Life after Harvoni Teatment ?

I have Hepatitis C and I am on disability for it. I was recently approved for Harvoni (haven't received it yet). I have always been a person that thinks ahead and with this I need to figure out what I am going to do. I hear everyone say they have been cured. So here's my thinking. If I take the Harvoni and I am cured will I be able to work again? If I feel anything at AT ALL like I do now there is no way. I am in bed most of the time and always sick with something. I also just found out that I have Barrette's Esophagus which is a pre-cancer for Esophageal Cancer. My Dad died from that in 2005. I been hearing the great news of the cures and how much better people are feeling now after taking Harvoni and I am excited. But will I be able to go back to work? Am I going to feel that good and have the energy to do that? If I get cured from the Hep C I will have to report it to disability right away and then will be taken off of disability and have been using that money to live. I am 58 years old and don't know who will hire me...... Will I feel that good?? I also suffer from mental illness. Right now that is under control with meds but tomorrow could be different and I could be in the hospital for it cause it happens that quick. Now don't get me wrong I want to get cured of this horrible disease but I also want to be able to eat.... Can anyone give me some input (any) on any of this as I am having so much anxiety now the meds are not working. I just don't know what I will do..........???

Welcome to the Hep forum daisy. Glad you found us!

I am really glad to hear you will start Harvoni. This is such a great treatment with high cure rates in the high 90 percentile.

I am not sure what, if anything, will change with your SSD qualifications. I would think this is not something anyone knows until treatment is complete. Here is a link to the SSA blue book. www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05

For themister, my husband, his health has continued to decline post treatment. He did have a gastric bleed prior to treatment, and his health really took a downward turn at that point. Although he was able to rid his body of the virus, the cirrhosis was decompensated. He is considered terminal, without a transplant. Themister has been 2 years on the transplant list. Cirrhosis is not cured with treatment, though some have reported improvement with compensated cirrhosis.

This is a recent article from Hep Magazine.
www.hepmag.com/articles/2956_20528.shtml

Again, welcome and best of luck with treatment. Keep us posted. Big Hugs

Your story is similar to mine. One and a half weeks of Harvoni treatment left. Won't know results until October (they don't test for viral load until 3 months after treatment here). On disability, 58 years old, have had decompensated issues like ascites, edema, varisceal bleed, clot in portal vein and HE. Although I too am trying to be proactive about the future ... my concentration is not good at all and my energy is never stable.

It's a scary prospect going back to work after 15 years, although I'd dearly love to. My hepatologist can't give me an answer on when he thinks I might be fit for work again. He did say it might take 2 or 3 years for things to stabilize and possibly turn around. But who is going to hire a 61 year old? I'm on my own and have little to no family support so if I go off disability too soon ... well, how can you not worry?

I hear you ... have no answers, but I do understand the dilemma. I wish disability was less of a everything or nothing proposition. Mine is, anyway. There are government programs here to help people re-enter the workforce but that's not the kind of insurance I have.

For the moment I'm seeking direction, trying to be creative about what kind of work I'd be suited for now, considering work at home options and trying to take it one day at a time. I definitely hate the feeling of dependence from being on disability. It's hard no to look back at all the accomplishments I've made in career in my previous life and not MISS IT SO MUCH IT HURTS.

Prayer, education, research, and just simply socializing as much as possible (networking) is what helps me. Trying to look forward, not backward.

Best to you in your struggles. I hope you get treatment soon.

Dog LeDon Thank you for the welcome! Yeah I guess I need to take a day at a time. I just feel like I need to have a plan of some sort if they do take me off of SSI. I feel like if I call them up and report that I am "cured" from Hep C that they will immedietly stop my income and its not like I have a huge savings account. I live from month to month. Someone told me as long as I have Cirrhosis they cant take me off. Not sure about that. I wish I could get information about all of this cause I don't know how it all works (disability). And I know you said don't worry but I do and I want to be prepared. I was thinking about calling them and just not give my name. I don't know.... But thanks again!

I'll try and answer some of the questions. .. I'm happy to be close to the end of treatment. .. it's been so easy compared to earlier treatments. My hepatoligist says there isn't enough data to know how long it would take to potentially heal the liver damage but he guessed at a few years. I do have better energy although it's not consistent enough to trust on a daily basis. My anxiety level is much lower ... nearly gone. Sometimes it feels like I have brain damage from encephalopathy or perhaps the associated seizures ... there are chunks missing from my memory and try as I might I just can't retain information or remember the recent past. It's quite amazing what a person can learn to live with!! They continue to screen for HCC and ascites and monitor a blood clot in the portal vein through MRI every 3 months and though I had a bleed a number of years ago they still do regular gastroscopies.I'm thinking the doc would want more confidence that those issues become much more stable before recommending I go back to work.
When I said disability is all or nothing ... I meant with mine there's no easing into work. You're on it or you're off it without recourse to have to go back on. That's a bit unique and it's simply because the law partnership I worked in split up ... no premiums ... no going back. So I'm going to have to be as well informed and confident as I can before re-entering the work force. It's a bit scary when you're alone in the world. I don't know if any of these answers bring clarity but I will be thinking of you.

Thanks Deb! That's my problem I don't know enough about Hepatitis C. I have been reading a lot here and little by little I am understanding. My gastro dr.(hepatoligist) doesn't tell me to much and I don't ask because I don't know what to ask him.

I have had this doctor for a year now. Not to long ago he took a bunch of tests but hasn't said anything about them. The only 2 things he told me was that my viral load count was 4 million cause I asked. I knew about that one and he also told me I had the Barrettes Esophagus. I wasn't to happy to hear about that because my Dad died from that.

I am in Florida and no they don't ask for a yearly report here. They don't ask for anything. I don't know if the doctor could answer those questions but I guess I can ask. My last visit he said I could start the Harvoni whenever I want. I did get it in the mail. I have a problem with depression and anxiety and I am in the process of the psychiatrist is trying to figure out what works for me. He gave me 2 new meds. but I am always so afraid of the side effects that I have only taken one so far and that didn't work so I am going to start the next one probably tonight. I originally am suppose to take both but the first one like I said did not work.

I have been through soooo many anti-depressants through the years. I currently take Seroquel and Wellbutrin. They are working but not enough cause I still get depressed and I am sure being alone does NOT help. I think that's the big part of it.

My oldest grandson (19) is my life a I practically raised him cause my daughter is very irresponsible! But a few months ago he moved to NY to get away from her. He is with my sister whom I dont talk to. He has always stayed with me off and on but he knew if he didn't get away from her he would never achieve his goals and dreams. Opps sorry I am babbling! Bu that's when my depression started up again. I miss him so much and I feel like I will probably be dead before I will ever see him again.

Anyway when I told the gastro dr. I was having problems with depression he said that I would have to have that taken care of before I start the Harvoni because it can cause depression so that's what I am working on now. I will find out if this other one works in a few weeks and hopefully no side effects cause that will mean I have to try something else. He told me when I start it to call the office and let them know and to make a appointment for a week later after the blood work is done.

So I am going to try and make a list of what I need to ask him. I don't know anything about the F1 or the F4. Only thing I know is the F4 is the worst. I don't know any of that so I am trying to figure it all out while I have a few weeks.

I don't even know what kind of tests he did I just went and had them done. And there were a lot. Anyway thanks for all the info. Oh I have the same problems with my memory exactly like you do and I get so frustrated cause I cant remember how to spell a word or something and that happens ALOT!!

I almost wrote a book here. Sorry. But thanks for all your help its good to know someone cares enough to help.

___________

I added line breaks to make this easier to read. I didn't change any words. ML

Post Edited By Moderator (MamaLama) : 7/14/2015 12:32:43 PM (GMT-6)

Thank you so much MamaLama (love that name lol) You have educated me a lot. I still don't understand all the lingo with what the tests mean and thanks for the web site I need to make a list of what questions to ask doc . Believe it or not when I was first diagnosed I had my head in books and web sites and studied Hep C down to the T. Well I have forgotten everything I learned. Talk about brain fog sheesh!!! I kinda got away from it and just kept my appts and went on with my aches and pains and all that goes with this disease. Six months ago my tummy started blowing up. In fact I look like I am 6 months pregnant . Had to buy new pants and all. I told my gastro (hepatoligist) about it and showed him and he really didn't say anything. I am sure it is that ascites that everyone talks about. I really do like my gastro dr he seems very knowlegable. I have been going to him for about a year now. I just think that he doesn't volunteer to much information unless you ask. Well like I said I don't know what to ask. So I am going to look at that website you left me and see if I can make a list of questions for he doc. Cant believe I knew all of what to ask for years ago and now I don't know what questions I should ask. I was like a "wiz" when it came to Hep C. Oh well I will keep on trucking and wish for the best...lol Thank you so much again you have been SO helpful !!!