Aa
Downhill Slide
I'm really having a bad one. Nothing seems to be working for me at the moment and I guess I feel like I'm not getting anywhere or accomplishing anything. My husband started out so great on tx and in fact I was envious until about week 6 and now on week 10. He has had constant drainage, infections and had pencillin pills, shots and now this past week it all started up again and drained into both ears. He has been so sick at nights and went to dr again and now 4 days later still sick with the earaches and can't hear. Its just hard because everyday I have tried so much to try to help with new ideas until pills start working. I'm starting to wonder if they are going to work and this is what its going to be like for him on tx??? And where is our GIPA I have posted 2 things past month and no reply. I'm so worried about the ferritin level and the more reading I do...Doesn't sound good in his favor. I'm feeling like a good relief would be to walk over to the refrigerator and pack up all of our shots and take the pills and chunk them!! I'm scared...is this our life now? Will there be an end to it? I know you guys can't say or do anything but that is the way I feel now.
Sorry to read your posting and are you waiting right now for your liver? You will be in my prayers!! I'm just a little south of Houston so its good to know that we have lots of resources. Good Luck and keep us posted on how you are doing.
WELL, DEEP SUBJECT FOR A SHALLOW MINE. IT FEELS GOOD TO BE BACK THRU FAITH IN GOD IM UP AND GOING, WHEN THEY TOLD NO HOPE 2 YEARS AGO. I WAS END STAGE LIVE DECEASE, BLEEDING, SWALLON SPLIEN, ASIDIES, SWALLON COLON,KIDNEYS WERE BAD, AND STAGE 4. SORRY I HAD TO GET THAT OUT OF THE WAY. WHERE I WAS GOING IS TRANPLANT LIST. IM FROM HOUSTON TEXAS AND WE HAVE A HARRIS COUNTY HOSP. LBJ HOSP. AND BEN TAUB THAT USE HERMANN LIVER TRANPLANT HOSP. ONE OF THE BEST AROUND. THERE IS SOME WORKING WITH STATE. BUT ONCE YOUR ON DISABILITY 2YEARS AFTER THAT YOU GET SCREENED AND ON THE LIST. MY SPECL. TOLD US THAT AFTER THAT DEPENDING HOW SICK YOU ARE, THEY HAVE SOMR NUMBERS THEY GO BY. THEY GIVE YOU A BEEPER IF THAT GOES OFF CALL THEM , AVG.3TO6 MONTHS WILL SEE. NO INCOME NO INSURANCE. LIV4GOD GOD BLESS YOU.
I think we all need to remember is that while on tx. we have a very low immune system and are very apt to get secondary infections. G.I.P.A. said that almost any antibiotic is tolerable. I even remember someone saying they were on anti-biotics the entire time on tx. Remember we have a tendency to blame everything symptom on sx. and alot of them aren't. They are something else. Joni
That is what my doctor said although the peg is still suppressing the virus. It is confusing to me too.
Yep, I was anemic but not to the point of needing Procrit. I reduced to 800mg of riba for about 2 weeks.
If I have to do this again I am going to do 1200-1400 riba to start and use Procrit to keep on that amount for 2-3 months, then drop to 1000 ...
It is interesting that without the ribavarin the peginterferon is able to suppress the virus alone.
If I have to do this again I am going to do 1200-1400 riba to start and use Procrit to keep on that amount for 2-3 months, then drop to 1000 ...
It is interesting that without the ribavarin the peginterferon is able to suppress the virus alone.
Dave ... a question.
Since you stopped the riba do you feel a lot better? I find that I have much more energy w/out the riba. I still feel the half dose of peg but nothing like a full dose.
Since you stopped the riba do you feel a lot better? I find that I have much more energy w/out the riba. I still feel the half dose of peg but nothing like a full dose.
I just posted a study showing the histological (now I spelled it right) effects of Pegasys. It is up near the top of the board.
I think you're doing the right thing too. Take care Dave.
Scott
I think you're doing the right thing too. Take care Dave.
Scott
My bl type is O neg, the universal donor. I est my chances of living to get a liver, w/no insurance and no income, slim to none. The average wait is 2yrs and the average life span of someone on a waiting list is 23mo. My only chance was to treat.
My liver failed and I was comatose before I was even tested for hep c. I was transfused w/hep c in 1979. Well, I tx'ed and cl'ed in 18 days. Fin tx (2b, 24 wks peg-intron & riba) Oct 2002. So, its never to late to tx, and there is life after death and hep c. And I far outlived the dire predictions of death.
My liver failed and I was comatose before I was even tested for hep c. I was transfused w/hep c in 1979. Well, I tx'ed and cl'ed in 18 days. Fin tx (2b, 24 wks peg-intron & riba) Oct 2002. So, its never to late to tx, and there is life after death and hep c. And I far outlived the dire predictions of death.
thanks so much for posting that as I could not figure out what happened to Erin. I didn't know that you went to her either so I guess...we will be getting a new one...soon?
Hey guys...Just noticed want2live hasn't showed for the big dinner! Tonite would be a good night to see what we are all serving and I would like to toast this one to our spouses, loved ones etc.... Would someone like to do the honors of starting a new post...
Are yoing maintenance therapy to try to stave off any progression from Stage 3 to 4? Did you clear the virus during treatment? Did you have a RVR/EVR? If so you probably reversed some of the fibrosis ... it happens in roughly 30% of patients.
I am also Stage 3 and doing 90mcg of Pegasys weekly, after 50 weeks of full strength combination treatment. I tested negative all the way through and still negative at 58 weeks, 2 months after quitting the ribavarin.
Take care,
Scott
I am also Stage 3 and doing 90mcg of Pegasys weekly, after 50 weeks of full strength combination treatment. I tested negative all the way through and still negative at 58 weeks, 2 months after quitting the ribavarin.
Take care,
Scott
Gosh, I wish I had some magical thing I could say to relieve your frustration and fear. I'm not even on tx yet, so I definitely have no wisdom to offer. I just want you to know that I'm thinking of you and hoping that things turn around for the better soon.
Sending you a big hug...
Susan
Sending you a big hug...
Susan
Thanks Everyone! Things have been put into a different light and we have called the dr again and said the ear aches had not let up and he needed relief so we got something different for that. I think what Indiana said is what the problem is because of the constant drainage..it turns into infection and then we get a clearing and starts all over and this time unfortunatley to the ears. We know it will get better...it always does! Neal..I hope I didn't scare you off since you are just beginning and tony..Thank you..your posting meant alot! Peebee..took your advice and said enough is enough! Dave...I felt bad after reading your post as you have had such a hard time and I only hope the very best for you! Fubarcat..thanks for your prayers and I'm pulling out my big girl panties lol Chevygal..your posting is awesome and you always say the right things to make everyone feel good. Dallas...yeah a hug would be great! Thanks for understanding! Cindee...yep..you keep me going because you have been through so much and thank you so much!! Indiana..well what can I say..you make me laugh and then I respect you so much! This was just one of those days and I'm grateful they are few and far between but I know we all will get through this! Love each and everyone of you guys~~
Hey...... Infections can be a big part of our life while on tx. Our immune systems are so depressed by all the anemia that we are prone to all kinds of bacterial things. Then, if we get one, it's MUCH harder for us to fight it off. Almost impossible without some antibiotics.
It sounds to me like the doctors are on the job with this one. Make sure that all the docs communicate between themselves as to what his status is so they can make the appropriate decisions involving the meds they use or keep using.
You decided to have both of you do the tx at the same time. You will be of little help to him right now as far as decision making goes because of that. Let the docs make the calls here.
I hope it all works out for the best.
But "Keep Your Eye on The PRIZE".
It sounds to me like the doctors are on the job with this one. Make sure that all the docs communicate between themselves as to what his status is so they can make the appropriate decisions involving the meds they use or keep using.
You decided to have both of you do the tx at the same time. You will be of little help to him right now as far as decision making goes because of that. Let the docs make the calls here.
I hope it all works out for the best.
But "Keep Your Eye on The PRIZE".
Hi Sweetie, I am so sad to hear about your husband having problems. It's bad enough going thru the tx. I had to go to my GP more than 2 or 3 times...maybe 4 or 5, during tx. I kept having swollen glands between my ear and neck, like the ones you have when you have strepe throat? He gave me the 6 day tx. of prednisone, the one that you take 6 the 1st day, 5 the second day, and so on. It would go away and then come back like a month or 6 wks later. I was really worried because I lost my boss, who was also one of my best friends to lymphoma (spelling?) I would get rid of one problem and then something else would happen with my health. I kept telling my husband, "if one more thing goes wrong, I don't think I can take it". And I was exactly like you, and I told my GI, I wanted to take meds, syringes and all, outside on the brick walk and competely destroy them!!!! But you both have to hang in there!!!! Give it 100% and then you'll know in your heart you did all you could do. I will pray for you and your husband, a very special prayer, lifting you both up to God. I know I've said it many times...Jesus said, "by my stripes YOU are healed". We've just got to keep on, keeping on. I love you so much, Cindee
Honey, you asked about our GIPA. Well, she's my HCV dr and is getting ready to move to PA (I think it's PA) by end of month. Just saw her this week but forgot to ask how the move prep was progressing or who would be monitoring the website to ensure we report things correctly.
Hang in there! Has your doctor cultured the drainage? It may be resistant to penicillin and your husband may need a different kind of antibiotic. Can you call your doc and ask them to culture it to make sure he is on the appropriate antibiotic.
Take a deep breath. Walk away from it all for a few minutes. Gather all your strength and try to deal with one issue at a time, then the next and the next and the next. You and your husband can get through this. Please don't give up.
You and your husband are in my thoughts and prayers. I know things will get better for you soon!
Take a deep breath. Walk away from it all for a few minutes. Gather all your strength and try to deal with one issue at a time, then the next and the next and the next. You and your husband can get through this. Please don't give up.
You and your husband are in my thoughts and prayers. I know things will get better for you soon!
<B>There will be and end and life will get back to to the way it was before!!!</B> Treatment can be the most terrible thing that you have ever experienced. Things that would normally be easy to just deal with become almost insurmountable, but if you have faith in your Dr. and his Associates then listen to them and follow there advise. It would not hurt to give em a call and double check on the problems that you having.
I never had any of the symptoms that your husband is having, but had several that seemed to be specific to me and no advise from my treating TX team, it can really be overwhelming. The hardest thing now is to trust your own judgement as TX alters it. I wish I had a simple answer for you and your husband, but have only a ear to listen with and try to reassure. Try and remmeber to take it day by day.
God Bless.
Tony
I never had any of the symptoms that your husband is having, but had several that seemed to be specific to me and no advise from my treating TX team, it can really be overwhelming. The hardest thing now is to trust your own judgement as TX alters it. I wish I had a simple answer for you and your husband, but have only a ear to listen with and try to reassure. Try and remmeber to take it day by day.
God Bless.
Tony
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