PKD2 and fatigue

Posted by jdiakiw @jdiakiw, Aug 19 7:21pm

I am an 84 male with inherited PKD2. My creatinine hovers around 200. And my kidney functioning hovers around 25%. I am experiencing unusual fatigue Do feel pain in back at kidney levels. Buy so tired it is hard to walk far or do chores. Wondering if fatigue is a typical symptom at this level of the kidney disease.? Or should I be looking for some other cause. When does kidney functioning lead to debilitating loss of energy ?

@jdiakiw The one time I had bilateral kidney pain, I had a kidney infection. The primary care Dr who saw me said "kidneys don't hurt"; he was a substitute for my regular Dr. I had to argue and go to his boss to get the right antibiotics. You might want to check with your nephrologist, to make sure you don't have an infection

By the way, people seem to experience fatigue at all kinds of levels of kidney disease. Because CKD can be a slow process, we may not realize our energy levels are depleting. I have talked to many patients who have differing levels of function, and differing levels of energy. I am at 28% function, but have comorbidities that lend towards fatigue, also.
Ginger

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I'm really looking forward to an answer to these questions. I've always been energetic, but in the last year I've been dragging.

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@cldmeyers

I'm really looking forward to an answer to these questions. I've always been energetic, but in the last year I've been dragging.

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Kidney disease
"Results
Eighty-eight per cent of patients with early-stage disease reported physical symptoms including pain, fatigue, breathlessness, weakness and a general malaise. "

This describes me to a "t". I’m at 25% kidney functioning

The full report here
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4581379/

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@jdiakiw, Sincerest thanks for posting this excellent article regarding kidney functioning from the NIH! I hope others of our kidney group will find it as instructive as I. I'd thought my lessening energy and increased fatigue over the past 2-3 yrs was due only to increasing age. It is strangely comforting to learn that fatigue and general malaise are early-stage symptoms of lessening kidney function.

While I remain incredibly grateful that I suffer no physical pain from the kidneys, the lack of guidance from docs and the emotional strain from the diagnosis has played a role in my overall sense of well being.

The diagnosis of stage 3 CKD a year ago was indeed frightening and what made it worse for me was that my pcp had not informed me of it earlier and now with my third visit with the nephrologist, I've not received medical support nor instruction from either of these two professionals.

Both the patient experiences and the docs' reports were on target for me. While the entire article was very helpful, if either of my docs or docs of other early kidney disease patients, had followed these two reports, the early days of this diagnosis could have been so much more supportive.
‘To inform them about their condition and advise them on diet and exercise, risks with this condition. And I would monitor them, and refer them if I felt this was required.’ [NOR 08]
‘Mental support is important at the early stage cases.’ [FIN 01]

Thank goodness, I found Mayo Connect early because this and another kidney support group have been and continue to be my guiding lights as I work to learn more about maintaining the best kidney life I can.

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@jdiakiw

Kidney disease
"Results
Eighty-eight per cent of patients with early-stage disease reported physical symptoms including pain, fatigue, breathlessness, weakness and a general malaise. "

This describes me to a "t". I’m at 25% kidney functioning

The full report here
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4581379/

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Although it doesn't make the lethargy any better to deal with, at least I know I'm not doing anything to cause it.

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@cldmeyers, You make a good point!

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@kamama94, What did you learn from your last visit with the neph? Will you begin a new plan of treatment ? Just thinking of you.

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@fiesty76

@kamama94, What did you learn from your last visit with the neph? Will you begin a new plan of treatment ? Just thinking of you.

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@fiesty76, I just posted an update in the dialysis thread – great minds think alike, LOL Am to have central line done in outpatient 1st of wk for immediate dialysis if needed and an arm fistula/graft for longer-term dialysis as well. Won't know until tomorrow or maybe Tues exactly when and I'm not a patient person to begin with. Waiting is far worse than knowing the worst. So keep all those positive vibes coming my way. Thanks!

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@kamama94, I agree that waiting is the hardest. Once we know our options, we can move forward. Hope more will be revealed about the cause of your sudden drop in lab values.

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