Despite Nocturnal dialysis and my best intentions I am finding that gradually my muscles and general strength has been progressively declining since dialysis began. Maybe this is not a concern for everyone but my favourite activities occur in the great outdoors, apart from Srabulous on Facebook;0) and they usually make my days brighter.
After nearly 3 years of dialysis I know I am a lot weaker and can see that where there might have been a bit of a muscle before, they ain’t there now.
I find I can do less at the gym and often am cutting my walks short due to lack of energy.
Maybe I am not eating enough protein. How much is enough?
My Neph likes to see my Haemoglobin around 110-115 g/L and my Iron on the low side of normal (currently 11umol/L)
Have others noticed the steady decline of their strength even with good dialysis? Any advice?
Cheers
This is a great question, beachy. I think every person is different in regard to how kidney disease/dialysis affects them. In my own case, I was normally energetic and athletic as a child. By adolescence I was still athletic, but had a decrease in energy. I once had the occasion to speak with the famous patient/nephrologist, Peter Lundin, and he told me he had a similar history, that despite not going into renal failure until later in life, it may of had it’s beginnings from an early age. Just prior to requiring dialysis, I could still do heavy-duty tasks like mowing the grass. But as soon as I had the life-change of going to dialysis 3x a week my focus so changed to that I gradually lost the level of strength and tone I had had.
Now certainly much, if not most of this, is physical due to the disease, but when one thinks of all the stress this causes, the change in diet, the fluid limitation, time spent educating oneself on how to restructure ones life etc etc., it makes sense that one begins to deteriorate. And in my case, there was very little education provided by the medical ppl on how to circumvent what was happening to me- many, if not most of the medical ppl, are poorly educated on their own health habits!
It has only been recently since I started txs at home that I have finally been able to catch my breath, so to speak, come back down to earth and rationally put together a plan to look at what shape I am in and what I can do about it. With this disease, we probably will never be 100%, but I believe with improved dialysis and correct choices for diet and exercise, and most importantly, a strong faith that ensures a good attitude, we can achieve a degree of health that allows us to live life fully.
I think the problem is, most ppl don’t have a correct knowledge of what good health is. We’ve all heard the old adage, “move it or lose it” and who doesn’t know that eating processed foods/junk food is dangerous for ones health. So, it comes down to education and choices.
I share the frustration of everyone who has ever tried to sort this out and found it so difficult. But I believe there are clear answers for anyone who seeks it out. I think we feel lousy because we have wrong habits. Add to that a chronic illness and its a double-wammy! But in a strange way, having kidney disease/dialysis has been an impetus for me to get on the right road with my health habits.
I’m not on nocturnal yet, but with the lack of diet restrictions and the greater level of energy, I would think it affords the most opportunity for one to then apply correct eating and exercise habits. This is just a guess and I may be wrong, but I think with a viable plan to improve conditioning, it is achievable. How many possess such a plan? Not many. One might have to let go of some activities, but could still enjoy a vast array of others that makes life well worth living. I think we can achieve a much higher level of conditioning than we think we can.
Hi Folks
Isn’t ones health also tied to ones age. I can’t do a # of things I did at 20 or 40. (don’t won’t to) At 20 to 30 a # of people can work harder, stay up late, in other words burn the candle at both ends. drs and nurses when first starting will and do stay up for 24 to 48 hrs at a time. But even if your health isn’t bad, time or just the fact that the person has moved on or up, the person won’t stay up 24 etc at a time.
. And how long one is in poor health or dealing with a chronic health issue effects the mental which I think effects the physical .
Bob OBrien
Good point, Bobeleanor, I was just thinking the same thing. None of us are getting any younger! 
Beachy, I assume you know that your hemoglobin is in the target level?
The other thing is, the toxins in the blood (even though there are fewer with nocturnal than with standard HD) are poisons to the tiny capillary blood vessels that feed the muscles. People on dialysis have fewer of these capillaries, and lost exercise capacity.
BUT…exercising can help you grow new capillaries again. I saw Dr. Patricia Painter (an exercise physiologist who specializes in kidney disease) do talks about this, and she even showed pictures of the new blood vessels growing. There are studies that show that even folks into their 80s and 90s can gain muscle mass if they lift weights. Weight lifting and cardio activities help rebuild strength and endurance.
It may be that over the years you’d done less (you did break your elbow, which probably slowed you down at least a bit for a while), PLUS lost some muscle mass because of dialysis. Gradually increasing your activity level should help.
Another question to ask your doctor is whether you might have a carnitine deficiency. Carnitine is a compound your body makes out of amino acids, and it is essential to energy transfer in the body. Dialysis removes carnitine, and nocturnal dialysis probably removes more of it. In the US, there are carnitine supplements on the market (I think the IV ones work better, though this is not an area I know a lot about). Anyway, there is a test for carnitine deficiency.
I am looking into exercises that are best suited for dialysis patients. I have the video and manual that Life Options put out and plan to review that. I’m also looking for any other suggested exercises that would work well with dialysis patients. I know with myself, my bones, muscles, joints, cardio isn’t what it used to be. I currently am walking each day for starters. I would think water aerobics would be a good form of exercise.
Re carnitine, I was told by a nutritionist, that the IV form is the only way to go as with the oral form, one would have to take loads of pills at a time for it to be effective. Medicare paid for this med at one time, but has not for some time. I recall when Medicare cut carnitine the patients in my then clinic were extremely upset. Most of the patients would sleep during txs and it was the only time I ever saw them wake up and react to something in unison. So, I don’t know what carnitine did for them, but apparently it did something for them that they didn’t want to do without. I believe they said it gave them more energy. I have read that all dialysis patients are deficient in carnitine so would think it is something all should get.
Thanks Jane , Dori and Bob.
Your replies are all very useful.
I guess we just have to exercise twice as hard as a ‘normal’ person to keep some muscle mass and fitness. I eat well, probably not enough protein though and usually get in quite a bit of exercise in a day. Maybe it is just getting old like you say Bob. I don’t like that idea!!
What I notice is how my energy levels knock off much quicker than they used to. Take kayaking for instance, paddling along just fine and then I can feel myself hitting an invisible wall and I go flat. My buddies, some of whom are most unfit, can just keep going. very frustrating!
Will look into the Carnitine, Dori.