My name is Anita, I'm new to the forum. I am 44 years old and reside in Michigan. I was married for 20 years and during this time, my husband found out he had been co-infected with both hiv and hepatitis c, this was in June of 1989. In December of 2002 the hiv wasnt even a factor in his death, but soley the liver, most would assume this would happen because in his situation, he's darned if he did, darned if he didnt. Meds he needed to keep the hiv in a "undetectable state" and prolong health and life had to also go through one of our most important organs, his liver, so at that he first went into "wasting", confusion, jaundice a few times, thrush, lose of body hair due to lack of testosterone which was told to us by a endocrinologist this was mainly due too the hepatitis. With men, armpit hair, chest hair, and pubic hair are tesosterone triggered, if it's very low, there goes a hint somethings wrong.
By the grace of God or a over worked guardian angel, both my children and myself were never infected, and we raised our children knowing of their fathers medical issues when we felt they were old enough, and we then educated them, and forwarned them of how society can be ruthless, uncompassionate, and just out right selfish and rude and until THEY felt comfortable with stating anything about their father's condition, we left that choice up to them, and they did wait a few years, when they were juniors and seniors in high school and YES there were comments made rudely by some, but more had compassion and empathy and wanted information about the diseases.
After my husband died, I flipped out. I had met my husband at 15 years old and was with him till his last breath at home. He is all i knew besides my children. I dedicated being a housewife and mother, that's all i wanted and needed, so when he died, i felt LOST, scared, angry, frusterated, and overwhelmed by the most simplest things. I did something i hadnt done in over 13 years, and i relapsed and did drugs for a few months and in doing so, i contracted the hepatitis c virus. No, it didnt come from my husband or i would of contracted both of his infectious diseases he had, and my genotype is different than his, he was 1A and I am a 3A. I was diagnosed in February of 2004 after being admitted into a hospital for jaundice and very dark brown/orange urine and i itched so very badly, this was in November of 2003. The hospital tested me for everything under the sun. Everything negative, including all forms of hepatitis, and hiv, all negative, but i knew, i had that gut feeling and i knew what i had seen in my husband, i knew i had to be in some "window period". They released me a week and a half later stating i had acute liver damage and to follow up with primary and did so in December, blood work came back again negative, as with January as well, and in February of 2004 it came back positive for hepatitis c.
I know HOW and WHERE i got this from, the individual has the same genotype i also have and was residing with me when i relapsed back in 2003. He did a liver biopsy and was between a 3 and 4 and they started Interferon and ribavarnin for six months. He went undetectable in second month from a 3 million vl, and stayed that way until the end of the 6th month. When he stopped, two months later iit came back - and now they want him to have a second opinion to do this again now for a year but my fear is his IRON before, during and still after is high and i asked the dr if while doing the biopsy they looked for that hemotrombosis (excuse spelling) *too much iron* they said they didnt see any signs of it at the time, and also while in treatment his platelettes were EXTREMELY low which i hear can be common.
Now, if two people, one male, one female, ones 44 and one is 50, have the same hepatitis c and the same genotype, and most likely got it from one another, would this all be helpful to the doctor who has taken on both of us as patients? My first appointment with the gastro dr is this month so i'm wondering if what worked with him will do so for me, and what didnt work for him, might not work for me? I understand we're all individuals, and can respond differently but i thought perhaps the doctors over seeing our treatment can look at both patients folders to see how each responds? With the Fibroscan out, can i get away with doing this test vs. having a liver biopsy itself? i hear it can often eliminate chances of infection, bleeding, etc, and i heard it is just as efficent in seeing just exactly how bad the liver is. Your opinion?
Sorry for the long speech but i figured the more specific i am the easier for someone to make heads from tails out of this really screwed up, kick myself in the arse, situation I'm curious as to what anyone thinks. Should i push for a year of treatment since a year didnt work for my friend? And can pushing for a Fibroscan give me the results a liver biopsy give me?
Thank you in advance for your time, information, and curtosy. Much obliged.
Anita - Michigan
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