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Author Topic: Thinking about home hemo. Is it possible?  (Read 1757 times)
Aaisha.Dar
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« on: September 21, 2018, 09:50:10 AM »

Hi all, Ive been on dialyais for a total of 7 years. 6 on peritoneal and 1 and a half hemo. It just came to mind that maybe I get info on home hemo. I am in school I feel a day is wasted because I am tired because I wake up at 5 am and come home at 10. Anyways, I have a cvc line. Is it possible to go on home hemo? What are things to consider? Is it better than in clinic?
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KatieV
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« Reply #1 on: September 21, 2018, 11:27:58 AM »

Most home dialysis clinics will NOT let you go home with a CVC line.  The risk of infection - even if you are extremely careful is just so high!

I did use a CVC line at home for about a year without problems.  Then I had an infection - a couple day hospital stay while the line was removed, IV antibiotics, and a new line placed.  A few months later, another infection!  At that point, they scheduled a major revision of my fistula, so that I could use it again.  I was pretty nervous, but once I was trained it hasn't been a problem.  You probably have mentioned why you have a CVC line instead of a fistula, but if at all possible, I feel the fistula is the way to go! 

This last round of dialysis, I was in-center for 1 year before switching to home hemo.  I did not do well - I lost 70 pounds without trying and suffered from migraine headaches.  It was very rough - I was working full-time, going to dialysis 3 nights a week, and then driving an hour home (often with an awful headache) at 9 pm!  I feel a lot better on home hemo.  If I happen to have a rough treatment (very rare), it's a short walk to my bed! 

It is a big time commitment.  I do 5 treatments a week of 3 to 3.5 hours (running, so consider setup and cleanup time too).  You also need a dedicated caregiver to assist you, or at least be around for emergencies. 
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Simon Dog
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« Reply #2 on: September 21, 2018, 02:06:23 PM »

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You also need a dedicated caregiver to assist you, or at least be around for emergencies.
Nope.  The NxState if FDA approved for solo non-nocturnal hemo.   The last time I talked to my MD about this he mentioned that Fresenius had 84 patients on solo home hemo.
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rcjordan
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« Reply #3 on: September 21, 2018, 04:25:31 PM »

My doc tentatively approved solo nxstage since there could be times my wife is unavailable due to her own health or family emergencies.  I'm waiting to get the fistula working before I pursue it further.

>84

The letter nxstage sent out mentioned that a survey of patients said about 15-20% indicated they were already doing the occasional solo.
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Coastal US, NE North Carolina
2018 right nephrectomy - cancer. Left kidney not filtering, start hemo. After 3 months, start Nxstage home hemo
Aaisha.Dar
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« Reply #4 on: September 21, 2018, 05:05:30 PM »

I read some info, seems home hemo is much more complicated also all the supplies abd stuff
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Simon Dog
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« Reply #5 on: September 21, 2018, 06:31:04 PM »

I read some info, seems home hemo is much more complicated also all the supplies abd stuff
It certainly is, and you have to needle yourself.  Home generally uses buttonholes - same hole reused each time with a dull needle.  I used one hole for over 5 years.

There are a lot of supplies delivered monthly, and it requires knowledge and dedication on your part.   In the 5 years I did it on NxState, I made fewer mistakes (0) that the clinic did 7 months (3).

It takes the right personality type - some will love it (I did), and some will hate it and go back to the clinic.
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rcjordan
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« Reply #6 on: September 21, 2018, 07:05:02 PM »

Yes, there are a LOT of supplies to deal with. One of the issues is storage, we have 3 large closets packed with supplies right now, to give you an idea.  Another is weight. Dialysate is heavy. And all the incoming freight makes for a pile of boxes and bio-trash needing to be hauled away.

That said, it's still a great option for care and you should definitely consider it. It allows some flexibility in your schedule; we can shift a day if need be, or change the hours we're going to do a session from evening to morning.
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Coastal US, NE North Carolina
2018 right nephrectomy - cancer. Left kidney not filtering, start hemo. After 3 months, start Nxstage home hemo
Simon Dog
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« Reply #7 on: September 21, 2018, 10:04:08 PM »

Although dialysate is heavy, the Fresenius delivery services brings it to the final location and stacks it according to your instructions.

You will probably need an extra recycling bin for the boxes.
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kickingandscreaming
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« Reply #8 on: September 25, 2018, 08:57:28 AM »

Using buttonholes for needling is clinic dependent.  My clinic doesn't approve of them (infection risk) so if I were to do home hemo from my clinic I would have to stick myself with big sharps.... everytime.  For me that's a non-starter.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
komomai
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« Reply #9 on: November 14, 2018, 11:35:14 PM »

Aloha All,

Anything is possible, I'm doing home hermo dialysis here in Okinawa, Japan.  With the proper training and a good partner (wife) it can be done.  I love it as i'm on my schedule to do my dialysis.  If I'm beat I skip a day, but I try for 6-7 times at 3 -4 hours each.  I'm using a tunnel catheter as I tried to do a fistula but not good.  I was able to continue working and now that I'm retired my schedule is when I want, I've done it at 1 A.M. binge watching my TV.  Good luck with whatever you choose. :guitar:
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Simon Dog
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« Reply #10 on: November 15, 2018, 06:38:32 AM »

Using buttonholes for needling is clinic dependent.  My clinic doesn't approve of them (infection risk) so if I were to do home hemo from my clinic I would have to stick myself with big sharps.... everytime.  For me that's a non-starter.
As I remember, you live in the eastern part of the DPRM.   The Fresenius clinics in Framingham and Marlborough (and probably many more, those are the only two I used) both support home buttonholes.
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Mr Ken
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« Reply #11 on: November 15, 2018, 06:44:35 AM »

Fresenious does have a home Hemo unit. The reverse osmosis unit is quite large...... Also you need to make sure you have proper electrical -probably 20 amp plug. Water plumbing....... Need a constant supply of water Look at everything before you decide and talk to patient that do it not just the used car sales people of the dialysis centers. Oh it is easy we help you every step of the way....... Even if you went the PD route you are still looking at a lot of supplies. Around 1000 pounds delivered monthly. The dialisate solution bags are a pain......

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Simon Dog
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« Reply #12 on: November 15, 2018, 07:18:31 AM »

There are two Fresenius units - Baby K - very similar to in-center machines, uses same filter and NxStage which is smaller, but requires more treatments per week.  The later uses a regular 15A circuit and has long tubes for water supply and drain.  The Baby K needs a dedicated 20A circuit.  (the manual says 15A, but Fresenius requires 20A)

There is some benefit to more treatments per week, as the fluid removal per treatment is smaller.  A "big gap" on NxStage is skipping one day between treatments, not two.

The Baby K uses a continuous flow of water.  The NxStage makes dialysate in advance of treatment, and does not use the house water supply while treatment is in progress.  The NxStage is designed to work with a slowed dialysate flow rate.

Quote
Oh it is easy we help you every step of the way.......
My clinic told me you have to be really committed to make home hemo work, and not everyone can do it.  The claim of being there to help with every step is accurate.

Quote
With the proper training and a good partner (wife) it can be done.
The NxStage is now approved for solo (partnerless) home hemo.   I did it myself (all setup, hardware/supply management, canulation and needle removal, monitoring treatment, etc.), with my wife available to assist if I had a problem or needed to reposition a needle.
« Last Edit: November 15, 2018, 07:23:52 AM by Simon Dog » Logged
Vt Big Rig
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« Reply #13 on: November 25, 2018, 10:59:09 AM »

We keep supplies in one closet and the emergency dialysate in the garage. The closet is in the room we do dialysis in so we don't feel we are using up space. In my case my care partner is essential. I know there are folks that do solo but I have not been able to cannulate myself.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Simon Dog
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« Reply #14 on: November 25, 2018, 12:17:16 PM »

We keep supplies in one closet and the emergency dialysate in the garage. The closet is in the room we do dialysis in so we don't feel we are using up space. In my case my care partner is essential. I know there are folks that do solo but I have not been able to cannulate myself.
How does that work with VT winters?  Do you heat your garage?
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