Home Haemo Question

[Ken Shelmerdine]

Apart from the obvious advantages does home haemo make you less wiped out? Do you do longer sessions less often or shorter sessions more often or is it a mixture of both? I'm trying to assess the physical benefits of home dialysis over in centre dialysis.

[Bill Peckham]

Feeling less wiped out - or the dialysis hangover - I think correlates to the UFR. The lower the rate of fluid removal the lower the post dialysis impact.

It can be a mixture of both - the more frequently you dialyze the less time between treatments for fluid to accumulate. The longer the treatment the slower you can remove the fluid that has accumulated.

[del]

The longer the treatment the more potassium and phosphorus is removed so you can eat a lot more "stuff".  On home hemo you can do nocturnal , short daily or do it the same as conventional.  The more freguent longer treatments are easier on the body though.  Toxins don't get a chance to build up.

[monrein]

If I did home hemo I'd choose nocturnal and do 6 nights a week.  Second best, short daily...say three hours 5 or six days a week.  Nocturnal is best because it's slower pump speed, better for the larger molecule removal and you'll feel better overall.  I think it was Bill who once posted a study that showed that people doing regular nocturnal felt as good as people with transplants.  Of course you still have to hook up but at least you feel human again.

[petey]

My husband Marvin was in-center hemo for 12 1/2 years, and he's been on home hemo for 18 months.  Marvin says the feeling after a home hemo treatment is NOTHING like the feeling after an in-center treatment.  When he was in-center, sometimes it was ALL -- literally ALL -- he could do to get to his car and drive the 10 miles home after a treatment.  Now that he's on home hemo, he gets right up from his chair and goes, goes, goes.  He has slapped a couple of band-aids on his sites and gone right to his lawn mower and mowed the grass for a couple of hours after a home hemo treatment!  (And he never even mowed the grass the entire time he was in-center -- not even on his days "off.")

When Marvin was in-center, he went three times a week, and his time climbed all the way up to 5 hours!  On home hemo, he runs six days a week for 2.5 to 3 hours (depending on how much fluid he has on, but 3 is the max hours we've run).  He was running at 450 BFR in-center, and that's what we run on on home hemo, too.

Marvin hasn't done nocturnal, but he says -- to him -- home hemo is a close, close second to how good he felt when he had his transplant.

[Dan.Larrabee]

I can’t express how much better I feel on home hemo. I have never felt wiped out like I did in the center. I am sure this is due to many reasons, clinically speaking, like Bill mentioned – UF removal etc.  Tell me if I am the only one, but I feel better emotionally as well. I can see my family, friends and pets. I can eat from my own fridge, watch my own TV in my own chair. I can crank the heat to 110 deg. I can do dialysis any time of the day I want and if I am late, no one cares.  Best thing is with the NxStage, I can take it with me. I plan on doing dialysis in as many places as I can (look for Youtube videos to come). 

An better yet, my doc called yesterday and ordered home extended therapy (nocturnal, but don't say that out loud ) and I can’t wait.

[jbeany]

I'm on 5 days a week - between 2-1/2 to 3 hours, depending on my fluid gain.  I get none of the washed out, drained, crappy feeling I get on in-center.  I've been able to do so much more physically now that I'm on home d.  I have very few restrictions for diet, and the fluid restrictions are much less as well.  If you can switch, I'd say go for it!

[Wallyz]

Ditto ditto ditto.

I found  a lot of my fatigue was from being under dialyzed all the time.  I was uremic even right after I finished dialysis.  Not to mention the diet killed me, adn I couldn't keep a lot of it down.  Now,  less urea on the system, better more healthful diet, and I can drink some when I feel thirsty.

[Ken Shelmerdine]

Thanks everyone for the information. It's home haemo for me. It will also allow me to return to my full time job as I can't afford to retire yet. I just wish our NHS provided Nextage machines. I've shown pictures of them to several of the dialysis staff and most of them had never heard of them before! So I guess we are years away from getting them.

The biggest issue I have with nocturnal is that it takes me approx. 2 hours to get to sleep at night and during that time I am very fidgety. I have  to swap which side I sleep on about a dozen times before I finally get off to sleep and I can't imagine being able to do that with a needled fistula in place. Having to stay in one position during this time would drive me stir crazy.

[Bill Peckham]

Thanks everyone for the information. It's home haemo for me. It will also allow me to return to my full time job as I can't afford to retire yet. I just wish our NHS provided Nextage machines. I've shown pictures of them to several of the dialysis staff and most of them had never heard of them before! So I guess we are years away from getting them.

The biggest issue I have with nocturnal is that it takes me approx. 2 hours to get to sleep at night and during that time I am very fidgety. I have  to swap which side I sleep on about a dozen times before I finally get off to sleep and I can't imagine being able to do that with a needled fistula in place. Having to stay in one position during this time would drive me stir crazy.

I was saying the same thing when I was thinking of switching - in my case my shoulders are sore and I toss from one side to the next in bed. I also read in bed and it may take an hour for me to fall asleep.

For whatever reason it is totally different sleeping in a chair - I thought no way would I sleep in chair but I do. And I fall asleep quick. I usually will play music or a podcast as I am just getting on and most times I do not remember the last half of a half hour podcast or after about four songs I'm out.

If you can give it a try you might be surprised and I really like dialyzing in a chair. When I travel I go back to a bed and sleep alright but I am always happy to come home to my chair.

[jbeany]

NxStage is only in the States for now - they are too new to think about expanding.  Even regular home hemo will probably be an improvement for you though - the control over the schedule is a wonderful part of doing it yourself.  Being able to pick times, days, and change your schedule whenever you feel like is fabulous.

[del]

One of the "good" side effects of nocturnal dialysis is that it actually improves sleep!!

[Beth35]

When you do home hemo, who puts the needles in your arm?  Do you have a nurse come over and do it?  Do any of you worry about something going wrong and not having someone get to you in time?  I did hemo dialysis at a clinic during my first run of dialysis and would love to look at new options the second time around.

[petey]

When you do home hemo, who puts the needles in your arm?  Do you have a nurse come over and do it?  Do any of you worry about something going wrong and not having someone get to you in time?  I did hemo dialysis at a clinic during my first run of dialysis and would love to look at new options the second time around.

I cannulate (put the needles in) my husband's fistula now that we're on home hemo.  Some people on home hemo even self-cannulate.

We don't worry about something happening and not being able to get help on time.  But, when he was in-center (12 1/2 years), we did worry about it there.

[Beth35]

I am a single mom to two toddlers.  Would this be a safe option for me if I have no other adults living in my home?  It sounds like it has so many benefits.  I used to be really scared of something happening to me on dialysis.  I had two people die in the chair right next to me and it kind of scarred me for life.  It took me the longest time to even transfer from the hospital dialysis clinic to an out patient clinic, because I felt like if I was in a hospital they could save me a lot quicker.

[Bill Peckham]

The way I say it is that dialysis is not dangerous - it is CKD that is dangerous. I would guess that the people who died next to you incenter died from complications of getting too little medicine for their CKD - too little dialysis.

My question about the toddlers would be more about who is watching them rather than who is watching you. You're tied to one spot and can't investigate if it suddenly gets too quiet.

[Beth35]

Both of the men that died had cardiac arrests and they were not able to revive them.  One was an old man and the other was only in his forties.  But scary as heck cause your thinking that could be me.

As far as the kids, you know your totally right.  That never even occurred to me.  So much for that idea.

[Bill Peckham]

Both of the men that died had cardiac arrests and they were not able to revive them.  One was an old man and the other was only in his forties.  But scary as heck cause your thinking that could be me.

Short, infrequent dialysis - conventional incenter US dialysis - results in high UFRs which are very hard on the heart.

Think of a balloon being blown up and deflated again and again, eventually it looses its ability to return to normal. When you need to remove a lot of fluid every dialysis treatment your heart can become like that balloon.

[Beth35]

Very scary.  Would it be possible to have a nurse come to your home for dialysis?  I have heard of that in the past.

[Bill Peckham]

Very scary.  Would it be possible to have a nurse come to your home for dialysis?  I have heard of that in the past.

Some Employer Group Health Plans - private insurance - might cover it but it is not usual. A sitter would be less expensive and easier to find then a home health helper.

[Wallyz]

That sounds like  a great plan Bill- if you can find a reliable sitter who would be able to call for help if there was  a problem, you could dialyze at home, and still be near your kids.  Good luck, and let us know how you are doing.

[Beth35]

Yes, I could always do a sitter.  I just thought the overnight hemo while you sleep would be a cool option since you do it more often and don't have to have such a strict diet.  I don't think I could afford to hire a sitter overnight but I'll keep checking into my options.  Thanks for the ideas.