New to home hemo

Hi all, I have been following your message board for some time. My husband and I recently trained for home hemo at Davita in Scotsdale at the same time with Deb and Michael.

I am looking forward to seeing my first labs. I am very happy to be home and out of a regular unit. I would recommend home hemo to anyone that likes to have more control in there life. So far after 6 treatments I can say I do feel somewhat better and the people around me say my color and general appearance is much better.

For now I have choosen to run the six hours in the day time. I will probably go to nights now that I am gaining confidence that everything will run smooth. The only complaint I have so far is just the discomfort of sitting for such a long time and the anxiety I get after the 4th hour. I don’t know what’s causing that but the last two runs I took a xanax and that seemed to help alot.

The baby K is a nifty little machine. If you have any questions feel free to ask, Gloria

Hi Gloria!

I’m so glad to hear you’re adjusting to being at home and doing well.

Michael’s been on home hemo for almost four weeks now, and the change in him is remarkable. Yesterday, we went out to lunch with our family for our anniversary, and he talked and laughed and ATE. It sounds like a little thing, but it was really kind of miraculous, especially when I consider how we spent our last anniversary–with Michael in the hospital critically ill from sepsis! Anyway, what I notice the most is a huge improvement in energy, improvement in mental clarity, no more nausea, improved appetite, improved sense of humor. Oh yeah, and he’s starting to complain that he’s bored! Honestly, Gloria, for four years (the time he’s been on dialysis) he’s felt too sick to be bored until now! So I jokingly suggested housework was a cure for that, and you know what? He’s actually started doing little things again!

I’m eager for labs too–this will be Michael’s second set. The first came (literally) after his first night on nocturnal, so they didn’t tell much–except his URR which was 78 (he’d been in the low 60’s on in-center).

Michael does have problems with anxiety (and restless leg) on the machine too, even though he does his runs overnight. We haven’t completely worked it out, but right now he’s taking Ambien and Klonopin about an hour before he goes on and it seems to settle him down a little. It also seems to help that I sleep in the bed right next to him (he dialyzes in a recliner next to the bed) and I can kind of sense when he’s getting edgy and reach over and rub his arm or hold his hand.

Anyway, talk to you later. Tell Rick hi!

Deb

Congrats for making it at home! …

Are you doing 6 hours daily or is it every other day?..Please tell us a little bit about your tech specs…like Blood Pump Rate and Dialysate concentrate…

Do you self-cannulate?

So is this baby K a Fresenius machine or a Braun?

You asked Gloria, so I hope you don’t mind me jumping in, but here’s our experience…

Like Gloria, my husband Michael uses the “Baby K” which is a Fresenius machine designed for home patient use. Michael runs for nine hours every other night at a BFR of 250, dialysate flow rate of 300. While most of the patients in the center where we trained had catheters, Michael does have a fistula although he does not self-cannulate–I do that for him. It was not difficult to learn. He does not use the buttonhole technique because he has a slightly “unique” access–created from a cadaver vessel–and because there were no studies done on using buttonhole technique with this type of access, his doctor preferred we continue to do conventional sticks.

If you ask Michael, he’d tell you going on home hemo was the best decision he’s ever made. In fact, he recently told me that he felt so much better than if someone suddenly told him that he could get a transplant (he’s ineligible because of heart problems) he would tell them, he’d prefer to just continue with home hemo. He honestly feels that much better!

Of course, it IS still dialysis, and it’s not perfect, but once you have ESRD, perfect’s not an option anymore anyway. And for Michael (and for me) this is pretty darned good.

Deb

After how many txs at home did Michael start to feel better? He had barely adequate clearance in-center. My clearance has always been around 80 in center and I have felt decntly energetic on days off from tx… It would seem that with every other night nocturnal that there is still the problem of fluid and toxin build up, whereas with daily dialysis, levels are kept down. So 3x nocturnal might be like 3x short dialysis only that there are no weekends and one feels more energetic as there is more clearance. I feel much better when there is only one day inbetween txs. The weekend is the harder day to live with. In additon to feeling more energetic with 3 x week nocturnal and getting free of the unit environment are there any other advantages…is the diet more liberal?

It’s hard to say exactly why Michael feels so much better on nocturnal.

I agree that fluid issues did not improve with nocturnal, except that he doesn’t have the weekend to worry about anymore so that helps some. But he still struggles with fluid intake.

On the other hand, his diet is generally much more liberal. His last post phosphorus was actually 1.7, without binders, so he is able to eat phosphorus without worry again. Which has given him back dairy and beans and even Diet Coke. Saturday night I even made Mexican–cheese enchiladas with rice and refried beans–which is something he loves but could never eat before.

As for how long it took to feel an improvement, Michael said that he actually felt better immediately after his first treatment in that when he finished dialysis in-center he’d feel kind of like he’d been run over by a truck, but after his first nine-hour run, all he really felt was like he’d been sitting WAY too long. By two treatments he reported that his energy was better, and I noticed an improvement in his color and mental clarity. At this point, he’s been doing nocturnal for four weeks, and I notice subtle improvements nearly every day. Like yesterday, he actually stayed awake for the whole football game he was watching. (I noticed this one because I’d usually channel surf when he dozed off, but no dice this time! LOL)

Deb

Hi, sorry it took me so long to get back here. Deb I’m glad you shared your story. Mine is very similiar. I run on the little Fresenius K machine. I run 6 hours every other day. The blood pump is at 200 and dialysate is 300. I don’t have to cannulate because I still has my tessio cathater. I think I starting feeling a bit better after about 4 runs. It’s a little hard for me to tell because I have had some anxiety about sitting for that lenght of time. But one thing, when I get off I don’t feel nearly as beat up as I used to. Since I just drew my labs for the first time since being home yesterday I won’t know till about Fri. how this is going to effect my diet. I can tell you that when I did the trial run for three runs at the unit my phos dropped dramatically. So I should be able to stop the 15 Renagel I take everyday very soon. Also, I have been told that the slow dialysis will help with the uremia and I can stop the 15 bicarb I take a day. So with just those two things that is 30 pills gone and maybe a better stomach. :slight_smile:
The other things that are so important to me about home hemo is that I can control my runs. Even though I have always liked my techs very much there is simply to many people with the opportunity to make to many mistakes. At home I can be very clean. If I make a mistake I can go back and redo it. I know if I need a drink or need to pee. I know that a little air in the lines is a little to much for my taste. I’m fussy like that and it works out better if I take care of me. I can see it’s not for everyone. It is alot of work and organization but it’s no more then running a house or working. I’ll let you all know how the labs turn out and that should be the beginning of things getting better for me.

AZgloria,
Why do you run 5 hour txs as opposed to longer? It sounds like you run in the daytime?

I think one of the reasons patients feel better on nocturnal even every other night is that the fluid removal is much slower. You are taking off fluid over a longer period of time. Every other night would allow a toxin build up. But you are starting the build up with much less to begin with because of the longer runs your getting more removed when you do run.

I think waste molecules in the blood are removed in different ways. One way is diffusion – this is the movement of waste across a membrane from areas of high concentration to areas of low concentration. Urea, Potassium, calcium are all types of waste molecules that move from areas of high concentration (the blood) to areas of low concentration (the dialysate). This type of waste removal is best during the first hour of dialysis when there is the greatest difference (highest gradient) from one side of the membrane to the other.

Another way waste molecules are removed from the blood during dialysis is not based on the gradient between the fluid but rather is a function of time. Phosphorus is removed at a steady rate for instance. One reason people on 8 hour daily don’t need binders and can eat dairy is that over 48 hours plenty of phosphorus is removed. The rate of phosphorus removal I think depends on the sheer between the blood and the dialysate but generally it is simply a function of time on the machine. Dialyzing 8 hours every other day is equal to 28 hours of dialysis a week and should give a person better phosphorus clearance than someone dialyzing every day for 3 hours (assuming an average blood and dialysate flow).

Hi Jane, I run 6 hours every other day. For now I have choosen to run in the day time. I get started around 5am. I don’t know if I will change to nights since this time period seems to work well for me.

I was told when we started nocturnal that the slow blood pump speed allowed for smaller molecules and med molecules to be removed which didn’t get removed at faster blood pump speeds. Also was told running at a slower blood pump speed was easier on the heart.

I thought it is the low rate of fluid removal that makes daily nocturnal so heart healthy. When I first started using the internet to learn about ESRD ('96) there was a man named Jim Boag who posted to the D_S list serv. He was a great resource. He was a urinator but he participated online and patiently answered many questions. Jim worked as an engineer designing, among other things, dialysis systems. We need a new Jim who can explain what is going on at the molecular level inside the dialyzer. It’d be great if an engineer from a manufacturer (even better several) would regularly participate on this board. I know on occasion people have posted that this is a patient board - I think that describes the board’s point of view not who should feel comfortable posting.

Bill, I think your right. I can find in my research statements to backup your post but I can’t find one on the BPS yet. I’m going to look further.