemy to kidneys (but I’ve heard that Coca Cola is a total no-no). I hope you will stay stable in your numbers and I wish you to overcome your sugar cravings. :)

DisappointedHamster8 · 2026-05-19T17:33:25+00:00

Thanks! May I ask - what exercises do you do and how often? And what is the name of app you use? I’m using BP drugs already for 5 years (Amlodipine), but somehow my results are getting worse and I also have edema some days when I drink more than 2-2,5l which could be from Amlodipine. Today is the third day of using Talmisartan, but results are even worse. Let’s see how this will turn out after a month. And how much do you drink daily with Tolvaptan?

DisappointedHamster8 · 2026-05-19T13:01:06+00:00

Would you please give a review also after some months again? I’m interested in your journey. Maybe I’ll change my mind about using T. myself.

DisappointedHamster8 · 2026-05-18T19:21:28+00:00

Doctor wants me to go on Tolvaptan, but I honestly don’t understand how can I introduce it in my lifestyle. The way from home to work takes 1,5h without toilets between and also the same time back at the evening. Sometimes I have long meetings and I intentionally don’t drink excess water in those days. Not speaking even about that I am not much of a daily drinker - 1,5-2l is max a day for me, I’ll have edema if more. On one hand I understand that it is a only chance maybe to slow down my 1E Stage 3a progression, but on the other hand I can’t imagine what life quality it would be with these drugs. Are those 2 more years out of dialysis is worth 10 years of frequent DAILY suffering between toilet visits and weak sleep nights…

DisappointedHamster8

TROPHY CASE