By Jenna Smith
My health battle began at age 6 when I was diagnosed with Dense Deposit Disease (DDD), a rare condition that causes kidney failure. At 14, I was lucky enough to receive a transplant from my father, an Oto pediatrician who has devoted much of his life to working towards a cure and treatment for all our children affected by DDD. Unfortunately after only a year-and-a-half, my body rejected the kidney. I knew I would need to be on dialysis for the rest of my life and as my doctor suggested, I began receiving in-center treatment.
After a few years of countless surgeries, feeling constantly exhausted and unable to enjoy my childhood, my family and I began to look into other options. At 18 years old, I had been through more surgeries and treatments than most people see in a lifetime. Luckily, because of my father’s line of work, in 2004 he heard about new portable home dialysis system that would give me the freedom and flexibility to actually live my life.
From that point on, everything changed. Because of the frequency of the treatment I finally felt like myself again. I was able to enjoy beginning the best part of my life; becoming an adult, moving out of my parent’s house and starting college. I dialyzed throughout my college career and graduated from the University of Iowa with a degree in both Civil Engineering and 3D Design. I moved to Oregon for graduate school in Architecture and now work in 3D digital modeling at an engineering firm in Seattle. Today, I attribute much of my success to the System One.
I was one of the first patients to use the System One and have been using it successfully for over ten years. HHD has allowed me to follow my dreams and has always been the thing that’s helped me succeed as opposed to the thing that has gotten in the way. I can’t believe that in all the years I’ve been receiving treatment with the System One, the vast majority of patients still have no idea the option exists. I urge all patients: ASK YOUR DOCTOR if HHD is right for you. If I hadn’t found HHD, I don’t know where I would be.
The Centers for Medicare and Medicaid Services (CMS) need to make a change the payment system so kidney failure patients are no longer denied access to this revolutionary treatment that has been FDA for ten years. Simply put, it can give people their lives back, and that’s worth fighting for. Work with your local Congress member to insist on the seriousness of this issue to CMS.