Thoughts on the ASAIO Conference and Text of the Presentation

Recently I attended the American Society of Artificial Internal Organs (ASAIO) conference in New York to present the patient’s view of nightly home hemodialysis (NHHD). Before my presentation, I listened to several other presentations from medical professionals; each one spoke most favorably for daily dialysis, in either the long nightly form or the short daily form. Currently, Heath Care Financing Administration (HCFA) pays for three dialysis treatments a week, and Susan Robers’ (MPA) presentation entitled “Cost of Daily Hemodialysis,” showed that overall, daily hemodialysis would not increase the amount of reimbursement for dialysis patients, considering the reduction in hospital days and Epogen (Amgen, Thousand Oaks, CA) usage. The HCFA representative, Dr. Kang, was very receptive, but indicated the need to have congressional support. Dr. Robert Lindsay talked about the Canadian government and hemodialysis. The Canadian plan seems to work very well for the dialysis patients in that country. Dr. Robert Lockridge presented slides and reported on the nightly program in Lynchburg, Virginia. His report supported the findings of fewer hospitalizations, less Epogen taken, reduced blood pressure, no binders, and overall improvement in health. The patient speaking for short daily hemodialysis spoke of feeling much better, returning to full time work, regaining confidence, and in general, leading a better life. The following are some of my remarks about long nightly hemodialysis: “As the patient representative of the Nightly Home Hemodialysis Group in Lynchburg, Virginia, I want to share with you some of the many benefits of this dialysis modality. Mere words cannot describe to you the difference this has made in my life. Basically, this is hemodialysis done 6 nights a week, for 7 to 9 hours each night while sleeping, using slower dialysate, ultrafiltration, and blood flow rates. My introduction to end-stage renal disease (ESRD) began abruptly 11 years ago. Continuous cyclical peritoneal dialysis (CCPD), continuous abdominoperitoneal dialysis (CAPD), transplant, rejection, in-center hemodialysis, and nightly home hemodialysis—I have experienced all the options. After years of almost continuous illness, in just 1 week of nightly treatments it was all behind me. Gone were the years of no energy, high blood pressure, monster headaches, and the ever present nausea. I felt normal! Normal, what a great feeling. What’s so great about feeling normal you say? Well, I began to do the things I had wanted to do for a long time—took on extra responsibilities at work, began to plan for the future, and even added to my retirement account, all the things normal people do when they expect to have a future. The physical changes were even more dramatic than the psychologic changes—blood pressure normalized to 110 over 70 after the very first night; I had previously been on a combination of five blood pressure medications. Color returned to my previously ashen skin, I had energy again, lab results were, well, normal, and continue to be normal. I’ve felt even better than when I had the transplant. As you know, Medicare insurance currently does not reimburse dialysis units for the cost of more than three treatments per week, but it is these extra treatments that make the difference of merely existing on dialysis and living a full and productive life on dialysis. In my almost 3 years on NHHD, I have been hospitalized 1 day, and it was not ESRD related. Before NHHD, the average was 6 times a year, with stays ranging from 3 days to 3 weeks, usually on holidays. Frequently, I am asked questions by other patients considering NHHD, the questions most often asked include: Does this really make a difference in the way you feel? Yes it does. What kind of machine do you use? It is a Fresenius machine. Can you sleep? Yes. The first few days are a bit difficult; you don’t trust the machine yet, but after a few sleepless nights you will relax and sleep. Is it safe? Yes, there is a self-test of all systems before each use, and alarms to warn you of any dangers. How long does it take to learn to use the machine? Approximately 5 weeks. How long does it take to set up the machine? Approximately 1 hour. How many catheter infections have you had? None. Are there any diet and liquid restrictions? None, except for days off, on those days I am careful with potassium and liquids. Isn’t it tiresome to do this 6 nights a week? It is just routine, like taking a shower. As I said earlier, I have difficulty finding the words to convey to you the difference NHHD has made in my life. Just realize, I have my life back. This is the miracle people who are stricken with ESRD pray for. They just don’t know it yet. I thank Dr. Pierratos for helping to develop this in Canada, and Dr. Lockridge for bringing it to Lynchburg and giving me the opportunity to benefit from it. Thank you.” Everything said at the conference was favorable for the end-stage renal disease patient.

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