Kidney Patient Guide

Hello everyone,

I have stage 3 CKD (creatinine circa 180, eGFR 38) and have been unable to exercise regularly for over 10 years now. I've tried to start up several times but I always suffer from severe fatigue and brain fog for 1-2 weeks after any kind of exercise. My nephrologist can't explain it- he says he has patients with more severe CKD who are able to run marathons. I've been tested for adrenal fatigue and thyroid issues and that all came back negative.

I was reading on another forum (Phoenix Rising) that post exercise malaise may be linked to the liver and kidneys inability to metabolise/clear the lactic acid produced by the body as a result of exercise. One of the persons posting on the forum suggested bicarbonate soda as a remedy. The first dose I took alleviated my fatigue by at least 70%; however, the 2nd dose made be feel quite unwell. I'm somewhat reluctant to use this remedy on a regular basis due to its high sodium content.

Has anyone else experienced similar symptoms and successfully overcome it? If so, could you please suggest what I could try?

Many thanks

Louis.

Hi Louis_S,
It looks as though you are, 'running before you can walk' as the saying goes'.

Try say, a 20min brisk walk say 4 or 5 days per week for a month, by brisk I mean walking quickly enough to make holding a conversation difficult.
Once you recover from this without any problems, try something more strenuous but do that in small doses at first.

How is your blood pressure, and are you taking a statin?

I would talk to your consultant about Bicarbonate of Soda.

Thanks wagolynn. My general health isn't too bad, apart from abnormal readings relating to my CKD (urea, creatinine, uric acid), all else is in the normal range, e.g. blood pressure about 110/75.

I'm 41 years old and I used to be able to go to the gym 6-7 days a week in my early 20s. So its very depressing when going quite slow for 30 mins on a stationary bike leaves me feeling so unwell. Lifting weights and body weight exercises also leave me feeling wasted.

The walks mentioned above will stop you seizing up completely but if these have a similar effect to your gym work, see your GP.
The kidney consultant will tend to focus on your kidneys, and problems known to result from CKD, your GP should look at you in the round, and consider other possible causes of your trouble.

You make it look as though you stopped your gym work, and have re-started, if that is the case you will have to slowly build up to a anything like your old level, much slower than when you were younger, also as you age, a good warm up procedure becomes more important.

The symptoms you describe, usually come with CKD but later on, however, we are all individuals, and our bodies react differently to the build up of toxins.

I asked about statins because I have been taking a statin for several years, and I have been on dialysis for several years.
Lately, I have almost seized up, and was unable to use a vacuum cleaner in one session but had to have a break halfway through a room.
As a trial I stopped taking the statin, I still have the usual (CKD) joint, and muscle pain but to a much lesser degree, I have run this test for about a month, so it's time to talk to my GP about it.

Thank you Wagolynn- I'll try the brisk walk strategy for a month and let you know how I get on.

Hi -i'm new to this forum and to the prospect of dialysis or managed care as having recently reached Stage 4 after years of congenital kidney malfunction. I'm 72 and always was a high energy lawyer, happily working long days well past usual retirement age, doing voluntary work as well and managing on a complex meds regime, but I find I now have virtually zero energy, acute oedema in feet, ankles and hands and am just wiped out even after a gentle walk with dog and adored hubcap. I suspect we all react differently, but maybe my osteoarthritis in my joints (2 of which have been replaced so I'm no stranger to medical interventions of all kind) contribute to my inability to take the recommended levels of exercise. One thought: against all medical advice my husband and I recently completed an ambitious trip round Vietnam, Laos and Cambodia to get three more ticks on my bucket list while I still could. We ate a S E Asian diet throughout our entire 3 weeks away and I felt better and had more energy than for over a year, so we are continuing replicating our diet while in S E Asia as much as is possible and I'm told dietary changes can be key to energy levels. Best wishes. Sue

Hi Sue,
Feeling tired is a normal symptom of CKD as you approach dialysis.

Have you had a look at this http://www.kidneypatientguide.org.uk/most.php

This should give you some idea of what is going on at the moment, and it is a reliable source.

This site is more technical http://edren.org/ren/edren-info/

Have a look at these, if you still have questions, come back of course, and I am confident someone will be able to clear up any issues, bearing in mind we are all patients not medics.

You should find your consultant or GP are the best source of information because they know the full details of your problems, and they are usually very keen to answer any questions you have.
It may help to make a written list of questions, and take it with you to appointments, we all tend to forget when we are actually facing the doctors.
If you are not already, take your husband with you to appointments, you can debrief each other once home, just in case you missed something.

Diet - once you are on dialysis, there are some dietary restrictions but you will be referred to a dietician when this becomes necessary.
In the mean time the 5-a-day diet (if you can call it a diet) is about the best, when required this can easily be modified to fit in with dialysis.

Best wishes

thank you for your kind message. As a lawyer and someone who has lived with renal problems since childhood, been in and out of hospitals innumerable times and endured 14 assorted operations of various kinds, I'm reasonably conversant with most of the readings (receive all my blood and urine results and understand them etc), and often find I know more about my condition and my response to the prescribed meds than the nice, well-meaning but often-changing clinicians and nursing having to deal with me! I've tried those sites you kindly recommend and many more - particularly the ones about self-management in the US which I find most helpful. I'm now trying to add to my research with some personal case histories and anecdotes as most of the conversations I have had have confirmed my anxieties about just how life-limiting it is once one starts dialysis, of any kind but particularly hospital-based haemo which is my least favourite option, and as oldie who has lived a good, long, active life and survived a decade longer than was forecast I am also quite keen to talk to anyone who is exercising their right to refuse treatment/dialysis.

Hi Sue,
Most Consultants will hold off dialysis until it is the only option due to the high impact it has on the patients life.

There is an awful lot of rubbish on the internet about curing kidney failure but no hard evidence that this has ever worked.

Best wishes.

so true - endless witch doctory and snake oil offers abound! I'm very pragmatic and realistic about what lies ahead, I think, but can find very little personal stories from those opting for 'managed care', i.e. no invasive treatment, just meds and pain relief in the expectation of exiting the stage earlier and on one's own terms rather than after a bit more time with dialysis. I've long been a vocal advocate for self determination and assisted dying, and was on the Board of Dignity in Dying for some years, so have Advanced Directive, had conversations with family members and medics, etc and remain unafraid of death. Just deliberating as my lovely husband favours encouraging me to peg on for just as long as can, whatever the limitations on an independent life.

Hi Sue,

Looking, and asking around, there is very little on, 'Managed care' CKD, the general view appears to be that it is a way of managing death making it as comfortable as possible.

Depending on your other medical problems, age need not be a bar to transplant hence the dialysis to keep the patient as healthy as possible whilst waiting for a transplant.

I think most people find the thought of dialysis daunting but once they get going find they quickly adapt to the new life.
Holidays are still possible but they have to be organised in advance.

Best wishes.