We can only help spread the word, not make decisions for people even if they base those decisions on inaccurate information.
I have a good friend who also has Hep C but more serious than myself as he is F4 and previously failed Inf/Riba. I had a long chat when I first found FixHepC and started treatment, told him how straightforward the process is and thought he might like a headstart. Nope, he’s going to wait for PBS availability. Which was announced in the week after I started but I have no regrets about starting 3 months earlier or about spending the dough.

I am reminded of a little fable:
There’s a story about a little boy that was on the beach throwing back starfish that had washed ashore. A man came along and saw the little boy throwing back the starfish and told the boy, “Little boy, you’re wasting your time. There are thousands of starfish washed ashore, you can’t possibly throw them all back. This is nature’s way. You’re wasting your time, you can’t make a difference.” The little boy looked at the starfish he was holding, then threw it back into the ocean and said, “Made a difference to that one.”

Yep such a beautiful story Sonix

DT, re Ariel, said
“That is one strange story about your doc. I think it is way up there in the wierdness category. Not only could I not have made it up, but you actually had to live through it! Thank heavens you seem like the stable sort, enough to know that any mental problems around are not yours. Definitely stressful to the max though.”

Well, I’ve had some weird experiences re Specialists and other people. Problem is because I am ‘vulnerable’ being dumped on and told it’s ‘me’ at fault I end up taking that on. Crawling back into my cave, hating people and licking my wounds. Then when I speak to others who have had the same experience with certain individuals, I feel validated but then pissed off that I took their crap

I totally get why you felt like that DT trying to offer help to someone with the same condition and have it thrown in your face and get stomped on in the process
Yep, as LG and yourself pointed out – vulnerability and imagination seem to be sx on this Tx – but are we having moments of clarity now and seeing things as they really are? Rather than being told by others ‘we’re imagining things and being too emotional’ – and wondering if they are right.
I’m also choosing to avoid certain people for now.

to you all.

Too Bloody True! I don’t think any of us will be the same again …eyes wide open, with our heads and hearts on alert!

Ariel, my heart breaks for what you went through. I’m reminded of my experiences when I was pregnant with my beautiful boy and how very close I came to losing him several times because of decisions made by Dr’s and nurses. Can’t talk about it now it’s too distressing.

Another reminder, talking to my neighbour yesterday, I’ve watched her health deteriorate rapidly in the past 6 months. She was suffering certain symptoms and was referred to a Specialist who did a biopsy on an artery near her eye and prescribed prednisone. So, for months I watched her swell up, especially in the face like the Michelin Man (Hahaha showing my age!). I had looked up the diagnosis at the time (forget it now) and saw that the only Tx available was prednisone, high dose for 2 weeks and tapered down to max of 20 mg/pd. She’s gone from being very active, even though she’s in her late 60’s, she could do more than me! A friendly and sociable person to being weak, fatigued, moody and cranky.

I kept asking when was she going to see the Dr because she was supposed to be tapering down her dose, I told her the swelling of her face was a side effect. She could barely swallow, couldn’t drive far anymore, her eyes were in pain and blurry. She argued the Dr knew what he was doing and the ‘swelling’ had nothing to do with the drugs!

Anyway, she got an appointment with another Specialist the other day, and he told her he didn’t think she had this ‘tumour thing’ at all, he didn’t understand why there’d been no follow-up and that she should never have been on 50mg of cortisone per day!! And that the swelling and other symptoms were from the drugs!
She’s shattered and feels like her health and wellbeing have been stolen from her and she wishes she could sue the other DR.

There is no end to the stories, we’ve either all experienced personally or know someone who has had their lives ruined by the medical professionals we put our faith in and our lives in their hands. That being said, we also have the stories of those wonderful medicos who have saved our lives! For me the visiting Specialist who saved my precious boy! And Dr’s like our Dr James who make it possible for us to have a future

Sending you all Big Ehugs and Love

You will be at some risk of an Addisonian Crisis after that long on pred.

http://emedicine.medscape.com/article/765753-overview

Have a look at the “presentation” tab and don’t ignore the symptoms.

Emergency home treatment would be to take a bit of left over prednisolone.

Hope I’m not going too off topic, but Ariel, your post about the horrible care you were given when you found out you had hep c struck a chord. I was put on two clinical trial of the poison duo inf and riba, Failed the first one, didn’t respond, then my doc told me about the second trial. You inject daily. So, I felt like I had to tough it out and do it – willpower and all that…. OMG, it was brutal, it was cruel, it put me in the hospital and I nearly died. After I got out of the hospital the doc in charge of the trial asked me when I was going to start up again!!! I was shocked he even asked me. It took me quite a while to come back to some normalcy, and I still don’t know what kind of damage it did to my body. I’d like to see some research done on that.

Later on I saw another hepatologist, this time a good, thorough one. He did genetic testing which showed I could never have responded to the interferon. All that for nothing, and worse, now I am not ‘tx naive’ and have to treat longer. I wish I wouldn’t have treated before, but hindsight is 20/20.

So, done with my b*tching…. glad to still be around, and so lucky to be treating now!

Last week I remember seeing an older post in which someone had in an extremely thoughtless way, expressed doubt about the devastating effects interferon therapy can wreak physically, spiritually, and psychologically. This thoughtless post had been directed at Ariel.

I remember thinking to myself in response to the idiot post, “This lady (Ariel) has been through absolute hell at the hands of her doctors, and her family. In what parallel universe do you get to pass judgement on her pain, and life experiences?”

Interferon therapy can be a special kind of isolating hell for those who have endured it. To endure it without support, or worse under the ignorant and withering judgement of people who have no idea what it is like or how it feels, can be particularly isolating and traumatic.

When I had to stop Interferon because I was turning a really bad corner, my Gastroenterologist’s opinion was clear. In his mind, the problem was me, not the medication. If only I had stayed on another six months. If only I had another easier to treat genotype, blah, blah, blah. I never went back. Never looked back. There were no answers there, only sickness, failure, and judgement.

I’m with you, Beaches. Interferon again? I’d rather die. So glad I found Dr James, FixHepC, and the REDEMPTION trials.