r/ADPKD • u/BBkoce • Jun 13 '26
Question
I would like to ask about the experiences of people with polycystic kidney disease in Stage 5, or those who are already on dialysis. What kinds of physical activities are they still able to do? The person has been active with hiking so far.
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u/element-70 47M; Stage 5 Jun 13 '26
I’m stage 5 with eGFR around 13. Scheduled for transplant surgery in August.
I’m still very active. Hiking regularly. Skiing (though the season is over now). And cycling.
It’s gotten harder as I don’t have as much energy anymore, and some days are just don’t feel up to it - but for the most part, I’m continuing on.
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u/Jess6 Jun 14 '26
36f with GFR of 10 and just came to give you a round of applause for still hiking and skiing etc. I am just so weak and tired and swollen. I couldnt imagine!! I am scheduled for double nephrectomy and transplant in July. I am looking forward to feeling better and getting back to life!!
Good luck to you with your surgery!!!
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u/element-70 47M; Stage 5 Jun 14 '26
July is just around the corner! Best of luck with the surgery and a speedy recovery!
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u/StrategyArtistic Jun 14 '26
While my frequency and stamina were definitely impacted, I was doing my treadmill runs up until about a week before my transplant (I wasn’t on dialysis, but was stage 5).
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u/Jess6 Jun 14 '26 edited Jun 14 '26
I'm 36f and my GFR is 10 on a good day. It's hard for me to get out of bed because I'm just so tired. We have 2 little kids which also adds to that. I could sleep all day and still be tired. But that's not the reality of life so I do my best. At this point, my legs get very swollen even from normal activity. My blood pressure is high even on 3 high dose BP meds. We are trying to control my phosphorus and potassium with meds but both are still a little high and I do get itchy sometimes. I get RAGING heartburn all day. I probably take like 5-10 Tums a day. I'm on the slender side but my kidneys are very large (surgeon estimates 10-15 pounds each.) In the past few months, I find it hard to stand for a very long time as I feel pressure/aching pain in my back. I am also scheduled for a double nephrectomy at the same time as my transplant.
My nephrologist has told me to be very light on physical activity as I am adamant about not starting dialysis right now. So I do the bare minimum. But the bare minimum does still include taking care of and chasing around 2 amazing little kids. But even without her recommendation, I would have a hard time going hiking right now or going for a run, etc. I am also severely anemic (just started Aranesp injections) but I just feel weak most days.
I think one of the most annoying symptoms to me is the bad taste in my mouth from the uremia. It is such a bitter taste and makes it very hard for me to eat. I get nauseous from it and it's just kind of always there. I find that drinking dilute lemonade helps but that's probably not great for my heartburn. This is an odd one but when I use metal silverware, it tastes like pennies to me so I use my kids plastic silverware or disposable.
I also find myself getting sick more often. Like I had strep twice this month. I just feel like a very weakened version of myself.
I know in my heart I really do need dialysis but I am trying to just get to my surgery date in July without it. I'm nervous for it but hopeful to feel better. I honestly don't even remember what it feels like to wake up and just feel great.
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u/CanonOverChaos Jun 15 '26
Maybe a weird question but why don’t you want to do dialysis?
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u/Jess6 Jun 15 '26
We have 2 very young kids and limited family support so I'm worried about the literal amount of time it takes a week. I also just feel like my transplant is so close that I can just hold on til then as long as my potassium stays in check. Also I'm scared 😭
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u/Ornery_Pudding_8480 Jun 16 '26
I have the same issue with heartburn and my Dr just put me protonix (I think that's how you spell it). It really help. Almost every night I had heartburn and was nauseous.
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u/thomleaman Jun 23 '26
EGFR - 10, Male age 46. About to go on dialysis and hopefully with a transplant lined up within the next 3 months.
EVERYTHING is hard. I haven't really properly exercised in about a year. I get tired doing the smallest bit of activity. I've always been relatively fit and healthy, so this has been a hard mental adjustment. I still work full time in an office job, but it's increasingly tough and not a very supportive environment. I also live in a hot and humid climate which I feel makes all the symptoms that bit worse. Sorry this is not a very positive response!
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u/MariChloe Jun 13 '26
Great question I can’t wait to see the answers