Nocturnal Home Hemodialysis - A First Person Account
by Michael Williams
Since writing the first article for the "Your Words" section of Renalweb several weeks ago, Iíve had a difficult time kick-starting myself to write the proposed follow-up.
Each day, I consider myself fortunate to be part of the nocturnal dialysis (SNHHD) program. My admiration for the men and women promoting this cutting-edge technology is boundless.
Since entering End Stage Renal Failure (ESRD) three years ago, Iíve been reading about this disease that has changed my life. And Iíve learned a lot.
But todayís astonishing access to information - thanks primarily to the Internet - has proved in some ways to be a mixed blessing. Weíve all heard the old saying, "A little knowledge is a dangerous thing."
Entering the word "dialysis" into one of the Internetís many search engines coughs up 16,534 sites. I figure Iíve visited maybe one per cent of those locales and already I feel more overwhelmed than enlightened.
Thatís not to say it hasnít been interesting. Iíve especially enjoyed reading contributions from individuals in the various discussion groups.
But promising news articles appear few and far between.
Thumbing through a recent news magazine, I came across an article headlined: "The Looming Dialysis Crises: Kidney Cases May Soon Outstrip Medical Services."
The story dealt with the situation in Canada, but might well have appeared in Time or Newsweek.
It was one manís story of his more than four-year wait for a transplant - his second.
Itís a sympathetic portrait, but Iíve tried to put things in context for myself.
As mentioned earlier, I was first diagnosed with Polycystic Kidney Disease (PKD) more than 25 years ago, when I was still in my teens.
Had my kidneys failed when I was 18, chances are I would have died. Twenty years ago, patients with kidney failure required 36 hours of dialysis weekly just to stay alive.
But as in most areas of medicine, dialysis and transplant technologies have progressed steadily, if not as fast as everyone would have liked.
Today, the emphasis is leaning more towards home hemodialysis after recording a decline over the last two decades.
Patients using home peritoneal dialysis have for years outnumbered those able to perform home hemodialysis, usually by about three to one.
But thanks to programs like SNHHD, that is changing. Not only are patients being encouraged to learn more about what ails them, theyíre getting the opportunity to assist in their own treatment.
In the early Ď90s, Dr. Robert Uldall of Toronto began to rigorously pursue the idea of hemodialysis patients dialyzing more often, for longer periods and at home.
He determined correctly that patients dialyzing while they slept - usually eight to 10 hours - would experience a new level of well being. The method provides a higher level of blood purification, much higher than in-center or even home peritoneal dialysis.
By 1995, results on the first few patients brought into the program showed impressive results.
Vascular access was achieved via an internal jugular catheter developed by Dr. Uldall and his colleagues and manufactured by Cook Critical Care of Bloomington, Ind.
A special "locking box" was also developed to provide added safety, virtually eliminating chances of a patient becoming disconnected during the dialysis process.
Dr. Uldall, who passed away later in 1995, would be pleased with the efforts of his successors.
And although expansion of the program has been slow, it is estimated that at least 40 per cent of dialysis patients could be trained for home hemodialysis.
The initial trial program in Toronto now includes more than 30 patients. In Virginia, the Lynchburg Nephrology Clinic (www.lynchburgnephrology.com) has started a similar program with results equally encouraging. Similar efforts are under way in New York, Cleveland and a handful of other centers in the U.S. and Canada.
Participants in the SNHHD program must complete six weeks of in-center training. Installation of equipment at home, including electrical and plumbing modifications, is fairly straight-forward.
Patients are equipped with a full-size Fresenius (www.fresenius.com/english/index.html) 2008H machine and water purification system.
So why hasnít the modality spread?
Dr. Andreas Pierratos, who heads the Toronto program today, says one of the problems is that the nocturnal hemodialysis method is not yet viewed as "mainstream."
"The health ministry (in Canada) has been asked to designate the method as established rather than experimental," Dr. Pierratos said recently. "We are still waiting for a response."
Cost, of course, is a another factor.
In Canada, where a "universal" health-care system is in place, the SNHHD method has proved to be less expensive than in-center care. Just how much less has not been determined precisely, but, as Dr. Pierratos points out, many costs must be taken into account.
For example, patients participating in the nocturnal program usually need fewer medications; they require fewer hospital visits; and many have been able to return to work full time. The savings are obvious.
Conversely, in Lynchburg, the program is currently operating at a slight loss while the clinic lobbies health-care insurers to designate additional funds for home dialysis treatments. In the end, they contend, other associated costs would be reduced.
In this age of more patient participation, the best advice for those suffering renal failure is to be aware of the options. The exchange of information on the Internet is helping individuals to achieve that awareness.
When studies show home hemodialysis offers the longest patient survival rate of all dialysis modalities, one would think that alone would be enough to see a rapid expansion of the program.
(Add to that the increased energy, reduced need for medications and the psychological boost all participants have reported.)
Increasingly, Iíve seen kidney failure patients wondering aloud whether they should remain on the transplant list. If home dialysis can be so effective, why risk the outcome of a transplant and the arduous anti-rejection drug regimen that follows?
Ideally, transplantation should be the goal of most renal patients. However, for those who for one reason or another either are not - or cannot - be candidates for a transplant, society must continue to look for alternatives.
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