What's your experience with dialysis? Give & get support here

Posted by Rosemary, Volunteer Mentor @rosemarya, Mar 7, 2019

Dialysis is required if your kidneys don’t function adequately on their own. Your doctor will discuss with you the type of dialysis that’s best for you. Dialysis treatment is a serious responsibility, You’ll need to work closely with your health care team who have experience in managing dialysis. Open communication with your health care team is essential to your overall health.

Fellow patients are a wonderful source of support and practical information because of a shared dialysis experience.
If you are a dialysis patient, or loved one of a patient, what are some things that you have experienced that might be helpful to someone who is new to dialysis? What kind of life adjustments have you had to make? How has it affected your everyday life?

@rosemarya Thank you for doing this.

I'm not on dialysis yet but it's probably in my near future if my GFR keeps dropping. I'm not looking forward to it.

The odd thing is that even with high BUN and high creatinine and a GFR of 24, I feel great. No symptoms. . . I'm sleeping well, eating right, have more energy than I've had in awhile, no pain (except from fibromyalgia sometimes,) no itching (other than from the dry skin all my life,) and other than anxiety over impending dialysis am usually quite happy. But I'm irritated at the very idea of spending several hours a day three days a week in a recliner having my blood cleansed, not to mention the travel time involved.

I don't think I can do home dialysis as I live alone except for my service dog Buckey and he certainly can't help with dialysis even if I qualified for one of the newer home dialysis machines.

Going about my day with a bellyful of fluid from peritoneal dialysis doesn't sound very pleasant either.

I guess I'm just totally cranky about all of it. I really need a place like this not just to vent and rant and rave but also to learn all I can. So anything anybody can share would be most helpful even if it's negative because the more I can learn about it from the patient's point of view the better I can prepare.

Thanks again!.

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I was dx with kidney failure 4 yrs ago. Did hemo at center for 8 months, then tried at home PD for 8. My body didn't like the cathoder and plugged it. Went back to hemo at the center again. Both my numbers run high but it's my recent normal. I'm on the kidney list and continuing to find a living donor. There are side benefits from dialysis. Nephrologist see us during treatment, I've developed a pretty close relationship with the techs and RNs. It seemed at first to be a waste of time, but I catch up on sleep, do Facebook, message my family, play games on my pad or watch TV. I stop by stores on the way home afterwards. My labs have improved, and I've been able to reduce the treatment durations a couple times. Oh, and I'm doing better than I thought, too

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@john4pack Thanks so much for sharing this. I was thinking it's a waste of time also. I don't have an i-pad or laptop or tablet, though. Maybe could work crossword puzzles. Sounds like your're pretty stable. Hope you find a donor soon. I'm past the age to get on the transplant list but neph said she didn't think I'd ever need one. Not sure how she meant that.

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Hi @morty @cehunt57 @shiteh @beach757 @abel @jgiovann @joanaiken and @annmariaa. I'm tagging you on this discussion about dialysis.
– What's your experience with dialysis? Give & get support here https://connect.mayoclinic.org/discussion/support-for-dialysis-patients/

Some of you have experience with dialysis. What tips might you have to share with someone who is new to dialysis? What life adjustments have you had to make? How has it affected your everyday life?

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@colleenyoung

Hi @morty @cehunt57 @shiteh @beach757 @abel @jgiovann @joanaiken and @annmariaa. I'm tagging you on this discussion about dialysis.
– What's your experience with dialysis? Give & get support here https://connect.mayoclinic.org/discussion/support-for-dialysis-patients/

Some of you have experience with dialysis. What tips might you have to share with someone who is new to dialysis? What life adjustments have you had to make? How has it affected your everyday life?

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My f-i-l had ESRD/kidney failure. He spent a year or two on dialysis and said “it is no way to live!”. He ended up getting a kidney transplant from a living kidney donor. The living kidney donor was his granddaughter (my daughter). Flash forward 17 years, I have stage 4 CKD and am not on dialysis yet. I’m hoping to keep it that way and am looking for a living kidney donor fora preemptive transplant.

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@cehunt57

My f-i-l had ESRD/kidney failure. He spent a year or two on dialysis and said “it is no way to live!”. He ended up getting a kidney transplant from a living kidney donor. The living kidney donor was his granddaughter (my daughter). Flash forward 17 years, I have stage 4 CKD and am not on dialysis yet. I’m hoping to keep it that way and am looking for a living kidney donor fora preemptive transplant.

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cehunt57 : I hope you find relief soon. I am also CKD Stage 4 and on the transplant waiting list. I am a bit disappointed, as no one is stepping forward that doesn't also have health issues. I feel that I cannot ask anyone. My 29 year old son is thriving right now in his life and career. I also would prefer a preemptive transplant and avoid hemodialysis. I will move forward one day at a time and am grateful for the great support system that I have.
I only experienced hemodialysis in an inpatient setting during my admission for my second liver transplant. I recall that it was tolerable at 3 days a week. Prior to that I was placed on the 24/7 hemodialysis. Have no memory of the first 3 weeks of a 6 week stay due to severe HE. Thank goodness I have not experienced outpatient dialysis at a center.

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Looking like pre-dialysis vascular surgery might be sooner rather than later. Any and all info, even negative, will be appreciated, incl details about vascular port, what dialyssis is like during and in between sessions, etc.

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@kamama94

Looking like pre-dialysis vascular surgery might be sooner rather than later. Any and all info, even negative, will be appreciated, incl details about vascular port, what dialyssis is like during and in between sessions, etc.

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@kamama94 Well, dang it all. Are you able to/have you considered peritoneal dialysis? It is the more preferential way to go, less stressful on your body. But it does require a lot of patient responsibility. My husband was able to do that for 5.5 yrs before his transplant, and it was easier on his body than hemodialysis. He is coming up on his 4 yr transplantiversary on 10/1.
Ginger

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@gingerw, I live alone and have several disabilities including lack of mobility so PD is out. Neph agrees. Looks like hemo is my only route as too old for transplant. The more info I can get the better prepared I'll think I am. Gotta maintain the illusion of at least SOME control. <winky face>

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Dialysis is nothing to celebrate. I am on heleo – was not viable for peritonial. Having "roofing Nails' inserted in your arms is tough (though one DOES get use to it) but you must remain immobile for the entire time (in my case that is 3 1/2 hours). You can't move the arm with the needles – could drive them where they shouldn't be – and my other arm has a blood pressure cuff – any movement and it just keeps on squeezing your arm. I no longer drive from dialysis. Your brain is being scrubbed along with the rest of your blood – I am generally a basket case that entire evening. Despite the negatives, it IS keeping me alive!

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@dhelmstetter, thanks for telling me. I was under the impression that people could work on their laptops during dialysis but that would require arm movement. The needle thing doesn't bother me but being immobile for 3 1/2 hrs doesn't sound like a picnic. Has your care team offered any explanation for feeling like a basket case afterward?

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@kamama94

@dhelmstetter, thanks for telling me. I was under the impression that people could work on their laptops during dialysis but that would require arm movement. The needle thing doesn't bother me but being immobile for 3 1/2 hrs doesn't sound like a picnic. Has your care team offered any explanation for feeling like a basket case afterward?

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I believe it is common. One time the doc wanted me on for 4 hours. I remained a zombie once home and got put to bed after about 2 hours just starting at a spot on the wall. I phoned the next day refusing to go so long ever again… Now I am down to two days a week – I still have limited kidney function and do urinate regularly…

Liked by fiesty76

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@kamama94

Looking like pre-dialysis vascular surgery might be sooner rather than later. Any and all info, even negative, will be appreciated, incl details about vascular port, what dialyssis is like during and in between sessions, etc.

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@kamama94, Oh, I am sorry to hear this. Like you, I want to know as much as possible about my options so I'm sending you added energy for your research in learning more of what to expect. Please keep us informed. Sending cyber hugs your way!

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@fiesty76, Thanks and hugs back! Will keep you posted.

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@kamama94, Good deal. Will look forward to hearing how things go for you moving forward.

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