Martins Blog


Sunday 24/04/2005 - D-Day Minus 22

Sunday is appropriate, because it is glorious sunshine. Have you noticed how the Blog rate drops off when the weather is nice? Better things to do than being stuck in front of a screen, I suppose.
I haven't heard from Heidi who emailed me during the week. Unfortunately her return email address did not work. I now realise how frustrating it is, not being able to get in touch, and it has spoilt my 100% record of replying to every email that I receive via this site. Oh well, can't be helped I suppose! For Heidi, and anyone else with suspicions as to whether their email is working, the quickest and most reliable test is to send one to yourself, and log off. If you don't receive it when you log back on then it isn't working.
Thinking positively, in practice for three weeks time, it occurred to me that many people who have been through treatment successfully do not know that they can be re-infected with the same virus and end up back at square one. You don't end up with immunity to the virus - just some resistance. You need to bear in mind that the virus can live for a considerable time outside the human body, particularly in dried blood. It is a smart idea to treat yourself to replacement razors etc in the later stages of treatment when your virus counts should hopefully be zero, as you don't want anything contaminated with the virus hanging around afterwards. The risks are very small, but present. Even when you are nominally free of the virus, it is still best to behave as though you still have it - from a preventing transfer point of view. There is a very small chance that an undetectable quantity of virus could still survive in you, and your immune system will keep it from being a problem. This could still infect someone else, which is why ex-heppers are not allowed to give blood or transplant organs. There is, however, nothing to stop you performing the normal celebration ceremony when told that you are clear. This consists of your best imitation of the highland fling, naked at midnight! This is known as the 'undie dance' as in 'undetected', and no treatment is complete without it!
On the subject of remote possibilities of infection, I have been playing with the idea that it may be theoretically possible for insects to transfer the virus. I'm not talking about insects being a carrier like mosquitoes are for malaria. In these cases the infection actually lives and breeds in the insect. I'm talking about the 'dirty needles' that insects are equipped with being a method of transfer between two adjacent people. It would be a very inefficient method of infection, and may only work in say one in a hundred thousand bites, but it would explain how a virus could transfer without human intervention. Think about it. Prior to medical practice as we know it now, the virus must have still existed, and it must have an alternative method of propagation that does not involve hypodermic needles and blood products. The virus must have been around for a very long time to evolve 6 genotypes. So what method of transfer existed in the days of Shakespeare for example? Bed bugs, fleas, lice, ticks and the like were certainly more common, and getting a hundred bites a year would be common. Multiply that by a lifetime of years and you get the sort of figures that I am talking about. Probably a 50% chance in a lifetime. Not enough to cause a raging epidemic, but enough to keep the virus ticking over. There is some evidence to support this. There is one fairly certain case of HCV being caught via a deer tick, and a good study to show that the virus can survive in mosquitoes for a time. The study did not manage to prove the mosquitoes could infect anyone, but, as I say, if the odds against it were one in one hundred thousand, then it would be almost impossible to prove. Interesting thought isn't it?

By the bye, two other sources of infection have surfaced recently. Gamma Globulin, which has been used for treating infections (including hepatitis) since the 1950's, and Rhesus factor given to mothers after childbirth. Both of these are blood products, but few people realise this. They ought to be explicitly mentioned in literature, but they are not.

This time, three weeks tomorrow, I will be looking at the first syringe full of interferon that I have seen in a few years, and a pile of ribavirin, all with my name on it. I wonder if my hand will shake when I do the first injection. I wonder if I will get anywhere near finishing the DIY jobs that I have ongoing at present before the treatment robs me of enthusiasm. Time will tell, but I'm going to do my level best to stay as near normal as possible. Time to buy my prescription pre-payment certificate.

Monday 18/04/2005 - Awareness - Can you help?

I've just put the phone down after a long chat with Chris Duncan, who is one of the organisers of The Hepatitis C Awareness Campaign. As part of the campaign he is trying to put together a list of people with experience of Hep C who are prepared to talk to the media about the subject. The idea is that when a journalist gets in contact with the campaign, he or she can be given a local contact to talk to. It can be organised to the extent of being given a list of questions in advance, or just a social chat. Needless to say there is 100% backup available in terms of literature etc. I'm of the opinion that we need to fight the virus on all fronts, and educating the general public should be high on the agenda. Every case that is detected early means one less in the 'undiagnosed' statistics, and a potential life saved. We just need to get people aware of the virus. It also means a chance to right some of the wrongs that many of us have experienced in the past. If you feel that you could help, Chris would love to hear from you, and his contact details are below. Needless to say, if you contact him this will remain confidential until you say otherwise. I'm up for it! What about you?

Email Chris Duncan

You can also phone Chris on 0207 815 3955 (Direct line number)

Sunday 17/04/2005 - Flying High?

Firstly, thanks to everyone who has Emailed me this week. I appreciate the encouragement! My apologies for those who had to wait two days for a reply, but it has been a busy week. Wednesday was a day trip to Spain to buy fags at a sensible price, and I refuse to give up just before treatment. My nerves will be frayed enough as it is. At least it will not cripple my wallet even if it does my health. For those who would question my sanity, take a look at the figures. Return flight to Girona, Spain (Ryanair) at around £23. Parking at Stansted £7. Return bus fair into Girona from airport £2. Say total of around £50 including meals and fuel. 3000 fags bought and imported legally £300. UK price £780 (Tesco) saving £430. Not a bad return for one days effort. I had an interesting thought that Gordon Brown and the like have been making this out of me at regular intervals for donkey's years, and I have somewhat less of a conscience now about the cost of HCV treatment, having paid for it many times over in exorbitant taxes.
The only fly in this particular ointment was the late return and early start the following day. I had to go to a particular hospital in the north of England to do some work there. It was somewhat of an eye-opener. I had to wash my hands leaving wards because they were filthy from handling equipment. This also applied to theatre recovery rooms. When I moved one piece of equipment in a store room off a ward, I had to kick away the debris that had accumulated behind it. I have been in cleaner public toilets. It all looked superficially clean, but as soon as you touched something that was out of ordinary view you found the real story. I suppose this could be likened to cleaning behind the furniture at home, but at home it doesn't matter, and in hospital it does. I'm damn glad I was working there and not a patient. I don't care if it is politically correct or not, but from my point of view the blame sits very heavily on the shoulders of the current government. You don't need to be a rocket scientist to work out that the reason for dirty hospitals is insufficient man-hours spent cleaning them. They need more cleaners, better trained and better paid, not more paper shufflers playing with mythical figures which are meaningless in the real world. It is easy to get it right, and penny-pinching on the hygiene budget results in getting it wrong. Q.E.D.
On a lighter note, first injection is four weeks tomorrow. I'm actually looking forward to it. Perverse isn't it?

Sunday 10/04/2005 - Forward Thinking

This is one of those occasions when I know that I will have difficulty starting, and when I do get started it will go on forever, so I'll resolve to be brief! Fat chance!
It is now about five weeks to re-treatment, and half the interminable wait has crawled by. The mental preparation for the 'big match' is done, and I'm at the stage of getting frustrated waiting for the whistle, amongst other things.
The other thing that winds me up is the number of people on treatment that make, and are still making all the mistakes I made first time round. I know everyone has their own approach which works for them, but there is an awful lot of unnecessary suffering because people will not listen.
I hate to lecture, but I'm going to go through it once, and afterwards I will shut up and the information on the web pages will have to suffice.

Take paracetamol. You can safely take up to 8 tablets per day (4 grams). Take it whether you feel you need it or not. It sits solidly on top of just about all the flu-like side effects of interferon. Treat it as part of the treatment. It is much less effective if taken when you have symptoms, so take it before you get them. Try 2 tablets morning and night, and reserve the other 4 in case you find symptoms creeping in during the afternoon. I ignored the advice until late in my second course, and suffered. You don't have to.
Cut back a bit on what you expect to get done both physically and mentally. Try to take everything a little bit more gently. It reduces the physical and mental pressure, and the 'good day, bad day' syndrome becomes less extreme.
Take ribavirin with food. I don't mean before or after, I mean with food. In the middle of a meal. It absorbs a lot better with fatty food, so use the excuse and indulge. Toast with plenty of butter for breakfast, full cream milk with cereal, etc. You are highly unlikely to put on weight during treatment, so eat what you feel like, and don't be afraid to snack. Try to get plenty of variety in your diet. The most difficult bit is to get sufficient calories into you when you have no appetite, so small amounts at odd times usually works better than big meals. Chocolate is high in fat and calories, so are ice cream, cream cakes, burgers and chips. All make good companions for ribavirin, and are positively recommended! The fat content of what you eat with the tablets can make a 60% difference in the amount of ribavirin that is absorbed. If you are plagued with diarrhea, try taking a spoonful of natural (live) yoghurt (or Actimel or Yakult) after each meal. Ribavirin tends to kill off useful gut bacteria, and the yoghurt replaces them.
You must not drink any alcohol whatsoever whilst on treatment. Interferon is highly soluble in alcohol, and will be removed from your system leaving a gap that allows the virus to replicate. One glass of wine could be all that it takes to ruin your chances of a cure. Be very suspicious of advice to 'drink plenty of water' whilst on treatment. Any such advice is probably without medical foundation, and could reduce the effectiveness of treatment. (See discussion on front page of site).
Throw away any vitamin or supplement that has not been specifically prescribed for you by a medically qualified HCV specialist. Your liver and indeed all your body has a very hard time during treatment, and these tend to make matters worse. Nearly all the vitamins have been trialled to see if they benefit treatment or side effects, and none have been shown to help. Many supplements contain iron which should be avoided at all costs as it makes anaemia worse (perverse isn't it?). No herbal preparations have been shown to be either safe or effective, and some are positively dangerous, as are high levels of certain vitamins and minerals. The risks vastly outweigh any small potential benefit. There is also the factor that many of these will cause false readings in liver and blood tests. The whole area is a minefield designed to trap the unwary. Do you seriously think that if there was any vitamin or supplement that would make your treatment more effective or easier to tolerate that it would not be prescribed as part of the treatment? If you wish to supplement your treatment, homeopathic remedies are safe as is acupuncture.
Don't bother talking to a GP about HCV or its treatment. The knowledge of most GP's about HCV would fit comfortably on a cigarette packet with room to spare. By the time you have finished your treatment you will probably know more than any GP in your area. If you need advice talk to your HCV nurse or specialist. If you can't get sense from them call the advice line at the Hepatitis C Trust. This is a very specialist niche in the medical world, and GP's do not have the in depth knowledge to deal with it. If GP's were more aware a lot more cases would be diagnosed a lot earlier. Don't be afraid to seek advice if you get any unusual symptoms. The treatment suppresses your immune system and there is always a chance that an opportunistic infection or underlying condition is causing a problem.

I've run out of steam now - thank you for your tolerance! There's nothing like a good rant to get it out of your system!
I ought to be commenting on the exchange of emails that I have been having with Jonathan this week. This concerns the time it takes to recover from treatment, and is still a matter for ongoing debate. Jonathan's views and mine differ somewhat, and much as he has a good idea of the maths of decay equations, the actual practice differs from any simple theory. Suffice to say for now, that his predictions for recovery time for the interferon component of treatment are too long, and those for ribavirin are way too short, particularly when a 48 week course is involved. It is all a bit academic really as the amount of drug in your system required to cause side effects varies greatly and that is the crucial factor. If you get side effects early on in treatment then the odds are that they will be slow to clear at the end. Equally, if the effects arrive late they are likely to be cleared more quickly. Suffice to say that just about all side effects do disappear, and there is a bonus. An awful lot of minor aches and pains go with them. I can honestly say that I have never felt so well as I did when I recovered from my treatments. I suppose that many people who, like me, have lived with HCV for many years get to tolerate minor aches and pains, and feeling 'off-colour'. When you are over the treatment and the virus is not dragging you down, you actually feel well which is different to how you normally feel. I'm looking forward to it!

Sunday 03/04/2005 - Positive Thoughts

So is there really anything positive about Hep C?

Well for a start, without its existence you would not be reading this! I would not be motivated to write it, nor you to read it. So its first positive aspect is that it brings people together. The virus is a great social leveller, making no distinctions between rich or poor, young and old, deserving or otherwise. We all get thrown together in a battle against an unseen insidious enemy.
The battle starts very early on. Just discovering the virus and its capacity to kill changes you for the better. You become stronger when you accept that your fate may have been decided for you, and a difficult path lies ahead. It brings out the best in you when you realise that you have been presented with your own . they are treatment related, or worse still some underlying condition that has been triggered off by treatment. Its very much 'lucky dip' as anything can come out of the bag, but in my case I'll be surprised if anything new turns up.
Two weeks now with no alcohol, and I'm slightly surprised that I don't miss it. It grates that diet coke, the current favourite, is more expensive volume-for-volume than beer, and it is not taxed!
Nice to see Jonathan back from holiday and sounding good, and Paul surfaced again after a rough patch. Glad to have you back guys!

Those of you who have read Ron Metcalfe's blog will have noted that he has been fighting an additional dragon this week in the shape of Colette Wintle. Much as she chose the wrong place to do it, she does have a point, which is more understandable if you know a bit of background. I fed her name into a search engine and came up with this.
I thought that compensation for HCV infection was made on an ex-gratia no-fault basis, in which case why not to her? Something is very wrong there!

Having thought about it long and hard, I can now look at compensated HCV sufferers with only a small amount of envy, rather that turning completely green! I got my HCV fooling around with injectable drugs during a mad phase long ago, and I can't see anybody wanting to compensatå me for that! Frankly, other than the compensation aspect, it doesn't matter a damn where you got the HCV from, all that matters is curing it. In some respects those who got their virus innocently do the rest of us a favour in that you cannot apply the 'druggy disease' label to HCV as so many caught it innocently.

I am concerned that the targeting of the Awareness Campaign may be a little suspect in that effectively asking the man in the street to 'face up' to his past may result in a sod-off reply. Perhaps saying that anyone with a tattoo, or past medical treatment abroad should get tested, (and by the way if you have ever experimented with drugs you should also get tested,) might be a more successful approach. It would be worth stressing that if you go for a test that you will not be asked why you think you are at risk. In other words, try not to force people to face up to their past unless it is medically necessary. It may be a better approach.

Jonathan Colam Comments Collette will have had an ex gratia payment from the Skipton Fund, in order to get the first payment of £20K you just have to prove you have haemophilia and hep c, in this respect is very easy for a haemophiliac to qualify for the payment and none are refused. If you can prove you have cirrhosis then you get a further £25K. There is no requirement for a haemophiliac to prove that the infection came from factor treatment.
The compensation that Collette is seeking is in addition to the UK government ex gratia scheme. There is currently a class action being undertaken to sue American blood producers, she was unable to take part in this action as her medical records were not available to prove that she had American blood.
There is a strong argument that American blood producers were negligent in the way that they sourced blood. There is also a general feeling that the £20K offered by the government is wholly inadequate and should be increased. In Ireland and Canada the compensation was of the order of £250K, a similar amount was paid out to haemophiliacs with HIV.
Jonathan

Thanks Jonathan, that clarifies things a lot. The motives are now clear, serious money is involved! I still don't see what is to be gained by railing at bloggers when the issue is with the government and NHS!

Ron Metcalfe Comments
Glad to hear you're two weeks without alcohol - and counting. And I'll bet your liver is even gladder than me!! It may surprise you to think you might even lose the taste for it after a while. I have - I was fairly shocked to discover this when I had a Christmas glass of cheer last year. All I could taste was the chemicals!!

Which brings me onto the diet coke! If you're into doing your liver a favour - look at the additives and chemicals on the ingredients list on a can of Diet Coke and think what your poor liver has to metabolise from that list! Water - 2 litres a day - flushes the toxins and helps when you're on treatment. Healthiest thing for you. This sounds like the 'telling off' you were worried about earlier in the week, doesn't it?

I wish you well sorting out the "few issues" with your hospital - and hope the HepC Trust will be helpful to you on this one. Justice will prevail in the end. Keep us posted on news as it happens....

At the risk of repeating myself - I don't think I have been fighting a dragon - I think I did what I could to step aside from a fight. And I do have sympathy for Collette's situation and can see why she's angry - I just don't want all that emotion aimed at me! Especially at the moment while I'm on treatment.

Take care and wish you well in your journey
Ron

Thanks Ron!

Wednesday 16/3/2005 - Good News, Bad News and Good News
Today was the start of the Hepatitis C Awareness campaign, and a good excuse for a trip to the big smoke. Great weather, a bit of good publicity, and the chance to put a few faces to names. Some of you may have caught the Sky/Channel 5 lunchtime news. Not bad coverage considering that it was competeing with the budget.
I met Ron and Carol Metcalfe. I am staggered by the man. He is amazing. He was obviously not having a good day treatment-wise (week 18), but was dealing with press, general public and all the rest like a true star. It was awesome! If there is ever a candidate for knighthood he is it. Stuff Bill Gates! If Ron reads this I'll probably get told off, but seriously, when it comes to leading by example he certainly showed the way. It was inspirational stuff, and just shows what you can achieve if you are determined enough. Lesser mortals would have stayed in bed feeling sorry for themselves.

From a personal point of view, the news is good. It looks as if my treatment centre is in the process of doing a complete about turn, and starting to conform to NICE guidelines, whether they like it or not. If they manage to work out that I am the source of the pressure from on high I reckon that I will be about as popular as a fart in a space suit! Tough! I can live with it! The thing that worries me is the bad news!
The bad news is that I am definitely not the only one. At least one other centre has been doing it wrong. The problem is that they don't keep up with NICE guidelines, and the two quantitative tests required by NICE are a lot more expensive than the single qualititive test they have been doing. Unfortunately, the result is that many people who might go on to a cure are taken off treatment at 12 weeks under the old protocol. It also means that many people who have failed treatment under the old protocol will need to be re-treated under the new one to find out if they are really non-responders, or just the result of obsolete treatment practice. There are two basic problems. The first is that there is no way of finding out how big the problem actually is, and the second is what to do about it. The organisation that is working for me is small and has limited resources, and if it gets swamped with enquiries, will be unable to cope. (Arrogant aren't I to think that enough people will read this to swamp anything?) There are only about 75 treatment centres in the UK, the majority of which should be doing things correctly. The strategy is to try and find out which are doing it wrong and get them to change. This keeps the numbers sensible.

How about this for an approach?

Ask yourself the following questions.

1. Have I been treated recently (or currently) and never been told my viral load?
2. Have I been told recently that my treatment was or will be being stopped at 12 weeks if the virus was/is 'still detectable'?
3. Do the terms 'viral load', 'virus count', '2 log drop', 'drop to 1%', and 'EVR' mean nothing to you, and have not been mentioned during recent treatment?

If the answer to any of these is yes, then there is a good chance that you are either being treated improperly, or a candidate for re-treatment. If you are on treatment now, or about to start treatment then the matter is urgent! By all means approach your treatment centre and complain, (Read the NICE treatment guidelines first - link on Official Sites page) but I would appreciate it if you would email me with the name of your treatment centre. I don't want any personal or sensitive information, not even your name. I will log the name of the centre and destroy the email unless you tell me otherwise. The names of the centres will be passed along the same route that got a result for me, and will hopefully get the same for you. I know its an oddball approach, but at present I can't think of a better one! I appreciate that I'm taking a serious risk by doing this, and if anyone has a better idea I'd love to hear about it. If I don't hear anything then that's wonderful as the problem is just in my imagination. If I get swamped, I'll cope somehow, but at least either way I can live with my concience!

Monday 14/3/2005 - 8 Weeks and counting

This week should hopefully see some progress on the 'proper treatment' front. I'm a bit cautious about saying too much as it could compromise things. If I'm advised that I can speak freely it will all be documented here. Watch this space!
On Wednesday the 16th the Hepatitis C Awareness event is launched at Leicester Square, London. I picked it up from Ron Metcalfe's blog last week. Sounds like a good excuse for a day out, and perhaps the chance to meet a few people. For an awareness event it seems that getting any information is extremely difficult, which is very strange. I can't work out whether it is targetted at the general public, the press, or what! Anyway, I'm going! See you there!
On the spur of the moment last week, when my appointment came through I decided to experiment and find out what being alcohol free would be like. I'm slightly chuffed to announce that I have had a dry week, with no effects. There were a few raised eyebrows when the customary pint of bitter changed to diet coke, and full explanations were given. The word has gone round to sell brewery shares immediately! My beer consumption had been fairly modest of late, certainly below the recommended maximum, but if I can stop the alcohol now its one less battle I have to fight when I start treatment, and it should boost the 'losing weight' campaign. It is quite an interesting option to give up by choice, rather than because you have to. You don't have the resentment that comes from being told what to do!

Thursday 10/3/2005 - Its hit the fan already!
You would have thought as far as treatment is concerned that having been there, got the T-Shirt, starred in the movie, etc, that I would be scratching around to find something to say at 8 weeks before kick-off. No such b****y luck! When my appointment came through there was the standard patient information leaflet enclosed which is the normal 'can't-be-bothered-to-look-up-my-life-threatening-condition' idiots guide to treatment. When I resumed some degree of normality after adjusting to the news that I was finally going to get treated again, I actually read the leaflet. Just as well that I did! It said that 'If the virus is undetectable at 12 weeks then treatment will continue'. Not a mention of 2 Log drop, so I queried it with my treatment centre, thinking probably out-of-date leaflet sent in error. (No date on leaflet!)
I got the reply today. I quote.

Our practice here currently is to look for virus at 12 weeks - if detectable, then to stop

Straight into the NICE website and look it up. No this is not how it should be done. NICE is absolutely clear, the test is 2 log drop. So what do I do now? If I do nothing I will be taken off treatment at 12 weeks just as before, because identical treatment will get an identical result. The virus will still be present at 12 weeks, treatment will stop, and I am back to square one with the NHS about £5000 poorer for no result. Completely pointless. I don't particularly rate my chances of getting a 2 log drop, but they are a sight better than the odds of being undetectable judging by my history.
When I think about it, I have never been told my viral load, and I had to ask to get a genotype test, and ask again for the result. I would stake a small bet that my treatment centre has never done a viral load test on me, and probably not on anyone else. I wonder how many people are walking around with the virus now who could have been cured if their treatment had been done to the correct protocol.
Sorry, but I am not going to be a good little boy and take my medicine just like the doctor said. There is too much at stake, not just for me!
I have discovered that the NICE protocol is a legal requirement, and nobody is above the law! Moves are afoot, as they say. With any luck I should shortly be able to inform everyone of how to approach this sort of issue.
In many respects it is a shame to risk spoiling the long-standing relationship I have built up with my treatment centre, but currently I have nothing to loose. I might as well not be treated at all, rather than suffer months of treatment that has been proven not to work for me. My only chance is to hope for the magic 2 log drop, and the 'full monty' of 48 weeks.

Monday 7/3/2005 The Postman Cometh!
I shouldn't have said it should I? The postman finally delivers the news that I have been waiting so long for. Treatment starts 16th May. Typical that it was posted second class on the 1st. Six days to travel 30 miles!
I'm in a right mix of emotions now. Pleased, excited, relieved, apprehensive, annoyed, and not a little fearful. All good stuff! I'll calm down a bit, get my head together, and try to get this blog properly started shortly.

Blog Notes - Sunday 6/3/2005
This is not one of the standard blog forums where you can comment 'on-line' but I will try to feedback any Emails I receive into the text as I go. Use the Email link on the right to contact me, and please say if you want your comments kept confidential. I keep adding to and revising the site to keep out of mischief! A big thankyou to all those who have emailed comments. Good or bad, they are always welcome. Any suggestions as to new topics that need covering are particularly welcome, and likewise error corrections, and challenges! I take the view that I should be able to justify everything said on the site, and, if challenged on any point, should be able to justify it. So if you disagree with anything, let's hear about it!