Aa
A Curious Case
This is not a story, but just an unusual real life story:
My best-friend of 27 yrs, and I , have both known about our Hep C forever, and had planned on Treating together.
Last year, we both went in to San Francisco, to participate in one of the new Trials. I was discluded because my enzymes and bilirubin count was too high (they are all normal now, yay!)
She was excluded, because her viral load was too low, to get into the study! Her history: she is a genotype 2, and has had Hep C for 30 yrs. Five years ago, her vl was 6 million, and when she went to a bar, and had a bunch of mixed drinks, her lower legs swelled up, and had purple splotches on them, I took that to be a danger sign, and chastised her, etc.
When she went to get tested, to be in the Trial, her vl was 1000. They thought it was a mistake, and retested her, and her vl load was even lower, like 300, and she was discluded. The Doctor (Doctor Jay) gave her some imfo that I thought was very strange, he told her that she was probably "clearing the virus on her own"....what?
I ran this by my own Treatment Doctor, and she didn't buy it, and said my friend needed to go get retested. Six months after the first vl tests, she has retested, and her vl is once again 1000.
I told her this: listen, you either have Hep C (dtected, and yours is 1000) or you DONT! (I was Undetected at 4 and 12 weeks Tx) I am still pushing her to go and get a BIOPSY!!!! If she was at Stage 2, 3, or 4, at least she is genotype 2, and has such a low vl, and would only have to do SOC!!!
I am venting a little here. But I really worry about my friend! Now I see that she has purple blotches around her ankles. My husband wont get a biopsy either, and come to think of it, I avoided it for years, taking every natural home remedy I could, until my enzymes were 400/500, and my Doctor pulled me off of my whole shelf of vitamins, supplements, herbs, etc. My enzymes were back to normal, after 4 weeks of Tx, by the way.
Another weird thing is...my friend still drinks beer and wine, with lunch and dinner, which worries me even more. But alas, "I am not my brothers' keeper", or my bestfriends', or my husbands".
The other day she said, "I heard B12 is good for the liver", and I felt like saying, "I hear SOC Tx for genotype 2 works pretty well also"...but I bit my tongue. Ouch, dang tongue bumps ; }
This is why I like to hang out with other people Txing....
My best-friend of 27 yrs, and I , have both known about our Hep C forever, and had planned on Treating together.
Last year, we both went in to San Francisco, to participate in one of the new Trials. I was discluded because my enzymes and bilirubin count was too high (they are all normal now, yay!)
She was excluded, because her viral load was too low, to get into the study! Her history: she is a genotype 2, and has had Hep C for 30 yrs. Five years ago, her vl was 6 million, and when she went to a bar, and had a bunch of mixed drinks, her lower legs swelled up, and had purple splotches on them, I took that to be a danger sign, and chastised her, etc.
When she went to get tested, to be in the Trial, her vl was 1000. They thought it was a mistake, and retested her, and her vl load was even lower, like 300, and she was discluded. The Doctor (Doctor Jay) gave her some imfo that I thought was very strange, he told her that she was probably "clearing the virus on her own"....what?
I ran this by my own Treatment Doctor, and she didn't buy it, and said my friend needed to go get retested. Six months after the first vl tests, she has retested, and her vl is once again 1000.
I told her this: listen, you either have Hep C (dtected, and yours is 1000) or you DONT! (I was Undetected at 4 and 12 weeks Tx) I am still pushing her to go and get a BIOPSY!!!! If she was at Stage 2, 3, or 4, at least she is genotype 2, and has such a low vl, and would only have to do SOC!!!
I am venting a little here. But I really worry about my friend! Now I see that she has purple blotches around her ankles. My husband wont get a biopsy either, and come to think of it, I avoided it for years, taking every natural home remedy I could, until my enzymes were 400/500, and my Doctor pulled me off of my whole shelf of vitamins, supplements, herbs, etc. My enzymes were back to normal, after 4 weeks of Tx, by the way.
Another weird thing is...my friend still drinks beer and wine, with lunch and dinner, which worries me even more. But alas, "I am not my brothers' keeper", or my bestfriends', or my husbands".
The other day she said, "I heard B12 is good for the liver", and I felt like saying, "I hear SOC Tx for genotype 2 works pretty well also"...but I bit my tongue. Ouch, dang tongue bumps ; }
This is why I like to hang out with other people Txing....
Thanks, Billy. Luckily, I was able to quit drinking before I was 30 yrs old. I noticed I was developing health symptoms: after I would drink alcohol, I would have to pee about 20 times, so needless to say, it would ruin any kind of romantic date I was on. I did drink because I was nervous about intimacy, etc.
I also noticed my nose was starting to get enlarged pores, like my Dad, who is a heavy drinker. I was sharp enough to contemplate that I might be on the way to cirrhosis, and that was even before I caught the Hep C.
I also noticed my nose was starting to get enlarged pores, like my Dad, who is a heavy drinker. I was sharp enough to contemplate that I might be on the way to cirrhosis, and that was even before I caught the Hep C.
my vl was tested at 5.5 million ...at 18000!!! and at 10 million...before tx i didn't even check it out....i'll bet it was really high because my liver enzymes were over 200...when my vl was 18000 my enzymes were normal...alcohol can be such a drag...its not helping this country at all...sounds like it may kill your friend in time...good luck...at least your taking care of yourself....billy
Hey gal, ya know, people will do what they do. Letting your friend know that you will be there for her if she decides to tackle the "C" may be it for now. Certainly, you are leading, by example.
I am an alcoholic, sober 7 years. I had to hit my low. I had to take the first step. No one could do that for me. Just love your friend! We can all use love.
And, btw, hope your treatment is going well.
C
I am an alcoholic, sober 7 years. I had to hit my low. I had to take the first step. No one could do that for me. Just love your friend! We can all use love.
And, btw, hope your treatment is going well.
C
I never had trouble with my rbc. But my alt and ast were both over 100 when I was diagnosed. If it were me, I wouldn't go tapping on her belly.
Ascites makes you look like you're pregnant, blowing up the upper abdomen.
I have a friend who did tx in 2003, cleared and now drinks like a fish. It's maddening. She'll say how difficult tx was, you'd think she'd take better care of her liver. Nothing I can do or say. I try to phone her early in the day, before she's hit the bottle. Sad.
Ascites makes you look like you're pregnant, blowing up the upper abdomen.
I have a friend who did tx in 2003, cleared and now drinks like a fish. It's maddening. She'll say how difficult tx was, you'd think she'd take better care of her liver. Nothing I can do or say. I try to phone her early in the day, before she's hit the bottle. Sad.
She is only being seen by a general Physician, and it is not even her regular doctor, but I think she mentioned it was at UCSF Medical Center, so maybe they are up on things over there, hopefully.
Her labs look good, at least when we have compared, over the phone. She still ahs a high platelets count, a very good one, if I remember right...althugh her enzymes are still elevated, about twice as high as normal. Her RBC and HGB sound good, but again, I havent seen these labs myself,and who knows if she is reading them right?
At first she will say, "I feel really healthy"..but then she mentions her leg and then her arm (unilateral) being numb. She is 50 lbs heavier then when we first met, so I cant tell if her belly has ascites, or if she is just chubby.
When I see her on Saturday, I am going to hit my finger on her belly, and see if it has a hollow sound though. ( I am losing popularity with her, and my Hubs, by performing these tests on them, though)
Like you said, people are gonna do, what people are gonna do. I guess we all put a different value on our lives and health. Of course, once I found out my liver was really in trouble, I looked at my life completely differently! I appreciate each flower that I see, the colors, the smell...I have a very different and more positive outlook on life now, strangely
Her labs look good, at least when we have compared, over the phone. She still ahs a high platelets count, a very good one, if I remember right...althugh her enzymes are still elevated, about twice as high as normal. Her RBC and HGB sound good, but again, I havent seen these labs myself,and who knows if she is reading them right?
At first she will say, "I feel really healthy"..but then she mentions her leg and then her arm (unilateral) being numb. She is 50 lbs heavier then when we first met, so I cant tell if her belly has ascites, or if she is just chubby.
When I see her on Saturday, I am going to hit my finger on her belly, and see if it has a hollow sound though. ( I am losing popularity with her, and my Hubs, by performing these tests on them, though)
Like you said, people are gonna do, what people are gonna do. I guess we all put a different value on our lives and health. Of course, once I found out my liver was really in trouble, I looked at my life completely differently! I appreciate each flower that I see, the colors, the smell...I have a very different and more positive outlook on life now, strangely
Has she seen a hepatologist ?
Has she had blood work done other than the viral load.
My first doctor was disgusted with viral loads, and as someone who had ESLD with a small viral load of 750,000 I was diagnosed with decompensated cirrhosis, without a biopsy.
There are many people like me, who really believed they were healthy and had no symptoms until their livers began to fail. I was hiking, climbing mountains, swimming, and my only symptoms were the same as beginning menopause. I still can't say which were from hcv and which were from mentalpause.
Unfortunately there isn't much we can do about our friends. We can try and provide information but beyond that, our hands are tied.
Has she had blood work done other than the viral load.
My first doctor was disgusted with viral loads, and as someone who had ESLD with a small viral load of 750,000 I was diagnosed with decompensated cirrhosis, without a biopsy.
There are many people like me, who really believed they were healthy and had no symptoms until their livers began to fail. I was hiking, climbing mountains, swimming, and my only symptoms were the same as beginning menopause. I still can't say which were from hcv and which were from mentalpause.
Unfortunately there isn't much we can do about our friends. We can try and provide information but beyond that, our hands are tied.
ahhh, sounds like my husband! I probably dont even need to ask if she has had a biopsy then? It's all part of that river in Eqypt...Denial : )
Ha...educate my mom, you are very funny...she still thinks treatment is the devil..my mom can be very stubborn, she'll never give in on this...it's ok, my mom's liver is probably the least of her problems anyway...she will be one of those who will die with it and not from it I think.
I'm glad you were able to educate your mom, and hopefully she can talk to her friends about it, also.
I did the "natural remedy" thing for years, but recently my platelets slipped from 150,000, to 120,000 so I rushed into Tx.
There is NO natural remedy, that raises platelets~
I did the "natural remedy" thing for years, but recently my platelets slipped from 150,000, to 120,000 so I rushed into Tx.
There is NO natural remedy, that raises platelets~
Exactly! That was why I was a bit put off by a post on here, from a woman who found out she had Hep C last November, and that she was Stage 2, with her biopsy...and now she is 5 weeks pregnant.
I kept putting off treating my Hep C, because of a pregnancy at age 37 and another one at age 39 yrs. After having the two babies, I didn't want to try the old Treatment (Inf and Riba) because I had read it causes rages and depression. I certainly didn't want to be raging, while I was taking care of a baby and a toddler~
Good for you, to rush in, and treat it right away!
I kept putting off treating my Hep C, because of a pregnancy at age 37 and another one at age 39 yrs. After having the two babies, I didn't want to try the old Treatment (Inf and Riba) because I had read it causes rages and depression. I certainly didn't want to be raging, while I was taking care of a baby and a toddler~
Good for you, to rush in, and treat it right away!
My doctor told me yesterday sometime type 2's only have to treat for 12 weeks now. I asked this question on the hep c page and got some good info if you want to check it out. that may encourage your friend to do tx maybe...
also VL doesn't say how much damage there is to your liver as you know, but people like to thinnk that all the herbal stuff helps cause they are scared of SOC...my mom is the same way, she has Hep C for many years (I may have even gotten it from her, who knows, don't know her type), only did herbal stuff and got kind of mad at me that I went ahead and did SOC.She has lots of friends with Hep C that all do the herbal thing and avoided the SOC.
when I told her that I am UND, they can't find the virus in me now, she said "wow, I never heard of that!" I told her thats what can happen when you do the treatment!
also VL doesn't say how much damage there is to your liver as you know, but people like to thinnk that all the herbal stuff helps cause they are scared of SOC...my mom is the same way, she has Hep C for many years (I may have even gotten it from her, who knows, don't know her type), only did herbal stuff and got kind of mad at me that I went ahead and did SOC.She has lots of friends with Hep C that all do the herbal thing and avoided the SOC.
when I told her that I am UND, they can't find the virus in me now, she said "wow, I never heard of that!" I told her thats what can happen when you do the treatment!
I was told I had Hep c and in two months started treatment. This
is serious stuff.
is serious stuff.
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
