Dialysis Options: In preparation for dialysis... - Kidney Disease

Kidney Disease
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Dialysis Options

Frankie24
Frankie24

In preparation for dialysis which I hope will not happen, I need to make a decision about center or home. I have been doing a lot of research. I am wondering about people's experiences. I would like to do home dialysis, but do not have a partner, is this really necessary ? I do know people who do it on their own ? I am continuing to work on my diet and hope to stay at 13% or improve and still hoping my living donor will come through.

13 Replies
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When I first was told I had CKD I spent a lot of time learning about it and what I could do to slow it down. I'm still doing that, but I'm also looking now at the differing modalities so that if I have to make a decision on doing dialysis I'll be ready. I've found some websites that I use and will be providing you with the links. Check carefully each site and find out which gives you the best information. I've ruled out transplantation and PD for myself. I'm looking at HHD more than HD in a center. The Buttonhole Technique allows you to do HHD without a partner and the local center you have will teach you what you need to know. The information from these sites has been a great help in focusing my research and if I have to make that decision in the future, I'll be ready.

homedialysis.org/home-dialy...

nxstage.com/

homedialysis.org/documents/...

mydialysischoice.org

While I'm not a fan of books on CKD diets and such this one I ordered and it helped me learn about my wants and needs with each of the modalities. It was helpful to me and that's all I can say. I refer to it as often as I need to, especially after I get an e-mail or post about dialysis and something different coming down the road I should consider. Hope it helps you as well.

store.mei.org/help-i-need-d...

Frankie24
Frankie24
in reply to Mr_Kidney

Thank you, I will be checking these out for sure !

Mr_Kidney
Mr_Kidney
in reply to Frankie24

Add this to the list of information to help make your decision. It arrived in my inbox this morning and I'd thought I'd pass it along to you and anyone else looking at making a similar decision.

freseniuskidneycare.com/~/m...

KidneyCoach
KidneyCoachNKF Ambassador
in reply to Mr_Kidney

doing HHD at home alone was FDA approved (with NxStage) a couple of years ago. Some clinics won't abide by the rulings so be sure to check out the clinic that will allow it if that's what you want. Also doing HHD at home alone is not dictated by "buttonholes". I've done both buttonholes and sharps and it was not predicated on if I had a care-partner available, so again ask when you talk to the clinic you're interested in. I've done in-center, conventional home hemo, nocturnal home hemo, PD and extended HHD. If I could go back 16+ years I would definitely choose PD first. Best of luck. Blessings

Why did you like PD best?

KidneyCoach
KidneyCoachNKF Ambassador
in reply to miketrial

more freedom, easiest to use and no needles.

I am in the same position myself with about 13% eGFR. Went to the local dialysis centre on Wednesday for an explanation about the methods. Was then asked to go away and have a think about which one I wanted to do. To be honest I have no idea. I think the size of the HD machine and all the other bits of equipment came as quite a shock. I have my wife at home and grown up children and hopefully soon grandchildren so in some ways I prefer going somewhere away from home for treatment rather than having all that equipment installed at our home. But that said the closest centre is an hours drive and parking is a nightmare so I am sure going through that and the treatment 3 times a week will be hard. I guess that you could start at the centre and then once you get familiar with the process and equipment then you could decide to get it installed at home? I have heard that you can get a lot of mutual support from other people attending dialysis rather than doing it all alone so that may be something to consider. In the meantime best of luck on the diet and hopefully we can delay dialysis for a good while yet!

KidneyCoach
KidneyCoachNKF Ambassador

check out kidneyschool.org doing HHD at home alone was FDA approved (with NxStage) a couple of years ago. Some clinics won't abide by the rulings so be sure to check out the clinic that will allow it if that's what you want. Also doing HHD at home alone is not dictated by "buttonholes". I've done both buttonholes and sharps and it was not predicated on if I had a care-partner available, so again ask when you talk to the clinic you're interested in. I've done in-center, conventional home hemo, nocturnal home hemo, PD and extended HHD. If I could go back 16+ years I would definitely choose PD first. Best of luck. Blessings

The Buttonhole Technique may not be the only way to do HHD but it is the suggested way to do it if the patient has an issue with needles and if a care partner is unavailable. PD may have worked for you and many others but age, activity, and body type are more restrictive than the other methods and while I'm not advocating any method I applaud anyone who has done their research and made the choice they feel is best for them.

KidneyCoach
KidneyCoachNKF Ambassador
in reply to Mr_Kidney

Actually PD was never effective at removing toxins but it was much easier than doing HHD. I wasn't allowed the opportunity to go on PD until 10 years after being on HHD. By then I'd had many more abdominal surgeries which likely contributed to PD failure in myself. I would agree that each person must decide what is right for themselves. It is not a one size fits all. Most importantly each clinic even within the same region may train differently and will have their own unique set of rules and protocol regarding needles, care-partners and more so be sure to check them out beforehand. Blessings

What has your experience shown you as to the willingness of the centers to be forthcoming with the information you need? Just based on the knowledge of what has happened in the last year I would surmise that Fresenius might be more open to HHD since they purchased NxStage, but that is just an assumption on my part. I have a DaVita operated center near me but should I ever need dialysis, I would travel to a location close to a Fresenius center if required. That is assuming that should that decision ever need to be made that I'm still looking at HHD. Thanks again for sharing your information.

Thank you for your insight. I am looking to keep my daily life as normal as possible due to work and such. I truly hop I can do nocturnal home hemo. I will check out the sight you have mentioned. My Best to you.

I personally enjoyed PD. I was terrified of home hemo and also didn't want to get a fistula. It was quite simple and I was able to do my treatments while I slept. I woke up, unhooked myself from the machine, and went on with my day as normal. Everyone has a preference though. I did that for 2 years before I received a transplant. I would definitely look into both options and choose whatever you seem more comfortable with. I wish you the best

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