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Once I had collected all of the medical records from the primary care
doctor's office, as well as the hospital, I decided to write a letter
to him asking why his narrative reports often said one thing about my
health and the actual test results and hospital records said the
opposite. I didn't expect any meaningful answer from him as I
suspected he was beyond reason if, as part of his actions, he
really had been the one to remove the pesky actual
test results from my hospital file, not realizing the
hospital could reprint them from their computer's memory...
Effectively finding myself doctor free, I decided to get a new doctor
from the phone book. Rather than starting from scratch with another
primary doctor, I noticed there were listings for
'Gastroenterologists' and I picked one at random, I'll call him
'Dr. Tanaka'. I don't remember where I had first gotten the term
gastroenterologist from but I found it was the type of doctor for
intestinal issues and it seemed to me that I had some sort of
intestinal disorder causing my weight loss. So I was off to see him
and brought a copy of my medical test results and hospital records
with me, but none of the primary doctor's narratives.
When I arrived he was tickled as new patients to him often came from
their primary doctor's offices and he would have received a narrative
report of what the issue was. I told him I didn't have a primary
doctor anymore without going into the details but could provide him
test results and hospital records. Before seeing those, he asked me
what the issue was and I explained the several years of unexplained
weight loss and the dietary survey and hospital stay which confirmed
that I had been eating more than enough calories to gain weight, but
still lost. He decided to take my record copies and he'd look
through them and I could return the following week for his thoughts.
The following week he had an urge to do a physical examination of me
and I was caught off guard for fear my first experience of a physical
examination happening again. But he was professional about it and
seemed to do more than just look at me and run out of the room. He
even went in search of a missing testicle and hunted for it above my
pubic bone until he had discovered it a few inches higher up. Once
done, he had me get dressed and meet him in his office.
He had looked through the records and decided there was nothing he
could do for me. When I asked him if he was going to at least do
some more tests of his own before concluding that, he said he wasn't,
he didn't see any need to. When I asked him what he
thought was causing the weight loss, he instead asked how the
psychiatric nurse visits were going. As I hadn't mentioned her to
him, I realized that while I hadn't given him any of the primary
doctor's narrative notes, he must have gotten his name off of the
test result pages and/or the hospital records and had been talking to
him even though I had never been asked to sign a release allowing it.
I answered truthfully that I had been told the psychologist who
reviewed me didn't support the primary doctor's diagnosis of a
psychological eating disorder and that I was no longer seeing the
psychiatric nurse.
He felt there was nothing medical that 'could'
be found 'if looked into',
and he wasn't going bother. As a challenge to him I asked if that
meant he didn't think he'd be able to find what the physical problem
was, and he retorted that even if I went to what I'll call
'Premier Medical Center' in Denver, they couldn't find any
organic cause of my weight loss. Premier
Medical Center? I
asked. It turned out to be one of the best and
brightest medical centers in the state and as a teaching hospital
they were at the cutting edge of medical technology and
understanding... So he told me.
I decided to make an appointment with them and was soon on my way up
to Denver to find their complex and have an initial visit with one of
their gastroenterologists. I'll call him 'Dr. Donalds'.
I brought more copies of my previous tests and hospital records, but
he wasn't interested in those, instead wanting to figure things out
on his own. After I told him of the unexplained weight loss and even
the problem with corn syrup he told me that corn syrup was part of a
'Fructose Intolerance' problem and I should avoid fruit, as well, as
its sugar is also fructose; it was a rare disorder that had been
coming more to light as the food industry had been replacing regular
sugar with corn syrup. But he felt that wouldn't alone explain the
weight loss and wanted me to return early the following week for a
first of the morning urine test and then a near day long Triolein
Breath Test to see if I was able to digest fat in food.
As they needed a first in the morning urine sample, that meant I
couldn't 'go' until I was at the Center, which was awkward as I would
usually 'go' before doing anything else in the morning. Instead I
had to keep it as I took my morning shower, got
dressed, then took the hour drive to Denver, slowed down to an hour
and a half given early morning rush hour traffic. Then I had to
maneuver through the twisting hallways of the medical complex, wait
for the lab's receptionist to get on duty, I was the third in line
already for that, get checked in and then wait until the only lab
technician had finished or gotten the first two patients underway in
their tests before calling my name and was handed a cup. About two
and half hours after getting up that morning, I finally had my first
of the morning urine 'sample' out of me and I was feeling much more
comfortable.
The breath test was on another floor higher up in the building and I
arrived to wait in a longer line as PMC was now entering regular
hours and more patients had arrived. Once I checked in, they gave me
the testing 'kit' as it were. It was a small tube of thick white
stuff I was supposed to swallow and then a cage of little plastic
test tubes half filled with liquid that I was supposed to blow into
using a small, coffee stirrer type, straw. I think it was about once
every half hour I did this, until the fluid in each test tube changed
in color. I remember there were about eight tubes and so that gave
me four hours more to be at the hospital until I could go home. They
guided me to the waiting room and I began the test, blowing into the
first few of the tubes wasn't a problem, but it seemed that each
subsequent tube needed twice as much breath until its color would
change. Thankfully before the age of droning televisions in
waiting rooms, I could entertain myself by looking through
their selection of year old magazines or staring out the window and
seeing my car parked in the parking lot down below and the various
other patients as they arrived and walked into the building, or out
from under to find their car in the parking lot and go home.
Given that I had little sleep as I had to be up early enough for
these tests, with the driving time factored in, I was dead on
my feet and ready to get home and go back to bed by the last hour of
the test. But by this time I was having to blow into the second to
last tube for around ten solid minutes before it changed color...
The last tube was about twenty minutes of endlessly blowing and about
halfway through I was ready to pass-out. Still I kept at it and it
eventually started to change color. While I had begun that
particular test with a sense of curiosity, I was so glad to
finally be through with it and turned it in to the lab for
processing. After a cursory check of the tubes, I guess to make
sure they had all truly changed in color, I was allowed to go
home. I instead went to the parking lot, lowered the car seat back
and slept for a good hour or two before I felt refreshed enough to
drive through Denver traffic and get home safely.
When I returned to see Dr. Donalds about my tests, he told me
that I was concentrating my urine normally so there wasn't an issue
there, but I did have a fat malabsorption problem and I was to return
to my local gastroenterologist to get follow-up treatment for it.
After years of wanting a doctor to look into my unexplained weight
loss, I was thrilled that I now had two diagnoses that shed some
light on the issue and I could finally get
better.
But when I told Dr. Tanaka of the 'Fructose Intolerance' and
'Fat Malabsorption' findings he flat out didn't believe them, even
going so far as making fun of the Triolein Breath Test as if
it were new-agey pseudo-science that wasn't trustworthy. When I
asked him what test he would trust to verify a fat
malabsorption issue, he thought for a bit then said a 'Qualitative
Fat Analysis' . Heady with my new diagnostic labels and not wanting
to lose one, I said, ''Let's do it.''
It turned out a Qualitative Fat Analysis was collecting all of
your bowel movements into a bucket for a few days in a row, then
turning it into a lab for review. Fortunately the bucket had a lid
for the in-between times, unfortunately you had to take it off
and then figure out how to 'go into it' while ignoring the smell.
Particularly challenging if you're having bowel problems to begin
with... But it was finally done and I turned it into the local
hospital's lab. I called Dr. Tanaka's office and let them know
and made the follow-up appointment.
Before going to see him again, I had learned from my recent doctor
experiences and requested a copy of the test results a few days later
directly from the hospital's records department. When I arrived at
Dr. Tanaka's office we discussed the results, my own copy in
hand. It showed that I was 'passing' three times as much
undigested fat in my stool than the normal high level. The results
confirmed the fat malabsorption, in my eyes, and I asked him
how we treated it. He told me he wouldn't: He felt the Qualitative
Fat Analysis results couldn't be trusted. I asked him why not
and he answered ''Because I already know your weight loss can't be
organic in nature.'' How? He just knew,
he responded.
He then offered to do
exploratory surgery
on me. Why?
Would it help us figure out my weight loss?
''Oh, it might shed some light on that, too,''
he answered, leaving me with the clear impression it was other
things he wanted to look at
from the inside. I turned down this offer and left his office.
With little other choice, I decided to return to Premier Medical
Center to see if I could get my follow-up treatment there. Seeing
Dr. Donalds again, he asked why I was back. I told him that the
local gastroenterologist refused to treat me because he didn't
believe their findings. I even told him of the subsequent
Qualitative Fat Analysis test and gave him a copy of the
result sheet affirming their findings. Dr. Donalds asked what I
wanted from him? I was a bit surprised and told him to be treated
for my health issues. He explained to me that their role was to
diagnose issues, not to provide on going treatment so he wasn't going
to help me. I asked what I should do then and he said it wasn't his
concern. But who was going to treat me for my Fat Malabsorption
issue? He told me that, unless I subsequently tested positive
for A.I.D.S, it wouldn't be him...
What was that supposed to mean? I wondered on the drive
home. As I didn't have any risk factors for A.I.D.S, was that a
clever way of him saying he would never treat me? Or
was he hinting that I should go out and get myself somehow infected
in order to curry his favor and in return he would then treat
me for my weight loss issues... It wasn't like he was an A.I.D.S
doctor so I wouldn't have seen him for that, I assumed. I just
couldn't fathom my position of finally having diagnostic findings to
go with my weight loss, but now not being able to find a doctor who
would treat me for them...
When I arrived back at my mother's mobile home, I was stupefied to
find all of my belongings, that weren't locked up in my bedroom,
had been put out with the trash. Had I gotten home an hour or
so later, the trash company would have already come and I
would have lost them without knowing what had happened to them. I
quickly gathered them up and took them inside, then concluded I'd now
have to keep everything of mine in the bedroom at all times from now
on. Apparently my mother's pledge to help me through this issue
until it was taken care of was only good for two months; now
she apparently wanted me out of her home. From that point
forward, I stayed in my bedroom when she was home, and would only
spend time in the rest of the mobile home when she was asleep or at
work. To encourage me to leave, she took up pounding on my bedroom
door late at night as part of her bathroom breaks, or other times
when she was passing by during the daytime hours.
As the first copy was free at Dr. Tanaka's office, I requested a
copy of my records and I got a call that they were ready. When I
went to pick them up, the receptionist asked me if I had been on a
special diet when taking the Qualitative Fat Analysis test,
like putting lots of butter on toast in the morning. No,
the doctor hadn't mentioned I needed to be on any special diet for
it. Handing me the envelope of records she spat out at me, ''Oh,
yes you did!'' And fled to the back room before I could
respond. I stood there for a while waiting for her to come back so I
could affirm I hadn't, but after ten minutes I didn't see the point.
Before the end of the year, I got a response back from my mother's
primary care doctor concerning my letter about his systematically
ignoring my test results and hospital records and making up his own
numbers. He said that he had found that I did not
have a physical cause for my weight loss. He then repeated that he
did find that I did have a physical cause
for my weight loss. This left me wondering if he
intentionally had both sentences in there to cover himself should it
be subsequently confirmed that I had real health issues, then he
could claim the first sentence had been the one mistyped?
Regardless, I reached the end of his letter where he definitively
stated that I did have a psychological eating disorder 'of some
sort', though he couldn't say which. He didn't address my comment
that those in the psychological field didn't support that. He then
further responded to my letter by sending me a bill for the copy of
the medical records I had gotten from his office. Apparently the
first copy was only free until someone questioned his diagnoses,
then one was retroactively billed for it.
I ignored the bill and the following year he sent it off to a local
collection agency. It seems he didn't have confidence that the
collection agency would follow it up if he said it was for medical
record copies and instead told them it was for appointments that I
hadn't co-paid for. That was a mistake on his part as I was able to
go to the collection agency with my insurance payment listings and my
canceled checks and proved that for every appointment he had charged
my insurance for, I had
made the co-payments and they had cleared. The collection agency
duly agreed and rejected to honor the primary doctor's collections
request, returning it to his office as 'unproved'.
At least I had won a little battle against him, in the end.
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