Hi everyone! I'm new here, and posting on behalf of my uncle who is in his mid seventies and looking for impartial information. His nephrologist has been telling him to start dialysis for two years, but he has not done so, rightly (thus far) intuiting that he could maintain his lifestyle without it. However, he now has difficulty even navigating his house without becoming exhausted, and has lost his appetite, and in short he is now considering starting dialysis much more strongly. I just went out to visit him and we went to the dialysis clinic together --- he described it as a nightmarish vision of hell. Perhaps some of you can relate?
In any case, the two of us have some questions and would really appreciate any information y'all could give us:
1 - Once one starts dialysis, is it possible to stop? Or does the process itself finish off what little remaining kidney function one has? We've heard conflicting things.
2 - How arduous is the PD process? He feels overwhelmed by the idea of having to change the bag so many times a day, every day, forever. He is also worried about the risk of infection. Personally, I think it would suit his lifestyle better (and save him the dread and pain of shuttling back and forth from "hell" 2-3 times per week), but he's not convinced he's up to it. Besides, he already has the "port" for HD in his arm. Thoughts?
3 - We've heard it is common for people who're just starting dialysis to feel "washed out" for a few days. Does this always subside, or does it sometimes persist? He suspects it persists more often than his doctors advertise.
4 - His creatinine numbers are improving (though still far too high). How is this possible, when kidney damage is irreversible?
5 - After starting, does one's quality of life seriously improve? How often, and how much?
6 - Finally, the social worker at the dialysis center said as we were leaving that 95 percent of dialysis patients start in the ER after becoming deeply, urgently, sometimes psychotically, ill. Is there any warning about when one is entering this phase?
I'm sure more questions will keep coming up, but that's probably enough for now. Thank you all so much in advance for sharing your experiences.
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nephew92
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First, I’m currently in Stage V, renal failure. I have been since January of 2017. I’m still not on dialysis. However, I plan to start with PD dialysis.
My first nephrologist spent considerable time providing patient education regarding dialysis for me. I’ve also done quite a lot of research. I was one of my own father’s in-home HD dialysis care providers. And finally, I’ve visited 4 dialysis clinics and talked with nurses and patients who were kind enough to talk with me. Based on the aforementioned, I’ll share my thinking regarding dialysis:
1. PD dialysis is MUCH easier on our bodies than HD dialysis. The recovery time following each dialysis session is described as being nothing whereas HD dialysis when done 3X a week at a center is both much harder on our hearts and has a much more difficult recovery following each session.
2. PD dialysis often maintains remaining renal function longer than HD dialysis.
3. Any form of dialysis done daily rather than 3X a week comes closer to replicating what our natural kidneys do so it’s likely not surprising that we’ll feel better on PD, which is usually done daily, than on HD, which can be done daily in home with a care partner but is more often done 3X a week in center.
4. Close to 98% of all practicing nephrologists would use PD dialysis rather than HD dialysis should they need dialysis. They’re reasons are similar to those given above.
5. I’m still working, which matters a lot to me. My first nephrologist assured me that PD dialysis will allow me to continue working full time both because I’ll feel much better and because I can schedule it at times that fit around my job.
6. Will I feel well enough to administer PD to myself daily? Yes—by the time I’m trained and have started PD dialysis, my toxins will have lowered some so I’ll feel better. Plus I’ll have been thoroughly trained on the sterilization protocol. With my dad, when in doubt I “double sterilized “ his access site, etc. He was never hospitalized while on dialysis. He got no infections. If my mom and I were able to do that with my dad, I’m sure I can do the same for myself.
7. After talking with numerous people who have tried both HD and PD dialysis and hearing over and over again how much happier they are on PD dialysis, it’s clear to me that that’s the option I want to try first.
8. If PD doesn't work well for me I can switch to HD.
Am I nervous about starting dialysis? Of course I am. But I believe a huge part of the issue is wrapping my brain around the need for this life sustaining treatment. There are people participating on this website who have been on dialysis for decades. They, like my dad, say to all of us that dialysis is both life sustaining and that it’s a good life. I certainly know that my dad would tell me to pursue all viable treatment options. But he also taught me how to live well with CKD. And yes, if still alive, he would be pointing out the many benefits of dialysis, both PD and HD, to me. My dad truly did embrace life and was thankful for dialysis. He viewed it as a life sustaining treatment. He showed me how to live well with CKD.
So when the time comes, I’ll wrap my brain around dialysis. I’ll get through the training. Then I’ll incorporate dialysis into my daily life. And I’ll be thrilled to be feeling better and functioning well. I’m sure that I’ll also be very thankful to have access to a life sustaining treatment and all the medical personnel there to help me learn how to implement dialysis.
I'm a 78 great old man whose kidneys were damaged by an infection about 2 years ago. Before beginning hemodialysis, I was storing fluid and having difficulty breathing and needed oxygen. After just a few weeks of HD I no longer need the oxygen and I felt much better although very tired after the treatments.
After several months on HD, I switch to peritoneal dialysis. It is quite a bit of work but I can do it at home and I feel much better than I did doing HD. The tiredness is gone and my appetite has improved more than on HD. I think the effort and care to cleanliness is well worth doing PD. I started doing PD manually using bags. I needed help hanging the bags. After I learned this procedurally I switched to using a cycler machine. I can easily use this without help. It's quite easy. My only problem is that I sometimes need to wake up and sit up for complete draining at the end of a cycle. I've adjusted my sleep cycle and still prefer PD largely because of how much better I feel. Wishing you the best.
I have been on both, HD and PD, have also had a transplant. I’m currently on PD using a cycler while I sleep. I was one of those 95% who appeared in the ER; I had a massive heart attack (unbeknownst to me) and it shut my kidneys down. My GFR was at 4 by the time my husband took me to the hospital, I was swollen and I was literally talking crazy due to the toxin buildup in me. When we first got the news that I’d had a heart attack and acute renal failure, they decided to put me into a medically induced coma (later they told me they never expected me to leave the hospital on my own two feet).
HD was pure hell for me, from being constantly cold, poor appetite, feeling washed out and all I wanted to do was sleep, and then there is the strict diet you must follow. But, when you are in the shape I was originally in, its the fastest way to get rid of the majority of the toxins. Slowly my renal function returned, enough for me to come off of dialysis for about three - four months , then my function stopped again. But this time I was more informed, and I chose PD.
For the first month you do manual bags while you’re training to use the machine (cycler), or you don’t have to use a cycler, you can always just do manuals. I chose the cycler because I sleep while my machine runs at night, I don’t carry fluid or have to change bags during the day. And it allows me to continue to work full time and keep to a fairly normal schedule.
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