JUST DON'T WANT TO BE A PATIENT ANYMORE
been a patient for so long, I can hardly recall any other
identity. In the 60's, I identified as a hippie. This gave
me the opportunity to abuse my health and expose myself
to many conditions that made me a candidate for many other
diseases, including Hepatitis B. I suppose I contracted
acute hepatitis in '68 or '69, first diagnosed with acute
HBV in 1970, while I was a mental Patient as I continued
to be for many years while attempting to overcome my drug
addiction that first time, the diagnosis was amphetamine
psychosis, serum and infectious hepatitis, and malnutrition.
I assume I became chronic in 1970 as I did not clear the
virus for more than six months, but was not formally diagnosed
until 1994, as follows:
Chronic Hepatitis B with Delta super infection.
2. End stage cirrhosis.
3. No effective treatment worth even attempting to try.
4. 5 years to live without transplant.
1987, I became a diabetes patient and now I was identified
as a liver patient. Quarterly visits to the hepatologist,
ascites, encepholopathy, lactulose by the gallon, random
hospital stays with the pain that hepatitis cannot cause,
and the never ending fatigue. It began with I can't do things
I want to do and progressed to I don't want to do anything
and I don't even care. My wife asked regularly what we could
do about the fatigue and the only answer was: get a new
came the referral for transplant and the year-long hassle
with insurance, followed by the week long evaluation - 14
tubes of blood the first morning, interviews with coordinators,
social workers nutritionist, cardiologist, stress test,
glofil test for kidneys, the surgeon, "be ready to cash
in your chips cause there aren't any guarantees", and the
shrink. "Mr. Cobb, do you ever feel depressed?" what? I've
got an incurable, terminal disease kickin my ass everyday
and you have the nerve to ask me if I ever feel depressed????
Doc, I think it is my middle name. The question is do I
ever feel anything else?
came the interminable wait! If I weren't depressed before,
this surely did the trick. I sat in one chair an entire
year. One might ask what does Stan do? And the answer would
be "sit in a chair". The only times I wasn't there, you
could find me at the local hospital. Being a patient was
becoming a way of life. Then they started talking about
putting me in a home to make me an old patient until they
found a liver, but a miraculous call I got put an end to
I got that call, all the fear, guilt, anger, and dread rushed
out of me as I made the transition from a liver patient
to a transplant patient. This was reinforced by complications
I suffered during the next six months and the constant attention
a year ago I had a respiratory problem originally thought
to be bronchitis, then pneumonia, and, finally, nobody knew
tho ct's consistently showed particulates in both lungs.
In 6/2000, I had an open lung biopsy that confirmed that
these were concentrations of calcium in my lungs. This can
be caused by bad Parathyroid and vitamin D deficiency but
I tested negative for both of these. My case has been on
the 'net where docs go but still no treatment recommendations.
I was a transplant patient and a lung patient. I am also
a patient at a pain management clinic from pain I still
have from open lung biopsy.
is not just an identification I have taken on, though it
is not who I am. It quickly becomes a way of life that controls
how we see ourselves and others. It often controls my actions,
even my manner of speech and I hate this. The reality, as
my family has recently told me, is that it turns them off.
In other words, it is causing me to act in such a way as
to run off the people who's love I need the most.
I have made a decision to change my attitude, which often
changes my conduct by doing more on my own without always
expecting assistance and resenting those who won't assist
me. I alone handle medications: dosages and keeping refills
current. I pick up after myself and with these small adjustments,
I am already sensing a better response from the family.
Some days I can't do what I perceive as enough but I still
don't have to whine about it making others miserable.
years ago, I was sick and tired of being sick and tired.
all I know is, I JUST DON'T WANT TO BE A PATIENT ANYMORE.
dx: 10/94 - Chronic HBV, HDV, & End Stage Cirrhosis - 5
yrs. to live
Baylor University Medical Center
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