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By
the end of August it came back worse than before. I could not
leave bed. I would watch part of a video and would fall
asleep. It seemed like all I did was sleep. I went back to
the same doctor twice more and he told me the same thing he had before.
On the third visit to his office he ordered a couple of tests and
gave me Phenergan for the first time. Which helped some. I
was still throwing up and was always tired . When
I was not feeling any better a few weeks later I went to the hospital.
They told me I was de-hydrated and gave me fluids. By the second week
of September my health forced
to leave my job. The morning of September 11th I was at the
hospital having some tests run which the doctor had ordered
for asthma, heart and blood work. I had just come out of
the test room after the asthma test was over
and was filling out some forms in a waiting room when I was told
an airplane had just hit the world trade center.
By the time the heart test and the blood work was finished they
had attacked the Pentagon and crashed a airplane in PA. I
followed up again with same doctor and
he told me everything looked good even thought I was throwing up
and was feeling poorly. I made up my mind to find a different
doctor. I
now had no insurance, little money no answers and
was now searching for
a doctor who would see me under these conditions;
and things were not getting any better. I went to the free
clinic near home in hopes they might refer me to someone or find the
problem themselves. I was
going back to hospital
emergency room a couple of more times
where I was told that
I was once again dehydrated. I
would eat and then would through it right back up or I could not eat
anything at all and would still throw
up. I would go sometimes a week or less and be able to eat half way
(cereal, mashed
potatoes etc.) Hot food became difficult to handle so I ate things like
lunch meat when I was able, which was not often. But this
“illness” kept coming back over and over. I still slept a lot
and was just felt really awful. I was given several different stomach
meds from the hospital visits, which were made ( most often ) several
weeks or a month apart. The hospital was unwilling to run tests
and kept telling me to see my “family doctor”.
The doctors would not see me without insurance. I could not get
insurance because of lack of funds and I had lack of funds because of my
illness which required a doctor. The
doctors told me if I was that ill to go to the emergency room and I was
in a catch twenty-two. This
went on for a long time. I was on Bentol which made even sicker to
my stomach. I was then on Compazine which worked to stop a good
part of the vomiting so long as I did not eat anything. After
about a week I thought I was having an asthma attack,
I could not sit still, I shook all over and had trouble
breathing. I went to the hospital and learned these were side
effects from the Compazine and had to be treated. It took a long
time to get this out of my system. I
was then put on Zofran. When
I take Zofran it works longer than the Phergan but takes longer to work.
My family helped me by filling these prescriptions a few pills at time
due to their cost as best they could do. I
went back to the free clinic and an I saw a doctor there
who weighed me. I was at very heaviest weight ever then
at 273 pounds. The doctor at the free clinic said “well
you are obese , almost morbidly obese so its no wonder your not
healthy”. I knew then that something had to be done about all of
this. I had been going back to hospital again and again for fluids
and the vomiting had not improved. One night in late October I was so
ill I was throwing up stomach bile and blood. I was taken back
into a small room in the emergency area where over the course of five
and half hours I saw a woman from registration a nurse, two
medical students, a woman from the financial office, a couple people
from the lab, an intern. I then saw a doctor twice for less than
five minutes who told me
about places “people like you” could go. He was much more
concerned about getting paid than he was about me. (These places he
suggested were , of course places I had already been. A couple
places he suggested were places that the state ran. Not only could
you not see the same doctor twice at these state run places
, but no one knew what your care should be
and they would not run tests there.)
The emergency room doctor then
said “Well we still don’t know anything more about what’s wrong
than when you came in ” . I
told him “that’s because you have not done anything“ and that
doctor just smirked. He did not give me fluids, he did not draw
blood or do anything except let me sit for almost six hours while I
vomited. So I told him what I thought of him
and went home sick. In December I went back to the emergency room and they tried to treat me with Reglan. I had a very bad reaction to Raglan, worse than with Compazine. I found out that I did not have the trouble breathing that I did when I took the Compazine but I began to shake and could not stop. My leg would fly up over and over and my entire body convulsed. This went on for over an hour and they treated me with high levels of benedryl until it made me sleepy while the Reglan wore off. I was given fluids and sent home with orders to “see your family doctor”. I
had recalled seeing a doctor a couple years before while on a different
job and I made an appointment
to see him. He told me that we could work out something
regarding payments. He said it all sounded like my gall bladder and he
ordered a test. He became my
“family doctor”. I had a
gall balder test/scan completed and it came back
with normal results. My new doctor
sent me to a Gastroenterologist and ordered a HIDA scan test.
It was January of 2003 now. I
had the test completed and it came back that my gall bladder was in bad
shape and had to be removed. I scheduled a date to have this done
by the surgeon around the
first week of March. The second week of February I came into the
emergency room again when I could not quit throwing up. I saw the
surgeon who was going to take my gall
balder out. The Surgeon then admitted
me to the hospital and took my gall balder out. I was still vomiting
afterward. The gastroenterologist who I was waiting to see came in and
took over my care. He ordered CAT Scans, an EKG test and several
other tests. He ordered a gastric empting test to be completed.
They gave me a container of nasty scrambled eggs and I could not get
them all down. I starting vomiting. I asked if this test
could be done with liquid and was told no, that perhaps he could do it
with toast. The gastro doctor came back later and told me that
because the gastric emptying test had to be uniform, that the hospital
had to do the test with only eggs.
I was given erythromyasyn this
hospital visit and it made me very nervous, jumpy and I shook with it .
I was also given levaquin which made me sicker to my stomach. I also had
a scope of my colon and esophagus done. There were more tests. I was now
on my third hospital visit. The
gastro doctor had me meet with an endocrinologist who ran some tests, a
neurologist who ran some tests and
sent in a psychiatrist to talk to me. The gastro doctor had some
questions as to if this
“condition” was all in mind. I checked out fine with these
tests. I did have some hormone issues that the endocrinologist was
following up with me on. The endocrinologist prescribed a medicine
that was two-hundred dollars for a thirty day supply. I was still
vomiting and my weight was dropping. The gastroenterologist called
another gastroenterologist who worked with the research staff at a
hospital on the other side of the city. The gastroenterologist who
I had been seeing in the hospital came back into my room to see
me. It was the first time I heard the word
Gastroparesis. I
was given a PICC line in my arm while I was laying down in my hospital
bed. Some one came in later and took an x-ray. A couple of
hours later some one from the I.V. staff came and pulled the PICC line
out a couple of notches. The I.V. person told me to count how many
little black notches on the line were above the skin and to let someone
know if it had come in or out any farther. The next morning I
looked and the PICC line had come out a few notches so I told the
nurse. Someone from I.V. person
came in ,and with her hand,
put the PICC line back in to the skin where she wanted it. I was
sent home with an order to drink the Resource Fruit Beverage
(Juice Box). About a week later I
woke up with the chills. I
felt really cold and I had a high temperature.
I broke out in a rash of red blotches from my wrist to my elbow.
The doctor was called and I was sent back to the emergency room where
the PICC line was pulled out. I was admitted to the hospital again
and was sent to an isolation room with MRSA. I was then sent on
“furlough” to see the other gastroenterologist across town and then
returned back to the
hospital that night.
The gastroenterologist sent
in an infectious disease doctor to see me and I followed up with the
surgeon from where I had my gall balder out. All of this time I
had not been able to eat and they were still bringing me food
trays. I would try a lot of the time to eat an would vomit it back
up. The food would not go into the stomach and would just lay and
burn its way up. A couple of the nurses
gave me a difficult time for not eating.
I was sent home from
the hospital with a direction to
drink at least four of the Resource Beverages a day. These
Resource drinks were nasty tasting and more medicine than juice. I
also followed up with both of the gastroenterologist . I drank the
Resource as best I could for over three months and kept loosing
weight. It got to the point to where I could not stomach the
Resource drinks at all.
I went to see the gastroenterologist on the other side of the city again
and stopped seeing the gastroenterologist who I seen while in the
hospital. The gastroenterologist that I went across town see
became the doctor I was seeing the most often. I then had botox
injections into my stomach and this did not seem to do much of
anything. I had a G-J
tube placed exactly one week later . It was the most painful thing I
have ever lived through. I
was told the flow rate of feedings through the tube would be raised
until it was seventy. I had trouble getting past a rate of ten to
a rate of twenty. I was then admitted to the hospital across town
and stayed there as the gastroenterologist raised the flow rate. I
had a couple of tests completed and found out that their was some air in
my abdomen. I was back in the hospital for the fifth time and was
there almost two weeks. I
have been home now for a couple of months. My current weight is
159 pounds. I am waiting for the Domperidone to arrive from Canada
and still trying to decide if the gastric pacemaker is something I want
done. I have given this story as best I could to the best of
memory. During all of this time it appeared to me that one day was no
different from the next except for pain and sickness. I lost track
of time often and would only become aware of it until I was home
on my better days. I also have tried to give the jest of my
story without all the details. I have not given the details of all
the trouble I have had with home nurses, obtaining Medicaid
and/or disability (which both are still
pending after nearly a year) or all of the different tests I underwent.
Or of being stuck over and over and over with a I.V. needle. I also have
not given information as to how all of this has effected me in other
ways (mentally, financially or other wise) during all of this
time. I have also found that having a disease that is not well
known is not easy to tell other people about. It is much easier to tell
people I have stomach cancer than it is to explain what gastroparesis is
and get an eye roll or “why did I ask” look from people.
Today, I am tired most of the time, I do not eat and I have only been
able to drink sprite and water. I also found that sucking on
butterscotch candy is great if it does not bother my teeth, many of
which have rotted away and broken off due to all the stomach acid during
periods of vomiting. The G portion of the G-J tube helps keep a lot
of the stomach acid draining out (into a leg back) and I have not
had the vomiting as I did before but am in more pain and have some
problems specific to this type of tube
(pain, tape won’t hold, tube pulls, stomach lining growth,
etc.), I am not sure what the future will bring but that’s where I am
right now after over two years of not knowing and having undergone all
the treatment I stated above (as well as much more). I hope this will be
useful to those who are sick, and who know how sick they are and can get
no else can believe them. I hope the readers
understanding of this condition can become better than what mine
had been during this the past couple of years of dealing with
this. I hope that some real
research can be completed and changes made in the way medical care is
given in the U.S. so no one has to live through what I have with such a
horrific disease.
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