My Journey with Hep C

"A positive journey to achieve a negitive result."

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Happy New Year

Hi Everyone,

It has been sometime since I’ve posted here, but just wanted to put something down for the last day of this year. I’m feeling so much better being off treatment and the AD’s, coming off the AD’s was not a pleasant experience and I’m so glad that I didn’t have to take them for the full 48 -72 weeks. Not sure If I could do this all again, it has taken its toll in other ways, like having to leave my job, putting my life on hold, I’m not working but have an application in the pipeline and should find out the first week come the new year. Have a blood test coming up around the 16th to see how things are going so will see what that brings. Uni is going fine did really well last assignment and have another due on the 22nd then an exam on the 27th so am keeping busy. I guess I’m in limbo at the moment not sure where my next step will lead me, anyway just wanted to say farewell to 2011 it taught me a great deal about myself and how I will live my life.

Be at peace.

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The Journey Ends – A Positive Result – First round to the Dragon!

I actually knew my results last Tuesday from my GP Stephen, he was very kind and clearly upset when he phoned me about the fact that I still had the virus, I’m so glad to have him as my GP, at one time he treated four generations of my family, my mother, myself, my daughter and grand-daughter he was quite proud about that. Yesterday I had my appointment with Nurse Roz and my Specialist and we talked about what options were available to me.

I was told that I could expect to begin triple treatment in early 2013 which isn’t far away. Again this time frame is all due to the government approving funding etc.
Apparently there is a trial open at the moment here in Oz but only for treatment naive patients and this would be a placebo base study group as well.  So all in all it’s happening here but not as fast as one would like. lol

So my plan is to relax for the next 4 weeks. As my GP put it “undergo a therapy washout” then back into the day-to-day, but with a much clearer outlook and an appreciation of simply enjoying a single second. Have another blood test in 6 months and see how things are make sure all the nasty markers are in check and go from there.

Looking forward to Cate coming home today, she has been in Melbourne for the past week spending time with family so will do the “Fire Dance”  tonight, can’t wait to burn those boxes. May even post some pics in the forum. My dear friends in the forum have been such a blessing, I don’t know how I would have survived the last 24 weeks without their support and encouragement.

Nurse Roz pointed out that her other patients did not participate in any form of a support or peer group and they had a much harder time dealing with treatment that I, so please don’t do this alone there are many support groups out there, seek them out it will make this so much easier for you. (Forum link on the left) Of course I can’t thank my partner Cate enough for her love and total support she has had to be a tough task master at times to get me motivated as well as dealing with her own health problems, she is losing her sight we have been fighting this for many years and will keep doing so together. Love is a wonderful thing a very powerful force and we have that together that’s what really matters.

To be continued………

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Week 26 – Waiting – Clock watching – Don’t know what to do!

Last Friday I had my PCR done and now the waiting begins, my next appointment with the Specialist is on the 2nd of August another 8 days away, I’m hoping if it’s good news either my local GP Stephen or Nurse Roz will let me know before then. Feeling totally helpless at this point in time which is understandable, that’s stating the bloody obvious. Cate and I had a great weekend getting out into the garden and starting to clean things up ready for summer and doing some home maintenance, work that has been put on hold due my super powers not being available while on treatment.

Have Cate’s sister here at the moment she arrived yesterday and both are heading down to Melbourne for a week on Wednesday to spend with family as it is Cate’s sister’s 50th birthday so that will be a big celebration. I’ll be staying home and will have my daughter and granddaughter staying over to keep me company looking forward to that.

Not much else to report, heading out soon for a nice lunch in town.
“My religion is very simple. My religion is kindness. ”
Dali Lama

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Grumpy Old Men – Am I one?

After reading my posts again from the beginning, I’ve come to the realisation that I’m not the same person I was when I started this journey 24 weeks ago. I would never criticize anyone for anything let alone so openly as I have done here these past few months. Is it this experience that has made me more cynical and un-trusting of my fellow-man?.

When I turned 50 I jokingly would say to Cate, now It’s official I can be a “Grumpy Old Man” and she would just laugh at me and we’d both be in fits of laughter. This is one side effect I wasn’t expecting, or is it just the reality that there are some real dickheads out there!.
“Life is a moderately good play with a badly written third act.”
Truman Capote

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Halfway – Feeling blank – Uncertain.

Number 24 went down last night, there was a little fanfare but it wasn’t enthusiastic. It was to be a big week for several people on the forum all of whom started treatment at the same time as myself and of course we have this bond which is natural for people to do in these situations. One member of our group was to finish treatment last night, (here comes that BUT again!) but he discovered that he would have some leftover Ribavirin tablets which everyone does, anyway he did the right thing and told his specialist/doctor/person or whatever that he had these left over pills, the doctor thing replied that can’t be right you must have made a mistake and quickly advised that he would issue another box of Pegasus which just so happens to contain 4 shots of Interferon and another bottle of Ribavirin, and my friend should use another three shots to catch up with the leftover pills.

Don’t you need a basic understanding of “Mathematics” to be a doctor, the nurse couldn’t even calculate the correct change to give my friend when he paid for this service. I guess the reason I’m raving on about this is that there seems to be a certain lack of knowledge with some, not all specialists/Doctors with regards to what is the correct treatment regime and how to treat their patients with proper care and understanding when treating people with Hep C.

This is indeed a sad fact which I have discovered during this journey so far, so forgive me if I have lost some faith and respect for these professionals who we once held in great awe and treated every word they uttered as gospel. I’ll probably cop, some flak for this post but this has been my experience so far and if I can prepare just one person who is contemplating treatment with some insight then this blog has done its job.

My next PCR test will be next Friday the 22nd and I will have to wait until the 2nd of August for the word from my specialist as to whether I can proceed with treatment or stop, which also means that I have had to get an extra box as well to carry me over as my scripts ran out yesterday. So If I have to stop will I use up the leftovers which cost quite a bit of money?, no I will return them to Nurse Roz as this is common practice at my clinic, as she keeps them in the fridge for other patients who may have forgotten to pick up their scripts. That’s my rant for today.

“Never apologize for showing feeling.  When you do so, you apologize for the truth.”
Benjamin Disraeli

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Week 23 draws to an end.

It’s Sunday the 10th of July and the end of week 23, as well as the end of an era for the space shuttle “Atlantis”. I watched the final launch Saturday morning and will be watching the mission as it progresses as I always do.

A lot of things have been happening in the past three weeks, there has been some issues in the forum and it has not been a pleasant place to be sometimes and I’m doing my best to ignore it.
University is proving to be very stressful I just completed my first assignment and got a mark of 90% missed by one question, which really annoyed me it was such a simple mistake but that’s done and now on to the next one, thank god I’m only doing the one subject this semester, I need to slow down and not panic which I seem to be doing, it’s been so long since I have had to write any code for a program.

I guess I’m still very pissed off at not being informed up front about the possibility of doing 72 weeks of treatment, my next appointment is on the 2nd of August for the results of my week 24 PCR which will be on the 22nd of this month. I do intend to tell them how fucking unimpressed I am about the situation as it has thrown me for a loop, I haven’t been my upbeat, confident self, I’m not sticking to my morning treatment regime by sleeping in and not taking my Riba and AD’s on time every day.

Cate and I have discussed this and now I have decided that if I do continue treatment, I will not do the 72 weeks, I will wait and see if I’m SVR at the 6th month PCR. If I’m not SVR I will wait for the new treatment then do the extra 6 months. They won’t like it but they can shove it, I’m the one doing treatment not them.

So if your new to treatment, do yourself a big favour and ask about the 72 week option if your Genotype 1 here in Australia, I have found that the only way to be informed is to do research yourself and ask questions, I know that’s easy to say in hindsight, but I trusted them to tell me everything up front and they have lost that trust and my respect. I’m not ungrateful, just uninformed.

So begins week 24 almost halfway or finished I will find out on the 2nd of August.
”Be careful about reading health books.  You may die of a misprint”.
Mark Twain

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Week 20 and so much has been happening.

I must admit I have been rather lazy updating the blog but I have a good excuse as you will see. The middle of May saw Cate and I venture out of my imposed ” Treatment Comfort Zone” for want of a better description. Cate’s sister was flying back from Europe after a holiday and we had arranged to meet her and stay in Brisbane along with her sister’s children for a few days to catch up and go shopping etc.

I was really looking forward to it but then noticed that I was getting a bit anxious about the drive up to Brisbane and the highway traffic which was crazy as I used to drive up to 450 km’s some days when I was a field tech, and Brisbane was only 100 km’s away just over an hours drive. The day came and I was just fearful to say the least and there was no way to back out, so off we went, god that was the most terrifying drive I have ever experienced.

My knuckles were aching and white from gripping the wheel so tightly, my body held so tense it hurt but we made it. I decided to take a shower and couldn’t believe my eyes, my body from my neck down was covered in a red rash and it was starting to itch and itch and I couldn’t stop scratching all that night so of course was totally exhausted the next morning and for the next few days. Cate when out and bought some ” Body Butter” moisturizer from the Bodyshop to help with the rash, the relief was almost instant. I still have the rash today but it is kept under control thanks to the moisturizer. It just goes to show how this treatment and the side effects can manifest themselves just by stressing about doing something normal like driving a longer distance than what I’m used to while I’ve been on treatment.

Now my working life has had to be put on hold as well, I have had to stop work for the duration of treatment plus the extra time to recover as well, this has taken a toll on our finances but we are managing and have found that we are both enjoying the time home together and so are our cats, LOL.

Cate has undertaken an Associate Degree at university and is doing rather well and this has inspired me to turn my spare time around into doing something that I have always wanted to do and I have taken the big step at my age and enrolled in the “Bachelor of Information Technology” degree, I just hope the meds don’t affect me to much and I stuff it all up. I’m really looking forward to it as I’m just so bored doing nothing just counting down the weeks, so why not get something positive out of this, anyway will do my best.

So let’s see what’s left, oh yes the most important part, today I saw nurse Roz as I had routine blood work done last week and we chatted about the next PCR the big one at week 24. If I’m still detected then that’s it, I stop treatment there and then, we discussed the option of the new drug therapy and I would have to wait about 12 to 18 months before that was available here in Australia but I would be eligible for the new treatment, that’s option 1.

Option 2: If I’m undetected then continue treatment for the full 48 weeks but! (there is always a BUT) because of the slow drop in my VL count it is advisable as my genotype is 1 that I extend the course of treatment to 72 weeks which increases my success rate by up to 15% of obtaining SVR.

GREAT THANKS DOC! Why wasn’t this discussed/mentioned at the beginning of treatment as a possible outcome, last time we talked you were so happy at my progress and the drop in my VL, yeah big smiles all around. Cool I know what I’m in for….stop or go at week 24. Now you want me to go on and do a total of 72 weeks if I’m undetected. (Insert very RUDE word)

Option 3: Do the 48 weeks, bite the bullet come what may and if necessary then wait and do the new therapy which increases my chances up to 80% and judging by the results from members in my forum who have started the trial, the results for genotype 1 have been remarkable to say the least, with some people being undetected at weeks 2 and 4 and the treatment is only for 24 weeks. So option 2 is 72 weeks and option 3 is 72 weeks with a higher success rate, so the choice is clear.  Looks like I have an obstinate dragon.  DAMM THIS DRAGON!

Anyway that’s another 4 weeks away so will let it go for now and just get into the books.🙂

“Life is half spent before we know what it is.”
George Hebert