Kidney Disease

I'm new here...hello!

Just signed up! I'm hopeful I'll find information and support from other dialysis patients. I was diagnosed in 2015 with multiple myeloma, and within a few weeks I experienced kidney failure. My doctors were hopeful my dialysis might be temporary but two years later, I am still receiving treatment. I am interested in hearing the experience of other patients, particularly how each of you copes with life on dialysis. I often hear of patients who receive treatment just two days per week but at my center, that is not encouraged, or I guess, actually "allowed." One patient who does come just twice each week is considered "non-compliant"...meaning they prefer he be there three times but he refuses. Any information or thoughts by other members would be so appreciated. Thanks!

2 Replies

Hello. I am not yet on dialysis but am at late stage 4 COD. I thought I would reach out and welcome you. This forum is great and I hope you find it as supportive and informative as I do.


Hello! I just started dialysis a few months ago after experiencing kidney failure and severe uremia over the Thanksgiving holiday. I'm also waiting for a transplant. I assume that you are on hemodialysis? I did hemo 3x a week for 2 months while training for perotineal dialysis (i have a PD catheter in my abdomen and do dialysis on a cycler every night). Hemo is done 3x a week and any less can be risky and cause uremia, or a build up of toxins in the blood. I personally didn't react very well to it, so I'm glad that I switched to PD.

I'm still adjusting to life on dialysis, but I have days where I feel better than I did pre-dialysis. It's tough though, since I went from working and going to school (I'm 20 and a junior in college) two hours away from home to needing to be home most of the time and not being physically able to work. I can only do online university now as well. It's been very isolating since most of my friends still attend my old university and are two plus hours away.

I try to focus on what I can do, such as cooking and cleaning around my dad's house. Keeping busy has been my best attempt at creating some sort of normalcy after the sudden uremia episode that left me unable to care for myself. Now that I'm on my cycler, I can travel for longer periods of time and spend time with friends again. I also take a few moments every day to remind myself that I am still in kidney failure and that I am allowed to have a personal day of doing nothing but sleep if need be. Giving myself that permission has helped a lot in my ongoing recovery.

Well, there is my not-so-short blurb about my life on dialysis! I know that your post is almost 6 months old, but I love seeing other people's stories as well!


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