Dialysis: What type of dialysis are you on?

Thank you so much for your support. I can feel it and I'm right there for you too! If you ever need to communicate privately, please send me a private message.

@ldrlaw, I, too, have been on dialysis when my CKD went from Stage III to Stage V suddenly after a severe case of shingles - eGFR dropped from over 30 to 14. Because it was so sudden there wasn't time for a fistula so a central venous catheter (going to the heart) was placed and I went on the Handi van to the dialysis clinic here in my town 3 times a week.

Dialysis day really wiped me out and I came straight home, ate whatever was handy, and went to bed. The next day I felt fairly well and was able to do household tasks, personal hygiene, etc. The day after that was ok as well until evening, when I suspected the toxins were building up.

Prior to all this, I had switched to a vegetarian diet - almost vegan but I included free-range eggs in my meal plans (for the protein) and started looking up nutritional values for various foods and ingredients using the USDA website as a primary resource. This led to developing kidney-friendly vegetarian recipes which in turn resulted in my first two recipe collections.

While on dialysis, a fistula was placed but it failed. Then an av graft was attempted in my left forearm but it also failed. But an av graft in my upper left arm is still patent after two+years but has not been used because I was able to stop dialysis about six months after it started. I credit good medical management and faithfully following my diet.

It has been two years since I had dialysis. If I needed to do it again, I probably would for awhile, assuming the av graft remains usable. My decision whether to go back on dialysis will be based on life quality considerations. I'm much weaker now than I was then due to worsening diabetes, ongoing CHF and COPD, and a new diagnosis of gastroparesis and probably could not manage home dialysis (and live alone) so would elect hemodialysis at the local clinic.

With GP I now have two or three "good" days a week (the other four range from yukky to miserable) and currently am able to tolerate that. Adding dialysis and its concomitant fatigue might reduce the number of comfortable days. I won't know if it's worth it until that happens.

The other day my Neph told me I have greatly contributed to my own (and others') welfare with the research and the recipes and my renal diet because many people might not have been able to do the research and develop a diet plan and many would have thrown up their hands and decided to eat whatever they wanted even if it hastened death.

The reason I'm sharing all this is to say that sometimes a person might want to weigh the benefits of dialysis in terms of quality of life. If someone on dialysis is miserable most of the time s/he might elect to stop dialysis in favor of palliative care and comfort measures.

Whatever you and yours decide, please know I'm in your corner!

@kamama94 I enjoyed your post regarding Dialysis. You have been a source of hope, encouragement and inspiration to me for a long time. I’ve been told I will eventually need dialysis &/or kidney transplant at some point. I am also diabetic (mostly another story). I saw that you are newly diagnosed with gastroparesis. I have that too. It can be really tough to deal with! I’d like to share what I know about it and what as helped me. It is a type of autonomic neuropathy associated with diabetes. Basically the nerves that help control functioning of internal organs ( in this case the stomach) are damaged and the organ doesn’t work properly. In this case the stomach doesn’t digest and empty as it should. Food gets stuck there, ferments and causes nasty and painful digestive symptoms (nausea, vomiting, cramping, alternating constipation / diarrhea). I was told by a dietician that frequent, low fiber smaller meals can be helpful. She also admitted that it is not particularly very nutritional. You have done so much work in putting together the recipe collection for chronic kidney disease (CKD) and I’m sure you probably know and follow guidelines for healthy eating with diabetes; don’t know if you are up for one more dietary dimension but I thought I’d mention it. I think it is something that “couldn’t hurt, might help”. Continue to take care. You are in my thoughts and prayers.

Hi Ginger - thanks for sharing this information. Our little home in AZ ("the bunker") is off-grid, 4 1/2 miles from pavement. We rely on solar with backup generator. I'm not mechanically inclined and there always seems to be something that needs tweeking. I have been telling my husband for years that when we got frailer, we'd have to be out of there. We have a big, beautiful home in WI with all of the conveniences but he likes the desert and doesn't want to leave. I know at some point soon I'm going to have to put my foot down and am dreading it. I'm glad I found a psychologist that I really like - think it helps.
My husband commented on my memory so many times I went through Mayo's 3 hour dementia testing - so now I know I'm good there. Because I owned/ran/was a caregiver at a small group home for the frail elderly, I think I'll be able to handle being a dialysis partner though it feels like I'm facing a long prison sentence as we won't be able to travel and do some of the things I want to do in my own remaining years.

@ldrlaw Kidney disease, as you know, can sneak up on us, or suddenly appear on our doorstep. Typically, once a person's eGFR is about 20%, our doctor may start discussing the possibility of dialysis. There are several factors involved in the decision for what method to use, and speaking with the doctor will help answer specific questions to make a selection easier. I have added a link to what the National Kidney Foundation has to say about dialysis as a treatment for CKD. Of course, I will answer any questions you pose to me, as best I can!

In my case, I had a arterial venous fistula placed in my wrist in December 2021, as back-up access if there is a problem, and had a peritoneal catheter placed 8/1/2022. Next week I start PD dialysis. I live 2 hours away, each way, from my dialysis center. My goal is to do dialysis at home. I will be honest with you, home dialysis is not for everyone, regardless whether it is peritoneal or hemodialysis. The patient is responsible for a lot, and frankly, not everyone wants to be in that position. Having a care partner helps. My husband was on home dialysis but at that time lived in a very populated area, with medical facilities nearby. Driving distance/available ambulance service is definitely a factor if you choose to go it at home. A couple who lives nearby chose to move down into a much bigger city due to his dialysis, so they wouldn't be heading in to town three times a week in the winter.

As I researched dialysis options, for my situation, it was clear that being able to do peritoneal dialysis would be best for keeping my body on the most even keel possible, and mimicing what natural kidneys do, filtering toxins everyday. I am also on chemo for a blood cancer, and my oncologist agrees daily dialysis is best for me.

You say you have a little place in Arizona, but are currently in Wisconsin? Do you winter in Arizona, or are you moving there?

https://www.kidney.org/atoz/atozTopic_Dialysis
Ginger

Hello, you sound very knowable. My brother has been told out of the blue, he is stage 5. We will have an appointment on Feb 27. He is so afraid as I am that he won't make it in time. His fear 8: We are trying to get an earlier appointment, but there isn't anything so far. I am venting, and I am so worried.
Thank you for listening and for any advice. would be so appreciated
Kindly Sally Catalana