We will be discussing the ISPD position statement on Encapsulating Peritoneal Sclerosis on July 11 and 12. One of the key aspects of discussion is the idea of switching modalities - ie stopping PD after a certain duration, since the risk of EPS goes up with longer duration of PD. How would patients feel about this? Here is a patient voice on the importance of the freedom as well as the downsides with PD.
My time on Peritoneal Dialysis
My path to peritoneal dialysis (PD) started with being admitted to the hospital in kidney failure, placement of a permacath and beginning hemodialysis (HD) all within a few hours. Following hospitalization, I began outpatient HD at a dialysis unit in a hospital near my home. I appreciated the medical staff as well as the other hemodialysis patients. What a great group! Unfortunately, I felt lousy after every dialysis session and wound up going home and sleeping until the next day.
My nephrologist suggested I consider PD. We discussed this process in detail and I said, "No thanks." Honestly, PD sounded scary, gross, and a lot of work. After a couple months of hemo, I changed my mind and PD catheter surgery was scheduled.
I began training for manual exchange (continuous ambulatory peritoneal dialysis, CAPD). I used this method for a couple weeks until I was trained on the cycler (commonly called automated peritoneal dialysis, APD). This training was very in-depth and detailed. My two PD nurses were thorough, funny, kind, and wanted me to succeed.
In December 2015, I received a call from my transplant center for a deceased kidney. I was grateful to spend only one year on dialysis. I am now 19 months post transplant. YAY!!!
I have some thoughts both pro/con about PD.
Pros
As I said earlier, I did not like hemodialysis. Some of the pros of PD for me were the ability to do this at home on my schedule (I needed to begin PD at night based on the time I was getting up in the morning to go to work) so it wasn’t totally flexible. I was able to do this by myself. Yes, I had help from my family when I needed it, but I wanted to be self-reliant. My potassium level was more easily controlled on PD, so I was able to eat more summer fresh fruits and veggies! Although I was hooked to a machine all night, every night, I generally felt well during the day, which was excellent. My quality of life greatly improved when I started PD.
Cons
Cons were I had zero appetite for my year of dialysis so getting enough protein was a challenge. Having a long catheter hanging out of your abdomen is a bit of an inconvenience. I also had to learn to give myself regular Aranesp (Darbepoietin) injections. PD took a lot of space in our house. We devoted an entire room to boxes, equipment and supplies. I was told PD would be done while I slept. HA! I rarely slept for 8 months. My machine was loud; alarms were frequent, constipation an issue and drain pain could be severe. I also didn’t like being tied down to one section of our home. Someone needs to come up with a more portable PD cycler so you could move around your house or maybe even go outside. I worried about infections and hernias, though luckily I avoided those. Some people in my PD online group told horror stories about both of those showing nasty photos, plus the more serious topic of your next chat. So, although all of those were a concern, I felt PD was worth the risk for me. In my cost/benefit analysis, PD was a solid benefit in my life.
Advice
I think it helps if a person is a rule follower to be successful on PD. Consistency to process was key. You also need to be a person who cares about cleanliness. I was a bit obsessed about this; I did not want an infection. A PD patient needs to be organized; boxes and equipment management is a huge job. I had strong family and friends' encouragement. Finally, you have to hang in there, through the leg cramps, the drain pain, the broken cyclers (I was on my third machine in eight months), and lots of boxes.
I hope and pray my new kidney lasts a lengthy time. However, if I ever have to go back on dialysis, PD would be my first choice even with the negatives I listed above.
Susan Kjos
July 2017
Blog post written by Susan Kjos, who describes herself as 'I am a wife, mother, daughter, sister & friend. I have CKD but it does not define me. I was blessed with a kidney transplant. My life is an incredible ride, and I am lucky to be on it.'
