Hi my husband has been doing hemodialysis for 3 years so far this time around. He had a kidney transplant that lasted for 17 years, but lost it due to cyclosporin toxicity 3 years ago.
He has started doing nocturnal dialysis every second night for 8 hours. He tried sleeping in bed, but his fistula arms aches when he is laying flat and he cant sleep. When he sits up it goes away, so he has been trying to sleep in the chair for those 8 hours. He still gets pain in his arm, ( I am wondering if this is because of the long period of time) and he gets alot of back pain, and pains in his thighs. I think this might be because he cant move around much, and is in one spot for to long. Do any of you experience this problem? and if so, would anyone have some ideas of how to get past it?
you say he sleeps in a chair but you didn’t say what kind of chair. if it is not the right kind it could cause all kinds of backaches and other pains.
as a dialysis patient he should be eligible for a hospital bed or a reclining chair. check with his social worker to see what is available.
also, I am wondering now why his dialysate flow is set at 500 not 300.
He has a fresenius 4008 machine. bfr is 270. uf is usually around 250-300/hour.
I have only just found this board which I am so glad I have. I will ask the doctor when I see him, about the dialysate rate. but I thought I might ask if anyone knew what this means, what is the differences in the flow rate.
Sorry to hear your husband has to be back on dialysis.
I did a few months of short daily hemo at home before switching to nocturnal a couple of weeks ago. One of the things I wondered about before making the switch was that the much longer treatment time might cause some kind of pain or cramping at or around the needle sites, but it feels no different than before. No pain of any kind. The only thing I find is that if I lie on my side, on the side where my fistula is, it affects the blood flow and I get an arterial pressure alarm after maybe 5 or 10 minutes. However, I do find that I have to place and orient both my buttonholes very carefully. It’s easy for the sideways angle to change after the needle is in and while taping it down. For me, when that happens, it seems like the needle is touching or rubbing against something in there, and I get a pain that goes into my shoulder.
On in-centre hemo and short daily hemo at home, the dialysate flow on my machine was 500. On nocturnal, it’s 300. I don’t know anybody locally who uses a 500 dialysate flow for nocturnal. Maybe there’s a reason your husband’s prescription calls for a dialysate flow of 500, but I think that if it were me, I would definitely ask the nephrologist about that. The faster dialysate flow seems to go against the “long, slow dialysis” advantages of nocturnal hemo.
In terms of sleeping positions, I often find myself wishing I had an adjustable bed with remote control, because, being hooked up like that, I seem to feel more comfortable sleeping with my head and torso propped up. I’ve been provided with a hospital table and scale free of charge, but they don’t provide beds or chairs where I live.
HI Pierre,
thanks for the reply. I have been doing some reading and the reason for the high dialysate flow is because my husband is doing alternate nights, not every night. This ensures he gets an adeqate dialysis. he uses a 4008 fresenius machine.
There are a couple of reasons for the flow rate. Supposedly a 500 flow rate will give you a better treatment however it uses up the bicarb and acid faster.
When I run a day treatment I use a 500 flow, but on nocturnal if you run close to 8 hrs your going to run out of bicarb before the treatment time is over. We mix 9.5 liters of bicarb and run anywhere from 8 1/2 to 9 hrs and in the morning there is less than an inch left in the jug at a 300 flow rate.
Anyway, before a solution or tip be given there we need more information regarding the pain…there’s pain from dialysis that comes from a few factors…depending on the number of years he has been dialyzing…
If the pain only happens when he does dialysis then possibly 2 things or both might be causing it…one is low blood flow to the rest of the arm causing that pain due to a recent fistula surgery, probable needs more time to develop…2nd problem might be carpal tunnel syndrome which for most of us mostly strikes at rest time, but when awake there’s no pain…
Try to observe carefully where that pain radiates and whether the arm looks pale like yellowish or just pale and cold…don’t forget to report this to your Doctor…
Hi Marty,
thanks for your reply.
Con is on a fresenius 4008 machine, it has a bi-bag we attach to the front of it. A 950g Bi-Bag, then we have a 10 litre container that we fill up with dialysate. this does 8 hours and most likely would do 8 and half to 9…
The BiBag has alittle left in the bottom. from what I read you dont have a bibag attached, do you mix it up yourself?
Thanks for the welcome Gus,
I know I wasn’t very informative with the pain in his arm.
He is having pain in his elbow, I think this is from being on the same position all the time. he rest his arm on a pillow doing treatment, but it is still getting stiff and sore.
I wont forget to mention it to the doctor. thanks for you help
regards Queenie
I have an upper arm fistula, very near the elbow, and I find that I have a tendency, probably learned from doing dialysis in-centre for 3 years (where they sometimes put my arterial needle so near my elbow crease that I couldn’t bend my arm at all), of keeping my arm straight and stiff. For me, it’s just a bad habit, but after an hour of doing this, I have pain in my elbow. I have to keep my arm relaxed and bend it every once in a while.
I remember that and agh! It’s frustrating…but I think once the fistula matures very well it shouldn’t be a problem. After 20 years with same fistula it has gotten pretty much BIG …about a little over an inch wide per side…so bending and moving around now has been easier now…and for the those first several years it’s hectic…
I too have the upper arm fistula and find for some reason that I get a lot of pain two hours in when I use one set of buttonholes and seldom get arm pain from the other. Pressures are about even so don’t know why. I get pain in my elbow and lower arm. I can move my arm without too much trouble with the needles in.
I am planning on talking both to my unit and neph about this, but forget. I’m thinking of asking for some pain meds to take to make it more bearable, it is a LONG two hours when this happens (not always, maybe 25% of the time).
HI Cathy,
that is how Con’s pain is. I think maybe a nerve might be involved… not sure though. I think pain meds might be a good idea. Con is having a fistulagram on tuesday, so maybe it might be better after that. He has a small narrowing near the venous. The will balloon it and hopefully fix some of the problem.
sorry about that.