I originally posted Dr. Faber's 28 year story here
http://ihatedialysis.com/forum/index.php?topic=2034.0 - this is the last update I can find:
Thirty-Five Years on Dialysis Richard L. Faber, Ph.D.
On June 12, 2003 I celebrated—if that’s the right word to use—my
completion of 35 years on hemodialysis. It’s hard for me to believe it, too.
That amounts to over 5,460 treatments. The first five years I had home
dialysis with my loving wife Susan assisting; the remainder on center
dialysis at a variety of facilities.
The only interruption was an unsuccessful renal transplant in 1973 that
rejected after five days.
Although the principles of hemodialysis haven’t changed, I’ve seen a
few improvements that have made life easier for today’s patients. When I
began, in 1968, treatments were six hours loooonnnng. The dialysis filters
(dialyzers) were much less efficient, they often leaked, and setting the
machine to take off a desired amount of excess fluid was little more than a
guess.
In those days, the method of circulatory access was the arterial-venous
shunt invented in 1960 by Belding Scribner, M.D., who passed away in June,
2003. Prior to the introduction and wide-spread use of the Scribner shunt,
end-stage renal disease was always fatal—my mother succumbed to it in
1962 at the age of 51—because each time a patient was dialyzed, an artery
and vein had to be damaged, making it necessary to find a different site for a
subsequent dialysis. At most, perhaps a half-dozen treatments could be
performed before doctors literally ran out of places to connect the patient to
the kidney machine. Hemodialysis was, before the use of the shunt, therefore
primarily used for acute, reversible episodes of kidney failure.
The shunt, which made chronic dialysis possible, was constructed of a
new material, called Teflon, originally chosen because it was believed it
wouldn’t react with human tissues, but its real value was that blood cells and
platelets wouldn’t stick to it and cause a clot. The ends of two pieces of
Teflon tubing were surgically implanted under the skin into a vein and an
artery, either in the forearm or, as in my case, in an ankle. The two other
ends were brought out through the skin and hooked by a plastic connector.
This formed a U-shaped loop, routing the blood from the artery back to the
vein.
When dialysis was to be performed the two branches of the U would be
disconnected and attached to the artificial kidney. There was no need to
make a new incision or damage the vessels. Dialysis could therefore be
performed repeatedly, three times a week. The drawback was that the fistula
wouldn’t last indefinitely. Infections and eventual clotting usually limited its
useful life to a few months to a year or more. In my case, after several
months, my shunt would clot. Sometimes it could be fixed with anticlotting
agents; at other times, a surgical procedure would be required to relocate the
fistula a little higher in the leg.
The first big advance for me was the arterio-venous fistula, a wholly
internal circulatory access, developed by Brescia and Cimino in 1966.
Typically, an AV-fistula for dialysis is formed when the surgeon makes an
end-to-side connection of the cephalic vein into the radial artery in the
forearm.
The fistula is entirely under the skin, and access is made via two
needles inserted into the vein, which over time becomes enlarged because of
the higher pressure of the artery.
The fistula was truly liberating. I could now shower without covering
an extremity in plastic, I could swim, and I no longer worried about clotting
or infection. The AV fistula is now the preferred type of access, according to
the Kidney Foundation’s DOQI (Dialysis Outcomes Quality Initiative)
Guidelines. As I’ve been blessed with great blood vessels, I’ve had the same
fistula for over 34 years.
The next advances in dialysis therapy were the replacement of acetate-
based dialysate with bicarbonate-based dialysate, which made treatments
more comfortable and lessened side effects like cramping; and the hollow-
fiber dialyzer, which was more efficient and controllable and leaked less
often the older coil dialyzers.
Then, in the late 80s, so called “high flux” dialysis filters and machines
made treatments even more efficient. These filters contained more advanced,
highly porous membranes, that could more rapidly remove fluid and
metabolic waste materials, including middle-molecular weight substances
that many feel are responsible for much of the symptoms of uremia. These
newer dialyzers required volumetrically controlled machines that made it
possible to “dial in” the exact amount of fluid to be removed during a
treatment. Over the years, the duration of my treatments was reduced, from
six to five hours, then four and a half, then four, and now three and a half
hours, and I’m better dialyzed than ever.
Anemia used to be one of the serious side effects of chronic renal
failure. However, in the late-80s, Epogen®, a synthetic form of a kidney-
produced hormone that stimulates red blood cell production, became
available and made severe anemia rare.
The most serious long-term side effect of hemodialysis that has plagued
me is bone disease (sometimes called renal osteodystrophy), which to some
degree plagues anyone who has been on dialysis long enough Bone
metabolism is not normal in dialysis patients. Also, a condition called beta-2
microglobulin amyloidosis, causes a sticky protein called amyloid to
infiltrate and deposit in bones and joints.
I have had two right hip replacements, spinal fusion surgery, and may
possibly undergo a right shoulder replacement. If you began dialysis in
recent years, you are probably less likely to have such problems, because of
the better membranes in today’s more efficient dialyzers and better
understanding of calcium-phosphorus balance and control of the parathyroid
glands.
As mentioned earlier, I had an unsuccessful renal transplant in June of
1973. Although it rejected after only five days, I felt ecstatically rejuvenated
while it lasted. As well as we may sometimes feel on dialysis, there is still
nothing like a real, working kidney. I am highly presensitized now (I have
lots of circulating antibodies in my system that would reject virtually
anybody’s tissue), so the possibility of a second transplant is remote.
Looking back over 35 years of hemodialysis, I can recall some difficult
times for my wife and me—a few medical crises, actually—but I’ve also
come to appreciate how precious life is and how wonderful the support of
family and friends can be. I’ve also had the privilege of meeting so many
other patients whose courage and optimism have inspired me. My
membership and activities in KT/DA have allowed me to get to know such
people.
I urge those who are new to renal disease to come to our meetings and
meet your fellow patients. We can help.
To all dialysis patients, I say enjoy life as much as possible. If you
spend 12 hours a week on dialysis, that leaves 156 when you’re not on the
machine. Make the most of these.
(source users.rcn.com/ktda1/Years_on_Dialysis.pdf)
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