I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on June 09, 2009, 01:05:32 PM
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A Short, Daily Journey on a Fast Machine
By David Rosenbloom
May 2009 AAKP AT HOME
What makes life worth living? For me, an
energetic, self-employed 62-year-old, lefthanded
woodworker, it’s being able to get up
in the morning, fully refreshed, and go into my
shop to create fine furniture – day after day.
Two years ago I couldn’t do that. I could barely
work three short days a week. Most of my time
seemed taken by long dialysis sessions in a
clinic followed by afternoons napping because
I was so drained. I seemed to always be playing
catch up on days when I didn’t have dialysis. I
had to turn down furniture commissions. My
life was on permanent “hold.”
I was diagnosed in May 2002 with end-stage
renal disease (ESRD) and immediately started
dialysis. I had a number of offers of a kidney
from dear friends, and two actually went
through all the pre-surgery testing. Both were
rejected for medical reasons, the last only
five days before the transplant was
scheduled.
After the last near-transplant had
missed, in September 2005, I decided
to take matters fully into my own hands
and demanded I be trained for home
hemodialysis (HHD). I could no longer
abide by the clinical atmosphere and
have thrice-weekly-treatments ruling my
entire existence. I felt I was in prison
with no chance of parole. It was time
for a change and my doctors and dialysis
center staff were willing to help.
Within three months I had a full dialysis
setup operating at home, on my schedule, and
was dialyzing every other day for 3.5 hours
a treatment, using a conventional dialysis
machine. Treatment prescriptions (number and
length of treatment) vary for each patient and
is determined by a patient’s doctor. With the
gracious and loving help of my wife, Linda,
as my partner, I dialyzed in the evenings
after dinner. I became adept at operating and
diagnosing problems with the dialysis machine.
And cannulating (putting the dialysis needles in
my access) became a piece of cake – simple and
virtually painless.
More importantly, the results were immediate
and amazing. The extra treatment a week made
a world of difference in my health. I gained
strength and stamina and could now work more
days for longer periods. I began to golf and
swim again and generally felt much better. And
I had my freedom once more. I was no longer at
the mercy of the clinic’s schedule. I was in a safe,
comfortable place – my home!
This treatment regimen continued for eight months,
until I heard about the NxStage® System One,
a self-contained, portable hemodialysis machine
that weighs about 70 pounds and is the size of a
computer monitor.
I was trained on the new machine in just five
days at DaVita at Home® at UCLA by a team of
nurses headed by Michelle Rice. NxStage reports
the average training time for their system is three
weeks, but due to my prior HHD experience (and
a great training team!), my training was shorter. I
have done HHD six days a week with the NxStage
system for over a year now. Each session is about
the length of a feature movie: 2.5 hours.
This time the results were phenomenal! I no longer
have any down periods and am much stronger. I’ve
reduced my blood pressure medication, opened
my diet markedly and have not felt this good in
many years. I have traveled cross-country with
the machine by car and plane, and generally amaze
anyone who comes into contact with me when they
learn I am on dialysis.
My home hemodialysis machine
is easy to set up and user friendly.
A technical advisor is always
available over the phone should
I have any questions, and the
operator’s manual is written in
simple terms.
I look at this process like a
diabetic who has to take insulin
shots several times a day. It
becomes routine. And the payoff
of better health is immeasurable!
The long and short of all this is
to let you know life doesn’t end
with dialysis. People with cystic
kidneys or end-stage renal disease
(ESRD) need to know there are
alternate treatment modalities
(peritoneal dialysis or PD, home hemodialysis,
nocturnal hemodialysis) available to them and new
technologies are now under development which
may provide even greater freedom and health
benefits.
Daily dialysis is not a cure . I still want that elusive
transplant and, after five and a half years on the
UNOS (United Network for Organ Sharing) list,
hopefully my chances are improving. Short of a
successful transplant, I feel this is the next best
option. I largely have my independence again and
the disease no longer controls my daily life.
If you want more information about home dialysis
options, check out the AAKP Web site,
www.aakp.org/newsletters/Home-Magazine.
Then talk to your doctor and nurses. Retirement is
a long way off for me!
David Rosenbloom is a home hemodialysis patient
from Eagle Rock, Cal.
http://www.aakp.org/newsletters/Home-Magazine/