Hepatitis C

Almost-1-Year Update

2008-06-06T10:15:00.002+12:00

Hi everyone,
I thought I'd better pop in and give an update on my condition, since it's been almost a year since I was "cured".
I have wonderful news - I'm pregnant! Our baby boy is due in August.
I am of course really pleased with the way everything has turned out. Latest tests have shown no sign of the Hep-C virus and I feel wonderful and healthy.
Best of luck to all of you who are currently living with Hep-C or going through the treatment process.
Remember, there IS light at the end of the tunnel!

Six Month Update

2007-07-24T16:51:00.000+12:00

Wow - has it been six months already? I've lost track. Probably because I hardly even think about Hepatitis C any more! Now that I don't have the virus any more, I just feel like a normal person! I hardly have any relation to all those months of stress and tiredness and injections and yukkyness. I just feel awesome. Absolutely awesome.
My message to anyone who's going through the treament now, or who has been recently diagnosed, is don't worry about a thing! Everything's going to be OK in the end!
Yes, there really is an end. I'm so happy.

I'm Cured

2007-01-08T12:10:00.000+13:00

It's been a long, exhausting ordeal and I'd like to thank everyone who has supported me and wished me well.
I went for my 6-month post-treatment check, and there's no sign of the virus.
I'm completely releived and my husband is completely releived. We celebrated quietly with coffe and cake at a little cafe close to the hospital and then went home to start our new life.
Rather than feel excited and jump up and down, I just feel like sitting quietly and being grateful for what I have.

Pregnancy After Treatment

2006-09-02T08:40:00.000+12:00

When I began treatment, my doctor made it very clear that I should not become pregnant during treatment, and for at least six months following completion of treatment. Apparently the treatment is known to cause defects in unborn children.
He was so adamant about it that at every check-up I was asked what kind of contraception I was using. I was instructed to use two different types of contraception at once.
The ironic thing was that most of the time my husband and I were using the most reliable form of contraception - abstinence! I was very rarely "in the mood" throughout my treatment.
My doctor knew that my husband and I were trying to conceive before my diagnosis. I think that scared him. He made it quite clear that we should immediately stop trying! I suggested to him that I could have the baby first and then go on the treatment, but he reckoned it would be difficult to raise a small baby on treatment. How right he was.

Back Into Life.

2006-08-18T17:22:00.000+12:00

It's been a little over three months since I finished my treatment. I went for my first post-treatment blood test the other day - the one where you find out if the virus has made a comeback. I'm not worried about it at all. They say that there's only a very small chance of the virus returning after a successful treatment.
Now my focus is on getting back into life. I've been a bit of a hermit since my treatment began, which has been nice. I needed the peace and quiet, not only during treatment but afterwards as well.
I still feel the effects. It was a bit over the top to expect that after a three month recovery period I'd be fine. I'm certainly feeling a lot better, but even the experts say it takes six months to get the toxins out of your body (I've had strict instructions to wait at least six months before attempting to get pregnant).
I'm looking forward to seeing how I feel after six months. What I'm really looking forward to is how I feel after about a year.
At the moment I'm still losing a bit of hair and I have bouts of feeling really tired. I've been getting a few urinary and throat infections and my moods are still a bit wonky.
But I've been taking regular exercise, eating well, getting plenty of sleep and drinking enough water. And recently I've been trying to get out more into society. Hubby and I have started taking dancing lessons at our local hall. That's a bit of quiet fun! And we're going to try to get out visiting more, too.
I like the fact that spring is just around the corner. It seems that the seasons are working in conjunction with my recovery. Nothing like a bit of sunshine to lighten the mood.
Everything is going to be just fine.

My Post-Treatment Experience

2006-06-15T12:02:00.000+12:00

I feel great and it’s only been about one-and-a-half months since I finished treatment! I know it’s supposed to take three to six months for the medication to get out of my body and I can tell it’s still in there because my hair’s still falling out, but overall I feel really good.

I’ve started jogging again. For the last few months I couldn’t muster up the energy or enthusiasm to do any exercise at all. I spent a lot of time sleeping and a lot of time in front of the TV. It was what I needed at the time, but I became really unfit and put on too much weight.

I actually lost some weight during treatment, because I lost my appetite. But my appetite came back before my energy did, so for the last part of treatment, and afterwards, I was eating all the wrong stuff and not doing any exercise.

About three weeks after finishing treatment, I felt noticeably more energetic, optimistic and enthusiastic and I started going for short, slow jogs. I was careful not to overdo it. I’ve heard stories of people throwing themselves into it too soon after treatment and knocking their recovery back.

Each one of those slow jogs around the block helped. The weight I put on is coming off and I’m feeling stronger all the time. The jogging’s speeding up and soon I’m going to have to increase the distance.

And you know what else? I’ve made myself a goal: Next summer (it’s winter here now) I’m going to enter a triathlon! Not a “real” triathlon, but an easy one – swim 500m, cycle 10km and run 3km. It’s something nice and easy that I can achieve, which gives me something to aim and train for.

I’m really pleased with how quickly I started feeling better, and I expect to only continue.

Onwards and upwards!

Finished Treatment & Feeling so Happy/Sad/Happy/Sad...

2006-05-05T16:43:00.000+12:00

Three days ago I took my last little pill, and felt absolutely euphoric. Such a relief to not have to take those pills any more, and especially not have to have those injections any more!! Yay - I did it!
Three days later I'm still happy about it, of course, but now there's this disturbing feeling of doubt that's starting to creep in. Like... what if the virus comes back? And... why isn't the fatigue going away? And especially... what does my future hold? I bet these are all common issues upon finishing, because you fool yourself into thinking the end of treatment means life's going to change instantly, just like magic.
It has changed in one way - I don't have to remember to take those pills twice a day, and I don't have to dread injection day any more. But the fatigue hasn't suddenly stopped. Neither has the moodiness.
Actually, I thought it had. I thought I was suddenly a happier person about two seconds after taking my last pill. But no, that was just a momentary mind-celebration.
What I'm going to do to counteract the feelings of self-doubt is make myself a plan for the future. Something new and challenging that I haven't done before, to celebrate the new me. Of course, I'll need to balance that with not pushing myself too hard while I'm still weak. My body and mind have been through a lot, and there's going to be a certain recovery period needed.
But having something to look forward to should help keep the doubts at bay. Perhaps first of all I'll just make a plan on paper from the comfort of my couch. Then, as I feel stronger, I can begin to act on my plan.
There's no doubt that having hope for the future is great therapy.

Last Injection (wow!)

2006-04-26T09:58:00.000+12:00

Last night I gave myself my very last injection... ever! I joked to my husband that this is the last injection I'll need until I'm diagnosed with the next disease. It was a bad joke, but a good insight into the fear that I've harboured since finding out I had Hepatitis C.
Now I just have a week's worth of pills to get through, then I'm free from the burden of taking my medication. I'm looking forward to seeing what happens to me after I finish the medication. I wonder how long it will take for my body to get over the effects. I'm sure there is a period of withdrawal, and I'm sure that's not pleasant. I'm curious, though, to see how long the withdrawal period lasts. I've heard stories of people still feeling fatigue and brain-fog up to nine months after they stop the treatment. I certainly hope it doesn't take me that long! I suspect that it will be easier for me, since I haven't had really bad side-effects throughout the treatment.
In fact, the worst side effects showed up right at the end of treatment. I felt my most fatigued and in a worse mood right at the end. In fact, I could totally fall asleep right now!
My dilemma now is how to handle coming off treatment. I don't want to beat myself up if I'm not feeling instantly well and getting on with my life. But I also don't want to sit around feeling sorry for myself and not get on with life. Once again, it's going to be that tricky balance between recognising what's really going on and what's all in my mind!!

13th Injection - Over Half Way

2006-03-03T16:33:00.000+13:00

I haven't blogged for a while - I've been tired. Also I've had a bit of a life change since my last post: Three weeks ago I left the job that I've had for the last four years. It was a very demanding job; a live-in position that required me to be available and alert 24-hours-a-day, 7-days-a-week.
I didn't quit my job because of my illness or the treatment that I’m on. Actually my contract just happened to come to an end and I decided not to renew it.
The change that's come over me since then is fascinating. When I was still at my job, and had to hold it all together, the side-effects of my treatment were practically non-existent. But over the past three weeks, since I’ve been free, there’s been a dramatic change. I’ve been starting to feel very tired, and I need to sleep a lot. I’ve been feeling very lethargic, and often just curl up in front of the TV.
It seems that I’m succumbing to the treatment now that I’m in a position to do so! Isn’t the mind a funny thing?
Now that I’m over the halfway mark with my treatment, it’s time to go back to the doctor and find out whether it’s working or not. If it’s not killing the virus, they’ll take me off the treatment. If it is having an effect then I’ll be very happy.
I had the blood tests a couple of weeks ago. When the doctor gets the results he’s going to call me in for a chat. I expect that to happen soon.
Anxiously I wait.

7th, 8th & 9th Injections

2006-01-14T09:23:00.000+13:00

The side-effects are certainly creeping up on me. The most noticeable thing is the tiredeness. I feel quite exhausted throughout the day. Strangely, I often find that when I finally do get to bed at night I have trouble falling asleep - which doesn't help with the tiredness the next day! A strong cup of coffee makes me feel much better, but you can only have so many strong coffees each day. In fact, lately I've had to limit myself to one a day. The second one usually makes me nauseous.
My job ends at the beginning of February. I'm glad now that I chose not to renew my contract. I'm going to need the break. Lately my work has become challenging for all the wrong reasons!
My platelets and white-cell counts are low. My nurse says they're not so low that I'll need to reduce my medicine just yet. That's good. I don't want to reduce my medicine. To me, reduced medicine means reduced chance of success.
They've asked me to come back for an eye test. I think that's just a standard thing that they do with everyone at this point. I'm glad of it, though, because I have actually been having some eye problems. I over-exerted myself one day, and I had blurry vision for the next two days. I've also had some pain behind my eyes.
I'm more irritable than I used to be. That is, I never used to be irritable at all, and now I am occasionally. This side-effect is also temporarily relieved by a strong cup of coffee.
I've found that Calendula cream is great for my itchy rashes. It's cooling and soothing.
So, all in all so far, I'm handling it. I only have a few weeks of work left and then I can rest, so I'm holding out for that. My aim now is to make a really good job of my last few weeks. It's tough to do a good job when you're tired and irritable, but I'm going to try anyway.

6th Injection

2005-12-24T10:36:00.000+13:00

People have said that around the sixth week is when it usually start to kick in. Yup, things are certainly starting to happen.
I've been trying to deny it, of course. Convincing myself that it's all in my head. That works, to a certain degree. But if I'm completely honest, I'll admit that I've been feeling a bit "under the weather". That's the best way to describe it. It's not something I can put my finger on. I've just been feeling kind of sad, low, lethargic...
The other day I got the results of my latest blood test. I have low readings of my platelet count and white cell count. Also low are my Neutrophils and Lymphocytes. Now, I really don't know what all that means exactly. I know that your white blood cells help fight off infection, so if they're low I'd better be really careful not to catch any infections. And I imagine that having low counts of that kind of stuff will probably be making me feel not-so-hot.
So, really, what's happened this week is that I've received medical proof that there's a reason why I should not be feeling good, and it's given me permission to admit that, in reality, I'm not feeling good!
Sometimes I wish my emotional brain would stop getting in the way of logical brain!!

Fourth Injection

2005-12-09T16:45:00.000+13:00

It's got to the stage now that I don't sit around waiting for the effects to come on after my injection. And they don't. Ever since that very first one, which scared the living daylights out of me, every other injection has been uneventful.
I still have the itchy rash popping up in patches on my legs and arms, but it's not very bad and I rub a little calendula lotion on it, which does wonders (I've also discovered that the rash comes on when I stress out, and eases when I calm down).
The only thing that's noticeable is that I'm gradually getting more and more tired as the weeks go on. I wasn't sure whether that was actually happening at first, because I've been tired for years (which I see now was caused by the virus). But there's definitely extra tiredness happening in my daily life now.
It makes sense that whatever problems you've been having due to the virus will be exaserbated by the treatment. After all, interferon is just an overdose of what you're body is already using in its fight against the virus.

Third Injection

2005-12-02T11:39:00.000+13:00

On Tuesday evening I gave myself my third injection. It's Thursday now. I waited a few days to see if any bad side-effects came on. Today I'm feeling a bit tired and slightly achey, but nothing like what I would expect.
Yesterday I had an episode of crying over nothing at all, which was easily fixed by a strong cup of coffee. I felt quite silly, really. Here I was sitting in bed bawling and my husband asked me what was wrong. Do you think I could come up with an answer? By the time I'd ummed and aahhed trying to think of what the matter was, it was time for a coffee and I was fine after that. How embarrasing!
So, it looks like I'm going to handle this treatment pretty well. I wonder what it is that causes some people to react so badly and others to feel so well.

2nd Injection

2005-11-23T15:27:00.000+13:00

I must be the luckiest girl in the world!
Last night I gave myself my second injection. That was around 6:00pm. Then I waited for the aches, shakes, chills and fevers to set in. And waited… and waited… and waited.
At about 10:30, I went to bed, feeling perfectly normal. I put some paracetamol beside the bed, sure that the pain would set in some time during the night. But I slept like a baby and woke up this morning feeling fine, and I’ve felt completely great all day!
I was actually a bit worried about it, wondering if something had gone wrong. But I asked my buddies on the forum (www.ronmetcalfe.com/hepcforum) and it seems that I’m just having a good week!
Apparently there are good weeks and bad weeks. Obviously, this is a good week. The sun’s shining, it’s beautiful late-spring weather, and I’m going to make the most of feeling this good.

By the way, that forum that I mentioned, I highly recommend that anyone who needs advice about Hepatitis C or treatment, go to this forum. The people there are super helpful and knowledgeable.

Day 4 - Woohoo!

2005-11-19T19:41:00.001+13:00

Last night I had such a good sleep. No aches, no need for painkillers. Just a wonderful sleep all the way up until 8:00 this morning. Aah, lovely.
And I've felt fantastic all day! I even went jogging. Here I was thinking jogging was going to be replaced with shuffling from now on. Yeah, I felt great today. Even my eyes are feeling better. Even my neck-stiffness has almost gone!
I have noticed strange bumps popping up on my neck, chest and legs. Some of them are itchy. But, you know, that's not too much to handle. We'll see where we go with those spots.

Day 3 - And I Feel Fine!

2005-11-18T17:05:00.000+13:00

I had my first injection on Tuesday afternoon and now it's Friday afternoon. So it's been three days. Today has been most pleasing indeed. I woke up at 4:30am, because the pain had started. So I took a 500mg paracetamol tablet, went back to sleep, didn't wake up again until 7:00 and I've been perfectly fine all day! The only problem I have is a nagging ache in my neck, which has been there ever since the injection, oh and my eye-sockets ache today for some reason. Apart from that, today just feels like any other day!
I've heard that with Peglated Interferon you usually get two nasty peaks - one 4-6 hours after the injection (yup, I got that alright) and another at around 80 hours. If that's the case, then I could expect a nasty surprise tonight or tomorrow morning.
The paracetamols work wonders, but I worry about taking too many. At first I was over-cautious, and let the pain built up to unbearable before taking them. I'm not sure that that's the best idea, either. But I don't want to be taking them unless it's absolutely necessary.
I guess as time goes on I'll get the hang of when the best times to take them are.

First Injection

2005-11-16T15:36:00.000+13:00

It’s begun. I had my first injection yesterday at 2:15pm. It was freaky. Luckily I’d read about other people’s experiences of the first time they had to inject themselves, and I’d read the instructions that came with the package, so I’d pretty much psyched myself into it by then. It’s just that poking that needle in it feels like the most unnatural thing to do to yourself.
I’m really glad my husband came along. Not only was it reassuring, but it helps to have a second pair of eyes and ears.
My nurse set up the needle and the syringe, instructed me what to do and then handed it to me. I got my flap of skin ready, aimed, and… hesitated. Immediately the nurse started barking at me, "just do it! Hurry up! Right now! Don’t stop!" I’m so glad she did that. It prevented me thinking logically, and I just did as I was told. It wasn’t so bad. I definitely felt the needle, but it was small and thin, not too painful at all. I was just as worried about squeezing the plunger. I thought I’d be able to feel the liquid squirting in, like when the dentist injects anaesthetic into your gums. That’s a nasty feeling. But I didn’t feel that part at all. Then I pulled the needle out. When the medicine started squirting back out of the hole in my skin, I realised that I was squeezing way too hard – probably because I was freaking out! Next time I’m going to let go of the skin before I remove the needle.
So that was it. Easy peasy. Now I just had to wait for the side effects to show up. The nurse said that maybe I wouldn’t have any at all. I shouldn’t have pinned my hopes on that. It was a three-hour car journey from the hospital back to my house. Hubby drove. I felt fine. Just before we arrived home I was starting to feel a bit achy –I thought it might be just from sitting in the car. But then other stuff started happening. When we arrived home, my mother greeted us (I’d left my mother watching over my house. I have a home-based business and customers can turn up at any time, so someone needed to be there). The first thing my mother said when I got out of the car was that I was shivering. It was a beautiful sunny evening and nobody else seemed cold.
The second thing she said was that she’d taken all the eggs out of the hen’s nest and put them in the fridge. That was very bad news. The chicks had just started hatching that morning, and I had asked my mother not to go near the nest.
Now, that news in itself doesn’t really relate to the subject of my blog, but the way I reacted does: Usually when my mother does that kind of thing, I get very tense and feel anger welling up inside me, and I feel like my head’s going to explode. This time all I felt was a serene calmness. I felt like I was floating, detached from the situation. I heard my voice, in a calm tone, tell my mother that I had asked her to leave the nest alone. I don’t even recall what she said back. It just didn’t matter. Hubby and I went inside and took the poor, refrigerated eggs and put them back in the nest. Who knows if they’ll survive.
By 6:30pm I was starting to feel really bad. Every joint ached, even my elbows. Even my toes. I was starting to develop a fierce headache. I knew I needed to eat something before I took my pills, but I struggled to gag down a banana sandwich. At about 7pm I took my first two Ribavirin tablets. I’ll be taking two of those every night and two every morning. I’ll be having my injection of Interferon once a week. That’s a piece of good news. I thought I would be having it three times a week. But it’s the Pegylated Interferon, so I only need to do it once a week. Yay.
I wanted to hold out as long as I could before taking any painkillers. Bad decision. By about 8:00 all I could do was lie on the couch and moan. I hurt so bad I could hardly move. I felt dizzy and exhausted, but I knew I wouldn’t sleep if I went to bed in that state. At that point I took some paracetamol and went upstairs and cried my eyes out. I know crying’s one of the side-effects, but I don’t think it’s meant to start happening so soon in the game! I think I was just sick and scared and I felt kind of guilty that I hadn’t managed it better (by taking painkillers before the pain got too bad).
Anyway, after about 20 minutes I felt the first 500mg of paracetamol kicking in. The pain was greatly relieved. I took another 500mg at 9pm, just to knock the rest of the pain off, and went to bed. It was a fitful night. Every sound jolted me awake. But I did sleep. I woke up about 7:30 this morning with a thumping headache, popped another paracetamol and things were looking rosy. The rest of the day has been great a great relief. I've been feeling pretty well! I still have some aching, a slight headache and a new thing - blocked ears. But basically, I feel pretty OK!
So far so good...

Week -1 (that's negative one)

2005-11-07T17:41:00.000+13:00

So I've got one more week to go before my first injection. I'm feeling positive about it. Especially now that I've got a few clues about what to expect, thanks to some useful info from people who have been thorugh it. Sounds like it doesn't hurt too much, it's not impossible to do-it-yourself, and you don't drop dead immediately afterwards.
Today I had to go back to the lab for another blood test. I only went in a few days ago for what was supposed to be the last one before treatment begins, but the nurse phoned to say she'd forgotten to get me tested for pregnancy and "viral load". Hmm... a couple of fairly important things, you'd think. Oh well, at least she remembered in time.
Another issue that's been running through my mind lately is how, or if, I'm going to tell people about what's going on with me. Not everybody has to know, but I'm thinking if any friends turn up to visit it could be tricky (I live in the middle of nowhere so when friends turn up they stay for a week).

Found a Useful Message Board

2005-11-06T12:06:00.000+13:00

Yesterday I was reading some posts on this really useful Hepatitis C message board that I found by following a link on Ron Metcalfe's blog.
The posts I found really interesting were from people who have finished the treatment and are now virus free and it got me really excited about my own prospects. I look forward to the day that I'm free of the virus! Free free free!!
I've made a list of all the health problems that I have which I think might be linked to Hepatitis C, so one day when it's finally gone, I can compare.
What's really got me excited is reading about people getting rid of the brain fog and being able to concentrate again! I hate brain fog. Roll on the day that my brain feels clear and fresh.
In the meantime, I'm looking forward to reading more posts on the message board and learning helpful hints and advice. I've found this board to be more helpful and friendly than any other board I've seen so far. Great bunch of people - some of whom I feel like I know already from reading their blogs!

Blog Spammers

2005-10-29T15:14:00.000+13:00

Someone's been spamming my blog. How annoying! I keep getting messages offering my banners and stuff. Sheesh.
Oh well, not to be disheartened. I know lots of people are finding my blogs interesting and useful, and I will perservere!
The day after tomorrow I'm going for my final blood test before I start my treatment. Ooh - it's getting closer, and I'm nervous.
I'm going to go and read everybody's blogs to see how the beginning of their treatment went.
Bye!

I'm Back & Ready to Start!

2005-10-28T10:15:00.000+13:00

While I was away, I did read all the kind comments were posted. I thank you for that…

A few days ago I arrived back in New Zealand (it's great to be home). One of the first things I did was phone my nurse to tell her I was ready to go ahead with the treatment. She was out of the office so I left a message on her voice-mail. I wasn’t sure that she’d remember who I was just from my name, so I felt I needed to leave a more detailed message. I always feel very uncomfortable saying the words "Hepatitis C’, and this was no exception. She’s a liver nurse, and I’m sure she deals with this disease every day, but I still feel a certain amount of shame and embarrassment at the words.
Anyway, it looks like my treatment will be starting in the second week of November. The nurse is going to have my prescription sent to a pharmacy in my small town. I need to pick it up from there and drive it to the city, where the nurse will instruct me on how to inject myself. INJECT MYSELF?! I’ve never injected myself in my life, and I can’t imagine how I’m going to be able to bring myself to do it – which is ironic, really, since I have a disease most commonly associated with injecting drug users!
My only hope is that the nurse will have some sort of technique she can teach me to make it possible. I’m sure that if I can’t cope my local doctor would help me out, but I should try to be brave and do it myself if I can.

Going Overseas

2005-04-18T13:05:00.000+12:00

In just over a week, I'm off overseas for six months on a "working holiday". Well actually it's more work than holiday. OK, in reality, it's going to be all work and no holiday. Anyway, they say that a change is as good as a rest, and I'm really looking forward to it. It's totally different kind of work than I've never done before, and it's going to be an awesome challenge. Just what I need.
Then, when I get back home, I'm going to start my treatment. I was intending to wait another 6 months after I got home, to finish with my current job, but I've decided that I can handle the job and the treatment at the same time.
Speaking of treatment, it's been interesting reading what a couple of people have said about how pegylated interferon is normal procedure in most places. Crikey - I wonder if it isn't somewhat of a hazard living on a little island in the middle of nowhere.

It's Pegylated

2005-04-08T15:56:00.000+12:00

Right... in resonse to Ron's question... here's what I've found out about the difference between the treatments:

The cheap/usual treatment is Interferon and Ribavin. It has around a 60% success rate.
The newer treatment is Pegylated Interferon and Ribavin. That's the one that has an 80% success rate.

In NZ, to qualify for the better treatment you have to have advanced fibrosis in genoype 3.

So that's all I know. When I have some more time I'll need to do some research to find out what on earth "Pegylated" means!

The "Better" Treatment

2005-04-02T10:08:00.000+12:00

In response to Steve, who wants to know what the "better" treatment is that I qualify for...

Well, all I know is that this treatment has a better chance of success, but I don't know why. Hepatitis C treatment is constantly being improved, and they're coming up with better and better treatments all the time. And I suppose this must be the latest one.

The newer, better treatments cost more than the older ones. Here in NZ, the public health system supplies Hep C sufferers with the old treatment free of charge (well, it comes out of our taxes). The new treatment isn't available to people in the public system. You can get it privately, if you pay for it yourself. The cost is around $NZ15,000.

So most Hep C sufferers in NZ get the old treatment. Only the people who are in a really bad way (and I'm not sure where the mark is) qualify to get the new treatment.

The thing I find a bit disturbing about the public health system in NZ is that you're not given a lot of information. For example, I only found out by chance that there was a new treatment available. Heck, I'd have been prepared to pay the fifteen Grand myself to get the good treatment if I knew it existed.

In a way, it's cool that there's a system that takes care of the people. But I think taking informed choices away from the people is going a bit far. There's a danger of breeding a nation of people who don't take responsibility for their own lives.

Fibrosis 2

2005-03-29T09:45:00.000+12:00

Gosh. It was amazing to get so many comments on my last Blog advising me not to put off the treatment.

I've taken your comments on board and I know what you mean.

The year of "work committments" that I spoke of, break down into two parts.

Firstly, I'll be overeas for six months, from May to October, and there's absolutely no way to get out of that.

After I get back, there's another six months left in the job I'm doing now. This job is mentally demanding and many hour's drive away from the doctor's office, which is why I had decided not to do the treatment while I'm here. But, after further consideration, I think that I could do it. After all, I'll be able to give myself the shots after a couple of practice runs, and I do have incredible support from my husband who is willing to put his own work on hold to help me out with mine if I start to struggle.

So I guess I could just wait until I get back from overseas, which will be six months, instead of a year.

The last three years has been very quiet, and would have been an ideal time to go through this treatment. Seems to be a pattern in my life that there are periods of nothing happening at all, and then all of a sudden everything happens at once!

Fibrosis

2005-03-28T11:10:00.000+12:00

So I went back to the doctor for my post-biopsy follow-up. My doctor's great. He's really caring and sensitive. The news was bad, but he broke it to me gently. My liver has "Stage 3" fibrosis. Fibrosis is measured in stages, from 1 to 4. Once you're up to Stage 4 your liver is pretty much unable to function.

I got a detailed report about what my liver's up to, but it's full of medical gobbledy-goop so I'll have to spend some time on the internet figuring out what it all means.

Bizarrely, there's some good news to come out of the bad news. Since I'm in such bad condition, I qualify to get the latest treatment - the one that's got an eighty percent chance of success. Ideally, I would start immediately. But I've got important job committments for the next year. So I can't start treatment for a year. In the mean time, I'll just look after myself as well as I can.

Speaking of looking after myself, I notice an interesting thing with my ALT and AST levels: I was just going back over my blood tests that I've been having every couple of months since I was diagnosed. The very first one shows that my AST and ALT levels are way above normal. After that first test, I went all out on a health binge. I changed my diet to mostly raw, fresh fruit and veges, almost no junk food or fat, drank plenty of water, got enough sleep and plenty of exercise.

The following two blood tests showed that my ALT and AST levels had dropped to almost normal! Then I fell off the wagon (as you do), slacked off on the healthy lifestyle, and the ALT and AST levels shot back up again.

To prove the effects of healthy living on enzyme levels, I would have to repeat the whole pattern - and I intend to. As my doctor said, healthy living won't get rid of the virus, but it can certainly do great things for the general health of your liver.

Since I have to wait a year to start treatment, it will be important for me to get back into that healthy lifestyle to maintain good health in the meantime.

...thanks again to everyone who has left comments on my blog. You're all great. Feel free to link to my blog wherever you wish...

The Biopsy Wasn't So Bad

2005-03-07T18:11:00.000+13:00

The biopsy was a success. That is, there was no internal bleeding or punctured lungs...
Seriously though, it was a lot more pleasant than I expected. I was unnecessarily nervous about it in the first place.
I was in the hospital from 8am until 2pm. The biopsy itself only took about two seconds. The rest of the time was taken up by the preparations beforehand (having an ultrasound to pinpoint the best location, filling out forms, waiting for the doctor) and the four hours of hanging about afterwards.
I’m so glad that my precious husband was allowed to come in with me for both the ultrasound and the biopsy. The little things he did to support me were invaluable. Like complimenting me on how much I suited my blue hospital gown.
I had the nicest nurse that has ever lived. She held my hand, stroked my wrist and kept telling me I was "doing well". I must say, I was quite glad to have her there when the doctor was sticking that drip needle into my hand! YEEEOOOOW! And then again when he injected the anaesthetic into my side! He had previously mentioned that some people faint when he does that stuff, and I can see why.
When he did the biopsy, it was the weirdest sensation, and it’s hard to describe how it felt. It’s kind of like getting hit really hard in the side, by a golf ball or something, and it knocks the stuffing out of you for a second. I presume what I felt was the needle skimming past my lung to get to my liver. It didn’t hurt of course, because of the anaesthetic. But it was like, "Ugh. What hit me?"
The next thing I knew, the doctor was showing me a jar containing a little brown wormy thing. A piece of my very own liver! I was ordered to roll onto my right side and stay like that for four hours. I had brought a book (thanks to good advice posted on my blog) but I also had hubby to talk to, which was nice.
Then the pain started. Not in my liver, but in my shoulder, which is what the doctor had said would happen. It’s one of those phenomena where the brain, for all its cleverness, can’t tell the difference between the liver and the shoulder. But it wasn’t long before my brain figured out that it could make my shoulder AND my liver hurt at the same time. Luckily, my nurse came to the rescue with some stronger-than-morphine stuff, which she pumped into my hand-drip. That immediately killed the conversation as well as the pain.
So that’s it really. I lay there for four hours, chatted to hubby, eavesdropped on other patient’s conversations, and then the nurse came and sat me up and gave me a cup of tea and a sandwich. By the time they kicked me out, I had become quite comfortable and didn’t really want to leave!
I would like to say a HUGE thanks to everyone who posted encouraging comments on my blog. The ironic thing is that I haven’t told any of my friends or family about my situation. The only person who knows is my husband. So it’s mind-blowing to have total strangers reading my blog and giving me all the encouragement that I need.
Cyber hugs and kisses to you all.

Treatment: To Get, Or Not To Get!

2005-02-11T13:52:00.000+13:00

It seems to me that there’s a common pattern among a lot of Hepatitis C sufferers – and I’m a textbook case! First you find out you’ve got the disease. Then you find out about the treatment (nasty side effects, no guarantee of success) and you vow never to have it. Instead, you decide you’re going manage your disease by living a healthy lifestyle and looking after your liver.
Eventually, however, you find out more about the treatment. You find out that maybe it’s not as bad as you imagined. You realise there’s some hope that it might fix you. And suddenly you’ve joined the ranks of the predictables.
When I got my diagnosis, the first thing I thought of was Pamela Anderson. Since she was so famous (the poor woman), her Hep C story had been all over the news. I’d never heard of Hep C before that, but I had been curious, because she was saying that she only had another ten years to live and other weird stuff (I read later that she had only been joking when she said that – which is weird in itself).
After my own diagnosis, I looked up those Pamela news items again, to see what she had to say about it. One thing that stuck out was that she said she would never have the treatment. Instead, she was going to eat well, look after her liver, etc, etc. You know the scenario.
Anyway, this isn’t a blog about Pamela Anderson, so I’ll move back to ME in a second, but I just want to say that the next time I heard anything about her, it was that she was taking a year off her career to have THE TREATMENT!
So then I was the only person left that I could find who was against treatment.
I complained to my husband that when I searched the Internet for people like me, the only people I found were the ones supporting each other through the treatment. Where were the people supporting each other through living with the disease? The thing is, though, I imagine that if you’ve decided to live with it, you don’t need support after a while because you’d need to put it behind you and get on with living with it.
So I’ll get to my point: Right from the beginning I insisted that I would never, ever let anyone talk me into having the treatment. I was in the doctor’s waiting room, and I was still sure that I wasn’t going to let him talk me into the treatment. When the doctor called my name and I walked into his office, I reminded myself that I wasn’t going to do what I knew he was going to suggest, which was to get the treatment.
By the time I left his office, I was convinced that getting the treatment was a good idea.
And then I started getting comments on my blog, congratulating me on my decision to go ahead with treatment, and I just had to laugh. It was like all these people were out there just waiting for me to make the inevitable decision that they knew I was going to, so they could congratulate me. Of course they weren't, because I'm not the centre of the universe.

I haven't started my treatment yet, but when I do, I'll be one of those people reading new blogs from people vowing never to have the treatment, and I'll wait patiently for them to change their minds, putting no pressure on them, but being there for them when it's time give them congratulations, help and support.

The Dreaded Biopsy

2005-02-04T15:11:00.000+13:00

Today I received a letter in the mail, telling me that my liver biopsy will be on 2 March. Cor… I’m shaking in my boots.
I’ll be making the four-hour drive to the city the night before, so I can get into the hospital by 7:30am, to have an ultrasound to decide which is the best spot to take a chunk out of my liver. Then I’ll be placed on a wheelbarrow, have a tube stuck into my arm, and wheeled around the hospital until 9:20 when they’ll give me a "drug which will make me sleepy" through the tube in my arm. Then they'll get a gigantic shovel and dig a few chunks out of my liver.
Then, I have to lie in my wheelbarrow on my right side for four hours while they monitor me to make sure I’m not going to croak.
Oh, and a week beforehand, I have to go to my local hospital for yet another blood test. This time they’re going to keep a note of what my blood type is, so that they can have some on standby for my biopsy, in case something goes wrong and I need a blood transfusion.
Oh, but it's OK, they tell me, there are only a few things that can go wrong, like accidentally punching a hole in my lung with the gigantic shovel.
Oh yes, I’m really looking forward to my first-ever surgery experience.

Wow

2005-01-21T16:21:00.000+13:00

I would like to thank everybody for posting such encouraging comments on my blog. You don’t know how much I appreciate it.

Anyway, I’m back from my trip to the big city, where I saw the doctor, and I’m really pleased with how it went. He was very informative, and the most amazing thing happened… I think I’ve changed my mind about getting the treatment!

Doc really made things clear for me when he pointed out that I’ve got two choices – either give the treatment a go and maybe it works and I’m cured, or maybe it doesn’t and I’m back where I was. Or, live with the virus and have my liver destroyed.

Here are some important things I learned about the Interferon/Ribavirin treatment that helped me to change my mind:
1) It doesn’t do any permanent damage. In fact, even if it fails to eliminate the virus, it might actually slow it down for a while.
2) My Genotype (Genotype 3) has a good chance of responding to the treatment.
3) Not everyone experiences really bad side effects. And because of my Genotype, I would only have the treatment for 6 months instead of 12.

So, my next step is to have a liver biopsy to assess the damage. That sounds pretty scary as well, but necessary. Then there’s the type of treatment to consider. It’s a bit weird, because there’s the government-funded one which has up to a 60% success rate, and there’s another one which the government won’t fund because it’s too expensive, but has a much better success rate. Apparently the cost is around $NZ15,000. The weird thing is that this other option never seems to get mentioned. They only ever mention the free option. I don’t understand why that is, since surely the pharmaceutical company would be happy to sell the expensive option.

There’s something freaky about the way the health system works in this country. And I haven’t quite got to the bottom of it yet…

The Day After Tomorrow

2005-01-17T14:18:00.000+13:00

The day after tomorrow, I’m going to my first doctor’s appointment to discuss my condition. I didn’t make this doctor’s appointment. I didn’t even request it. The first I knew about it was when I got a letter saying that I had an appointment to attend. The public health system in New Zealand certainly works in mysterious ways! I have been for four blood tests over the past few months. That’s because I received letters in the mail saying I needed to go to my nearest hospital and give blood samples to be tested. Who are these faceless, nameless people that are organising my life? Do they also have hidden cameras installed in my house? It’s all very weird.
Anyway, this doctor that I’m due to see is located in my nearest city - 4 hours drive away. Since it happens to be our second wedding anniversary that day, hubby and I are going to make a little holiday of it, stay in a nice hotel tomorrow night, go to my doctor's appointment the next morning, and get in a spot of sightseeing before coming home.
There, see, there’s a silver lining to every black cloud.

Thanks Out There

2005-01-17T10:24:00.000+13:00

I would like to thank the guy who posted the comment on my blog, pointing out that I hadn’t made any entries since October. It brought me back.
The truth is, it became too painful for me to write about it any more. So for the past few months I’ve been ignoring it. Just living my life as if nothing’s wrong.
It’s not like I don’t know it’s there – there’s still the diarrhoea and the fatigue, and an added problem now, incredibly itchy skin. So I can't completely forget about it - but not dwelling on it has been a relief.
Hopefully now I’ve settled somewhere in the middle. Not all cut up about it like I was before, but facing and accepting it. And if there’s even one person out there who can relate to what I’m saying and feel comforted by knowing I’m going through it too, then I’m gonna keep on blogging.
So thanks, man.

I've started

2004-07-10T11:13:00.000+12:00

I've started reading a book about overcoming depression. So far it's cheered me up just reading it! It talks about how the kinds of things we tell ourselves, and how our thoughts sometimes get confused with reality. For example we might think we're totally useless, but the reality is that's an exaggeration - nobody's TOTALLY useless!
Anyway, what I've found is that it works well to check myself when I have a negative thought (eg. "I'm not going to be able to do this") and change it to a positive thought (eg. "I can do anything").
I like that "I can do anything" phrase because it's true - it's just that I keep forgetting it.

Feeling Better

2004-07-05T17:26:00.000+12:00

I'm feeling good. Strangely good... cautiously great.
Is it the Milk Thistle doing its job? I've been taking it for almost a month now. Is it the good food and exercise? I've been doing that for about three months. Is it anything that I've done? Or is it just that my attitude secretly adjusted itself without me knowing? Suddenly I'm saying things like, "I don't believe that depression is a physical symptom of Hepatitis C." That means a lot. It means I don't necessarily believe what the so-called experts say about this disease. I have my own version of it. After all, what better expert than someone who actually has it?

Finding Out More

2004-06-25T15:12:00.000+12:00

Yesterday some interesting stuff arrived in the mail. It was the results of a blood test telling me which genotype of the Hepatitis C virus I have, and also the viral level.
I don’t understand either of these things properly yet, but have started researching them on the Internet, which is the only way I figure any of this stuff out.
My genotype is 3a. I researched that, and what I found out is that this genotype responds to the traditional treatment of Inferon/Ribavin with a better success rate than other genotypes. That poses a couple of questions. Firstly, I wonder if this genotype has less dramatic symptoms than others do, which would explain why I haven’t noticed too many (the only symptoms I’ve noticed are diarrhoea and fatigue). Secondly, should I be considering treatment after all? It would still take a lot of convincing to get me to go through with the treatment, but if it’s true that because of my genotype I may have a 75% chance of getting rid of this disease, then it’s rather tempting to look into it further.
Next, my “Hepatitis C Virus RNA Amplification”. In other words, the level of virus that’s in my blood. I think that’s what it means, anyway. It’s pretty hard to understand all this stuff and it normally becomes clearer, little bit by little bit, the more I search the Internet.
Anyway, mine’s “strong positive”, which, according to the printout, means over 90% viraemic. Which I’m translating to mean I’m 90% contaminated.
Now the question is, would I still be a good candidate for treatment when I’m so contaminated?
So the next step is to hit the Internet and search for the answers to those questions.
This would certainly be a hell of a lot harder without the Internet.

Meditation

2004-06-24T14:57:00.000+12:00

I can't handle silence. That's something that I learned today, when I tried meditation.
I've been aware that I don't like silence, I just hadn't thought much about why.
If I'm home by myself, I need to have the radio or TV on for some background noise. I can't just be with myself and keep quiet.
Most days I go for a short jog, because it's good for me. But it disturbs me to be out there jogging in silence. In fact, every time I prepare to go jogging I really wish I had a Walkman or something to take with me. I did actually announce once that I was going to get one, but my husband didn't think it was a good idea, and pointed out that an important part of jogging is to be out there in the nature, with just the peaceful sounds of waves and birds.
So I do go jogging and listen to the nature, and the interesting thing is, by the time I get home I feel really good. It's like I've been thinking about my problems and they've become more clear.
And that's the whole point. I think the reason I can't handle silence is because I'm scared that I'll have to face my thoughts - and at the moment my thoughts are, "oh my god I've got this disease and I don't know how to cope with it".
Bad. Sad. Pathetic I know. And I only realised this today when I tried to meditate. You see, I so desperately want to get to the point where I'm feeling positive - and I keep trying different things to try to get to that point. Today it was meditation. I sat in a comfortable place, cleared my mind, closed my eyes and just silently visited my inner self.
My inner self was horrible and I burst into tears. The truth is my body is contaminated by an incurable virus. It's in my blood, and the blood flows to every corner of my entire body.
I know meditation is supposed to bring you inner peace, but I don't think I can go back there.

My Wonderful Liver - Hepatitis C & Me

2004-06-23T17:44:00.000+12:00

My Wonderful Liver - Hepatitis C & Me

Check out this site from a guy who has Hep C, it's really interesting. And it's a good example of why I have chosen not to have medical treatment.

Feeling Sorry for Myself

2004-06-22T15:16:00.000+12:00

I guess one way to get over feeling sorry for yourself is to encounter someone else who is worse off than you are.
I was just watching an interview on TV, with a girl who had her arm bitten off by a shark. The inspiring thing about her was that she seemed incredibly unfazed! She was just smiling and laughing and telling her story, and was carrying on her life as normal.
I know that her problem is completely different to mine, but it was so inspiring to me. The main thing I’ve been having trouble coming to grips with is the fact that my disease is here for the rest of my life. That girl’s missing arm, well heck, that’s a big thing to have missing for the rest of your life. And she was just totally rolling with it. That’s a cool thing about being a kid (she was 13) – you just accept a lot of bad stuff without thinking too hard about it.
But, hey, being 34 doesn’t give me permission to wallow in self-pity.

Bags Under My Eyes

2004-06-21T10:08:00.000+12:00

Bags have started to appear under my eyes. I just happened to catch myself in the mirror the other day, and was shocked. I've never had bags under my eyes before.
It must be the stress. Damn this disease and the stress and worry that comes with it. Bags under the eyes, lines on the face...
Is it shallow to be angry at a disease for ruining my looks?
I don't know. I'm just having trouble dealing with the whole thing. Some days are OK, some are bad.
The bad days consist of guilt, fear, shame, worry, and just this overwhelming frustration that I can't get over it and think positively.
So it's not only the disease I'm worried about, but also the fact that I can't get positive - and I know that being positive is so important for being well.
Oh, man. I wish I knew what to do.

I Have Hepatitis C

2004-06-19T16:25:00.000+12:00

The purpose of this Blog is... well... it has two purposes. Firstly, it's a place for me to write about how I'm feeling. Hopefully that will help me sort out my own feelings. Things have been pretty confused in my head since I received the bad news a few months ago. My thoughts have been swinging between positive and strong, and depressed and terrified.
The second purpose is to hopefully find other people that are in my shoes.
My situation is this: I'm a 34-year old woman, recently married, planning children. I donated blood in November 2003, and in February 2004 I got a letter in the mail saying my blood had been rejected, and I later found out it was because I had the Hepatitis C Virus.
I won't be trying the only known cure for HepC(the old Interferon/Ribavin thingy) because it has a very low possiblity of working and just sounds like an incredibly unhealthy way to treat your body.
So I've decided to live with the virus, and look after myself as best as I can by eating well, exercising regularly and being positive.
Even though I have a wonderfully supportive husband, I don't know anyone else in my situation, and so I feel rather scared and alone. I truly hope that someone reading this will make a comment on my Blog, saying that they are in a similar situation, and we can share what we know.