Frequent Home Hemodialysis: More Is Better

Imagine, if you will, that you are living your fullest life. You are happily married, have 2 teenage boys, work in a vocation you love, take part in social activities with friends and family, and travel. Seems like an ideal life, does it not? Something we all strive for.

For the last 14 years this pretty much describes my life. Only I failed to mention that I also am a home hemodialysis (HHD) patient. Yes, it’s true. I actually have been a dialysis patient for more than 21 years. Unfortunately, I have very high antibodies (panel-reactive antibody titer of 99.9%), making it extremely difficult for me to find a kidney transplant donor. So here I am. Waiting.

Before I describe my success on HHD, I would like to take you back to 1998. I was around 21 years old and my life dramatically changed. I had just started my first “real” job, working for a big financial company and living with roommates in the city. At that moment, life was good. Except for one detail: my pre-emptively transplanted kidney, donated by my mother upon my graduation from high school, had begun to fail. Dialysis was now in sight.

Although I knew since I was 12 years old that my kidneys would one day fail, it was shocking when my transplant no longer worked and I had to face dialysis. (Mind you, I had no other underlying health condition.) For the next 8 years, I was receiving in-center dialysis. Treatment imposed a grueling schedule that wreaked havoc on my body. It was a burden not only clinically, but also financially, emotionally, and socially. I had to quit my brand-new job after only 6 months—there was no way that I could work a full day in the city and return to my dialysis facility 3 days per week, 4 hours per session. I had to move back with my parents and break my lease with my friends. I felt defeated, depressed, and at a total loss. I was used to being in control, and now I had lost control over my health and my circumstances. I was young and had my whole life ahead of me. All that changed the day in-center dialysis began.

In-center hemodialysis treatments were difficult for many reasons. It did not matter that I was the most compliant patient in my unit. I still ended up on blood pressure pills, used different phosphate binders, and had restless legs syndrome (among other symptoms). After each hemodialysis treatment, I felt like I had run a marathon, even though I had done nothing but sit in a chair for the past 3 hours. My symptoms were magnified after the dreaded 2-day skip. By Monday morning I was at my worst because I had not had dialysis since Friday afternoon. I felt puffy, bloated, and extremely tired, and my blood pressure was always high. I remember coming into the clinic, where the staff would “challenge” my dry weight by taking off more fluid and turning up the pump speed on the machine. This would inevitably lead to the most horrific leg cramps, so bad that the staff would push against my leg to try to alleviate the pain. Sometimes I would even vomit. Not fun.

The worst and most dramatic experiences, and I write this in plural, were the hospitalizations. The first time was for pneumonia. One day after my in-center hemodialysis treatment, I woke up with severe back pain. It was hard to breath, and I knew that something was not right. I went to the clinic and saw my doctor. He ordered chest x-rays. Sure enough, I was told that I had pneumonia and ended up at Massachusetts General Hospital for 2 weeks. I cannot even begin to describe my emotions. They placed chest tubes to treat my infection, and the pain that I felt when these tubes went into my chest was so excruciating that it remains one of my most vivid and difficult memories.

After I recovered from pneumonia, my stay at home was short lived. About a month later I ended up back in the hospital again. This time, I had a bacterial infection that was most definitely caused by my previous hospitalization. Once again, I stayed in the hospital for another 2 weeks, and I began to wonder if this was going to be my new normal. Would I be in and out of hospitals? I was determined to find a better way, and quickly.

I remembered hearing something about HHD. It was not from my doctor or even staff at the clinic, but instead from an article that I had read. My online research led me to start HHD with NxStage. Admittedly, I was terrified to go home. How would I learn to self-cannulate? What if there was an emergency? Nevertheless, my dislike for in-center treatment and how terribly I felt on thrice-weekly in-center hemodialysis far outweighed my fear of HHD. So, within a year, I transitioned to more frequent HHD.

Within the first week of being at home, I was able to stop all my blood pressure pills. I immediately had more energy and felt wonderful. My restless legs got better, and I no longer felt like I had run a marathon after each treatment. It was as if all the symptoms that I endured with in-center treatments magically disappeared. Why, you may ask? Because now I was receiving dialysis at home, 5 days per week.

More is better. Your kidneys work 7 days per week, 24 hours per day. Three treatments per week is a fraction of this and simply is not enough. Too little dialysis is why I believe that patients end up with so many complications. They have high blood pressure, cardiac issues, high potassium levels, and depression, to name a few. Many of these symptoms could be better controlled with more frequent dialysis.

I am writing this now because I am worried that HHD may become inaccessible to me and many others with kidney failure. Between 2017 and 2018, all of the Medicare Administrative Contractors (the regional organizations responsible for determining what Medicare will pay for) announced that they were thinking about limiting HHD payment to just 3 days per week. That proposal, if it became the policy for the country, literally would return thousands of people, including myself, to feeling sick again. I compare not having access to HHD to telling a patient with diabetes that they could have insulin only 3 days per week. Who would want to do that? HHD gave me my life back. No longer did my chronic illness control me. I controlled my illness.

Fast forward to 2019. I am happily married with 2 very active teenage boys. I have a Spanish teaching company, where I employ 2 part-time teachers. In 2016, I started working for NxStage, first as a bilingual patient advocate and then as the Patient Advocate manager. None of this would be possible if I were still receiving in-center dialysis for 3 days per week. I know this to be true because I have lived it. I also know that my journey is not unlike the journeys of thousands of other people who benefit from frequent hemodialysis. I hear from patients from all over the United States who tell me that they are back to doing the things that they love. They are staying healthy, working, and living their best lives, all the while receiving frequent HHD. Some journeys are even more impressive. One friend and fellow dialysis patient was on the heart transplant list. After she began frequent HHD she no longer needed a heart transplant, and she currently works full-time while raising her family. Another fellow patient wakes up early every day at 5:00 am to do Zumba before teaching preschool and later returning home for HHD. These lives are not extraordinary among HHD patients. We are living and thriving. We are controlling our chronic illness.

Although 8 years of in-center dialysis did not kill me, I lived with recurring pain and grinding hospitalizations, like many fellow dialysis patients do. My contrasting experiences with in-center hemodialysis and frequent HHD actually summarize the fork in the road for everyone in the kidney community. Will we support a system that only keeps patients alive a number of years, with middling to poor quality of life and expensive hospitalizations mixed in? Or will we give patients choices, allowing them the opportunity to thrive clinically and live robustly? When we as a society look at our options for treating kidney failure, are we willing to consider not only the cost of hemodialysis but also the cost of hospitalizations that can be traced back to poor dialysis? What about the economic activity that I generate, which far outweighs the costs of additional treatments? What about my ability to raise my children? The bottom line is that we can do better if we want to do better, and my years and the years of thousands of other patients who do HHD are the proof.