Hi Amy! Well, not knowing your mom it`s difficult to say whether she will want to talk about it or not. She`s been through a pretty traumatic time recently, by the sounds of it, and might just need some `normality` back in her life right now. She might just want to have some space to recover from being on tx and having pneumonia. On the other hand, she might be very glad to have the chance to talk it all over with someone who cares. I`m sure you must have many questions you want to ask, but I think you`ll probably have to `play it by ear`, and if she doesn`t feel like going over it just now then maybe its best to respect that. Just having you and your son there with her will give her a real boost I`m sure!
Aj said
Mar 28, 2013
Thanks everyone for the encouragement, i definitely need to get myself in check before i see her. My son & I are in route, so i will her soon & will definitely check back in here with her status, etc. I'm anxious to get there & just chat with her. I do have a question. My sister keeps saying that she keeps conversation "as normal as possible" when she's with her b/c mom lives this ask day everyday, but i have so many questions! Should i not talk about the recent issues & upcoming plan?? And yes she is stopping TX altogether.
Thanks everyone!
Amy
JoAnneh said
Mar 28, 2013
What a precious daughter you are! Trust tge doctors and go love your mother! Your mom needs it and so do you! Xxoo
Bills said
Mar 28, 2013
Hi Amy,
Jill beat me to all the nice things she said to comfort you. very understandable how upset you are and I commend you for looking into this discussion forum. Many of us here do have experience in not tolerating treatment SX and you seem to have hit on all the big ones many of us has suffered. Remember most of these things are or sound like side effects. From what read I think you said they stopped treatment. If so better don't go further till she bounces out of this setback. I also commend you for going to be there I'm sure she will be comforted with you there and your sister as well. You seem to have done some research on HVC and TX. Your Mom appears to be doing the right thing and listening to the Dr's they seem to be on it. Dosen't sound like she's been in TX long which could be in her favor ( if she was still on Inciveck ). There is a lot of new stuff coming out I myself am waiting for a better one again. We'll will keep her and both you 2 sisters in our prayers. If you have time and check in somebody here will always listen and do the best we can do to keep you sane.
best of luck to you and your family
Bills
Aj said
Mar 27, 2013
Hi all, I've been reading through posts over the last few days & finallha have the courage to ask some questions myself. My mom has had HCV for approx 38 yrs (when I was born she had a blood transfusion). She was in a clinical study approx 9 yrs ago but couldn't finish or was not responsive (I may not get all the terms right). So this past fall she decided to get tested again to find out where she stood (she chose to ignore her HCV since the meds didn't work). But I think she started to have a lot of symptoms & needed to go in. Well she is stage 4 genotype 1; this isn't REAL confusing to me but the following is....they started her on thter triple therapy. At first she was ill (throwing up, etc) bshe over the past 3 weeks she has gotten REALLY bad. Her platelet count has been at 38, they took her off the Incevik last friday but also because she has this HORRIBLE rash. (This really is a long story-sorry) but has also been told that she has a verices (sp?) they are watching while on tx, her stomach is extended, her feet are swollen, her face is swollen, she was given a Benadryl shot to help the itching, I believe they are takithey're off the Ribavarin this Friday. Well yesterday she left work (yes the poor soil is working full time) because she was shaking so bad it was like she was having convulsions & when she reached her house she threw up yellow. She also lost my step dad to HepB complicates that are VERY similar to what she is going through now. She is very short of breath Too. Well the doctor ordered a chest X-ray this a.m. & the results are pneumonia. They have her on an antibiotic now....I could go on & on but i think you all are aware of other sx if rom HCV & tX. My question is this, I think she was compensated prior to tx & it seems like she's tx intolerant & the meds have kicked her into decompensated. (more hx here) I olive 5 hrs away from her, she lives alone, she left my sister & I when we were 16 & 18 (now 38 & 40), my mom has relocated near my sister 1.5 yrs ago (we think because she knew she was really ill) but when I talk to my sister she doesn't seem overly concerned, I talked to the dr's office for info but they are kind of tight lipped, my sister said "I've not in denial about what's going to happen". So I need to know what you all think....is my mom in ESLD & is now going through her "time". I'm leaving to go there tomorrow morning, it's killing me to be this far away & not know anything, I feel like I'm making these issues that my mom is having more serious than they are because I'm not there & my sister isn't "freaking out" so maybe I shouldn't be, right??
thanks in advance for any insight into what she is really going through...I need honestly & clarity before I reach her tomorrow!!
Amy
Cinnamon Girl said
Mar 27, 2013
Hi Amy, and welcome to the forum.
I`m very sorry your mom is so poorly at the moment. It`s perfectly understandable that you must be very worried about her, especially since you lost your step dad in the way that you did, but please try not to jump to any conclusions about the severity of her condition. I`m sure you`re right that being away from your mom and sister is making everything seem more scary for you, and you are imagining the worse possible scenario.
The sx (side effects) from the triple therapy with incivek can be severe and very hard to cope with and the rash and other sx should start getting a lot better once she has stopped tx (treatment). Are they taking her off tx altogether now? Quite often people are more prone to infections while on tx, and since she has been working full time up to now as well she must be exhausted. The main thing is that she is getting medical treatment for the pneumonia and the antibiotics should make a big difference. It seems very unlikely that being intolerant to tx would have accelerated her cirrhosis from compensated to decompensated, and within such a short space of time, but of course I`m not a doctor. I`m afraid it`s not possible for us to be able to tell how sick your mom is, but try to remain positive and trust that her doctors are giving her the best treatment possible.
Give your mom a big hug when you see her, being there for her is the best thing you can do! I hope things turn out well, we`re here any time you want to talk.
Hi Amy! Well, not knowing your mom it`s difficult to say whether she will want to talk about it or not. She`s been through a pretty traumatic time recently, by the sounds of it, and might just need some `normality` back in her life right now. She might just want to have some space to recover from being on tx and having pneumonia. On the other hand, she might be very glad to have the chance to talk it all over with someone who cares. I`m sure you must have many questions you want to ask, but I think you`ll probably have to `play it by ear`, and if she doesn`t feel like going over it just now then maybe its best to respect that. Just having you and your son there with her will give her a real boost I`m sure!
Trust tge doctors and go love your mother!
Your mom needs it and so do you!
Xxoo
Hi Amy,
Jill beat me to all the nice things she said to comfort you. very understandable how upset you are and I commend you for looking into this discussion forum. Many of us here do have experience in not tolerating treatment SX and you seem to have hit on all the big ones many of us has suffered. Remember most of these things are or sound like side effects. From what read I think you said they stopped treatment. If so better don't go further till she bounces out of this setback. I also commend you for going to be there I'm sure she will be comforted with you there and your sister as well. You seem to have done some research on HVC and TX. Your Mom appears to be doing the right thing and listening to the Dr's they seem to be on it. Dosen't sound like she's been in TX long which could be in her favor ( if she was still on Inciveck ). There is a lot of new stuff coming out I myself am waiting for a better one again. We'll will keep her and both you 2 sisters in our prayers. If you have time and check in somebody here will always listen and do the best we can do to keep you sane.
best of luck to you and your family
Bills
Hi all, I've been reading through posts over the last few days & finallha have the courage to ask some questions myself. My mom has had HCV for approx 38 yrs (when I was born she had a blood transfusion). She was in a clinical study approx 9 yrs ago but couldn't finish or was not responsive (I may not get all the terms right). So this past fall she decided to get tested again to find out where she stood (she chose to ignore her HCV since the meds didn't work). But I think she started to have a lot of symptoms & needed to go in. Well she is stage 4 genotype 1; this isn't REAL confusing to me but the following is....they started her on thter triple therapy. At first she was ill (throwing up, etc) bshe over the past 3 weeks she has gotten REALLY bad. Her platelet count has been at 38, they took her off the Incevik last friday but also because she has this HORRIBLE rash. (This really is a long story-sorry) but has also been told that she has a verices (sp?) they are watching while on tx, her stomach is extended, her feet are swollen, her face is swollen, she was given a Benadryl shot to help the itching, I believe they are takithey're off the Ribavarin this Friday. Well yesterday she left work (yes the poor soil is working full time) because she was shaking so bad it was like she was having convulsions & when she reached her house she threw up yellow. She also lost my step dad to HepB complicates that are VERY similar to what she is going through now. She is very short of breath Too. Well the doctor ordered a chest X-ray this a.m. & the results are pneumonia. They have her on an antibiotic now....I could go on & on but i think you all are aware of other sx if rom HCV & tX. My question is this, I think she was compensated prior to tx & it seems like she's tx intolerant & the meds have kicked her into decompensated. (more hx here) I olive 5 hrs away from her, she lives alone, she left my sister & I when we were 16 & 18 (now 38 & 40), my mom has relocated near my sister 1.5 yrs ago (we think because she knew she was really ill) but when I talk to my sister she doesn't seem overly concerned, I talked to the dr's office for info but they are kind of tight lipped, my sister said "I've not in denial about what's going to happen". So I need to know what you all think....is my mom in ESLD & is now going through her "time". I'm leaving to go there tomorrow morning, it's killing me to be this far away & not know anything, I feel like I'm making these issues that my mom is having more serious than they are because I'm not there & my sister isn't "freaking out" so maybe I shouldn't be, right??
thanks in advance for any insight into what she is really going through...I need honestly & clarity before I reach her tomorrow!!
Amy
Hi Amy, and welcome to the forum.
I`m very sorry your mom is so poorly at the moment. It`s perfectly understandable that you must be very worried about her, especially since you lost your step dad in the way that you did, but please try not to jump to any conclusions about the severity of her condition. I`m sure you`re right that being away from your mom and sister is making everything seem more scary for you, and you are imagining the worse possible scenario.
The sx (side effects) from the triple therapy with incivek can be severe and very hard to cope with and the rash and other sx should start getting a lot better once she has stopped tx (treatment). Are they taking her off tx altogether now? Quite often people are more prone to infections while on tx, and since she has been working full time up to now as well she must be exhausted. The main thing is that she is getting medical treatment for the pneumonia and the antibiotics should make a big difference. It seems very unlikely that being intolerant to tx would have accelerated her cirrhosis from compensated to decompensated, and within such a short space of time, but of course I`m not a doctor. I`m afraid it`s not possible for us to be able to tell how sick your mom is, but try to remain positive and trust that her doctors are giving her the best treatment possible.
Give your mom a big hug when you see her, being there for her is the best thing you can do! I hope things turn out well, we`re here any time you want to talk.
All the best to you and your family, Jill