Hepatitis C Community
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Avatar universal

It's done

I hate to write this but I feel a need to let you know what is happening. I do not want anyone to think that what is right for me is nesessarily right for anyone else.

They took me off the tx today. And I did not argue and I do not plan to look for a doctor who will continue to treat me. Certain things have been happening to me that have made this unbearable and it is time for me to give it up.

My liver damage is mild to moderate, and has not worsened in the last 5 years or so. My liver functions well, my enzymes began as normal and have remained so. I went on tx because I have symptoms of Hep C, fatigue, leg cramps, stomach problems. My stomach problems have become so severe that most of the last three months I have been in extreme pain. And the mouth sores have never healed.

Whe I called today, they said it is time to stop. And I agree. I could not take another riba knowing that each pill makes me sicker and sicker. I have 0 quailty of life on these drugs and my particular case of hep C is probably NOT going to kill me, or progress to where I need a transplant.

I am going to wait for a less toxic tx.

Thank you all so much for all your love and support, it has gotten me thru these horrible three months more than I can say.
22 Responses
Avatar universal
We are with you all the way!  We love you and we care.  Our support is with you all the time, no matter what path you walk on this journey.  I pray that a less toxic tx comes out for you.  You are not alone.  I hope you stay with us as we are family.......I for one want to hear from you, so I am hoping that you read and post regularly.  
This tx is not easy to take, (easier on some, not on others).My hope is that you stay with us and know that there will be new horizons on the HCV medical front.  I love you.
Avatar universal
Thank you for keeping us up to date. These meds are not a one-size-fits-all and some people just cannot tolerate them no matter how much they try or how bad they want to. You and your doctor have made the right choice for you and that is all that is important now. You take care of you and God will take care of the rest. I wish you all the best and will keep you and your grandson in my thoughts. Please keep up us to date on how you are doing.
9648 tn?1290091207
I think there is great wisdom in knowing when to stop.

I hope your recovery is swift, and that you see benefit from what you have done. Please keep us all posted.
Avatar universal
You made the right decision for you and I'm proud of you that you had the courage to say enough is enough.  You have to concentrate now on getting as healthy as you can and getting a handle on your grandson's situation.  Take care of yourself and check back with us and let us know how you and your family are doing.  We will miss you if you don't let us know.  Be well!
Avatar universal
I wish you a fast recovery and health.  This was not the right time for you to try tx.
maybe other meds will come along that will be easier for you to handle or maybe at another point in your life, when there is not that many personal and family issues you can try again.
Some substances can cause intolerance at some points in our life, when the exact same substance does not cause any reaction at other times. the human body is so particular.
you concentrate in getting stronger now.

Avatar universal
Listen....there is no reason to feel bad about getting off tx.  You were having a very rough go of it and your dr made a very sound judgment there!!  This happens to alot of people unfortunately...They just have sides way over the top! You can't leave us though....LOL  Some here are on tx and some not so keep coming and awwwww...Can't believe I'm saying this but please tell me how life is after tx and its all fun again!!  I guess tease me a little but don't be mean about it!! LOL  Love you and take care!!
Avatar universal
Only partly ignore my post to a different thread, below.  I'm thinking of that stomach pain of yours.  You still need to get help with that, effective treatment for that.  Your G.I. doc can treat stomachs, too!  While trying to rest and recover, try to get all the tests and screenings you need to find out what's causing the stomach / G.I. pain, please.  My heart is with you.
Avatar universal
My very special friend and warrior:

I have always valued the friendship that we have established in such a short time.
I have always had great admiration for you, your strength and determination.
I have always appreciated your advice and I thank you.
Your doctors and yourself have made a wise decision. We both know that tx is not for everybody.  I know that you will be well.
You will alway's be a winner.
Understand how much your advice has always been appreciated not only by myself, but by many other's in this forum.
I will now be very selfish and ask you not to forget to keep in touch.
As mentioned before, this forum is not only for persons in treatment, but also for persons not in tx.
I am so very blessed to have been given the opportunity to have met someone like yourself in this forum.
Thank you for being there for me in my times of turmoil with my own personal problems and issues and for the candid advice I grew to expect from you.
I will always be here for you.  
Don't forget my email and promise to stay in touch.
If Aida and I ever visit your town, we would love to meet you in person and spend some time together.
You fought hard and you dug deep.    CONGRATULATIONS!

I refuse to say good-bye.
Instead I will say:

Anyhow-you can't go anywhere.
I still need your advice with my own personal family issues.
God bless..... your friend....EDGAR
Avatar universal
Let us know when you start feeling better. A person only knows how hard this stuff is when they have stuck that needle in themselves a few times. My heart goes out to you. I'm a little envious of you cause you will soon have your life back and I sure miss mine. Try not to feel bad OK

dh bill
Avatar universal
I'm sorry you had to suffer so much on tx. I hope your sx are relieved soon and you feel better quickly. I know it's really been hell on you and now you have to do what is right for you.  I sure do hope your sticking around. We all have benefited from you being part of this group. LL
Avatar universal
All I can do is echo the other's thoughts. You had a difficult tx and a difficult decision and real world problems and you made the decision you had to. You have my love and support and hope that you can take care of things and that if and when you are ready to try again, the newer treatments work faster and better for you.

Don't disappear--you'd leave a hole in our community.
Avatar universal
So, sorry to hear that you have had such a difficult time on TX.......get some help with your stomach problems......there is always hope in the future for other treatments.......My prayers are with you and your family........Keep in touch, you have been such a asset to this board.......Deb
Avatar universal
Sorry to hear of one of "us" having such a hard time with treatment. You can always trust that you gave it as much chance as was humanly possible. I don't know if I could have stuck with it through such hard times, I am almost halfway through now and have been extremely fortunate so far. Hopefully other methods of treatment are around the corner. Best wishes to you.
Avatar universal
You may be stopping the Meds but you're still one of the family.
I'm proud of your efforts-get strong and live large.
Avatar universal
You and I have already talked and this is not the time for you. I had to stop tx before as you know and only wish the best for you. Please keep in touch with me and all these other wonderful folks and Not to sound selfish but now i need support more than ever you were my rock We felt a connection and i Don't want that to go away.I am going to need all the support i can and a few of you have been there. Audrey I love you and only wish the best for you and your family PLEASE keep in touch I don't know if i can do this without you
Avatar universal
First of all, thank you thank you thank you. omg, what a wonderful group of people you are. CHEVY, and everyone, my email is ***@****.

I will stick around. I still have Hep C; and it is not going away. I feel mixed feelings right now. This was my chance to get well, at least anytime soon, and it is not going to happen now, and that hurts. I was symptomatic before tx, so I do not expect to feel fine. The decision to do tx was a hard one for me, and like everyone who attempts it; I had big hopes.

However, it was totally kicking my butt. I hope whatever it did to me, it will go away. No doubt, my GI problems still need to be dealt with. I will just give it a little time to heal; then start the rounds of docs again. I am keeping my hepatologist for the Hep C; but will get a closer doc for all the other GI stuff. My liver doc is in downtown Chicago, a real pain to drive to, not to mention parking.

Right before I started tx, I hesitated, because my 11 year old grandson is very troubled and I think he is at a crossroads. He needs the best of me badly right now. And not only did the tx have a rough effect on my stomach, it was hell on my emotions.

I would love to be able to still give support and receive it here. Hep C is not a picnic, and I sure as hell have earned a right to be a member of a support forum, so thanks to all of you, I will keep coming back.

I hope to get to meet some of you. Edgar, Chevy, anyone gets to Chicago, I would be so happy to hang out!!!
Avatar universal
It's done for me also.  41 weeks and 10 blood transfusions = 0 quality of life.  I am not sure if I even want to do the PCR since I am genotype 1 - high viral load.  I feel like I have wasted 41 weeks of my life.
Are you checking into clinical trials, Audrey?  
Good luck to you.  I also will continue to read this forum and celebrate the sucess of those who make it to the end with SVR.
Avatar universal
God Bless you.  That sounds like a rough road.  How are you doing now?  Be well.
Avatar universal
Hi I don't know how I over-looked this post, but I did. I am so sorry you had to call it quits, but I do understand. I did 48 wks and replased. I went through "hell" on earth while on tx and I was sure because I had such a rough time, that the meds were working. I know how you feel about losing wks of your life. I pray that the time you spent on tx was not in vain, but gave your liver a boost. I go to Duke Hospital April 28th to see if I qualify for a clinical trial. (fingers crossed) As I have said before even if the trial doesn't help me, I pray it will help others. Stay with us please, we are a part of your family now. I will continue to pray for you and Audrey. I love you both bunches! Much love and many prayers, Cindee
Avatar universal
I understand your choice and know you will feel better shortly! As one poster said above the tx is not one size fits all. The meds are toxic! I was a non responder but my bllod was so poor they yould have yanked me anyway!

On the good side you will feel better shortly, I had mouth sores and they were fine several days after going off tx. My brain cleared shortly after and I was feeling prety back to normal after one month

They are looking at some new treatments too! There is much research going on. Luckly for us, we are not at esld and have time. And speaking of time, enjoy the time off! Take care of yourself and live a liver healthy life!

I am taking some milk thissel, drinking lots of water and getting exersize.

Come back and visit!

Avatar universal
I would not consider anymore meds at the present time. I'm still a little freaked out to be in so much constant pain. Hopefully, in time the intensity of how bad it has been will fade from my mind and memory.

We have to fight feeling like we wasted a lot of time. Maybe we have learned some life lessons, maybe we now can support other people with major health issues in a way we could not before understand.

I know that I have an understanding of chemotherapy that I never had, and I can in the future understand how people on it suffer. My dear friend had colon cancer a couple of years ago, and she was a great source of strength to me these last 3 months. Perhaps we can pass it on. Then it would not all seem like a horror story anyway.

Helen, I am thinking of you and still here for you. No it was not my time, but I pray it is yours.  IM me soon, ok?
Avatar universal
Audrey,  I am so sorry that you have had such a hard time doing this TX. It
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