Change is in the Air

It seems only fitting that as 2015 draws to a close, I should pause and reflect on all that I experienced throughout the year, and ponder about what 2016 might hold in store. But first, I must apologize for ignoring my blog. I had every intention of faithfully recording my journey on dialysis. But the best laid plans got sidelined when, early last year, I was invited to join the board of the only patient run advocacy organization that supports home dialysis. I hopped a plane and headed to New Orleans, to the Annual Dialysis Conference, and the rest, as they say, is history. I have never worked so hard, for so little money, and received so many intangible rewards, in my entire life. 

I spent an action packed year, supplemented with a few personal milestones, filled with conferences, summits, lobby days on the Hill, and so much more. The irony is that the one thing I avoided like the plague, swore at over my dead body, and despised above all, dialysis, was the one thing that now filled my life with the passion of my younger days. I first got on my soapbox while I was in high school, and it was always my favorite place, but as the years stretched on, I somehow lost that passion. No matter how hard I looked, I just did not know what I wanted to do with the rest of my life.

Then I started home dialysis. Each treatment was a learning process, as I began to understand the subtle nuances of my body and how it reacted to dialysis treatments. Home hemodialysis is not without its challenges, let me assure you, but every day I got stronger, both physically and mentally. There were always questions, and the support of online communities, my clinic nurse, and other professionals was invaluable. Experience, however, really is the best teacher.

Each month, at clinic, I would share with my nephrologist and nurse what I had learned at recent meetings in the renal field. From the ASN to the FDA, it was all new and exciting. I even went to other clinics to share with other dialyzors how great I felt on home dialysis, in the hopes that some might want to explore the challenge, and benefit from a better, gentler, and healthier form of treatment.

At home, I had settled into a routine of dialysis treatments that fit my schedule, and not the other way around. If you know me at all, you know that I am fiercely independent. I find the idea of a “care partner” repugnant. I own my disease, and its treatment, and I am best suited to “care” for me. However, I respect that having a care partner is still a requirement for home dialysis (until we can get the regulation changed), and so, while I do all of my treatments alone, I was not alone in my home during treatment.

Early on, I rented part of my home to grad students, with the understanding that I do dialysis treatments in my home. I reviewed emergency procedures with them, and they were “cool” with it. In exchange, I agreed to welcome their three cats into my home. It was a win-win! And as backup, I still had my mom’s aide, and a teacher who lived nearby. And if all else failed, the EMT’s were a few blocks away. All my bases were covered, and my old nurse never questioned the arrangement.

My care partners!

My care partners!

As the year progressed, I settled in to living the “new normal”. I learned to travel with “R2D2”, my Nxstage dialyzor, and took it to New Orleans, Colorado, and California! And while I can’t say that travelling with a 100 lb. companion is fun, it is doable, with lots of advance planning, and some mishaps on the way!! Even hours of phone calls to the airlines to prearrange transport of my dialyzor did not prevent United from keeping me at the check-in counter for over an hour, while they debated their “policy” on accepting my dialyzor as baggage, despite the DOT regulation mandating that they do so! Or discovering that San Francisco airport no longer has skycaps, and there I was at the curb with 150 lbs. of medical equipment and supplies, and no way to get it to the check-in counter! And no airport personnel willing to help me! Driving across country for a month long stay in Colorado, with R2D2 in the back seat, was actually a whole lot easier!

Ruedi Reservoir

Ruedi Reservoir

I have loved meeting other dialyzors, and sharing the adventures of home dialysis with them. Having the opportunity to share my experience with legislators and other professionals has been rewarding. After a meeting at Kidney Week, the annual meeting of the American Society of Nephrologists, where I participated in a roundtable discussion, I was completely astounded when the head of Nephrology from UVA commented “we see the studies, and know the data, but hearing about it from you makes it all very real for us! Thank you!” For me, hearing your stories is what keeps me motivated to continue to seek the changes needed for home dialyzors to achieve an extraordinary quality of life.

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