Home Haemo (....and Nocturnal) "the way of the future!"

[Bear]

   G'day all...."ReRun" suggested I do this as a topic, so here goes 
   The ol'Bear has been in ESRF for over 2 years now. I had a wasted year or so on P.D. (it didn't do the job for me).
Then my Neph. advised me it would be better for me on Haemo & that they ran a  Home Haemo program at the hosp.
(Princess Alexandra H., Brisbane Queensland, Aus.) ,  that had been going since '03 and which she reckoned was
"the way of the future!". But not only that, I would 'graduate' to nocturnal dialysis, if I wanted.
Started in Canada in (I think) '01, nocturnal home dialysis, as far as I know, is only done in Canada & Australia.
   First off, doing Haemo @ home is so much better than in a hospital unit, apart from the lonileness & lack of camaraderie
because you can do it when YOU want to & not according to some arbitrary dept. schedule. You can also do it for
longer - I tend to do about 6 hours on Tues & Thurs, between 4.5 and 5 on Saturday a.m. (depending on social stuff),
and about 4 hours on Sunday evening. SO I end up getting between 20-22 hours dx per week. I work Mon/Wed/Fri.,
in an I.T. desk job, altho I had 6+months off, the latter part of '05, while I recovered from fistula op., did Haemo training
 & got machine, r.o. & water setup delivered & installed @ home. SO now all my annual/long service/sick leave are all
used up and the world trip is off      
   Earlier this week I signed up for the nocturnal, so will be starting in March.
   THe nocturnal people do between 8 and as much as 10 hours, alternate nights/4 nights a week.
   They are mostly off all their medications (b.p., phosphate binders, &c), because @ 32-40 hours a week,
they are getting so much/so good dialysis, that they are not needed. A very small number actually need
phosphate  additive in their solution! Their dietary restrictions are virtually nil, altho they do still have to be
sensible with the fluids.
   By doing longer hours (as I said my mid-week ones are already 6hours, nocturnally I'll probably do 8  ,
you are getting more/better use out of the same amount of gear (dialyser, lines...). We do NOT do
re-use of anything here. With our climate (sub-tropical here) and getting warmer, we even have to
dialox R.O. units more often. We also run the disinfect cycle on the machine before & after dx.
   Geelong Hospital in Victoria, Aus., were the first to kick off home haemo & nocturnal haemo in Aus.,
following a study they did into Renal costs & outcomes. IN a Home Haemo unit, each nurse can look
after up to 40 patients. Whereas in an in-center unit, it's about 2-3 at a time. For the cost of a nurse
salary,  you can buy 3 dialysis machines. Patients spend less time back in hospital with complications &c.
   I'm feeling so much better on dialysis anyway, especially getting 20+ hours, and now they are telling
me how much better again I will feel on nocturnal...well!!???
   I hope this spreads rapidly elsewhere. Check with/lobby/harass your local health authorities to get
Home, at least, and preferably Nocturnal Home Dialysis !! DOn't tell anyone it was ME who said to, tho
 

[Rerun]

That sounds pretty interesting.  I think I could do it because I don't move much when I sleep.  You'll have to keep us posted when you start this process.   

[Epoman]

Hi Bear,

Welcome to the board and great post, alot of good info. However I noticed you mentioned in your post that you believed NHHD was only offered in the Canada and Australia well I assure you it is offered in the U.S.A. too in fact there are MANY centers in the U.S. who offer NHHD. In fact they have so for a number of years.

I personally don't know if I would want to have needles sticking in me while I try to get a good nights sleep. I couldn't lay on my side like I like and sometimes my arm goes numb from keeping it perfectly still for 3 hours and plus I move alot when I sleep so I think I would cause an infiltration in my fistula. Plus the fact that my fistula would get more wear and tear, compared to just 6 sticks a week I would get 14 needle sticks a week.  

Plus the fact I like only having dialysis 3 times a week NOT daily. It would be a constant never ending reminder that I'm sick. I really enjoy having 4 days a week with no dialysis. I don't care how better you feel than me the bottomline is you still have kidney failure like me and ultimately you may live longer than a person who just goes 3 days a week but that means you will ultimately live on dialysis longer. Personally I'd rather live shorter and have much less dialysis, then live longer and have dialysis everyday of my life.  

Plus I myself am married so what about sex? too me it would be "hey lets have sex, but don't forget you have to hook me up to the machine afterwards."   If anything just regular Home Hemo is the answer. 3 days a week, whenever you want, in the comfort of your own home and not having to listen to "Tagalog" spoken at 100 mph by 4 different techs simultaneously.  

I think daily dailysis is a step BACKWARD we want NO dialysis or at least once a week dialysis. Dialysis has over the years since its beginning has gotten shorter and shorter, less days, less hours, better machines. And people are living much longer, so mortality rates can not be an issue with just 3 days a week hemo compared to daily. But this is all a moot point anyway because in 20-25 years dialysis will be different than it is today, maybe even non-existant.

[Bear]

Tsk, tsk, Epoman, you were not paying attention!!!   
I did say in the original post that nocturnal was -alternate- nights... or 4 nights a week for people who want
to do it on the same days each week, because of work etc.  So you would only be 'stuck' the same number
of times per week, you'd get better & less exhausting dialysis and your daytime would be free.
Sure you'd either have to have sex on alternate nights....or slip quietly away, where others would perhaps
be having a cigarette       ...or maybe you could have sex in the daytime. **
You are supplied with a foam thing to go around the fistula and 2 moisture detection pads - one for your
arm & one for under the dialyser, so any leaks & you're buzzed awake. THey tell me some of the patients
are quite animated when they sleep & there've been very few probs.

**btw you are luckier than me, as I got so low before getting treatment, my libido is almost non-existent.
Altho they seem to think it will come back..   

[Epoman]

Tsk, tsk, Epoman, you were not paying attention!!!   
I did say in the original post that nocturnal was -alternate- nights... or 4 nights a week for people who want
to do it on the same days each week, because of work etc.  So you would only be 'stuck' the same number
of times per week, you'd get better & less exhausting dialysis and your daytime would be free.
Sure you'd either have to have sex on alternate nights....or slip quietly away, where others would perhaps
be having a cigarette       ...or maybe you could have sex in the daytime. **
You are supplied with a foam thing to go around the fistula and 2 moisture detection pads - one for your
arm & one for under the dialyser, so any leaks & you're buzzed awake. THey tell me some of the patients
are quite animated when they sleep & there've been very few probs.

**btw you are luckier than me, as I got so low before getting treatment, my libido is almost non-existent.
Altho they seem to think it will come back..   

Oh ok 4 nights a week I think I can handle.  I am currently checking out my options for home hemo but I live in an apartment and I'm not sure it it is feasible yet. I have been reading alot about nocturnal and it almost sounds to good to be true. But I will be doing my research and if it's possible I may give it a try. I have a 8 year old son and it would be great to see my grandkids but being on 3X week I don't think that will happen.

- Epoman

[Bear]

Yeah Epo', the nephs say long-term nocturnal gives a way better prognosis for those on it.
They are only doing the same number of sessions, but, in some cases, twice as much dx.
THeir blood figures are better, medication lower, etc. Perhaps it could even improve your
osteo probs. I would hope so. I'm sure there's some way they could fit it up in an
apartment - they put em in all sortsa dwellings here. They say they have learnt a lot about
osteo in the studies since its inception (in Canada's case that's 5 years)
Were you on a lot of phosphate binders over that time, incidentally?? Even @ P.D., they
were very adamant about the need to take them all, at all meals/snacks & the horrible
effects I would suffer if I didn't. (I carry them as religiously with me as I have with ventolin for
my asthma all these years! )
AS part of sigining up for nocturnal I had to sign for sleep disorder clinic (I spent the night
wired up in there Monday) and bone density biopsy @ 12 months (altho they said they may
have completed their tests by then), plus cardio-vascular, which we do anyway...

[Bear]

...well I've completed 2 weeks of nocturnal @ home now. Not really sleeping, so it's a good
job I'm doing it after workdays (Mon/Wed/Fri), so's I can go to bed for a few hours to catch up
on my sleep when I come off on Tue/Thur/Sat. 
So, O.K. I'm not getting much sleep ( but hopefully that'll improve ), but since we have to do
bloods before going on & after coming off once a week & we get a copy of the results, it's
amazing to see the changes in the figs.!!
cholesterol is just under normal range; sodium ditto; haemoglobin's 110; and almost everything
is in "normal human" range. Creat. in still up, but coming off is like 1.5-2 times 'normal human',
but since it's been up to6 times that high, I'm quite pleased.
If I keep to my current schedule - 3 x 8.5 M/W/F & 1 x 6.5 on Sunday evening, I'll be getting
32 hours dx a week. 50% more than daytime haemo; double what the poor old in-unit patients
get.
My only prob., is that despite having buttonhole access, I sometimes can't get the 2 blunts in
up front & have to use a sharp to establish entry on one of 'em, then swap to a blunt...
...this can be very fiddly & messy, with blood from my upper arm fistula firing like a fire hydrant,
between removing the sharp & getting the blunt in, in its place!

[Rerun]

Wow that is great.  You might have mentioned this elsewhere, but do you have someone there with you?  Married or someone in the house?         I don't sleep either and I'm on regular dialysis!!! 

[Bear]

yes I have mentioned, but you're forgiven for missing it.
I have been married for 30+ years!!! My wife is partially disabled & is a teacher (4th grade)
She did not want to do the training with me for various reasons. She would have had to
take a helluva lot of time off work for a start!!!...& since she thought she might end up
the 'breadwinner', with me being so worn out all the time (esp. before & during my year+ on P.D.!)
that it looked likely that I would finish work.
Since I'm always 'cursing & swearing' at things when I am preparing to go on  , she says she doesn't
know when I'm really calling for her assistance or not! 
Anyway, where most of the people at Home Haemo were learning as couples, I was one of the few
to have done it alone, so I'm quite 'happy' sorting myself out in my little room.
I've just got cable extended in there & currently(well, when I go home) am watching the COmmonwealth Games
.....which, since your lot decided to pull out of it 200 years ago, is now dominated by Australia 
.....when I was a kid it was still "The Empire", with all that pink on the map & "The Sun never sets on.."
NOw it's great to see all these places now independent, but still happy to stay in (or return to in the case of South Africa)
the British Commonwealth.     ..."By Jove"   "Top Hole!"  "Wot wot!"  etc.   

[babi68]

There was talk about doing nocturnal here in Canberra but it is now on hold. They asked me if I was interested and to think about it, but I decided not to. When I was on P.D. I found I didn't have the room to store all of the supplies and it was a little invasive. Maybe ask me again in 10 years time and see how I feel.(hopefully had a transplant by then)... and Bear, aussie, aussie, aussie, oi, oi, oi.....Liz

[Panda_9]

At first it is hard to sleep, because obviously you are not normally hooked up to a machine at night. It took me about 2 weeks to get used to it. You CAN lay on your side, and you dont have to keep your arm completely still. I lay on my side or back, and sometimes my stomach if the pressures dont play up. I have my arm resting on a pillow. When Im laying on my side I put the pillow on my side/hip, and my arm up on it. I have my arm bent enough so its comfy. The machine will soon yell at you if your arm isnt right. I set the venous pressure limits at 25-145, so there is a bit of leeway there, and I rarely have alarms during the night.

[Panda_9]

I forgot to mention the important bit.....your sex drive does improve!!! I have gone from having none at all, to almost back to normal. You have plenty of time in between treatments to do it! LOL You have 2 whole days free between each treatment, and alternate nights. And who says you can do it while your on the machine?? Just let the other half do all the work!! PMSL

[Rerun]

Thanks for the visual. 

Please watch the content.  We want all ages to be on the site reading this. 

Second Warning.  Rerun~ Moderator

[dialysta]

bump

[kimness]

My partner started nocturnal dialysis 6 months ago and it's going great. He dialyses every second night for 8 hours while sleeping. At first he had a bit of trouble keeping still and the alarm went off quite a lot the first few nights but now he's used to it. Sometimes he gets a bit of a numb arm or is uncomfortable but most of the time it's fine.

We had tossed up between normal home haemo and nocturnal and decided nocturnal was the way to go. He is now back at work full time, which would have been a struggling trying to fit in dialysis sessions in the evenings, and we only worry about dialysis every second night. He is also off nearly all his medications, still takes PB with breakfast and lunch and injects for haemoglobin once a month. He has little to no mood swings, is no more tired than a healthy person and our sex life is fine!

[Bajanne]

Hi Kimness!  Thanks for sharing with us.  What we would like you to do is to go to Introduce Yourself, and do just that.  We are glad that you found us, and we know that this website will be a great aid to you.  We have quite a few people here who are here because of their significant other, just like you.  They are a very special part of our community, just as we would like you to be.