Does anyone here have experience with hepatitis C?

[December]

Here's the situation. Someone very dear to me has had this disease over 30 years now. In the last two years she has developed symptoms which I believe to be end stage symptoms. She's down to 80-85 pounds from 135, she has no apatite, vomits more days than not, constant nausea. In the last two months her ankles have been severely swollen and she had no idea why. She has extreme fatigue and severe short term memory loss. She is often confused, either from the memory issues or just in general, I'm not sure. Her skin sometimes has a pale yellow hue, though I am certain I've been seeing that on and off for years.

The problem for me is that I am one of those need to know types. She's made the choice not to fight it. She isn't a viable candidate for transplant because of other health issues. I've asked her to see a doctor so we at least have a round about estimation of when the the end will have to be faced. She refused. She says she doesn't want to know, that knowing when her own expiration date is would be beyond depressing. I get that, and I guess it's her choice.

So I'm wondering if anyone has ever had a loved one pass on from this disease. If maybe anyone has any guesstimations about how long a person has once they have the symptoms she has now. I've done some reading online, several sites confirmed these are all end stage symptoms, but I haven't found a site yet that really touches on just how long that end stage may be. Considering a person can go for 30 years without any symptoms, not even knowing they have the disease, perhaps the end stage of it is more like a few years instead of a few months? I don't know. I'd like to know, though.

Any help would be welcomed and appreciated. Any trolls may kindly fuck off.

 

[KRCummings]

I know whenever I have a terminal illness the first thing I do is ask people on Lit.

 

[tinylittlegnat]

Ask vetteman or miles. Although I did forget who gave it to who.

 

[December]

Ahh hell. You're not even worth it today, KRC. Maybe some other day.

 

[KRCummings]

See the 'trolls may kindly fuck off' portion of the first post, thanks.

It's hilarious that you think you're going to get anything but trolls and Google geniuses.

 

[klingle]

Ahh hell. You're not even worth it today, KRC. Maybe some other day.

I hate KRCummings as much as you, but seriously, what did you expect? There are probably health forums or something where you could get real answers.

 

[December]

It's hilarious that you think you're going to get anything but trolls and Google geniuses.

There was someone here with a husband or brother or something dying of hep C about 8 months back. I was actually hoping that person would come forward or PM me, but I can't for the life of me remember who it was.

 

[neci]

December, no one here will be able to give you a time frame. without a doctors visit, there's really no telling. i have several friends who battle hep C, but they have all done so (for the most part) under a doctor's care. if her weight is that low, and she has other health issues, i would just recommend helping make her last days comfortable - what ever that is for her. i'm sorry.

 

[December]

I hate KRCummings as much as you, but seriously, what did you expect? There are probably health forums or something where you could get real answers.

Yeah I posted to a few of them, Lit is more fast paced and I am impatient. Those health forums take days to get any replies. I'm still checking back at the ones I posted at to look for replies, and have a doctor's appointment coming up in two weeks. I'll ask my doc for some info then. But like I said, I am impatient.

 

[klingle]

Yeah I posted to a few of them, Lit is more fast paced and I am impatient. Those health forums take days to get any replies. I'm still checking back at the ones I posted at to look for replies, and have a doctor's appointment coming up in two weeks. I'll ask my doc for some info then. But like I said, I am impatient.

In that case, disregard my earlier post. Sorry about your friend.

 

[December]

December, no one here will be able to give you a time frame. without a doctors visit, there's really no telling. i have several friends who battle hep C, but they have all done so (for the most part) under a doctor's care. if her weight is that low, and she has other health issues, i would just recommend helping make her last days comfortable - what ever that is for her. i'm sorry.

That is low for weight, right? For someone that is 5'6? She looks incredibly skeletal to me but she insists she isn't under weight.

See that is the thing. This is why I want to know a ballpark figure. Do I have the time to plan a vacation with her? I'm not sure what I should be planning, I want to make sure I make the remaining time the best, but it's driving me bonkers not knowing even a ballpark estimate of the time left. I wanted to take her on a vacation to a spa but I can't get it planned and booked any earlier than two months from now. I'm wondering if I have that kind of time. Bleh.

I dislike this feeling.

 

[RoryN]

Here's the situation. Someone very dear to me has had this disease over 30 years now. In the last two years she has developed symptoms which I believe to be end stage symptoms. She's down to 80-85 pounds from 135, she has no apatite, vomits more days than not, constant nausea. In the last two months her ankles have been severely swollen and she had no idea why. She has extreme fatigue and severe short term memory loss. She is often confused, either from the memory issues or just in general, I'm not sure. Her skin sometimes has a pale yellow hue, though I am certain I've been seeing that on and off for years.

The problem for me is that I am one of those need to know types. She's made the choice not to fight it. She isn't a viable candidate for transplant because of other health issues. I've asked her to see a doctor so we at least have a round about estimation of when the the end will have to be faced. She refused. She says she doesn't want to know, that knowing when her own expiration date is would be beyond depressing. I get that, and I guess it's her choice.

So I'm wondering if anyone has ever had a loved one pass on from this disease. If maybe anyone has any guesstimations about how long a person has once they have the symptoms she has now. I've done some reading online, several sites confirmed these are all end stage symptoms, but I haven't found a site yet that really touches on just how long that end stage may be. Considering a person can go for 30 years without any symptoms, not even knowing they have the disease, perhaps the end stage of it is more like a few years instead of a few months? I don't know. I'd like to know, though.

Any help would be welcomed and appreciated. Any trolls may kindly fuck off.

You're using a friend's disease to get yourself attention on the GB. The underlined part was the giveaway.

New low.

 

[Image]

OK, I'm certain that you know that 85 pounds for an adult 5'6 is indeed skeletal. Her skin tone is yellow because her liver is shutting down. Yeah, I think you know that your friend is dying. I'm sad for you both...

Make some kind of happy day vacation happen now....

 

[coachdb18]

There was someone here with a husband or brother or something dying of hep C about 8 months back. I was actually hoping that person would come forward or PM me, but I can't for the life of me remember who it was.

If you wish to read, do so, if you wish to wait for another offering, go right ahead...

I do have clinical experience with immunodiagnostics, which includes viral load testing for HIV 1/2, HTLV 1/2, HbSAG and Hep C. What you're seeing is jaundice, as the biliary system (bile) builds up bilirubin ( a waste product) in the blood, giving the skin a yellowish color. The various organs in the body are all affected by the virus, and gradual failure of kidneys, brain, etc fail at varying rates, which can be somewhat assessed by tests of various sorts. But the main organ affected by Hep C is the liver. The liver acts to screen toxins from the blood, and that ability is lost with the loss of the liver, toxins affect the other organs shutting down their abilities to function.

 

[fgarvb1]

One of my brothers had hepatitis C.

Not good. Chances were 50/50

He went for a radical cure.

Chemotherapy in shot form every third day for a year.

Damned near killed him. he lost weight and aged ten years.

The doctors had advised him he would not be able to work after the third month or so but my brother is some kind of tough.

His liver regenerated itself and he leads a more or less normal life today.

He has slowed down a lot and takes time to relax...No smoking or drinking.

 

[December]

If you wish to read, do so, if you wish to wait for another offering, go right ahead...

I do have clinical experience with immunodiagnostics, which includes viral load testing for HIV 1/2, HTLV 1/2, HbSAG and Hep C. What you're seeing is jaundice, as the biliary system (bile) builds up bilirubin ( a waste product) in the blood, giving the skin a yellowish color. The various organs in the body are all affected by the virus, and gradual failure of kidneys, brain, etc fail at varying rates, which can be somewhat assessed by tests of various sorts. But the main organ affected by Hep C is the liver.

i knew all of that already. I'm just not sure of a time frame between the symptoms she has now and the end. I am aware she is dying. She knows she is dying. Knowing she is dying isn't the issue.

I wonder if it were me would I feel the same way and not want to know how long I had left? I wonder if given the opportunity to know just how many people would opt not to find out.

 

[December]

One of my brothers had hepatitis C.

Not good. Chances were 50/50

He went for a radical cure.

Chemotherapy in shot form every third day for a year.

Damned near killed him. he lost weight and aged ten years.

The doctors had advised him he would not be able to work after the third month or so but my brother is some kind of tough.

His liver regenerated itself and he leads a more or less normal life today.

He has slowed down a lot and takes time to relax...No smoking or drinking.

My father went for some kind of crazy treatment as well. He had hep C for more than 30 years too. He was in some kind of trial they did two years ago. I'm not entirely sure what they used or how it worked but he did end up in the group that got the real drug not the placebo, and he is apparently cured of the hepatitis now. He was a very healthy guy to begin with though. He wasn't a drinker, had a very positive outlook on life, took care of himself and his body otherwise. I think it made a bit of a difference going in for him to be as healthy as he could be and have that super positive outlook. There were others in his trial group that got the same medication he did and they didn't do so well.

 

[Image]

i knew all of that already. I'm just not sure of a time frame between the symptoms she has now and the end. I am aware she is dying. She knows she is dying. Knowing she is dying isn't the issue.

I wonder if it were me would I feel the same way and not want to know how long I had left? I wonder if given the opportunity to know just how many people would opt not to find out.

The case could be made that none of us know our time frame. You're healthy and could die before her in real time...

I think when someone is diagnosed with a terminal illness that's when they realize a timeframe. And at that point it doesn't really matter a specific date, you don't really have a choice. You just know...

Alternately, would people opt to know if it wasn't a terminal disease, when they would die? Good question...

 

[Image]

My father went for some kind of crazy treatment as well. He had it for more than 30 years too. He was in some kind of trial they did two years ago. I'm not entirely sure what they used or how it worked but he did end up in the group that got the real drug not the placebo, and he is apparently cured of the hepatitis now. He was a very healthy guy to begin with though. He wasn't a drinker, had a very positive outlook on life, took care of himself and his body. I think it made a bit of a difference going in. There were others in his group that got the same medication he did and they didn't do so well.

This is confusing...

 

[December]

This is confusing...

Which part?

 

[jomar]

Wish I could help but the few people I know who have/had it got into research programs and fought it.

 

[warrior queen]

I have a friend who has been end-stage for over a year.
During the course of this year, he has lost a third of his body weight, has been susceptible to every viral bug known (resulting in a year-long cold infection), and has been the most awful shade of baby-poo yellow which is now darkening almost to brown. He sleeps about 20 hours a day now, as his energy stores are almost fully gone just through fighting from one day to the next.
When he's awake, he is quite lucid though.
His doctor has told him it could be a few weeks to even a year or two from here.
I guess it is dependent on each individual case as to how long they can continue to survive once they reach the stage where treatment is no longer an option.
Doesn't help you, I know.
My point is, there is probably no way you are going to get a definitive time frame about your friend.

 

[Licia]

Spend time with them -- whatever the allotment.

 

[RoryCockGobbler]

You're using a friend's disease to get yourself attention on the GB. The underlined part was the giveaway.

New low.

You tell 'em Rory.

 

[KRCummings]

Maybe your friend can start cooking meth and change their name to Heisenberg. I heard that works.