Lacy’s Story
Hi, I’m Lacy. I’d like to share a bit about my experience with kidney disease and dialysis. I was diagnosed with an autoimmune kidney disease when I was 8 years old. The disease was able to be kept somewhat under control with medications until I was about 32. However, scar tissue was building in my kidneys that would eventually lead to me needing a transplant. I went through the steps to get on a list for a kidney transplant. I had been on a list for a possible kidney transplant for about a year when my nephrologist told me that I needed to start thinking about dialysis. Hearing that I needed to start dialysis was emotionally overwhelming and I felt defeated. My nephrologist at the time told me that I needed to have a fistula put in my arm. I would then need to do dialysis in-center a few times a week. Given my age and general good health, I was very reluctant to do this. A fistula is permanent, and it didn’t make sense to me to have one placed in my arm if I knew I would only be doing dialysis short term.
I had a friend who had done peritoneal dialysis (PD) before receiving a transplant. I mentioned to him that I was going to be starting dialysis. He said to me, “Well, you should just do peritoneal dialysis.”
I wasn’t that familiar with PD, so I started doing some research on it. After talking with my friend and doing a lot of reading about it, I decided that PD sounded like a good choice for me. I would be able to do it at home and I could take my dialysis cycler with me when I went out of town or traveled. In the meantime, my nephrologist had resigned, and a new doctor had stepped in to see his patients. I mentioned to this new nephrologist that I would like to do PD and he agreed that PD would be a great choice for me. He then said something to me that I will never forget. He told me, “People always ask us (the nephrologist) what kind of dialysis we would choose if we were the ones that had to do it.” He then stated that, “We always say that we would rather do PD, yet the majority of patients get put on hemodialysis.” This really solidified my decision to do PD at home. It is also worth mentioning that PD was never presented to me as an option by my first nephrologist. He just told me that I needed to get a fistula to start doing hemodialysis.
In order to do PD, a catheter had to be placed in my abdomen to allow fluid to flow in and out during dialysis. It was a somewhat simple procedure, and I was awake during it. I remember my abdomen was numbed so I couldn’t feel anything, but I chatted with the doctor and nurses as they worked. The doctor did an excellent job placing it and I was lucky to never experience any problems with the catheter itself. As with any procedure, it was a little sore and swollen for several days while it healed, but nothing unmanageable. I waited for it to heal for a couple of weeks and then did about 4 days of training on how to do PD at home.
Bringing home my dialysis cycler was overwhelming at first. My life completely revolved around it and this new responsibility to it. When I first started doing PD at home, it was all I thought about. I would plan my day around making sure I was home on time at night to set up my machine and start dialysis. Getting the supplies and machine ready for treatment could be a somewhat daunting process especially on nights when I was really tired. However, it only took about 15 to 20 minutes to get all set up and could be done earlier in the evening so that it was ready when I wanted to go to bed. My treatment took about 8 to 9 hours. Then the next morning I would get disconnected from the cycler, check my weight and vitals, then get ready for work.
It was hard at first for my husband to see me do dialysis. It definitely took some time for both of us to get used to, but it got a lot better once I had a routine established. Eventually, it got easier to sleep through the noises and lights from the machine. We even went on several trips where I took my dialysis cycler with me. It could be a lot of work to travel with my machine and all my supplies, but that too got easier after we got the hang of it. If we were going on vacation, with advanced notice to the supplier, I could have most of my supplies delivered to the hotel where we would be staying. And my cycler could be checked for free because it was a medical device.
I think doing PD was a great choice for me, because I was listed for a transplant, so I only had to do PD for a short time. Once I received my transplant, I was able to have my catheter removed. I only wish that my nephrologist would have been more open to discussing the different types of dialysis therapies with me instead of immediately insisting that I do hemodialysis. That is my hope for other patients as well, is that their doctors will discuss different types of dialysis so that patients can make the best decision for themselves. Dialysis is not easy and not everyone’s experience with dialysis is a positive one. Not everyone is a good candidate for PD. My advice to other patients is to do some research to inform yourself and find out as much as they can about their dialysis choices.
-Written by Lacy Smith . Lacy was diagnosed with chronic kidney disease at age 8. She is a former dialysis patient and kidney transplant recipient.