I began frantically searching the net for more information. Surely there was a way to stabilize his condition
for an indefinite period of time After all people with cancer go into remission. .The more I read the grimmer
things sounded. Terms like "end stage renal failure" kept appearing and phrases like "no cures only alternative treatments"
made my skin crawl.
We made an appointment to consult with our northern primary care physician. He did a 24 hour collection of
urine and other blood work and then told us that the tests (which he readily admitted he did not fully understand) indicated
that the kidneys were only functioning at about 20 - 25% and that we should see a nephrologist.
At this point in time the summer was almost over and we decided to try to see a nephrologist just as soon as we returned
to Florida in October. With this in mind I searched the net for "nephrologists", paid for a report and decided to visit the
nephrology practice that was recommended - not that there were many to choose from.
When I phoned for an appointment I was told that the doctor had retired, that his associatee was not accepting any
new patients and that we could have an appointment with the newest physician in that office in late November! I took the appointment
and continued to do research on the net.
I finally located several items that were slightly more positive. One was an article titled "Preserving Renal Function"
writen by a renal nurse for the benefit of other nurses which mentioned a low protein diet.
Next I located a copy of a book by Timothy P.
Ahlstrom titled "The Kidney Parient's Book/
New Treatment, New Hope". This also mentioned a low protein diet and had frequent references to a
Dr. MacKenzie Walser.
Walser was conducting clinical studies at John's Hopkins in Baltimore on that very same topic. I phoned
his office and was surprised to get a return phone call from Dr. Walser himself.
Dr. Walser offered to accept my husband as a patient, but since his practice was about half way between our summer
and winter homes it didn't seem practical. I asked him if I could have a copy of the diet he was using and he told me there
was "no diet". His regemine consisted of counting allowances in many food categories, very little protein and
a protein suppliment.
It was a complicated process requiring the cooperation of a physician, a dietician and the patient. I was
reading between the lines as I listened to him and thought I could probably do that myself.
The third thing I found was an advertisement for Calwood Nutritionals which mentioned in the ad that
their product was being used at John's Hopkins in
Dr. Walser's clinical trials. I called Calwood, spoke to Sandy (wife of the chemist and owner of the firm) and she
explaned the problems involved in using protein supplements.
There is no way to reduce pure protein to the size of a tiny pill and it is very bitter to the taste. The idea behind
protein supplements is to try to get this nutritional requirement for life into the blood stream where it is needed, without
the kidneys doing the huge amount of work they ordinarily do to digest it. The protein suppliments one can buy in health food
stores do not have the potency needed for an extremely low protein diet. Calwood Nutritionals' chemical team developed a sort
of compact chewable "candy"with potent protien value. I ordered our first month's supply which was quite expensive (in the
$200.00 range).
The next thing I ordered was Peggy Harum's "Renal Lifestyles Manual" published by R & D Laboratories which I
also found on the Internet. It suggests appropriate diets for patients at various stages of renal failure and treatment. It
recommends a low protein diet
and gives specific amounts of nutrients according to height and weight , diabetic and non-diabetic,pre- dialysis,
peritoneal dialysis and hemo dialysis. According to her standards my husband should have been consuming about 50 grams of
protein daily.
Now my question was -how did this compare with Dr. Walser's recommendations? I called Sandy at Calwood and she talked
to her husband and they informed me that Dr. Walser would probably recommend 23 grams of protein daily for a person of
my husband's build and stage of renal failure.
Twenty three grams!
The average American male consumes about 100 grams of protein daily. Every ounce of meat or fish contains about 7 grams. One
four ounce hamburger without the roll has about 30 grams of protein. (More than a whole day's allowance.) A slice of
bread or a small portion of pasta has 7 grams (at least). Every conceivable food has some protein: vegetables, cereals, even
fruit. How could a person do this?
Enter; The Glutin Free Pantry where I could find pasta that had only 2 grams per serving. Enter mushrooms as a meat substitute.
Enter low protein bread, Enter one ounce of tuna fish extended with loads of celery and lemon juice and a touch oy mayonnaise.
Add to this whole conundrum the fact that we also needed to restrict sodium, potasium, and phosphorous. The calories
took care of themselves. I started to keep charts of every drop of food that went into his mouth. Packaged food from
the super market comes with nutritional information, but produce and baked goods does not. I needed another source of food
facts. I discovered and purchased "The Encyclopedia of Food Values" by Corinne T. Netzer which lists just
about all of the nutritients in most of the food available in this country.
I could see that his condition was beginning to make him slightly nausous and he was losing weight.he was more
comfortable with low protein foods.
By the time we finally had our first appointment with a nephrologist, we were well into dieting to preserve renal function.
I had the idea that maybe he could keep this up indefinitely and never need dialysis. Or perhaps we could get a kidney before
he needed dialysis ( a pre-emptive transplant).
The nephrologist turned out to be a middle eastern, kindly, dapper man in his early 40's. He examined my husband
and sent him for blood work and told us to come back in a week after he had the results.
In the meantime I began talking about the idea of investigating the possiblity of a transplant. My idea was met with
hostility, He said he was not going for any surgery - much less major surgery. I realized he was in denial and
dropped the subject. But I kept looking on the net.
When we returned to the nephrologist's office the next week - the diagnosis was confirmed. CHRONIC RENAL FAILURE!
I tried to explain what we had already started to do regarding a diet. The doctor did not approve. He was sure
it would result in mal-nutrition. (This would be indicated by symptoms of extreme fatigue as well as a low blood albumin count.)
He asked if we wanted to see a dietician and we said "yes". He made the first appointment available with a renal dietician
in mid- December.
He gave us a booklet describing the two major methods of dialysis and said we'd need to make a decision about them
in the near future. Both required preparitory surgery..
While my husband was in the bathroom supplying another urine specimine the doctor took my hand and said "I'm sorry."
I asked "How long?" He replied "Three to six months."
As we left his office he delivered a parting salvo; "Don't eat bananas."
12/00
I prepared for the visit to the dietician by putting all of the vitamens I had been giving my husband for years in a
plastic bag and taking along "The Renal Lifestyles Manual".When we walked and she saw the book I was carrying she expressed
her approval and told me she would have asked me to secure it.
O.K. I had made a good move.Then we went on to discuss vitamens and I handed her the plastic bag. One by one she
threw the bottles in the trash. She said commercial vitamens are useless and that a person can get all the nutrients
they need from food.She was especially adamant about the possibility of Vitamen C overdose. We walked out of her office in
dismay.
In the car on the way home we made a decision. We ignored her advice and continued to follow what we interpreted as Dr.
Walser's regimine.
