My Trek into the World of Home dialysis

I was born with Spina Bifida, meaning I needed some nerves removed. This led to me having reflux, urine going back up into my kidneys instead of staying in my bladder, resulting in no bladder control. This preceded a long series of kidney infections while I was growing up, culminating in an E-coli infection in middle school that put me in the hospital for a week and scarred my kidneys.

After that, kidney failure was just a matter of time. It wasn’t until college that my nephrologist started to talk to me about dialysis and transplants. But being a 20-something college student, I didn't really want to deal with any of that. It all seemed like a huge life change and at the time I wanted nothing more than to just be a regular college student doing all the regular college student things. So, I ignored my kidney failure.

I continued to get sicker while doing my best to get on with my life the best I could. My appetite was dwindling, my energy was nonexistent, and then I blacked out and woke up in an ambulance where I was told I had a seizure from low calcium. And that was when I started hemodialysis. Now to be fair, though, I didn't feel great after dialysis—in fact on my treatment days I spent the rest of the day pretty wiped out. But at least it wasn't as bad as how I felt going through kidney failure.

Fortunately, it wasn't long before my mother matched as a kidney donor, and I received a transplant. In retrospect, getting a transplant was not the best thing for me. Due to my reflux and lack of bladder control, I was prone to infections, and infections and immunosuppressants are a bad combination. But, I had a bunch of doctors and nurses telling me how a transplant was the best thing for me and I never really thought it through. So, I had my transplant for about 2 years: 2 years of constant infections, and once my doctor started talking about going through kidney failure again and going back on dialysis, I told him to just start the dialysis now.

The last thing I wanted was to go through kidney failure again. So, I went back in-center. Three days a week, 4 hours a day. And that was life for about 10 years. I never switched modalities because no one told me I could. I never knew home dialysis existed—until my tech asked me why I was doing my treatments in-center. She told me about peritoneal dialysis and the second I heard there was a way for me to do my treatments at home I jumped at the chance. Then I found out that PD didn't work for me. It was uncomfortable, sometimes painful, and that was when my PD nurse told me about home hemodialysis. So, I trained for HHD and that's been my modality ever since, and it's how I became a patient advocate.

My home nurse was the one who told me about the patient advocate program, and she suggested I would make a good advocate. At the time I was in my 30's and I had been through several modalities. I saw it as an opportunity to help this community I had been a part of for so long. A chance to take this horrible thing that I had been dealing with my whole life, that had caused me so much pain and had brought so many complications into my life and turn it into something helpful. Maybe I could help other patients learn from the mistakes and the experiences I had lived through so they could avoid some of the pitfalls that didn't.

Home dialysis vastly improved my life and my health and all it took was just someone telling me that it was an option. So, I hope the more people I can reach, the more lives I can improve, even if it's just making the best of a bad situation.