Eyesight Problems?

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Prompted to write this post after reading Alans experience about his eyes.
In my very first interview with my nurse where I began to learn some of the facts regarding hepc she listed some of the side effects of treatment. One of them was that there was a small percentage risk of blindness and other lesser problems. She made a particular point of mentioning this because out of the 8 patients she has dealt with one had to discontinue tx after 2 months due to retinal bleeding.
This, amongst other things convinced me that whatever happened I would not be going on combo therapy!! This was August 2004.
However by September my nurse had persuaded me to go for a biopsy in order for me to make a more informed choice. I had the biopsy in November, and saw the specialists letter to my doctor recommending that I go on tx as within the next ten years I would have a progressive liver disease.
So in December I decided to go ahead and we set a date for tx Feb 1st.
One of the things that my nurse insisted on was a full eye test. She said that I should explain to my optician that I was going on interferon and to have a complete test.
When I saw the optician I got full eye lock and said:
“What I am about to say is serious so I want you to take note”. I then explained all about tx.
Well, when you impress upon people the seriousness of the situation you get excellent treatment and service. I was booked for two visits to the opticians and had 2 hours of the most exhaustive tests I have ever had. She had obviously looked the subject up since I first visited because I got all my questions answered.
I signed a waiver form at the hospital which said:
“Side effects can include visual disturbances” and “If eyesight reduced go to A& E immediately”.
The optician said,
“Any problems don’t wait to see me go straight to the hospital”.
My nurse emphasised this and said to phone her immediately if I got flashes before my eyes. As it happened after my second shot which I take at 9pm I awoke through the night and couldn’t open my eyes. This lasted for 10 minutes or so. I also got one white flash in my eyes. I reported all this to my nurse by phone the next day but I was seeing her that afternoon anyway so we sorted it out then.
For a few years before I discovered I was hepc+ I experienced problems with glare. The world seemed a lot brighter than it used to be. I put it down to the ozone layer and thought no more about it. Since starting tx though I have experienced a lot of problems with glare and have had some absolutely storming headaches. I never used to get these before.
I`d be very interested in anyones comments on this post.
I see tx as pretty much of a lottery depending on who you get and how well they have done their homework.
After 8 months of getting to know my nurse I can see that I have got one of the best.

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Week 12

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Please note the following refers mainly to Geno 1.

Today is week 11 of tx. Tonight I will be having shot 12. Next Monday I will be blood tested for many things but the most important test, the absolutely crucial test, is the viral response. Unless I have achieved a 2 log drop in the amount of virus in my blood, treatment will cease. Full stop!
I know enough now that no amount of pleading will change my nurses mind because the facts speak for themselves. People that do not achieve at least a 2 log drop at week 12 are classed as non-responders. They are the minority that will not respond to this particular form of combo tx no matter how long they are on it or what mega dose they are put on.
What happens to them? I don`t know really. I suppose it is just down to living as healthy a lifestyle as possible and keeping going as best you can. All this is still new, we just don`t have enough data.
If you are geno 2 or 3 you are different. You may not even get a 12 week test because you will automatically get your full 24 weeks tx and be expected to clear the virus.

For me as a geno 1 I put off thinking about the implications for week 12 for as long as possible, but now that it is imminent I have looked at it and come to a place of acceptance. It is certainly a biggie. Rarely are you faced with your own mortality so profoundly as when you discover you have an acute disease. You don`t look all this in the eye and come away unchanged. It can never be business as usual. Some things will change.
Just as I am writing this Sarah phones me about some carpets we need to order. We had a flood last week and these are things that need sorting out. But her call distracted me from writing this post – and irritated me. After awhile I started to get downright angry.
"Why are you bothering me with this? I don`t need this shit". Hmmm. This is a bit of an over the top reaction to what is, after all, a minor interruption. There`s something else going on here. I took a look inside to see what was really the issue here – and suddenly I saw it. I am writing of facing chronic illness and ultimate issues and she is going on about carpets.
It took me right back to when I was about ten years old and out walking with my dad. It would have been 1965, the war had only been over 20 years and he said this:
“I could never understand family and people back home writing to us on the front line complaining about rationing and that my mother couldn`t get nylons, while all around every day you were seeing your mates get their heads blown off right beside you.”
Even at the age of 10 I could see his point.
He was one of the lucky ones who made it home – minus a leg which he left somewhere in France. Kinda puts things in perspective doesn’t it?
On a far lesser level, but nevertheless just as real, is this war we are in. We have to face the enemy and do what is necessary to gain our freedom. None of us chose to be on combo. It’s a reaction to a threat.
For me, coming to a place of acceptance of all this has only been possible through my faith in God. People say that belief in God is just a crutch for weak people. Yeah, well, I need more than a crutch to get me through this load of bollocks, I need a total life support system and 24 hour permanent care. And that`s just what I get with Jesus.

Gotta go now, got some carpets to sort out.

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SSRI`s

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As I have already revealed in a previous post I decided to use an anti depressant about 5 weeks into tx. Prozac is the original SSRI . The drug companies have brought out about half a dozen others but this is probably because each firm likes to have it`s own brand so they make more money. Please don`t ever think that drug companies are run by nice people who want the best for us and have our best interests at heart. They are in this for the money and they make sure they make plenty of it.
My medication, just for combo itself without all the other little extras is £14,000. If you want to see how much drugs cost go to the British National Formulary site. It’s the official NHS pharmaceutical guidelines and tells you everything.
I first used prozac in 1999 for some moderate depression. I liked it a lot and it really helped. Prozac works by cutting down the amount of serotonin that is taken up by certain receptors in the brain. The result is the brain gets more serotonin than usual. If the depression is caused by low serotonin levels then the prozac raises those levels back to normal.
I don`t like being on any medication for a long time because your body gets used to it, there may be side effects (sides) and you could always get physically or psychologically hooked. So after awhile I discovered a herb that is natures equivalent to prozac. St Johns Wort has been used in Europe (particularly Germany) for centuries for depression. I found it to be as effective as prozac but without the sides.
St Johs Wort (SJW) is used for Seasonal Affected Disorder (SAD) which is a depression some people get in winter due to lack of sunlight. Sunlight stimulates the pineal gland which increases the amount of serotonin released by the brain. So since 2000 I routinely used SJW during the winter months and found it a massive help.
My nurse told me I would have to stop using SJW before commencing tx. There`s a very good reason for this as SJW speeds up the rate at which chemicals are metabolised in the liver. As combo is there to kill the virus we want it to stick around the liver for as long as possible doing it`s job. We don`t want our daily dose of riba being hurried out of our poor old livers before it`s done it`s work.
So SJW was out and I did without for awhile. But tx hit me hard and I needed a chemical boot.
The bog standard dose of prozac (and all SSRI`s) is 20 mg a day. There is a reason for that. The drug dealers do a series of tests on the new drug. In the case of prozac they discovered that the effective dose was anywhere from 10mg to 40 mg. So they split the difference and produce a bog standard capsule of 20mg.
I quickly discovered that I didn`t need 20 mg and having self medicated all my life I just opened up the capsule and took half. Sometimes I just took one every two days. Whichever way, I was in control. If I felt myself getting too hyper I just missed a dose one day. I never increased the dose. The horror stories in the media are probably of people who have taken too much SSRI by accident or on purpose.
I did know of one girl who if she had an argument with her boyfriend would take 2 extra prozac along with a couple of spliffs. Such people tend to be the headline makers.
There are different SSRI`s and the one you will get is probably dependant on which drug dealer gets in first with the free set of golf clubs for the doctor.
But surveys show that 70% of patients get what they want from their GP if they know what to ask for.
The depression experienced on combo can be crippling. If it`s a decision between taking an SSRI for awhile or giving up tx – I know what my choice is.

Martin Bolton Is Useless

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Haven`t posted for a while as I`ve been in the US of A (online). Been cruising some sites and forums getting some different perspectives on all this. So I am in this forum at 6am and there`s not many people around `cause Americans like to sleep at really weird times – I don`t know how they get any business done. Anyway I ask this question and who should walk in and answer it but Martin Bolton! Martin`s from the U.K. as well so what a surprise to see him there.
Well, then I remember that it was Martin who told me about this particular site and I said how really good it was, loads of help etc, and he says well I`m glad someone listens to my advice.
So I thought I`d do a bit of reverse psychology and tell y`all (notice the American accent there) how useless Martin is.
All the advice I have had from Martin is useless. To be honest it`s a miracle I have got this far on tx listening to people like him. Just because he`s got more experience than all of us put together and is coming up to his 3rd time on tx doesn`t mean he has learned anything, does it? That web site of his looks like it was chucked together in 5 minutes, and it`s full of useless bits of information that you are never going to use.
Also, and now I`m going to get really personal. I`ve found Martin standoffish. He`s never answered one email I`ve sent him and when he has answered well I sit in unbelief that anyone can spout such unhelpful rubbish.
Take my advice, if you want to have a successful tx you will avoid Martin and his sort and take no notice of what they say.
So I`m back of to the US of A. Maybe someone is awake there.

Y`all take care now.

Combo Starters Read This

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Hepatitis C is not one virus but a series of viruses that for convenience sake have all been lumped under the general term hepatitis c. What distinguishes one virus from another is the genotype. The genotype will determine the amount of ribavirin you have to take and the length of treatment.
Genotypes 2 and 3 are the easiest to treat, require a lower dose of ribavirin and need 24 weeks of tx.
People with genotype 2 and 3 will be on 800 mg of ribavirin.
Both groups will be on the same level of interferon. Inteferon is a protein. It is naturally produced by the body. It is not a poison. To think that you are injecting poison into yourself when you inject interferon is complete nonsense and is psychologically damaging.
Genotype 1 people will be on at least 1000mg of ribavirin. If they are 75 kilos or over the amount increases by the weight of the person. For example, I am genotype 1 so automatically this puts me on 1000 mg of ribavirin. But I am also 85 kilos, which is 10 kilos over the standard weight so I get an extra 200 mg of ribavirin.
So all in all I take 1200 mg of ribavirin daily. 3 tablets in morning and 3 tablets in evening.
Compared to a genotype 2 and 3 who are on 800 mg daily, this is a massive one third extra every day. You don`t need to be a rocket scientist to figure that the more ribavirin you are on the more symptoms you are likely to get and the rougher the ride.
Also, genotype 1 people will be on 48 weeks tx – a longer haul all round.
I have yet to find anywhere, anyone who can tell me what ribavirin actually is. But all agree it is an immune system stimulant that enhances the effect of the interferon.
When looking for information and in particular identification with someone who has hepc and is on tx it is important to determine the genotype and therefore the amount of medication they are on so as to get a true picture of whether this person is likely to have similair reactions to you.
I have yet to find anyone, anywhere who has had such an extreme reaction as I had on my first day of tx. My continuing experience is fairly miserable. I can only put this down to the fact I am on this high dose of ribavirin. You may not get this extreme reaction - I hope you don`t.
In a previous post I mentioned that I tried to get my ribavirin reduced, but my nurse wasn`t having any of it – so that`s that. I do what I am told.
I hope this is helpful if you are just starting out. When I started my tx there were only two other hepc bloggers, Ron and Jonathan. It was easy to categorise everything and take everything in.
Now, at the last count there were 14 hepc bloggers. For a newcomer it`s a daunting prospect to be faced with this mass of often seemingly contradictory advice.
My personal advice (take it or leave it) would be to find a couple of people of the same genotype as yourself and get to know them first. Read their stories, get a feel for them. Then you can move on. To be honest if you are genotype 2 or 3 and are just starting out and you happen to be reading my blog - you are probably reading the wrong blog. Find someone of your own genotype (sounds almost racist, doesn`t it) and come back to me later if you like.
This shit is heavy enough without having to wade through a mass of information – a lot of which will not be relevant to you.
I know that you will be able to get help from any of the commune of hepc bloggers, but it might be helpful to mention your genotype and amount of medication.

Have a safe journey. I wish you freedom.

Celebrating All Things Italian

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The pope is being buried tomorrow and Sarah is in Italy.
These two events are entirely unconnected. Sarah was already booked to go and see her family months ago, but it is an interesting time to be there. From all the news coverage you would assume that all of Italy is in mourning. Nothing could be further from the truth. In fact most Italians couldn`t care less about the popes comings or goings. Having spent a year out in Italy there were many things I found fascinating and contrary to what I would have expected.
For example, I was aware of the papal stance on contraception. So powerful and deeply held is this that in Africa where AIDS is out of control and where protected sex seems like a good idea, condoms are still prohibited by the catholic church. Yet here in Italy the home of the papal see condoms are freely available and on display everywhere.
One would have thought that in the home of the leader of one of the worlds largest religions that seems to have a definite downer on sex you would find a very narrow and restricted television and media system. No, you couldn`t be more wrong. I was amazed to see nudity and semi-hard core sex commonplace on Italian TV years ago. Magazines containing hardcore sex, including bestiality, have always been available from the corner newsagents, certainly since I was first there in 1977.
With all this sexual freedom you would think that Italians are having a great time in the sex department. But not so. I was extremely puzzled to read in an article written in 1989 that a survey showed that many Italian men preferred to watch a pornographic video than experience the real thing.
I don`t understand this. It`s like having a finely tuned Maserati outside on the drive but instead of taking it out for a spin, you sit inside playing with your dinky car.
All you counsellors out there explain that one to me please.

But one thing you would expect and you certainly will find is chic. Italians have style coming out of their ears. It exudes from every pore of their skin. There is no finer entertainment than sipping a perfect cappuccino out on the piazza and watching the floor show that is everday life for the Italian. If living was all about lifestyle then Italians have it with a capital L.
I still cringe slightly when I think of the questions my Granny asked Sarah when they first met in 1976. Granny of course, would have seen two world wars and was born just as the Empire had reached it`s zenith and was on the wane.
“Do you have toothpaste in Italy”? Granny asked.
As Sarah and I were still getting to know each other I was interested to see how she would respond to this.
“Yes, we have toothpaste” she replied sweetly.
So far, so good. Granny sat for a few minutes digesting this information and then to my astonishment asked,
“Do you have soap powder in Italy”?
Well it was obvious that a more detailed description of everyday life in that far off distant land was needed.
Still, when you look back you can see how far we have travelled and how sophisticated our tastes have become.
I can still remember the controversy there was when supermarkets started selling alcohol back in the early seventies. Before this the range of wines and beers were miniscule. Now, in Britain, we can purchase wines and beers from all over the world – something you cannot do in any other European country. You can buy fine wine in France, but it will be French. In Italy, again excellent wines but Italian. Only in Britain can you get such a huge range and variety of wines.
And it`s the same with food. The French and Italians eat very well but it is home produced. You cannot get foreign food. Here in Britain we can eat pretty much what an Italian would eat, or sample food from many other cultures.
I still remember as a kid (so early 60`s) having a long, long pack of spaghetti in the food cupboard. We never ate it. It was there for years till it was eventually chucked out.
Us Brits have come a long way and we can be sophisticated if we want. And on a warm summers day when the sun shines and we are sitting outside sipping our cappuccino……….

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I Have Seen The Enemy And It Is Us

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This post is not about hepc.

Is Germany re-arming again? Have the I.R.A. declared a new campaign of violence against mainland Britain? How many tall buildings in the U.K. have had airliners smashed into them? Just wondering. I know I don`t get out much but I am pretty sure I would be aware of such significant events.
How is it then that when I visit my local country railway station (entirely unmanned and deserted) I hear loudspeaker messages constantly warning me about suspicious baggage left unattended. Such baggage, I am told by a sombre voice, is liable to be removed by the security services and destroyed or blown up.
I could feel the riba rise within me. Who started this campaign of fear? And why? So many government forms I receive now justify asking personal questions or list just about every area in my life that they now think they have a right to access – all in the name of preventing this nameless and faceless and almost certainly non-existent terror.
Listening to that tannoy message I was reminded of the Weimar republic and other shaky governments. When things are looking dodgy at home it`s a good idea to create an imaginary outside enemy that we will all unite against and forget the crap the politicians are serving us up.
The Islamic community in this country are very happy. So they should be. We look after them. They experience far greater freedom in this country than they would in their own. They want to see Britain continue just as it is. They do not want to destroy it. They are not crying out to terrorist factions all over the world pleading to be released from their bondage. No Sir, everything is O.K. please don`t rock our boat.

It`s small children that I feel the most for. They now go to school where they are locked in behind doors with security cameras trained on the outside world where lurks all manner of danger. In my work I visited many such schools and if a child should, without thinking, open the main door to anyone it was major drama. A hysterical teacher would begin a rant,
“You don`t know what`s out there. You`re exposing all your friends to danger”.
I hope we are training up lots of counsellors to deal with these kids when they are in their teens, traumatised, full of fear, their only relief to be found in an alcopop or a pill.
It`s very sad.
What we need is a Big Brother to look after us.

Disciplining The Child Within

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Alternatively this post could be called “Why don`t you bloody grow up”, but everyone is so used to and have become comfortable with psycho-babble that I use it myself all the time. Nick made some interesting points about tx and it`s potential for making positive effects for change. Sue picked up on this straightaway and said she had been wondering whether the inner child could be reached and helped. She said that treatment seems to have enabled more strongly her inner challenging child.
These thought s resonated with me and have been percolating around for awhile. I remenber Ron, way back somewhere in the beginning of his tx compensating for what may have been a riba-rush. He was in a meeting and someone was banging on about something and Ron was all fired up to say something- but didn`t, just in case it wasn`t him responding but the tx.
I had the same response myself a week or so ago. Someone irritated me on the road and normally I would have at least tooted, long and hard. I may even have got out and had a rant (only happened twice in last ten years). But, because I was compensating for the combo effects and know how dangerous getting worked up is I did neither of these things.
Firstly, I had been well prepared by my nurse on this very issue. She said,
“You can make any gestures you like, but don`t get out of the car”.
Talk about being mentally prepared beforehand! Thanks, my nurse, you are a star.
After the incident I suddenly realised that I had exhibited more control while on these emotion charging chemicals than what I would have shown if I had been normal. I thought, well there is no reason why I can`t be this better, more controlled person even after treatment ends. I mean who wants to go back to normal behaviour if it is not normal for your age i.e. juvenile.
As I surf the blogs I notice all of us struggling with this issue. Peter, over there in Vermont, says that tx is throwing up all sorts of issues that he would probably prefer to have lie dormant. It`s a very unusual side to the combo and one that I think we are all finding fascinating, although not always welcome.
May our journeys help us all to get in touch with our inner child so that we can heal the hurts, discipline where needed and come to the place where we can unconditionally accept ourselves for the unique being we are.
One of the great legacys my cat left me is that she taught me the power of unconditional love. No matter how grumpy and bad tempered I would get - and off she would scurry and hide – she would always come back out of hiding, seek me out and jump up for a cuddle. She would look straight into my eyes as if to say is everything alright now? And I would say,
“Yes, everything`s alright now”.

Going away for a much needed weekend break with Sarah. Catch up with y`all soon.