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RenalWEB is pleased to begin a new section on our web site called "Your Words". We are very excited to have as our premier feature a series of articles by Michael Williams which describe his experiences with Slow Noturnal Home Hemodialysis. This form of dialysis is gaining acceptance and supporters and is about to be boosted by a number of new products that will reaching the marketplace in the next year.

If you are interested in writing about your experiences or special knowledge in dialysis, please contact RenalWEB by e-mail at renalweb@renalweb.com - Gary Peterson, RenalWEB

Nocturnal Home Hemodialysis - A First Person Account

Part I

By Michael Williams

Even with more than 25 years’ notice I was caught off guard when my kidneys began to fail in 1996.

The polycystic kidney disease (PKD) I had inherited from my father was in its final stages. My kidneys were many times their original size. I had no discernable waistline, no visible rib cage.

I didn’t know how to react to the thought of dialysis. I had done no advance research and now I was too tired and too sick to play catch-up.

Like most people at this stage, I was put on a regimen of three four-hour sessions in hospital each week for hemodialysis. Because of previous abdominal surgeries, peritoneal dialysis was not at option for me.

After a few months of only getting by from one session to the next, I had resigned myself to at least a temporary life of pain, nausea, fatigue, itching, cramps and - worst of all - a lousy diet.

Then I was introduced to an alternative.

About two years ago, at age 46, I was invited to join an experimental program named Slow Nocturnal Home Hemodialsysis, or SNHHD, at Wellesley Hospital in Toronto.

After about six weeks’ training, I was set up at home with a dialysis machine (a Fresenius 2008H) and everything else needed to conduct the procedure at home. Six, sometimes seven, nights a week, I would connect myself to the machine at bedtime and dialyze while I slept, usually seven or eight hours.

Patients who had been involved in the Toronto pilot program from its start in 1994, had all raved about their improved lifestyles. So did a similar group at a Lynchburg, Virginia, dialysis clinic. Even the Mayo Clinic expressed interest.

But after feeling so low for so long, I had my doubts; doubts that would be proved wrong in the weeks and months to come.

I, like those before me, started to realize the benefits immediately. My energy and stamina increased steadily. So did my self confidence.

After having taken medication for high blood pressure for more than two decades, I was taken off them entirely. The daily home hemodialysis was keeping my pressures in check.

No longer did I have to concern myself with what I ate or how much I had to drink. Daily dialysis meant no more bloating or swelling.

In addition, clinical results were superior to conventional peritoneal or hemodialysis. The removal of waste was consistently higher, in some cases three times as high.

Overall, patients also reported fewer of the irritants associated with kidney failure, like itching, cramping and nausea. Many returned to work full time.

One of the procedure’s first participants - a man who had undergone a failed transplant - compared life under SNHHD as comparable to the successful period of his kidney transplant. He remains in the program today.

Over the years, there has been various cost studies done in both Canada and the U.S. While results vary somewhat, all determined the cost of treating hemodialysis patients at home was less than in-center care; in some cases half as much.

So what’s the catch? Why aren’t more dialysis patients being given the chance to get a hold of their lives again? Some estimate that as many as 40 per cent of dialysis patients would be eligible.

The answer, as expected, is not an easy one.

With the number of persons requiring dialysis worldwide increasing at a rate of 10 to 15 per cent annually, it only makes sense that there should be more patient involvement. Especially if by doing so, it’s possible to markedly improve the quality of life for an individual. Society and the economy benefit in turn.

Physicians involved in the Lynchburg program, who met with the Toronto staff after hearing of the method at a dialysis conference, were also swayed by projects in other countries. In France and Japan, for example, better rates were reported when patients were dialyzed eight hours per treatment, three times a week. In Italy, some patients are dialyzed two hours per treatment, six times a week.

With just more than 30 patients involved in the Toronto program, administrators have applied to the government for permission to double that number.

But while interest continues to be expressed by both patients and medical professionals - in Canada and the United States - progress seems slow.

Some nephrologists suggest patients can even get by on far less daily home hemodialysis. (Keep in mind the daily two-hour sessions in Italy.)

Some patients insist peritoneal dialysis is the way to go. And who can argue with so many positive reports?

But again, it gets back to feelings of independence; patients being given the opportunity to live their lives constructively.

Like many other areas of medicine, the treatment of kidney failure is evolving rapidly. Patients have a right to research new methods and feel comfortable discussing them with their doctors.

The push is on in general for more home care. The treatment of kidney patients could be a model.

 

In the next article, I will write about the people and methods behind training for SNHHD. In the meantime, if you have any questions or suggestions, you can contact me at the Discussion Groups section of this web site or at mallan_1999@yahoo.com

 

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