What will be ??

I am so nervous about starting Harvoni because of a lot of people saying how drained they are and the severe fatique is terrible. I have read that some cannot even get out of bed. I haven't started the Harvoni yet but will be soon starting. I mean about 6 months ago I have taken a turn for the worst. Nothing major to where I need to be hospitalized cause I know this is part of Hepatitis C. So I have ascites now look like I am 6 months pregnant and then I have the fatique and tiredness.(kind of severe at times). Starting 6 months ago I am now required to sleep 12 hours a night and I do not take any kind of sleep medication. Sometimes out of the clear blue I wake up and feel like I have worked a 12 hour shift. SO what am I going to feel like when I start the Harvoni?? Will I never get out of bed? I have a problem already with nausea which causes me to not eat. I am lucky if I eat once a day. I know this is not good but I have no appetite and when I try to force myself to eat I get sick. I am alone so its not like someone is here to help me with anything. I already have the Harvoni here but like I have said in other posts I have to get the clear from my psychiatrist cause of depression. Then I also think cause I hear people got the blues because of treatment. I cant afford to get depressed. I am sick of being hospitalized cause of it. I don't know I guess there is no answer for this cause Harvoni is going to do what it will do and its not in my control. But still scared anyway...Thanks for listening!!!

DaisyTrixie,

LOL, you sound just like I did before starting the Harvoni. I feel your angst. I am the Queen of the Worryation Club and I was petrified of starting for just about the same reasons you are.

Here was my experience with the Harvoni:

I had one dull headache that didn't warrant medicine
I took my pill every day at 3:30 p.m.
I would want to go to sleep around 4 p.m. and take a 2-3 hour nap
I did experience constipation throughout treatment. I used Miralax. stool softners, and fiber
I had several vivid dreams in technicolor

After the first week, I started noticing after my nap, I would have energy to do things
I did not experience any depression. I did get agitated at times, but for valid reasons

That's it. I was so surprised that it was so easy. The three months flew by. If you have a problem with sleeping a lot, take your dose at the same time but before you go to sleep in your 24 hour period. If you don't go to sleep until 5 am, then take it at 4:30 a.m. Just be consistent.

A journal helps to log the time you take Harvoni every day, to keep track of the fact you did or didn't take it that day, any side effects, and notes to self.
I chose a date the following week and did it. The outcome is worth the effort. I wish you the best and please let us know how you do. It helps everyone!
Hugs,
Mitzi

Thank you MamaLama......I have seen many of your posts to us people that are suffering from Hep C. You are always on point and VERY knowledgeable of all the hepatitis C things going on with everyone because of your husband.My point is that it is not you that is going through this and PLEASE DO NOT take this in a sarcastic tone. Like I said I know you have been VERY VERY helpful in this disease. But as far as saying about the cancer treatment would I take the treatment the answer to that would be NO. I have taken care of many people with cancer and I really do not think I would take treatment for that, not because I would lose my hair, but it would depend on how advanced I was with the cancer. I have seen way to many cancer people that would kling on to life even though the oncologist told them they had a not so good chance of even surviving and even as far as saying they MIGHT live a few more months. So my thinking is doI want to liv the rest of my few months and hopefully a quality of life OR do I want o put up with ALL the side effects of chemo and be miserable. I learned that from my Dad when he came down with Esophageal Cancer and if it gets to that point of diagnosing that kind of cancer you really have a very limited time to live with or without chemo. My Dad took one treatment of chemo and they explained to him that it might work but the chances were very slim, but they said "huh huh" it was worth the try I call that "experencing with someones life for the purpose of studies". He took one treatment of chemo and said that was enough for him and he should just die the way he should without all that misery. Of course I respected his wishes and whatever he wanted to do with the rest of his life was definetly his choice. I stayed with him till the end and even before he died they said either way he would only live the max of three months and to the day he died in 3 months. So anyway back to the Hep C treatment I am going through hell deciding when to start the Harvoni because I keep reading about side effects along with side effects that don't leave them even AFTER treatment. To me it is crazy to add more to my disabilities then I already have. I am sure I am going to coax myself to do the Harvoni treatment but it is taking me a little bit longer then most and then I pray that I have made the right decision. It is just iffy to me. I also wish it was a matter of "a couple of headaches" but it seems to me to be more then that reading about the people actually going though the treatment. I agree "treat right away" at this point I don't think that a few months will matter till I get the courage and strength to do this. IT IS REALLY HARD!! I truly understand what your husband has gone through and you also but HE was the one going through it. Thanks again and please don't take me as being rude or a smart ass. That's just not me!! I m a caring person and I am sure you went through hell watching your husband suffer through all of this and I give you a lot of credit for standing by his side its takes real person to do that. So many of us are all alone (as my husband commited suicide" and I am one of those! Thanks for all your input you are truly helpful and I always read your posts and I think you give all of us some strength and HOPE to carry on with this awful disease no matter what we decide. You are truly one of a kind !!!!

Daisy, I somewhat get what your saying in regards to speaking from the experience first hand. Being the one facing the barrel of the disease is a experience one likely doesn't ever forget nor will ever take lightly. On the other hand we as patients or the afflicted can rarely articulate the technicalities of the disease. It's was for me and still is today more a emotional thing. The technicalities are vital. I only know them from having them hammered at me daily as I struggled to live.

Caregivers are the only moderators here now. The position has been offered to a few survivors as best I know but all have turned the offer down since the passing of Hep93 (Connie). You'll find that if you read for awhile back in the older post (from years back) before Harvoni and other drugs, This forum was full of woes about side effects. It certainly has changed since then and all for the better drug effect wise. As far as the mods or anyone else here, Opinions and orifices, the world is full of them.

Ones attitude in relation to how long and how pleasantly you'll survive is key. No, The world ain't lollipops and roses on a crapty day but life is indeed what you make it. I wished I was dead more than once dealing with this disease but kept going in spite. Egged on by the naysayers (doctors) "Three months at best Survivability". I happened upon this site. Found comfort in the struggle of others. Some patients, Some caregivers. I wish I could open my darkest hours up to every person in a more vivid way, I suspect the caregivers do also. Maybe it could sway more people into getting a better aptitude about living and what we truly can achieve with a slight belief in a tomorrow.

Ziff