Home Hemodialysis without a partner

[Frankie24]

I am very frustrated. I want to do home hemodialysis without a partner as I do not have one, however my Nephrologist says no. I belong to a group that has been trained in and does home hemodialysis without partners and do not understand why I could not do the same. Any Ideas or suggestions would be appreciated.

[Hidden]

Look for a private message from me regarding this. I'll give you some information on how to proceed at this point.

[SadMad in reply to Hidden]

I would also like information about doing home hemodialysis without a partner please as I am in the same boat.

[Hidden in reply to SadMad]

Check your PM. Best of luck.

[Bunkin]

I’d find another doctor. I went to talk to PD nurse on Friday and told her my husband would not always be home. She said that was fine I wouldn’t need him. You’re in my prayers 😀

[Charlene_Coxhead in reply to Bunkin]

PD you don't need anyone but HD it is advised because of BP crashes.

[Bunkin in reply to Charlene_Coxhead]

Sorry I completely missed she said hemodialysis! Thanks for the clarification!

[Charlene_Coxhead]

Hi Frankie

I'm Sorry to hear this. Are you in the UK or America as the rules are very different. I'm based in the UK and although they prefer you to have a buddy it can be done alone but they need to make sure you are very stable in the unit first.

I'm just starting training on home HD and although I live alone my dad is going to be my back up. I will do everything like setup, needling etc but if I drop my pressure he will step in.

Have you experienced fainting or black outs or dropping you bp.

You can do PD at home by yourself if your able to swap, but try retalking to your team about it all.

[Frankie24 in reply to Charlene_Coxhead]

Thanks for replying, I cannot not do PD because my kidney are to large from PKD. I have not had any problems in center with my BP, it actually gets to high rather than to low. I am a responsible adult and intend to keep having this conversation with the Nephrologist until she gives in. She is a very good Dr. and also runs the clinic I go to but I don't happen to agree with her decision regarding HD at home on my own.

[Charlene_Coxhead in reply to Frankie24]

I've sent you a private message, hope you don mind x

[music_17]

I agree with asking another nephrologist. While it isn't right for everyone, solo home hemodialysis can be possible for the right person with the right safety measures in place.

[Philipjm]

Hi Frankie,

Big decision to make, I have been on HHD for 18 months now. During training your renal team will assess if you are able to do it on your own.

My wife helps me to connect, I am on nocturnal dialysis , 7.5hours. I disconne t myself, all works really well, I get around 110 litres of clearance, every other night.

The pressures are low so there is less stress on the heart.

I use a Nxstage machine, my lifestyle has been transformed, I am 72, work full time.

The main cause for concern is a drop in BP, was an issue at first but settled down now.

I can and often do it all myself which gives my wife an opportunity to “escape” occasionly, dialysis is harder for my wife than it is for me.

If I do have any issues overnight the Nxstsge team are just a call away and they have always been very helpful and supportive.

I would recommend nocturnal dialysis to anyone who feels they can manage HHD.

If it does not work on yiur own you can always change your mind and go back to In Centre dialysis.

Best wishes in yiur deliberations

Philip

[Frankie24]

Thank you Philip, I am exploring my options at this time. I am still managing to work, however it is not easy at this point with the constant interruption of dialysis in center. Fortunately my employer is wonderful ! I have asked my 26 year old son to go to the center and talk with them along with me. He lives at home still and I promised him it would really not affect his life. We would do it so it was convenient for him as I do not want to tie him down. I don't know if this is an unfair request of my own child though despite his age ? Anyway, I appreciate your comments, Take Care.

[Hidden]

When my husband was on dialysis from 2013 to 2016 we did home hemo only because I was his care partner since he has horrible neuropathy in his hands. We did five days a week for about four hours a session. We were told nocturnal home hemo was not an option, yet I have met dialysis patients from other states that said they have been doing home nocturnal hemo for over a decade. One patient does not have a care partner. Even after the FDA officially approved nocturnal home hemo, the dialysis center he used to go through was still not allowing it right away. I'm rather upset that my husband wasn't offered that modality as we believe it would have been a much better option for him for several reasons.

I would ask your healthcare team many questions about why they will not approve you for home hemo. Hopefully you can get some resolution or find common ground with your team. I understand even as a home care partner how frustrating much of this can be, and I hope you'll have the best options that help you feel your best. Good luck!

[Frankie24]

Thank you for your response, I had conversation with my nephrologist again yesterday. As I have already stated I will continue my quest to find the care I want as I am the one who has to live with my decisions. Dialysis is so intrusive in ones life, at least from my perspective as I continue to work and go about my other activities. I do not feel I should have to conform to someone else's scheduling in order to get my treatment !

[rascal01]

I too was told i could do hd at home on my own. start training next mth. was drs. and nurses suggestion. Would also like info. on this from others.

[Hidden in reply to rascal01]

Did you do your training? Are you doing home hemo?

[rascal01]

was told i could do home hemo without a partner. my son lives with me and my daughter is in same at. building. was very excited. have been on dilaudid for about 3 yrs. due to chronic pancreatis. one of the dialysis center dr. told me i could not do home dialysis untill i go off my dilaudid. told me to take two extra strength tylenol in am and pm. what a joke. primary dr. tells me he has no right in telling this. i have never abused it. and can function on it also. please someone tell me what to do.

[Jayhawker in reply to rascal01]

Have you considered getting a consult from another nephrologist who dies prescribe solo home HD dialysis for some of her or his patients? If you contact several dialysis centers and ask the head nurse at each to help you identify nephrologists who do prescribe solo home HD for at least some of their patients, that might be a good starting point. Then you could contact one or two of those nephrologists asking for a consult...

The nurses who run the dialysis centers know a lot about different nephrologists and so forth.

I shifted to a new nephrologist last May specifically due to an issue with my former nephrologist regarding dialysis. My former nephrologist only prescribed in center HD dialysis for all of his patients. Why? Because he only does in center HD dialysis. So it’s all about him and not what his patients prefer nor what options are actually workable for each patient.

I didn’t just walk away from him; I RAN away from him! In my first appointment with my current nephrologist I affirmed that I wanted to try PD dialysis first. If it didn’t work for me I would then be advocating to try solo home HD dialysis. I then asked him what his thoughts were about each option. He definitely supported me trying PD dialysis first. He talked about PD dialysis at length. He said that he was open to the idea of solo home HD dialysis but would need to know my case better before determining if he thought solo home HD would be safe for me specifically. He then talked about issues related to blood pressure, etc, that could make solo home HD a non option for a patient. It was clear that as long as solo home HD would be safe for the patient, my current nephrologist would be willing to prescribe it for that patient.

Hopefully you’ll be able to find a nephrologist who is patient-centered and committed to working in collaboration with his or her patients.

Let us know how this goes.

Jayhawker