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Livermann's Story

 

I JUST DON'T WANT TO BE A PATIENT ANYMORE

I have 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:

1. 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.

In 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 liver.

Then 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?

Next 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 that talk.

When 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 to medication.

About 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.

Now 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.

Patient 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.

Recently, 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.

2 years ago, I was sick and tired of being sick and tired. Today, all I know is, I JUST DON'T WANT TO BE A PATIENT ANYMORE.

Livermann
dx: 10/94 - Chronic HBV, HDV, & End Stage Cirrhosis - 5 yrs. to live
Transplant: 09/06/98
Baylor University Medical Center
Dallas, Texas

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    Page last updated: March 7, 2003


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