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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?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

wickenburger | @wickenburger | Sep 13, 2020
In reply to @kamama94 "@wickenburger, you sound like me. I'm one of "those" patients, aka "difficult." I have a medical..." + (show)
@kamama94

@wickenburger, you sound like me. I'm one of "those" patients, aka "difficult." I have a medical background and am intelligent enough to know when something's not quite right. When I injured my leg right after placement of my permacath and couldn't transfer from bed to wheelchair and back or chair to toilet and back, I pitched a fit when I learned they were going to send me home. They offered nursing home placement and I had another hissy fit. Ultimately they decided it was best to admit me to the hospital for a few days, dialyze me there and let my leg rest from the soft tissue injury so I wouldn't go home and fall flat on my face. You're right to inform yourself and to advocate for yourself and if that makes you one of "those" patients known as "difficult," I say you go girl!

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I was in the hospital a few years ago with horrible c-diff infection and a young nurse would not change out the IV line that had been in my inside elbow for a week. And was very painful. He kept asking me if I knew what day it was the year who the president was. When I realized I was being evaluated for mental capacity I was furious. So disrespectful. These past few years have been eye openers.

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2 replies
bustrbrwn22 | @bustrbrwn22 | Sep 13, 2020
In reply to @wickenburger "I was in the hospital a few years ago with horrible c-diff infection and a young..." + (show)
@wickenburger

I was in the hospital a few years ago with horrible c-diff infection and a young nurse would not change out the IV line that had been in my inside elbow for a week. And was very painful. He kept asking me if I knew what day it was the year who the president was. When I realized I was being evaluated for mental capacity I was furious. So disrespectful. These past few years have been eye openers.

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OMG. These are horrible experiences. But like my husband always tells me “not all doctors graduate at the top or middle of their class. These stories frighten me. I am sorry you experienced these things.

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bustrbrwn22 | @bustrbrwn22 | Sep 13, 2020
In reply to @kamama94 "@wickenburger, you sound like me. I'm one of "those" patients, aka "difficult." I have a medical..." + (show)
@kamama94

@wickenburger, you sound like me. I'm one of "those" patients, aka "difficult." I have a medical background and am intelligent enough to know when something's not quite right. When I injured my leg right after placement of my permacath and couldn't transfer from bed to wheelchair and back or chair to toilet and back, I pitched a fit when I learned they were going to send me home. They offered nursing home placement and I had another hissy fit. Ultimately they decided it was best to admit me to the hospital for a few days, dialyze me there and let my leg rest from the soft tissue injury so I wouldn't go home and fall flat on my face. You're right to inform yourself and to advocate for yourself and if that makes you one of "those" patients known as "difficult," I say you go girl!

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But it shouldn’t be this way!

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1 reply
wickenburger | @wickenburger | Sep 13, 2020
In reply to @bustrbrwn22 "But it shouldn’t be this way!" + (show)
@bustrbrwn22

But it shouldn’t be this way!

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Glad it went your way. My dialysis tech told me I am the queen of the eye roll. Ha ha

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jolinda | @jolinda | Sep 13, 2020
In reply to @wickenburger "I was in the hospital a few years ago with horrible c-diff infection and a young..." + (show)
@wickenburger

I was in the hospital a few years ago with horrible c-diff infection and a young nurse would not change out the IV line that had been in my inside elbow for a week. And was very painful. He kept asking me if I knew what day it was the year who the president was. When I realized I was being evaluated for mental capacity I was furious. So disrespectful. These past few years have been eye openers.

Jump to this post

@wickenburger
I can relate a bit to this one! My mother was in ICU many years ago fighting for her life and this nurse kept asking her those very questions, "do you , know what month/day it is, do you know where you are?". I took her aside and reminded her we are in a room with no windows, you've drugged her up and you wake her up at all hours of the day and night because it's convenient for you, it isn't a realistic test to determine someone's mental capacity. I know she was just following protocol, (much like your nurse) BUT that is what separates the good from the bad medical professionals. Some can only follow the script while others are able to take into account the person and the circumstances and adjust real time. The good ones are worth their weight in gold!
J

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1 reply
wickenburger | @wickenburger | Sep 14, 2020

I think experiences like your Moms are part of why the chronically ill delay going to the hospital it can become frightening

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trishanna | @trishanna | Sep 14, 2020

Won't go into details because it's such a sad story. My Mom was brought to the ER with a bleeding problem. Unknown to us, the hospital staff marked her as unresponsive - my Mom was hard of hearing!!! Ultimately, I went to the hospital chaplain for help because no one would listen to me. Four days after being admitted, my Mom died. Probably we had a lawsuit, but that would not have brought back my Mom. So, I advise that if your loved one is in a nursing home and is a bit deaf, attach a warning label to a toe so the ER staff will know.

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Ellen | @helenfrances | Sep 14, 2020

We have a wonderful nurses association who will send a nurse(s) to care for you round the clock. When my friend was retiring as administrator of the association I called her.. and she promised her successor would value life until the end.
That was true. My friend was dying from cancer and she had round the clock nurses at her home. She died peacefully at home surrounded by her family. This reminds me to send a donation to them. (Insurance, Medicare covers their costs.)

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kamama94 | @kamama94 | Sep 15, 2020

Now working on new dialysis diet, which is higher protein and lower potassium than a reg renal diet.

Neph came to see me at the clinic yesterday, answered all my questions and offered some much-needed reassurance. Also upped dialysis rate a little to shorten the time and I tolerated that just fine. She increased my Lasix and is giving me erythropoietin stim IV with dialysis so I can start making more red blood cells.

I already had talked to surgeon's nurse about post-op transfers and neph bore out the info, said after 24 hrs I could use my arms to push up and meanwhile this was one reason she was admitting me to the hospital post-op and putting me on bedrest, so I wouldn't have to try to transfer to access the bathroom, for one thing.

The only negatives to yesterday were that the treatment recliners start to hurt my back by hour 3 and I was so tired by the time I got home. Otherwise it actually was a fairly pleasant experience, no other uncomfortable side effects and lots of laughter and socialization, both with other patients and with nurses and techs.

Busy day today - nurse for bath & personal care at 8 then PT/OT for transfer strategies. Then lunch & nap, then some me time and quiet time.

Sending everyone wishes for a nice day. Love and hope live here.

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3 replies
fiesty76 | @fiesty76 | Sep 15, 2020
In reply to @kamama94 "Dialysis again today. Not quite as tired as yesterday but will be going 2 days without..." + (show)
@kamama94

Dialysis again today. Not quite as tired as yesterday but will be going 2 days without treatment over the week-end.

What some may not realize is that if you miss even one treatment the toxins build up in your body and make you very sick if they don't actually kill you. Once you've established a regular treatment schedule 2 days between treatments don't pose as much of a problem, especially if you watch your potassium and phosphorus intake. Until I'm on a continuous MWF treatment schedule I may not feel as well as I will later on but who knows?

Just to be clear: nobody knows for certain when but eventually treatment itself will begin to fail and coma and death will soon ensue.

Meanwhile, am hoping the current fatigue and nausea and dizziness hold off until Monday when I go for another treatment.

Because there are things I gotta do!

To all in this forum: hope and love live here. . .

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Dear @kamama94, I've lost access to Mayo posts again and managed to access one forum through a Daily Digest, 9/10th. Received some tips so will try those. All that just to let you know I've had you in my thoughts and prayers each day and hoping you find ease and comfort in each day. Certainly, and not surprisingly, your wonderful spirit is not affected by your new treatments. Who but you would post: "Because there are things I gotta do!" Love you friend and always remember you are truly a shining beacon for us all.

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