By Laurie Williams
I am sharing my story because I want people with kidney failure to be educated about their treatment options and to advocate for their right to a better quality of life. I want to encourage the Centers for Medicare and Medicaid Services (CMS) to change the payment system so kidney failure patients are no longer denied access to treatments that can give them their lives back.
Fortunately, when I was first faced with kidney failure in 2003, my husband Michael had already been approved to be my living kidney donor prior to my starting dialysis, therefore I was only on dialysis for three weeks prior to transplantation. However, these short three weeks were just enough time for me to get a taste of what in-center dialysis was like. After each three-hour treatment, I went home with no energy and slept the rest of the day. I was not able to work or enjoy most of my regular activities on dialysis days. Furthermore, I found the entire in-center experience very depressing. I felt badly for the many people there who seemed to have no hope and felt blessed that my time there would be short. After transplantation, I vowed that I would never look back on that experience.
Unfortunately, lupus eventually caused my transplanted kidney to fail and I faced the need for dialysis once again. This time I did not have a living donor pre-approved and available, so dialysis was inevitable. My nephrologist talked to me about my available treatment options: peritoneal dialysis (PD) or in-center hemodialysis. Even though my previous in-center experience was so bleak, I already had a working fistula and didn’t want to undergo yet another surgery to put a PD catheter in place, so I reluctantly returned to in-center hemodialysis and got back into the same routine of three treatments, three times a week, and not a lot of energy to live a full life in between.
I just knew there had to be a better way so I started doing research on my own. I joined a Facebook group called Dialysis Discussion Uncensored created by a man named Brian Riddle who had been on an off dialysis for most of his life. I quickly became friends with Brian and his mother Barbara who informed me about “home hemo,” home hemodialysis (HHD).
The next day I asked my nurse about it, and it was only at that point I learned more. I was angry that I had been suffering the side effects of in-center treatments and no one ever told me about HHD. Once I learned that my nephrologist and center had not only withheld that information but did not offer the treatment option, I found a new nephrologist and center.
To get the therapy, I had to be put on a waitlist and when a spot opened, I had to travel about 45 minutes each way to a center that offered training. The training days with Mike as my care partner were long and it took about five weeks with a nurse by our side every day. Still, after only a few days of HHD, I felt drastically better and I knew it was worth the effort. Within the first couple of weeks I felt like myself again and I was even off all of my blood pressure meds.
On HHD, I was able to continue my business and work full-time. Life became busy and fulfilling again. And, in part because of the clinical benefits of HHD, I was able to get back on the transplant list. Now, I have a second transplant.
It isn’t right that less than 2% of patients are treated with HHD, when the majority of kidney professionals would choose it for themselves if faced with the need for dialysis. The therapy offers a substantially better quality of life and health benefits, and now patients can even dialyze while they are sleeping with the NxStage System One.
The problem is despite all of these benefits, most doctors and providers aren’t offering HHD because they are only reimbursed about 20% of the actual cost to train patients and their caregivers to dialyze at home. In 2013, I went to Capitol Hill and asked Congress to tell CMS to update their payment for home training. That year, over 40 members of Congress called on Medicare to remove barriers to home dialysis.
The call to action continues, but unfortunately the barriers to HHD remain. Now is the time for change. PLEASE ask your doctor if home hemodialysis is right for you, and ask your local Congress member to urge CMS to right this wrong.