Starting Peritoneal Dialysis: What do I need to know?

@miker8888 It's good to hear you have a good team of medical people around you!

I am not sure what part of the country you are in, but I am willing to wager you will be going through one-on-one training to learn how to do your peritoneal dialysis. Do you have someone else in your house who will be able to be there along with you, to learn alongside you? It's helpful if you do, if nothing else as a support person for you!

Starting dialysis at an eGFR of 13-14 seems to have a better chance of retaining some residual kidney function. As the doctors told me, it is better to start before you actually are in dire straits, as it helps your kidneys along.

As to your question about problems, diet, successes:
-It's a lot of supplies! They will come out to your house to make sure you have enough room to strore everything, and you will get a shipment each month. Make sure you have looked into backup power in case it goes out. Contacting your power company for emergency situations may be wise, so they know you have to have a priority. Here in my house, we have a backup generator, or I can go into our motorhome.
-Be prepared to dedicate time to all this. It's like having a part time job, as a friend tells me!
-You'll have an easier time on PD as far as diet goes. Less fluid restrictions, but you will need to keep up eating healthy quality foods, and lots of protein.
-Be careful about core exercises and lifting things. The PD catheter area is vulnerable. You do not want to get a hernia!

Please feel free to post any questions you have, and I'll do my best to answer them.
Ginger

.Your advice and information is right on the mark, particularly the reference to "part-time job". I am entering my 4th week on PD using the cycler. While mastering the various techniques (I did manage a Pharm Lab Microbiology department) the variables of the human body, age and diet are still being worked on. For those of faint of heart, it is a simple but oh so vital importance to religiously follow the sanitary and aseptic procedures. Not complicated at all but critical. All the rest is routine that is different from what you have been used to and that is the main adjustment. So far, my attitude is up. I have been able to handle glitches and machine stoppages with the really good training and clinic support. Above all, the PD nurses are at the top of my admired list.

@miker8888 Good to hear from you. Yay! to you for getting along fine in this new chore we've added to our lives. Following the sanitary and aseptic procedures are of vital importance, no doubt. As you have done, there is a routine to it all, and that's when you need to be mindfully present to not accidentally forget a step in the day-to-day process.

I do manual exchanges, because I only do one a day. My kidneys have recovered to 18% now. That might not seem like a lot, but it is proving out to have a positive effect on toxins removed from my system, allowing the chemotherapy for my blood cancer to work better. Attitude is everything! Yes, my PD nurse, who I call Marvelous Marsha, is my hero!
Ginger

My wonderful husband had a kidney transplant in May 2024. The doctors thought his kidney was slow to graft. However, after several months of poor kidney performance and many different tests, his transplanted kidney was declared nonfunctional in February 2025. He currently has a temporary HD line for dialysis and goes to a local clinic on Mondays and Fridays.
We are at a new crossroad and need to make a decision about in-house or home dialysis. My husband loves his independence and we both love traveling.
It's challenging trying to find our way with our new norm. I'd appreciate hearing more about personal experiences with dialysis.

@trishak Welcome to Mayo Clinic Connect! I am truly sorry to hear that your husband's transplanted kidney has failed on him. Has he been able to reestablish himself on the transplant list?

When you go to your dialysis center, ask them about resources of information about in-home dialysis. There is both peritoneal and home hemodialysis. A vascular surgeon could determine if your husband is a good candidate for peritoneal dialysis; factors that might preclude that form include excessive scarring in the abdominal area.

I know @rickkaplowitz does hemodialysis in center and has done a lot of traveling, even international! He maintains his independence and cheerful attitude.

For me, I am on peritoneal dialysis since Sept 2022, and now have a schedule to do an overnight dwell of fluids, draining each morning. This frees up my day, thankfully. I have a portable bag heater purchased from Stickman Dialysis Supplies https://kidneystuff.com/products/daytripper?pr_prod_strat=jac&pr_rec_id=915848acf&pr_rec_pid=200689057819&pr_ref_pid=201058779163&pr_seq=uniform&_gl=1*c2cixg*_up*MQ..*_ga*MjQ3Mjc1MTk0LjE3NDA5Mzg4Njc.*_ga_9GM5WY6SQ7*MTc0MDkzODg2Ni4xLjEuMTc0MDkzODkwOS4wLjAuMA..
This allows me to take off on trips, and I can use my power port in the car to warm up my bags.

You're right, this is a new normal for you, and you've come to the right place for experiences!
Ginger

We have discussed the possibility of retransplant with our kidney transplant team in Washington. However, it might be several months from now before that could happen and my husband would have to qualify all over again as a suitable candidate. It's my understanding he would not have to start over on the waitlist. We've considered listing with Mayo clinic, but don't know what's involved or what that would mean for waitlist status.
In a perfect world, we could go straight to retransplant and pass on the peritoneal and home homodialysis.
I appreciate the feedback and the links.

So sorry to hear of this development. 😞 it sounds like you are reviewing options, including being listed with other hospitals for a new transplant. That sounds like a great idea. I would definitely recommend getting advice outside your current team regarding options.
Best to you and your husband.

@trishak I'm so sorry that your husband's transplant didn't work out for him, but I'm glad that you're pursuing retransplant. He can try to get listed at as many facilities as he can and that are feasible for him. And, I agree with you that retransplant before having to go on dialysis would be preferable. Wishing you and your husband all the best!

Thank you

Thank you Ingnglr