Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Beth it is nice to met you..I am Jan from Louisiana and am sorry to hear of your illnesses..I have Hep C also and have had it for almost 20 yrs..I hope this group helps any questions you may have or even if ya just want to talk..Everyone here is just great..We ay joke from time to time but it helps with the stress..Again it's nice to meet you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Hi Beth Welcome to the group. My name is Terry, I live in southwest Az, Just outside of Phoenix. I have been on the Peg-intron & Rebetol seance January. Terry Beth Kern <bbbkern@...> wrote: Hi everyone ~I've been lurking and reading for a few days now and though it was about time I introduced myself.I had acute hepatitis 25 years ago. They told me I had type A. Several years ago, I learned that it had been C, but no one made a big deal so I figured it was like A -- you get it, you rest, it goes away. I have no symptoms and my LFTs are always normal. So I didn't really think about -- just thought I was a "carrier", like Typhoid or something. No one ever suggested it was a life-threatening illness or spoke to me about treatment.Hep C is not the only disease I have. 7 years ago I was diagnosed with a rare liver disorder which causes emphysema in the lungs. This is a genetic disease, so I was born with it, but it doesn't show up until your 30s or 40s. My lungs are shot. I am on oxygen 24/7 and even mild exertion makes me short of breath. I have only 23% lung function. I went and was evaluated for a lung transplant, but they turned me down flat because of the hepatitis. They will not even reconsider my case until I test free of the virus. This sort of leaves me no choice -- I can get treatment and hope or curl up in a corner and wait to die.I am on the waitng list for the Peg-Intron/Ribivarin treatment. My hepatologist feels that with my genotype (2b), normal ALT, normal appearance via ultrasound, and only slight fibrosis -- no cirrhosis (via biopsy) -- that I have about an 80% chance of clearing in 6 months. The thing that I dread is the side-effects. The doctors and articles all say "mild, flu-like," but they've never lived it. I know that everyone is different, but I worry that someone in my weakened condition with no reserves of strength to fall back on will be physically overwhelmed. I would very much like to hear from people who have done this treatment or anyone who might have an opinion on whether I should do it or not. I know that's asking a lot and maybe I'm just being stupid, but I feel I've finally found a group who knows what I'm talking about. If I had my druthers, I'd wait 5 or 10 years until I was symtomatic and then go take a "fix-it" pill. Unfortunately, because of the lung disease, I don't have that luxury.I feel much better. Maybe I just needed to vent. Sorry for writing a novel here and I appreciate anyone who made it to the end :-) . I hope to get to know many of you as this saga continues. Thanks for being there.Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Don't be sorry Beth. I personally love novels. I am on the treatment. I, too am a genotype 2B. My dr. and I are very optimistic I will be successful with treatment If it is a matter of life and death, I'd definitely pick treatment. Just plan on resting A LOT. And drinking tons of water. I try to work around my shot. I know there is a good chance of having a severe headache for a couple of days after the shot. Also, extreme fatigue which improves as the week goes on. I am on week 26 out of 48 and I'm finding the fatigue gets a little worse every week. Some weeks are better than others and sometimes I don't get the headache. If you are prone to depression, this will be a tough ordeal. I was already on a form of Prozac for severe PMS before treatment. I still have days when I get angry and depressed because I want my life back. I have to constantly remember, " this too shall pass " . My best advice is to find a good doctor, a good support system, and try to surround yourself with caring , loving people. Just don't expect them to understand unless they've been on treatment. That's where support groups like this one help. WE KNOW. And we're here to answer your questions when we can. Sharon --- Beth Kern <bbbkern@...> wrote: > Hi everyone ~ > > I've been lurking and reading for a few days now and > though it was about > time I introduced myself. > > I had acute hepatitis 25 years ago. They told me I > had type A. Several > years ago, I learned that it had been C, but no one > made a big deal so I > figured it was like A -- you get it, you rest, it > goes away. I have no > symptoms and my LFTs are always normal. So I didn't > really think about > -- just thought I was a " carrier " , like Typhoid > or something. No > one ever suggested it was a life-threatening illness > or spoke to me > about treatment. > > Hep C is not the only disease I have. 7 years ago I > was diagnosed with > a rare liver disorder which causes emphysema in the > lungs. This is a > genetic disease, so I was born with it, but it > doesn't show up until > your 30s or 40s. My lungs are shot. I am on oxygen > 24/7 and even mild > exertion makes me short of breath. I have only 23% > lung function. I > went and was evaluated for a lung transplant, but > they turned me down > flat because of the hepatitis. They will not even > reconsider my case > until I test free of the virus. This sort of leaves > me no choice -- I > can get treatment and hope or curl up in a corner > and wait to die. > > I am on the waitng list for the Peg-Intron/Ribivarin > treatment. My > hepatologist feels that with my genotype (2b), > normal ALT, normal > appearance via ultrasound, and only slight fibrosis > -- no cirrhosis (via > biopsy) -- that I have about an 80% chance of > clearing in 6 months. The > thing that I dread is the side-effects. The doctors > and articles all > say " mild, flu-like, " but they've never lived it. I > know that everyone > is different, but I worry that someone in my > weakened condition with no > reserves of strength to fall back on will be > physically overwhelmed. I > would very much like to hear from people who have > done this treatment or > anyone who might have an opinion on whether I should > do it or not. I > know that's asking a lot and maybe I'm just being > stupid, but I feel > I've finally found a group who knows what I'm > talking about. If I had > my druthers, I'd wait 5 or 10 years until I was > symtomatic and then go > take a " fix-it " pill. Unfortunately, because of the > lung disease, I > don't have that luxury. > > I feel much better. Maybe I just needed to vent. > Sorry for writing a > novel here and I appreciate anyone who made it to > the end :-) . I hope > to get to know many of you as this saga continues. > Thanks for being there. > > Beth > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Hi Beth and welcome. I had acute hepatitis 20 years ago, I went through much the same as you. The treatment does sap your energy. I didn't think that it had any impact on my respiration, just no motivation. I was ok if I relaxed, but I tired easily. I was very sick the first few times I took it, but it became easier to bear as time went on. The degree of symptoms varies pretty widely from one person to the next. If your dr knows of your lung condition and still recommends the tx, I would think it's worth a try. If you find it's too much you can discontinue it. Some people can't manage the meds and some have relatively mild symptoms. Good luck and welcome to the group. -dz- Beth Kern <bbbkern@...> wrote: Hi everyone ~I've been lurking and reading for a few days now and though it was about time I introduced myself.I had acute hepatitis 25 years ago. They told me I had type A. Several years ago, I learned that it had been C, but no one made a big deal so I figured it was like A -- you get it, you rest, it goes away. I have no symptoms and my LFTs are always normal. So I didn't really think about -- just thought I was a "carrier", like Typhoid or something. No one ever suggested it was a life-threatening illness or spoke to me about treatment.Hep C is not the only disease I have. 7 years ago I was diagnosed with a rare liver disorder which causes emphysema in the lungs. This is a genetic disease, so I was born with it, but it doesn't show up until your 30s or 40s. My lungs are shot. I am on oxygen 24/7 and even mild exertion makes me short of breath. I have only 23% lung function. I went and was evaluated for a lung transplant, but they turned me down flat because of the hepatitis. They will not even reconsider my case until I test free of the virus. This sort of leaves me no choice -- I can get treatment and hope or curl up in a corner and wait to die.I am on the waitng list for the Peg-Intron/Ribivarin treatment. My hepatologist feels that with my genotype (2b), normal ALT, normal appearance via ultrasound, and only slight fibrosis -- no cirrhosis (via biopsy) -- that I have about an 80% chance of clearing in 6 months. The thing that I dread is the side-effects. The doctors and articles all say "mild, flu-like," but they've never lived it. I know that everyone is different, but I worry that someone in my weakened condition with no reserves of strength to fall back on will be physically overwhelmed. I would very much like to hear from people who have done this treatment or anyone who might have an opinion on whether I should do it or not. I know that's asking a lot and maybe I'm just being stupid, but I feel I've finally found a group who knows what I'm talking about. If I had my druthers, I'd wait 5 or 10 years until I was symtomatic and then go take a "fix-it" pill. Unfortunately, because of the lung disease, I don't have that luxury.I feel much better. Maybe I just needed to vent. Sorry for writing a novel here and I appreciate anyone who made it to the end :-) . I hope to get to know many of you as this saga continues. Thanks for being there.Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 > Hi, > > I've been lurking for quite a while, and posting a bit recently, so I > guess it's only polite to introduce myself. Nice to meet you Margaret. I was joking about taking offense in the earlier post. :-) Chris Quote Link to comment Share on other sites More sharing options...
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