Hi all,
This is my first time on the forum. I'm hoping to learn a bit about the training and equipment required for home dialysis. Specific machines, how long the training takes, how to go about organising training etc? My mum is blind (she's the one dialysing, through a line though, not a fistula) so me, my three siblings and dad want to know how realistic it may be for us to do it with her. We live in London if that matters.
Thanks in advance for any help.
Cal
Hi Call
You should feel proud of yourselves. You are taking on such an amazing thing which will make so much difference to your mum.
I self care at home on nocturnal dialysis. I've dialysed for 26 years.
Hospitals vary in their protocol. There is usually a training programme for those suitable for home dialysis. It can take around 6 months. I suspect they'll want to train just 1 or 2 of you-you then train the others.
As for machines, lots are being trialled across the country now, specifically for home use. I'm on a Braun one. Fresenius are popular and the new nx stage one is smaller. You will need a room large enough for a water purifier, softener, machine and chair /bed. Also storage for stock-there's a lot. It will ideally be adjacent to the bathroom or water supply as it will most likely be plumbed into it.
Whoever is the main carer will learn to connect your mum via her line and how to confidently operate the machine. Safety and hygiene are of paramount importance.
If you speak to someone at the unit where your mum currently goes, they will be able to talk you through it all. It is a big responsibility and you need to all make an informed decision.
Good luck.
Id say very realistic
Training would take in hospital, and the home heamo team would not let you 'go solo' until they are satisfied with your confidence.
Training is roughly the 3 stages of dialysis, preparation and connecting the patient, observation during treatment, and ending the session and disconnecting the patient, plus disinfecting the machine etc.
you can see my setup here: facebook.com/media/set/?set...
Im in London if you want to pop round for a chat.
J
Hello cmf91,
It's great you're doing this for your mum.......
I'm just starting to use a nxstage machine.......first day by myself today....
All of the above advice is really good.....
The only thing I'd add is that you can use it in the bedroom without a chair as long as you have about 2 square metres of floorspace for the machine and a few supplies for immediate use.
Additional storage needed depends whether it is plumbed into the mains water or not. I didn't need a water softener ( I live in london)
If you're plumbed in, less space is needed for storage.
Do keep asking questions as there's lots of people on here with useful experience you share.
Best wishes
Margaret
Hey guys,
Thanks soo much for the positive and helpful replies, we're getting the ball rolling and will hopefully start the training soon. We're luck to already have a bed, chair, hoist, table etc... hopefully enough space. I'm sure the team will work that out. I do have some more questions if that's ok??? what does nocturnal dialysis entail and how much of a difference does it make on your/a patients mental wellbeing? My mum really struggles (understandably) with depression and we're hoping the move to home dialysis will give her the psychological break to encourage positivity and hope... thanks again for all of your replies
cmf91
Regarding nocturnal dialysis- I started it over 2 years ago. Certain machines are not suitable for this, so when you begin training, make you have a compatible machine.
It requires a different set up - ideally only one needle is used- it's called single needle, however for me that didn't work out, so I use two. Always buttonhole rather than sharps, for safety. It makes no difference on a line.
Dialysis is slower and much more gentle, so your mum won't get the usual grotty, headachey feeling she may get after a traditional 4 hr session. Normally patients do 8 hours overnight, 5 nights a week. I do alternate evenings. Once on the machine, no other intervention is usually required. Done properly, nocturnal dialysis is safe. I self care. I have no carer. A nurse comes out once a month to collect bloods.
For me, getting used to sleeping took a while, but now I sleep like a log and only wake up when the machine plays its 'finish' tune!
For me, the benefits far outweigh the negatives. My phosphate, for example, has never been under control. Now, I don't need phosphate binders, my bloods are better than they have ever been, my skin is clearer and I actually look quite well- as you can see on my profile pic. I can be less strict with my diet because each clearance is so good that the jacket potato and coffee won't cause my potassium to go high. I have more energy and quite frankly, I would never go back to 4 hours. On the odd occasion I do, I feel like I haven't had a 'proper' dialysis. After nocturnal, I feel 'cleaner', perhaps only something a dialysis patient can understand. The long term benefits are simple; it's better for your heart as gentler dialysis puts less pressure on it, better bloods mean fewer long- term problems etc.
The main benefit of course is the free days! I can work, go out, whatever I like! As long as I'm on the machine at a time where I can do long enough, that's it. The freedom is the biggest benefit of all. I don't feel, or look like, a kidney patient. After 26 years of dialysis, I'm quite glad about that. Nocturnal is the main reason.
I hope this answers some of your questions. Please feel free to ask me anything you want. I'll be as helpful and honest as I can.
Nikki.
Nikki: Thanks for your comments to cmf91, home hemo sounds like a wonderful option. I started HD 7 months ago after 10 years of PD. I am frustrated with losing 3 days a week to the renal unit as I am quite hopeless after dialysis for several hours. Next day I usually feel really "with-it". What is a "line" (surely not a cannabis joint.....). I have heard of button holes fistulas and grafts (I have a graft). Overnight HD sounds like a positive step forward and I would like to check this out further. What happens if you are a restless sleeper (dragging lines out of the arm sounds creepy!)? I live in Pretoria, South Africa and Fresenius and Braun are over here. I can afford to buy a machine (thanks to my dear departed mother) and would dearly love to find a better way to dialyse. I might have to import a machine & get my local unit to help with the training. My wife can help (but doubt she'd want to do the needling!). 4 hours at a time knocks me about quite hard.
Stephen
PS Your 26 years of dialyis is motivational and inspiring. I will try to match your record (only 10,5 years at the moment).
Hi StephenA
I can't recommend home dialysis enough. Nocturnal dialysis with a graft wasn't allowed here in England until recently : my unit in Nottingham were one of the first.
My buttonholes are very securely fixed and aren't going anywhere! Braun and Fresenius are the two main machines here: both very good for nocturnal dialysis. Here, technical support is provided for NHS home patients. I don't know how it works if you buy your own machine. ..
Like you, 4 hours of fast dialysis left me completely washed out for the rest of the day. With overnnight dialysis, the dialysis flow and pump speed are much slower and the fluid removal is gentler. With a better clearance of 8 hours, you feel generally fresher. In fact, for the first few weeks, i felt quite high! My body wasn't used to being so clean!
A line isn't cannabis haha-it's a catheter from the chest or neck which connects to the machine, usually when there is no fistula or graft access.
Home, and particularly nocturnal dialysis, give you so much more freedom and you can learn to needle yourself. You'll never let a nurse do it again! I have no carer-I do it all myself.
Good luck. I'd be interested to hear how you get on.
Nikki.
Nikki
Thanks for the reply. I would love to do home dialysis if I get the chance. It's a bit more difficult over here in sunny South Africa, but intend to try!
I've had my old PD catheter and HD "line" (I had one all the time since I started HD while my graft was settling in) removed last week and hope that all the surgeries are finally over (until the next one.....) and I can enjoy life more.
Thanks for your words of encouragement to "newbies" and even veterans like me. HD has been a big restriction after the freedom of PD, but I am getting used to it. The needles do not hurt so much now). My renal unit is based in a private house and I refer to it as my country club as the other patients have become friends.
Good luck and I will keep in touch. These sites are so useful for getting advice. I am originally from UK & my family (what's left of us: just my brother now) is over there. I am based in Pretoria and have married a local girl ("girl"? we have both breached the dreaded "6-0"!).
Stephen
Hi Stephen
Yes, patients do become friends. Dialysis is like going to work without being paid! You sit with the same people, are treated by the same staff, week in, week out.
I did try PD many years ago-4 times daily then, as overnight machines weren't available. It wasn't for me and I returned to dialysis after 3 months.
Good luck with aiming for home dialysis. And yes, stay in touch.
Nikki.
In terms of your mum's well-being and mental health : many dialysis patients suffer with depression from time to time. What I would say is do not underestimate the difference being at home will make to her. Good dialysis will help her to feel better. Being able to do this in the comfort of her own home, at a time which suits everyone and having the flexibility to change it is priceless. At home, you feel less like a patient. Not having to make the journey to hospital 3x a week. To have the control over your own treatment. To be with family. All these thing make such a difference. It's tough, coming to terms with the knowledge that you are only being kept alive by a machine. But being able to do this at home is the best possible way to help your mum's feeling of well being, both clinically and mentally.
Good luck.
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