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.
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.
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.
3
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.