My Father is ready to give up on dialysis

[Foster15]

I need help my father was put on dialysis after a cardiac arrest in 2017. He knew he was heading towards dialysis because of his Gfr before the heart attack. He is very frustrated with his level of care at the center and that makes wanting to go to treatment 3x a week very hard. He has always been one to ask questions and they get very upset with him when he ask questions about his treatment. He also has a hard time understanding that he truly needs dialysis since he still is able to urinate multiple times a day. He feels as if he only needs dialysis about 2 days a week and he feels better when he doesn’t go. It makes you wonder if everybody body is different why are they all required to go to treatment 3x a week 4 hrs a day? Also if I wanted to report a center how would I go about doing this?

[Jayhawker]

To file a complaint about the dialysis center, this is what you should try first:

1. Ask your facility to provide you with a complaint form or call your facility's quality assurance hotline if they have one.

2. If you still feel like your concerns aren't being addressed, arrange for a meeting with your social worker and/or facility administrator.

3. If these two actions don't resolve the situation you can file a complaint directly with Medicare.

Is your father eligible for in home dialysis, I.e., either in home HD dialysis either with a care partner or solo in home HD dialysis? The other in home dialysis option is PD dialysis.

When your father (and you) talk with his nephrologist about frequency of HD dialysis treatments, you might also ask about in home dialysis options for your father.

It is certainly not acceptable that those who are there to provide care for you father in center are creating a situation that causes him to contemplate discontinuing treatment. They are there to care for him.

Some dialysis centers allow patients to learn how to provide some of the HD treatment to themselves independently in center. If the center your father is attending allows that, it might be worth exploring that option for your father as well as the center. I'm definitely the type who would prefer to provide as much of the treatment to myself independently either at home or in center as possible.

Marj

[Ladybug_05]

I was on Hemo in-center for the first few months of my dialysis journey before switching to Perotineal dialysis. I too was able to urinate multiple times a day and felt better on the days that I didn't go to treatment, but my kidney was able to produce urine since the rest of the filtering came from elsewhere.

I've talked to other hemo patients and it's a common trend to feel terrible on the days that you receive treatment, due to the dialysis machine doing 2-3 days worth of filtering in 4 hours. It's pretty rough on the body and I personally kept getting disequilibrium syndrome from losing 2+ lbs in 4 hours. If he really feels that he only needs to go twice a week, talk to the nephrologist and see if it's something that can get worked out. It's also worth noting that his treatment isn't set in stone and can be tweaked to better fit his needs. I would often have to tell the dialysis nurses at my center what my treatment would be that day so I wouldn't have too much fluid taken off. There is also in-home hemodialysis and Perotineal Dialysis options if he qualifies! Good luck to you both.

[1958Omega]

I agree with the other replies. After three years of hemodialysis I worked up to three days a week for six hours per session. This gives me a better cleaning result. I have around the clock Nausea and extreme fatigue. Both my kidneys and liver were killed by a post foot surgery sepsis infection. I’m not a transplant candidate so dialysis is my only option to stay alive. Your Dad needs to give himself time to adapt to it. Every missed session instantly raises the patient’s odds of keeling over dead by 30%. He needs to attend and get through each session. I use IV Benadryl and Zofran each treatment and it lets me sleep through each session. I listen to classical music through headphones which blocks out the clinic noises. I feel for your Dad. My ability to urinate went from a lot in the beginning to a small amount now. I was offered hospice care when diagnosed as even in the best circumstances living for more than four years with two failed organs is rare. I’m 53 with a wife and two teenagers. As much as I hate dialysis I follow it strictly for as much time as possible with my family. I hope things go easier for your Dad.

[Yat83]

Hello

I’m Kenyatta (Yat) first and for most NO nurse, technician, dr, dietitian etc should be upset your father is asking questions. You can always switch drs and units there is no reason for your father to stay at that unit if this continues. You can reach out to Medicare and Medicaid (if available) the dialysis unit should of have gave you and your family papers when he first started going there about who to call if there’s a problem. Yes everyone body is different from

Others.! Just because he still urinate doesn’t mean he don’t need dialysis 3x a week. Is his blood getting cleaned without dialysis..? How’s his fluid gains in between treatments..? Have he thought about doing home dialysis? But you have to do that everyday. I know this may be hard battle but trust me I know. I’m

35 single mom

Of two children I’ve been on dialysis 9 years I’ve been on home dialysis and going to the center. Some days are better then others.! Trust me I know. I get up everyday for my children and myself but more so my children. Tell your father hang in there. I can’t say things will

Get Better but some days may be more tolerable then others

[lowraind]

One other point: palliative care is an option, and it is up to your father to make the choice.

[celoaffect]

I'm sorry your father is having to through this it isn't easy by any means.

I am going on 18 years on dialysis

(32 yrs old).

I've been through countless surgeries and procedures due to dialysis and my illness (FSGS).

Since the beginning (at 9 yrs old) I always felt that if I changed my diet/lifestyle I could rejuvenate my kidneys but I was too young for my opinion to hold any weight and drs said that wouldn't work so we listen to the "specialist".

After years of hell I decided No More I will do my own research and see what can be done.

That opened pandoras box for me.

I became my dr. I joke around calling myself a street nephrologist.

I came across different ppl on YouTube (Dr. Robert Cassar, Dr Bob Beck, Dr. Sebi), they gave me the confidence to do what I felt I always needed to do.

Long story short I went to this retreat in Hawaii were I did a 9 day water fast and did different Protocols to heal myself.

I felt amazing when I back the main land I was doing so well my blood pressure so normal and had two different nephrologist say they'd never seen Hemoglobin levels that good in a dialysis patient. I have to give credit to a holistic vegan type of life style.

But by my kidneys are way to damaged for a simple nine day fast. I still have my ups and downs due to a life sentence of Hemodialysis.

Still to this day I believe I can heal my kidneys the only problem once your sick it's hard as hell to reverse the damage.

Now if your father urinating thats awesome but the question is he filtering out all the toxins?

What is his kidney function percentage?

And honestly more than 8 years of research I believe he can heal himself.

By changing lifestyle (this will be hard).

Fasting (for many days), through diet change (Dr Sebi diet).

drsebiscellfood.com/nutriti...

Mediation, breathing techniques

(Wim Hof Method, helps reduce stess/anxiety).

youtu.be/zM_HHhcu2u4(Not working as expected?)

This will help. Fyi it should be difficult in the beginning but if you're consistent and disciplined it'll get easier with time.

As far as the unprofessional treatment from drs/nurse (I have plenty of horror stories), thats just the way it is their people at the wnd of the day and many shouldn't even in that field; it's all about the money.

Try to find a dialysis kidney advocate.

homedialysis.org/news-and-r...

I hope this helps in some way, I just feel you your pain wanted to reach out.

Sincerely 🙏

Marcelo