What can I expect on dialysis? How does it affect your daily life?

I would like to invite @hello1234 and @missdi to join this conversation. I saw that you both have recently shared in the Transplant Group that you had dialysis and a hemodialysis fistula before your kidney transplant. You are in a unique position to be able to lend some support and understanding to @pegalini who is now to the point where her kidney disease has gotten worse and will need a fistula to start dialysis.

@hello1234 and @missdi, Please read @pegalini's post. What would you like to share about your experience that can help her prepare for this procedure as she moves ahead toward dialysis?

@pegalini That's a lot to have to deal with! Yours is certainly not the first time I have read while we are busy getting one problem remedied, another happens.

Yesterday I had an appointment with my nephrologist, who I simply adore for her conciseness and education. One of the things she strives for is the concept of healthy systems so we can do dialysis. Albumin level, which is a blood protein, is ideally in the normal range, as dialysis can deplete your system. I have been struggling with that, and she recommends several small meals a day, including quality protein. Peanut butter [if you can tolerate it] on toast, a hard boiled egg, chicken, cottage cheese with fruit, you get the idea. I myself get many days that food does not appeal to me at all, so I have to force myself to eat. BTW I am also a cancer patient undergoing chemo, so that plays a factor!

On the website I mentioned to you before, there is a lot of information about diet. Also, going to American Kidney Fund website, you will see information about dialysis and diet https://www.kidneyfund.org/kidney-disease/chronic-kidney-disease-ckd/ckd-resource-center/

As you may have heard before, everyone is different, and what works for one may need to be tweaked in your situation. That is why Mayo Connect is important, as we share what has worked, or not, for us. We learn from each other! And, I will say, that it is empowering to have a sayso in our treatment, and work with our team to make decisions together.

What will you do today to start getting ready for fistula placement? do you have someone with you to drive you home, to take over your chores for the first several days?
Ginger

Hi @rosemarya and @pegalini Thank you for bringing me into the discussion. Yes, I do have a hemodialysis fistula on my left arm. But a miracle occurred!
One month before I was scheduled to start dialysis, Mayo called me at 2am in the morning that they "had a kidney match!" So I never actually started dialysis.
However, my mother is 85 years old and she has been on dialysis for three years so far.
She goes Monday, Wednesday and Friday for three hour treatments in the morning. She entertains herself with reading, watching TV and messaging me and her friends. Also, the nursing staff is lovely and they chat with my mother and she loves them as good friends!
I pick her up from her treatments and we have lunch together and then she takes a nap. The next day she wakes up feeling great and ready to go do something. 😊
She is very grateful for the dialysis technology and "over-the-moon" about my kidney transplant!
Backstory....I was named after my Mom's uncle that passed away from kidney failure at the age of 30 because both dialysis and transplant were not available as medical solutions yet.
I am so thankful that science and medical technology has given my mother and me a chance to live and spend time with each other, our family and our friends.
We are grateful to feel the sunshine on our faces and a cool breeze. A priceless gift of life.
If you have any questions, I am happy to share whatever I know about my experience or my mother's experience on dialysis.
Love to you ❤

Beautifully said.

Hi Peggy, How are you doing? How did the fistula placement go?

My husband will start dialysis in January and I would like to get answers to some questions that are very basic, but new for us. Is there a discussion group here that deals specifically with dialysis?

@sarah82 Welcome to Mayo Clinic Connect! I am so glad to see you are reaching out to us.

I am on peritoneal dialysis here at home. In addition to this, I do have a back-up fistula in my arm "just in case" it is needed. There are three types of dialysis: in-center hemodialysis [blood exchange removing toxins], home hemodialysis [same format but done at home by patient and caregiver], and peritoneal [at home, using abdominal cavity to remove toxins not removed by the kidneys]

As you can imagine, there are pluses and minuses for each style. And not everyone can be successful on a type they would like to have access to. Ask away on your questions!

-From the National Kidney Foundation is this article: https://www.kidney.org/atoz/content/choosing-dialysis-which-type-right-me#:~:text=There%20are%203%20main%20types,any%20one%20type%20of%20dialysis.

-From Cleveland Clinic, a trusted source of information: https://www.kidney.org/atoz/content/choosing-dialysis-which-type-right-me#:~:text=There%20are%203%20main%20types,any%20one%20type%20of%20dialysis.

-From Renal Support Network [a private organization with outstanding educational articles]: https://www.rsnhope.org/kidney-101-just-diagnosed/dialysis-treatment-options/

What questions do you have for me today?
Ginger

Thank you, Ginger! My questions are general in nature: What to expect, and how the process will affect our lives. Charlie seems encouraged by the possibilities offered by dialysis, rather than dreading the procedure. His nephrologist has not been specific about details, but has scheduled Charlie to have a shunt/fistula inserted in his arm, and then a line inserted into a vein, within the next two months. Will Charlie be able to drive to his dialysis appointments? Are most people tired after a dialysis session? Do most recipients experience a loss of appetite? Will his left arm be dedicated to dialysis, or will it be useful for other activities? Will the dialysis clinic offer opportunities for social interaction? Will he be able to travel on his days off if he has sufficient energy and interest in doing so? Do dialysis recipients generally continue their C-Pap at night? Does dialysis have an effect on quantity of urine produced by the body? Do recipients have an increase in energy with dialysis?
Sarah.

These are excellent questions, Sarah. I moved your post to this existing discussion where @beach757 asked similar questions and received helpful responses:

- What can I expect on dialysis? How does it affect your daily life? https://connect.mayoclinic.org/discussion/dialysis/

In addition to @gingerw, I'd like to bring others into this discussion like @ldrlaw @xottawan @kamama94 @cehunt57 @guidant07 @stevewyatt @pegalini to share their experiences relevant to your specific questions about driving to appointments, fatigue vs energy, appetite, CPAP and other activities.

@colleenyoung Hello. Not sure where but I posted about my dialysis experience fairly recently in one of these discussion threads. If you can find it, feel free to re-post. Meanwhile, here's my experience in a very large nutshell:

I was diagnosed with CKD in 2017, subsequently saw a nephrologist who ran several tests and determined that left kidney was atrophied without any function and right kidney function was only a little over 30%. A transplant was not feasible due to my age so my care team and I opted for medical management and a renal diet. Experiencing difficulty in in finding appropriate dietary support, I used my nursing background and background in nutrition to develop a renal-friendly diet of my own and when nephrologist suggested a vegetarian diet I had no trouble transitioning to an almost-vegan diet - I say almost because I do eat eggs for protein.

The diet kept me fairly stable until I developed a case of shingles which eventually put me in Stage Five or end-stage so an AV catheter was placed in my vena cava for immediate dialysis. Surgery to create a fistula failed then surgery to create an AV graft in my lower right arm also failed so I continued on dialysis with the "heart" line.

My mobility issues and the fact that I live alone in a small apartment made it impossible for me to do dialysis at home (peritoneal or hemodialysis) so I went to the local dialysis center in my town on a handicap van (I'm in a wheelchair) three days a week. On dialysis days I came home exhausted and starving, grabbed whatever I could stuff in my mouth (yet still mostly following a renal diet) and crashed until the next day when I felt more energetic and could do normal ADLs and household tasks, meal prep, etc. I still felt ok the second morning after dialysis but by evening began to notice toxins building up before a new dialysis session was to begin the following morning.

I stuck to the really strict diet, measuring portions and avoiding all foods which might remotely interfere with renal function, and kept going to dialysis. Slowly my right kidney regained some function and in 2020, after 6 months on dialysis, I had moved to Stage Four and no longer needed dialysis. Also had a second AV graft placement surgery in 2021 which still seems patent even though it has not been used. Also in 2021, the dialysis catheter was removed and a mediport placed in its stead due to limited venous access partly due to the graft placement in my left arm.

So far my eGFR has remained stable in spite of the fact that I have developed gastroparesis, perhaps secondary to diabetes, but am learning to manage the symptoms and to try to balance three often-conflicting diets the best I can. It's been a life-draining struggle at times and lately I seem to have more "off" days than before due to the GI symptoms but each moment still is precious.

Best wishes and hugs to all who struggle with chronic illnesses.