Getting comfy dialyzing in bed

Any suggestions about getting comfortable while dialyzing in bed? My husband’s fistula in on his right forearm, and the machine is to his right while in bed. He uses a back scratcher to push the machine buttons. The major problem is how much he sinks into the mattress. He didn’t like lying flat on his back, so we bought a countour body pillow, which propped him up a bit, but made his back hurt! So, he’s stuck in the chair tonight, but we keeps trying the bed.

I have the opposite setup: left upper arm fistula, machine on my left. So, it’s hard for me to visualize your husband’s positions. But I sure don’t need a backscratcher to reach the buttons. When I’m ready to put my needles in, I simply roll the machine right up to the bed (I have enough slack in the hoses to do this). It ends up facing the bed, about six inches away from it. I have nothing special. I find it more comfortable using two pillows, but other than that, just an ordinary bed. I can sleep on my back or on the side opposite my fistula arm, and even on my stomach. I can lie on my fistula arm side too, but it tends to get numb after about 20 minutes. Sometimes I do fall asleep like that though, and wake up an hour later when a pressure alarm finally sounds. I’m actually fairly comfortable, but an adjustable bed would be a nice treat.

Pierre

Hi Heather and Terry

I think a fairly firm bed is the go. We actually raised our bed higher off the floor as well with some pretty tricky carpentry because we thought a low bed might be affecting my pressures, (think it was just my novice needling) so now we have a bit of a throne!
I have several firm pillows as I don’t like that sinking feeling and spend the night adjusting them trying to get comfortable. I don’t roll over onto my side for very long and seem to only sleep on my back where I feel most secure.
I would like to get a recliner if we could fit one in the bedroom for when I do shorter runs and for just when I get sick of lying and can’t sleep.
I sit on the side of the bed and do my needling on a firm pillow on my lap and have a plastic backed picnic (wishful thinking) blanket spread over the area in case of blood spills.
If you go to Gus’s website gallery and look at Fresenius 4008B you can see our set up.

I think I mentioned this before, but like I said, the machine rolls right up to the bed, near the head of the bed. Next to the machine, I have my adjustable height hospital table which also rolls right up to the bed, to the right of the machine, more towards the foot of the bed, and I have a little plastic basket with supplies in case I need them. Essentially, everything I need to get on and to get off is on that table, and the basket is only for extras should I need them for whatever reason (everything I need to set up my needle tray is in that basket, so it saves time). Once I’m on, I roll the table away, put the basket on the floor, and I’m all set for the night.
Pierre

Something I have wondered is can you put your blanket completely over your access arm or do the lines get in the way?

And for Pierre, they tell us here not to sleep on our access arm. I am able to sleep on the side of my access arm, but I don’t actually sleep right on it it- I sort of sleep on that shoulder and have my arm extended. But after a short time it feels uncomfortable so I switch to another position. Some nights I sleep well and other nights it’s a battle to relax.

Hi Jane,

I’ve never slept on my fistula arm, except maybe accidentaly once in a while. When I say I lie on that side, I’m really lying more on my shoulder, not directly on my arm. Too much danger of a fistula clotting, I think, sleeping on it, on or off dialysis.

I almost never put a blanket over my fistula arm. Why? Only because in my opinion, there’s too much of a risk for tapes, tegaderm or whatever is used to tape down the needles and needle lines to stick to the blanket. I’ve seen that happen so many times in-centre, including to me twice. You get really nice and cozy, doze off, tape edges stick to blanket, then you move arm or blanket and it pulls a needle right out. So, while I wasn’t taught anything about that in training, I never put the blanket over my arm, except sometimes in the morning when I still have some time on tx and I’m fully awake.

Pierre

I’d never get comfy in bed while dialyzing…am a person on the move all the time! Turn here, turn there, flip here, flip there…

:?

I use a lightly elasticized stocking thingy (technical term :stuck_out_tongue: ) over my taping and a small moisture detector tucked in underneath. This makes me feel nice and secure and I even use the cover on short runs. The lines are also pegged to the side of the bed but give me freedom to roll over if I want. Sheets and blankets go over top but with the heat Freni generates, the odd hot flush and our climate they are usually thrown off.

My style of sleeping is arms under the blanket when I feel cold. But then at some point I get overheated and I throw the blanket off for a short time. So, I would need a set up like Beachy’s to secure the needles. Beachy if you ever find out the technical name of the netting please pass it on. Is the stocking and moisture protector washable? Does the stocking work with upper as well as lower arm accesses?

Another question I have is, does anyone ever have blood leaks on your blanket once you get your needles in? Or do leaks only occur when getting needles in or out? I am wondering if I have to do anything to protect my good blanket.

It IS possible for a site to leak during a treatment. Terry always puts an “underpad” between his arm and the pillow his arm rests on.

A sleeve like Beachy’s would drive me nuts from itching if I had it on all night. Why couldn’t you just use burn net for this purpose? I suspect there are big differences between having an upper arm and a lower arm fistula in this regard. Upper arm ones tend to be big and deep compared to lower arm ones. When I have a needle in mine, it’s probably in at a much steeper angle than it would be in a lower arm fistula. Anything pressing down on it would make alarms very frequent. So, while I use burn net to hold the leak alarm unit on my arm, I don’t have anything covering the needles except the big Tegaderm which tapes them down. The needle lines also don’t go the same way. They go down but there’s plenty of room to tape them at the wrist. I don’t turn them back up like in Beachy’s picture. They also come out pretty close to the elbow (the arterial is just an inch above my elbow crease.

Sleeping with fistula arm under pillow - would that even be possible? I think not yself, but others may have other opinions. It doesn’t take much pressing down on the needle, or on the needle line as it comes out of the needel, to cause high enough pressure changes that will trigger alarms. More limited sleeping positions is simply the price we pay for the benefits of nocturnal hemo.

No, never had blood leaking from needles during treatment, not at home, and not in centre. I had a needle come out a couple of times in centre. Then you get blood! But I’m taped up a heck of a lot more securely at home than I was in centre.

Sometimes, if you’ve been a little too aggressive removing the buttonhole scab, you can get a tiny bit of leakage right at the needle, but it doesn’t go anywhere, and it’s not a problem. You just have to be careful you don’t chew up the skin around the actual hole, and if you happen to do this, it heals after a few days or a week or two.

Pierre

Hi Jane
Will try and find out what the stocking thing is called. It is made out of a lightly elasticised cotton and washes and dries quickly. It is used in Oz to provide that bit of extra cover over bandages and could only be called a pressure bandage if you used a tight one. It comes in different sizes so you need to get one that fits comfortably with just enough strength to provide support but not pressure to your arm and not too loose to do nothing. Too tight and there will be alarms. But unlike Pierre, I would go nuts if I didn’t wear one as I would be constantly feeling the site to see that nothing was loose and I tend to want to play and fiddle with the tapes. With this on I feel secure and can then try and think about sleeping. It does not itch or seem to create heat at all. I LOVE em!
Cheers 8)

Will try and find out what the stocking thing is called. It is made out of a lightly elasticised cotton and washes and dries quickly.

Could this possibly be stockinet? 3M makes this product; it’s a cotton tube made to go under casts.

Jane and Dori,
The “stocking thingy” is called “Tubifast” and you cut the length you want from a roll. Type it into Google and you can see companies that stock it.Feels like cotton but isn’t.
Cheers

“Tubifast holds dressings securely, without constriction or compression. Its light elasticity allows patients complete freedom of movement. The light, open weave rayon fabric allows air to circulate over the skin, helping to avoid maceration. A unique knitted-in ‘safety lock’ ensures that Tubifast cannot be applied too tightly. Tubifast is available in a range of five sizes, designed to make it possible to use Tubifast on any part of the body. Each size is identified by a colour coded line knitted into the bandage”.

Beachy,
Thanks so much for the info. on Tubifast. I see now-it’s the very light outer material in your pic. and the other white material underneath is the blood sensor. So, does the sensor fit loosely too so as not to be too constricting? Does everyone in your program use the Tubifast or is this something you discovered on your own? I am wondering which size Tubifast would work with an upper arm access?

Pierre, and those with upper arm accesses, do you also wear a sensor? Is it fitted in such a way that it molds to the bend in your arm?

Gidday Jane,
Actually the white you see underneath is just the tape for the lines. The moisture sensor we use (just for Nocturnal patients in my program) is very small and consists of a unit (about 3inches x 1half ) which I tuck under my pillow and a small band connected by a length of plastic coated wire. The band just slips under the lower side of my Tubifast sleeve. My arm feels so comfortable I don’t feel any of this stuff.
These detectors are very cheap and are actually designed for children wetting the bed! They are very sensitive to moisture and quite tough. (I actually dropped the unit with the microchips inside the casing into a cup of water accidently the other night and it still works like a charm! Not that I have had it sense any blood leakage yet as I tape firmly under the Tubifast and don’t move around much overnight.
Have a great day. 8)

My leak detector is just a standard DRI Sleeper, made for kids who wet the bed - probably very similar to Beachy’s. The detector part is at the end of a long wire, and it’s only about 1 inch by 1/2 inch at the widest part. I tape it down with a short piece of plastic tape just behind my venous needle (it’s between the venous and arterial needles, but right up against the venous. The little alarm unit itself at the other end of the wire I simply hold on my forearm by using a length of burn net which I sort of roll over the unit. But there is nothing over my needles except the Tegaderms. To make the Tegaderms even more secure, I wash my arm with soap and water just before going on, to remove any skin oil. I didn’t invent this method. It’s the way I was taught.

Sometimes I don’t think people who haven’t done daily nocturnal can truly realize just how close to normal life becomes - which is what justifies the trouble of doing it. Except for getting yourself on dialysis late in the evening and off early in the morning, it’s virtually like not having kidney failure at all, and it’s easily as good as having a kidney transplant, when you consider all the potential complications that brings. Every single day is free, diet is free and you can’t even really outdrink it. Hemoglobin normalizes, blood pressure normalizes, all blood work results normalize. There’s no way even short daily hemo can touch it. It’s a long and gentle dialysis, and you have to experience it to believe it. I mean, when you’re only pumping blood out at under 300 ml per min, your heart doesn’t even know it’s happening. Even drinking without limit, it’s rare that I need to remove more then 300-400 ml/hour of fluid during the night. 300 ml is like a standard glass of water.

Pierre

"Sometimes I don’t think people who haven’t done daily nocturnal can truly realize just how close to normal life becomes "

:lol: :lol: Pierre, you have been saying how easy it is all along and I woke up this morning truly believing it for the first time. My nurse said it takes a good 6 months to feel comfortable with dialysis at home and he was right and so are you. I think compressing starting dialysis and training together and then going home straight to Nocturnal has made this a very long 6 months for me but now, hey, life can be good!
Cheers 8)

Beachy,

I think that compressing the start of dialysis period and home hemo at the same time must be very difficult, and on top of that, you have no reference to compare it to because you have never been on dialysis before.

What people don’t seem to realize is that even when starting dialysis in-centre, a realistic nurse will tell you it takes a good 6 months to really start feeling better and to really tolerate it comfortably, and for the fistula to really develop from use. So, you’ve got those six months, and in addition, the stress, fear, anxiety and learning curve of starting dialysis at home, plus on top of that, the stress, fear, anxiety of sleeping the night on dialysis. That’s a lot for one person to take, in my opinion. I don’t find it surprising at all that you would find it hard to get used to at first. Anyone would. So I have a lot of admiration for people like you.

One reason that I had few problems are those 2-1/2 years on hemo at the centre before switching to home hemo. For one thing, I had a mature, stable fistula in which all the early problems were a thing of the past. So right there, that’s a huge advantage. And then, because of that experience, everything I was shown in training is something I had seen nurses do hundreds of times already (and even the machine was identical to mine at home). So it wasn’t really a totally new experience.

Then, I did some short daily for while, with plenty of time to get used to doing this by myself at home. By the time I went to daily nocturnal, the home part of this no longer held any fear for me. So, it was really a breeze. Now, I’m not saying I never had any anxious moments when something didn’t go right, or that I never forgot a clamp or something (because I sure did), but there’s no substitute for having experience to back up the training.

Pierre

Pierre, I’m glad everytime you pipe up with how good nocturnal dialysis is. There have been a few patients who said they didn’t feel that much better ( not sure if they were SDD or SND) and the thought has crossed my mind whether I will be like them or be one of the fortunate ones who feels tremendously better. It must be incredible to stop feeling like a yo-yo and have your life back. I have wondered if anyone doing nocturnal txs finds an improvement in muscle/bone problems in addition to improved energy/nutrition?