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Hello Grace, I have been diagnosed with Hep c for about 2 years now. I will soon (about 2 weeks) begin treatment with Viekira Pak. At first I was calm cool and collective. Now that it is about to happen I must admit I am a little scared. I had my appointment today to go over last minute stuff with my doctor and he is putting in the subscription today. My biggest fear is the "rash" side effect. I already suffer from eczema and I am a miserable person when that happens. I am just thinking this is going to make it flare up and get worse. Anyway I was at work and googled Viekira Pak and came across your blog. I'm so glad I did it helps when you know someone is going through what your going through. Thanks for Sharing Gail
ps: I am no stronger than anyone else. We all have battles to fight and no one knows the truth of how hard those battles might be for someone. We all do the best with the hand we are dealt. I have bad days. Some really bad days. I'd be lying if I said I didn't. But I use my friends and the support of people online to help me through. Group strength!
Hi Diane, because I am SUCH a blabber mouth, look! Here are two posts about the very things you are asking about I wrote way back at the beginning. They are lurking in the archive but still accessible. Both March posts should answer your questions. http://blogs.hepmag.com/gracecampbell/2015/03/ Have you headed over to the forums yet? I can't recommend them enough as a fantastic source of information, wisdom and management tips. A few of us are doing VIekira Pak and talk about our experiences. It's a very supportive environment. http://forums.hepmag.com
I am brand new to the site and your blogs are the first ones I read. If you feel like rehashing your life could you give me your background on your hep c journey thus far, why you had to stop treatment, length of time for this treatment etc. I appreciate your posts and strength so much and know we will be talking lots. I will be starting on viekira pak and ribavirin soon but have two other ailments to get over first. Any info will help. Thanks.
Unfortunately I have not felt at all supported by treating team and i live in a major city. Mostly I have felt like an over reactive neurotic that ought to be ignored. I sought help from GP who then struggled to get feed back from the team while she watched me struggle with this treatment. Finally just before christmas my team felt pressured into giving me some blood tests. Their resentment showed. Christmas team when everyone had gone home from the department the gastro resident phoned me with my results. My alt's were incredibly high and they were discussing hospitalising me to be able to monitor the levels. I was relieved, I wasn't just a neurotic over reactor, i really was having an acute hepatic flare in response to this medication. I didn't choose my team in ignorance, i chose them knowing that they were my best chance to get a desperately needed treatment. At no stage during this treatment process did I feel cared for, safe or listened to. My very supportive GP has also felt the incredible frustration of dealing with this team. Recently it was here that advised me to present at casualty as I needed a blood transfusion and she could get no response from my team. Thanks for your wonderful Blog. I do believe you are right, when you hit the right team it can be magic and i have experienced this with my haematology team. When you don't it can be dangerous.
Thanks for the nice comment Amanda. I thought a lot about your questions, trying to clarify what it was that I appreciated in terms of both case management and "me" management. In terms of managing people (and by managing I guess I mean liaising, interacting, helping etc) I think you have to be able to quickly learn to read your clients. Everyone wants something a little different from the people that deal with their treatment. And by that I think I mean they approach treatment with different mind sets. Everyone wants the same outcome, but they have different roads to Rome. Some people want every little bit of information you can throw at them (and will go away and Google everything you've said), some people want to be aware of the issues but don't need so much information. Some people become paralysed by fear, some people fight the dragon, some people just go on with their day to day lives. If you know how they operate, you have a much better chance of them engaging positively with you. If you don't know how they'd like their treatment approached (in terms of information, questions etc) ask them. Be approachable, even a smile and hello as you dash by makes us feel better. We are generally pretty scared when we come in. Never let someone leave with unanswered questions. Because they'll go to google and that can be a BAD thing. Treat everyone as if you actually like them. Stress that you are in this together. What I appreciate when I'm seeing Lianne is that for the time I am with her I feel like I am the most important thing on her plate. We are trusting you with our lives. Respect that. I haven't really answered your questions, sorry! But it's made me think about how I like things to be handled, so thank you again!
And to make sure I practice what I preach, I brought down 3 dozen eggs for the staff here at my treating hospital. One dozen for Lianne, 1 dozen for John and 1 dozen for whoever gets lucky. My All Blacks (Black Australorp hens) are on a laying spree atm and we are getting 6 a day. That's a LOT of eggs! I wasn't sure how they'd go through airport security but staff told me people fly with eggs all the time. Who'd have thought it!
Grace Campbell
Hi Gail, Starting treatment is the most wonderful gift you can give your liver! Having tried the old treatments, I can say with certainty that this is easier for everyone. It might come with side effects but they are nothing like the old interferon based treatment. Ribavirin has caused most of my problems. There are ways of managing most things, and itchy skin is generally manageable. Check with your doctor to see what they can offer you. Have you signed up to the forum yet? It's full of wisdom - much wiser people than me, and everyone shares their trials, tribulations and tricks to get through this. Come and join us - the forums are attached to the Hep website. We'd love to have another Viekirian!
April 22, 2015