Is a kidney transplant worth it?

@rhanea Welcome to Mayo Clinic Connect. It's good to hear you are being evaluated for a transplant. Has your transplant team indicated that you are a good candidate for transplant? In most cases, they advise a person to get their underlying health issues under control, that in your case may be the high blood pressure and diabetes. Many times the hyperparathyroidism is linked to the kidney issue.

You ask about dialysis. There are two types: peritoneal dialysis using the lining of the abdomen as a filter, and hemodialysis which uses your bloodstream. I personally am using peritoneal dialysis, but not everyone can do that. It is based on your medical history/scar tissue/surgeries previously done in the abdominal area. Dialysis is a treatment, not a cure for kidney disease. Likewise a transplant is a treatment, not a cure. Like anything else, there are similarities with people, but we each have our own take on a situation, tailored just to us. @kamama94 was on in-center hemodialysis for a while, and she may be able to give you her viewpoint. I do dialysis everyday, but my schedule is flexible because "I am my own boss".

From the American Assn of Kidney Patients, here is a great article with a lot of information: https://aakp.org/center-for-patient-research-and-education/dialysis-education/

Likewise, we have a thread of discussion here on Mayo Clinic Connect about dialysis: https://connect.mayoclinic.org/discussion/dialysis-stories-and-questions/

What questions do you have?
Ginger

@rhanea Hello.

Ginger alerted me to your question about dialysis. Each of us is different and my experience with CKD and dialysis is different from that of others.

What I have to say about my dialysis experience will require at least 2 posts, so please bear with me.

Also, I should tell you I have been a type 2 diabetic for many years, diet-controlled awhile then with oral medication but ultimately had to go on insulin. It's better managed now with a strict and somewhat inadequate diet (more about that later) and minimum insulin.

I mention it because a diabetic diet conflicts in some ways with a renal diet so I've been doing a balancing act with both diets for several years and with a fairly recent diagnosis of gastroparesis (probably related to the diabetes) I have needed to add another element to the balancing act in terms of a gastroparesis diet conflicting with the other two diets.

I was diagnosed with kidney disease before 2017 after primary care lab reports showed a drop in kidney function and I was referred to a nephrologist who ran further tests, including CT scan and MRI. We discovered my left kidney was completely atrophied and nonfunctional and the right kidney had a little over 30% function. I could not qualify for a transplant due to my age (I was in my 70s and over the age limit to go on the transplant list) but I did not need dialysis at that time.

Instead, I went on a vegetarian diet at the suggestion of my nephrologist. (It would be vegan except I do eat free range eggs for the protein plus occasional cooked dairy in some breads if I can't get the dairy free versions and a very small amount of cooked dairy in one prepared vegetarian meat analog I eat once a week.) I did really well until a bout of shingles dropped my kidney function from Stage 3a to Stage 5 and I had to have dialysis. From what I read on various kidney websites, I had about 4 to 5 years left but I'm still here.

More to follow in further post(s)

@rhanea Continuing:

I live in a small government apartment with no room for peritoneal dialysis supplies and equipment. I was so weak anyway I could not have done it without help and I live alone with no family near enough to assist me. So I had to have hemodialysis if I wanted to live awhile longer.

Hemodialysis sapped my energy and strength and affected my appetite but I still tried to stay on a kidney friendly diet much of the time with less strict attention to it on dialysis days because I was too weak to cook or even eat much. I went to the dialysis center three days a week in a Handicap van because I, too, am in a wheelchair due to spinal issues, arthritis, and fibromyalgia.

The evening before each dialysis session I would start to get very fatigued and had no stamina. The day of dialysis, I came home exhausted afterward and could barely make it to bed. I actually ordered Chinese food (no meat) despite the sodium content and paid for it over the phone. A neighbor who helps me care for my service dog would meet the delivery person and bring me a portion before I fell asleep in the afternoon and another portion or a peanut butter sandwich or something similar in the evening before I fell asleep for the night.

The next morning I usually felt much better and could perform self-care and prepare simple meals but could not do much else and by evening of the day after dialysis, fatigue and loss of energy set in again. Week-ends were worse since there were two days between sessions from Friday to Monday instead of one day between Monday and Wednesday and one day between Wednesday and Friday but I got through it.

Over a period of 6 months most, though not all, of the side effects of the shingles improved and my kidney function improved enough that I no longer needed dialysis. I'm glad I had dialysis because even though an acute episode of gastroparesis landed me in the hospital again and decreased my kidney function again to Stage 4, I recovered enough to come home and have not needed to go back on dialysis - yet.

Look for another post, please.

@rhanea

Continuing:
In fact, with good medical management and my renal-diabetic-gastro diet and lots of support from people like Ginger, I am back up to stage 3b kidney function. If or when I need to go back on dialysis, I would do so, depending, of course, on the stage I'd be in and if it would be helpful.

I hope this helps. Feel free to ask me questions. Also, Ginger can notify me if you'd like to know more about my kidney-diabetic-gastro journey.

I wish you peace and blessings!

My diabetes is well controlled. My A1C has been 5 to 5.4 for a while. I’m a type 1 using an insulin pump almost since diagnosis.
My blood pressure is also controlled with medication. I also know how hard a diet is with multiple issues. On top of those that are obvious I also have celiac. My transplant dr told me I was very frail, said it was a 50/50 chance and couldn’t guarantee it would improve my life. It is up to me. So, I’m waiting for a scan to see if my veins and arteries are healthy enough for the transplant. I don’t know if I want to do either. It doesn’t seem that there is a good choice. Maybe I should just do the best I can with diet. How did you get your kidneys to work bette? I didn’t think that was possible? Thanks for responding. I truly appreciate it.

Thank you so much!

@rhanea, I hear you.

My kidney function improved due to several factors: one is good medical management from an excellent neph and included dialysis which gave my kidney a rest, two was healing from shingles (never want THAT again!) and three a very strict kidney-friendly diet I developed for myself (medical background including some nutrition studies as well as patient care) when no one (except my primary, my nephs, and me) around my one-horse town understood that a turkey burger is not vegetarian! Last but not least the support I received from these chat threads and the links and the information have helped keep me alive and I cannot say enough good things about Ginger, Rosemary A, CE Hunt, and all the others who have helped me. The recipes I developed are now outdated as manufacturers change ingredients and nutrient amounts constantly - back then potassium wasn't required to be on labels, though it is now. However, if you're interested in some basics, Ginger can guide you to a thread they are in.
Meanwhile, am sending you healing vibes.

@rhanea That must have been tough to hear from your transplant doctor, right? But, at least they were truthful to you, which you gotta applaud them for that!

When is the scan you spoke of, to see if your veins and arteries are up to the task?

I will tell you that my husband had a kidney transplant October 2016, after 5.5 years on peritoneal dialysis. His underlying issue was uncontrolled high blood pressure. He tells me he does not regret a single moment of either the dialysis nor the transplant. His adult children first told him they would test to be a match, but then backed out. He had a deceased donor, who was 16 years younger than him.
Ginger

Worth what? To me, yes!

I’ve had 3 kidney transplants, my last turned 33 last month. It is well worth not being hooked up to a machine 3 times a week, if you can.
Of course transplants come with their own challenges, but for me, compared to dialysis, no question my transplants have kept me alive when I received matches.
All the he best!!