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A discussion with Larry King about her need for kidney transplantation after only 4 mo. of hepatitis C treatments!

 


Georgie's Story
(by Georgie)

I am an RN, just found out I had hep C though I've had it for 20 years.  I started feeling weak and tired all the time and having severe joint pain and feet pain (so bad I couldn't walk at times).  In addition my muscles were sore all the time.  I went to a doctor here in Fremont thinking maybe I had Lupus or something, because I had been diagnosed with an autoimmune thyroid condition in 1987 so I thought this was something similar. Anyway, she ran lab tests and it took her a month to tell me I was positive for hep C, even though I went back to her twice during that time. 

Because I had been a patient at UCSF pain management center for an unrelated back problem and on methadone for that, (I had tapered down and stopped on my own a month and a half earlier because I noticed it seemed to be sedating me more then usual),  she continually asked me if I did drugs and gave me that sideways look when I said I did not. After going off the methadone I noticed these symptoms and they kept getting worse.  I had just been promoted at work to a management position making $86,000/year and was finding I could barely make it through the day and would hurt so bad when I got home I could do nothing but lay around.  The pain meds had been masking all the symptoms except the weakness, which I was blaming on the pain meds. This doctor refused to fill out disability papers for me and only told me my results after I called and complained and told them I had made an appt. at Stanford.  She said because my ALT was within normal limits I didn't qualify for disability and that she could loose her license if she filled out the form.  I know she was stereotyping me, (but what about my symptoms, Doc?)

She is obviously ignorant about the disease and isn't aware that you enzyme levels can fluctuate throughout the disease and that there are other extra-hepatic autoimmune conditions that can be caused by long exposure to the virus.

After extensive reading I have discovered that my thyroid problem was most likely caused by hep C, and I figured out I got it from my husband 20 years ago.  He died in 1992 from an unrelated disease but was diagnosed with non-a, non-b hep in 1982.  They didn't know then what they know now about hep C, and I never gave it a second thought. Meanwhile, I have lost my job and am now relegated to part time work in a different department.  When I asked them for 2 weeks off to undergo diagnostic tests they demoted me right away, even though everyone said they were happy with my work.  I have seen a doctor at Stanford and had an ultrasound, and go back Tuesday and Wednesday for follow-up.  Because of the Hashimoto's thyroiditis (autoimmune thyroid disease) all the literature says I'm not a candidate for antiviral therapy. Moreover, having been a hospice nurse for almost 15 years I know what these therapies do to quality of life and 38%-40% chances of sustained response doesn't seem worth it to me.

To top it off we have been evicted from our $1,900./mo condo in Newark because of loosing the high paying job and not being able to pay the rent so now my son and I are going to stay with my sister in the city.  My whole life has been changed by this disease. Somehow I still know that God is in charge of my life and has it in His hands.  This is such a comfort though I watch my world crash around me.  In some way it's like I'm kept off in a calm place watching everything from the sidelines.  Oh, I do worry and agonize over my kids' future, but deep down I know I'll be safe, if not here then in Heaven someday. But the callousness and insensitivity of the medical profession really makes me mad.  Perhaps because of being a nurse, I have no illusions of being rescued by them.  There is a chance however, as they learn more about the immune response to the virus, they will be able to come up with less toxic and more effective treatments.  But I'm in Gods' hands either way.

Georgie

 

The opinions expressed on this page are solely those of the author and none of the information included is to be misconstrued as medical advise.

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Last Updated March 20, 2012