A new group for those having problems with the Skipton Fund appeals process has been set up, worth a look if you fall into this group although to be fair not many do judging by the groups activity level. http://groups.google.com/group/Appealers

The Skipton Fund was set up to make “goodwill” payments to those who were likely to have contracted Hep C from Blood products/transfusions prior to the 1990’s. Its a goodwill payment because the Govt denies any liability but has decided to pay out some tax payers money anyway. The area of appeals is a contentious one, whilst I feel that such organizations have a duty to the tax payer to ensure that the money is used wisely the Skipton Funds appeal process has been somewhat shoddy to say the least.

It seems appealers fall into a few groups. There are some that have no record of having a transfusion, bearing in mind that this could have been 20 odd years ago thats not surprising, how that is resolved I have no idea. Then there are those that have never had chronic hep c, they cleared the virus in the acute stage for example. If it were me I would thank my lucky stars and move on. The area that seems to be most controversial is those people who are/were IV drug abusers and also had a blood transfusion at some time. They are unable to get a Doctor to say that it is likely they received the virus from the NHS blood, which is correct imho. Some see this as being penalized for their honesty which I find incredible, they are being “penalized” for injecting illegal drugs, I would be unhappy if such appeals were allowed.

Visit the group and make up your own mind.

BANG, BANG, BANG!

Lets just recap. Meeting went well with my consultant, he went through all the options, 4 in total which was more than I thought there was but then again 2 involved quitting treatment I pushed for a switch in Interferon from PEGASYS (peginterferon alfa-2a) to PEG-INTRON (peginterferon alfa-2b), he said it wouldn’t make any difference, I agreed. The upshot of this was that I switched to PEG-INTRON, with his agreement of course. Again just to reiterate, very good meeting, relaxed, options explained carefully but most of all the feeling that, maybe especially with this type of treatment, it is very much patient led. I feel in my heart that if I had skipped a beat or blinked when he looked into the whites of my eyes I would have been off treatment. I’m not saying that they are looking for excuses to get me off treatment by any means but rather that the medical case for continuing becomes less tenable as each detectable PCR passes, they have to be convinced that there are physiological benefits for me continuing. That was really the main point of the meeting from my angle, to reinforce to the Doctor that when I say I am going to do something I do it, no excuses, no quitting, no backing down. Its important to me that we set that “Golden Rule” because lets be frank, the way things are going it looks like I will be seeing him quite a lot of him over the next few years.

Last week was the first of the new injections and well it was like starting all over again but much much worse. Felt better as the week has progressed and hopefully it will just be a case of getting used to the new drug and things will improve. To be honest it was the plan, I was hoping the switch would prompt something of a response and that it certainly did!

On the good news side my viral load came through at less than 615 copies, that is huge news for me and hopefully this new regime will force it down to undetectable.

I have a million and one other things to write about but to be frank haven’t got the time, you wouldn’t have the time to read it either

Your inspiration this week is……

You never win a game unless you beat the guy in front of you. The score on the board doesn’t mean a thing. That’s for the fans. You’ve got to win the war with the man in front of you. You’ve got to get your man.

- Vince Lombardi

Interesting discussion at Ron’s forum regarding the safety of alcohol when you have hep c. Of note largely because of Nick’s comment which, for me at least, really nails the issue.

the only thing worse than not having a drink is having to stop after one!!

Source

Another good week under the belt…

Same old same old, getting a bit boring really. Apart from one bad day had a great week, working, training and everything else all been spot on. Its all part of my new improved plan I think. The temptation on treatment is to concentrate on just getting through, that doesn’t appeal to my tendency towards the obsessive. What I’m looking to do is to come through treatment with flying colours, fitter, faster and stronger than I was before, thats an aim I can get motivated for.

Still waiting for my actual viral load numbers from 4 weeks ago, which I have to be honest about makes me very, very angry. It doesn’t help that I have a meeting with my consultant on Monday to discuss treatment options, a major part of that would be my current viral load. Somebody [that somebody would be me] took their eye of the ball and allowed this situation to develop, it will stop right here though.

Spoke to my back-up nurse today, regular nurse is off, who intimated that my consultant was “uming and ahhing” a bit about my treatment direction. Now its probably nothing but misinterpretation but has made me focus on Mondays meeting, a weekend of work and research lies ahead. Remember, train hard fight easy not the other way round and if you hear the fat lady start to warm up….smack her straight in the mouth.

This weeks inspiration, should you choose to accept it…

“In regard to self-discipline you need to be your own tyrant”

- forgot

BTW Remembered my sisters Birthday this week, first time in 40 years!

Keep the faith, kill the virus.

Yes, sort of……..

The doctor has every single confidence in the world that this is EXACTLY HOW I CONTRACTED HCV.

I have had this disease for approximately 25 years. In the 80s I NEVER used a needle. I was a “rock star” (in my mind I guess) and we NEVER ran out of coke - when we did lovely “fans” gave us more more more to try and get close to us. I did a LOT and had a habit for at least 20 years.

The doctor fully believes that it is EASY for one person to use a straw..have microdroplets of blood (you know people who do coke have DREADFUL noses and just because you can’t SEE the blood sure doesn’t mean it’s not there) and then hand off to the next person who snorts not only the coke BUT the HCV as well. Since your nose is such a lovely moist warm bloodfilled place it’s quite SIMPLE to transfer it that way.

Quote is from nygirl, seems she knows her way around cocaine so I would take note.

http://www.medhelp.org/forums/hepatitis/messages/40432.html

Then of course we have Daniella Westbrook, you could catch a basketball in that nose never mind Hep C.

Riba rash is little tiny bumps that start out very very small and then begin to itch as if you have chickenpox. in fact that is what I think of them as. If you itch them alot they can get infected and then scar. Yuck that is what happened to me.

I found that using a GOOD moisturizer (such an Gold Bond Extra Strength Tiple Action Relief for Dry & Itchy Skin in the green bottle with a red top) has worked WONDERS. But you must realize the most important thing is to moisturize CONSTANTLY = when your body is covered constantly with moisturizer it seems to kill off the rash. Doing it once won’t work.

medhelp.org

Thats good news it seems, “riba rash” is a fairly frequent side effect and the Gold Bond Extra Strength Triple Action, green bottle with red cap has an almost iconic status within the Hep C treatment community as a solution. The bad news is that it doesn’t seem to be generally available here in the UK.

And remember, on treatment just moisturise the skin you want to keep

Its a strange, strange, game….

Maybe this treatment just agrees with me, who knows, but the trend of feeling ever stronger continues as we hit week 27. I put a respectable 40+ hours on the work clock last week with maybe another 10 or so to follow over this weekend. I feel much better for it, must be the old working class work ethic , and apart from the odd night or two am sleeping well…at last!

Only negative I can think of this last week was all my fault. I am at an age where I know myself well enough by now, I know what situations to avoid and…well..avoid them. This week however I made a series of 2 fatal mistakes. Firstly I decided to take Miss HepCBoy Jr to a children’s “play” area. Don’t get me wrong I like children however 100’s of them in a confined space, running and screaming and on the day after injection is not for me. I got through it…just…but then made fatal mistake number 2.

Pay attention, write this down, it will stand you in good stead for life.

Don’t ever go to Asda. Its like entering the set of Night of the Living Dead, the stench of despair hangs over the place in a thick black cloud. I hate the place, hate everybody who works there and hate everybody who shops there. If, to get through an experience, you have to softly repeat a mantra of “calm, calm, calm” over and over again you are in the wrong place. I almost lost the will to live. NEVER AGAIN.

So apart from that everything is good, almost cool.

This weeks inspiration. should you choose to accept it…..

When I dare to be powerful, to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.

- Audre Lorde

BTW in an attempt to stem the flow of emails requesting pictures of your favorite Hep C Blogger here is a snap from last week, told you I was getting stronger.

Great post over at Janis & Friends, all you need to know about Interferon and trust me in the Hep C game you need to know about Interferon.

What is Interferon?

Interferons (IFNs) are natural proteins produced by the cells of the immune systems in response to viruses, bacteria, parasites and tumor cells.

Interferon is produced and released by cells infected with viruses. The interferon molecules move to nearby cells and binds to receptors on the surface of cells.

This decreases the ability of viruses to enter cells and reproduce within them.

Read the rest at Janis & Friends

Look at it as two for the price of one….

We have good, bad, good and bad news to report.

On the good side I must admit I feel *very* well. Strong in body and strong in mind. I would go as far to say that during the day I’m as near “normal” as I have ever been, I just get “pinched” with tiredness particularly in the morning on waking and then again at evening. In effect I’m as productive as ever but just for a shorter time, if that makes sense.

On the bad news side my 24 week PCR test came back as detectable, which to be honest wasn’t in any way a surprise. Due to a slight breakdown in communication they didn’t run a PCR for the actual viral load numbers, I should have those in a couple of weeks and from there can make a judgment as to how to move forward. Unless we see a dramatic drop in viral load, got to be 90% plus then it looks like a switch to Pegintron and see if that works. The evidence is slim that this is an effective strategy and to be honest I don’t think it will make any difference to the outcome, its just that I want to have a second push and get “in amongst” the virus and start cracking heads. Don’t get me wrong winning is important, after all why bother to keep scores if its not, but the second best thing to winning is fighting and losing and for me at least that would be an acceptable worst case scenario.

Back on the good side my Sister is safely buried, nice to have that behind you rather than in front.

The last piece of bad news is that we have another deader I’m afraid. A young man just 20, used to work for me as a young boy on a Saturday some years ago, stabbed to death. His Uncle, a very close friend of mine, had worked very hard on trying to alter the outcome of the young boys life but with no happy ending I’m afraid. Still thats life, but 20….. thats just too young, much too young.

So to sum up….apart from people dropping dead all around me [remember it comes in 3's so lets be careful out there] life is very good. I’m slacking a bit in the viral killing department but maybe that will change, regardless I’m doing my 48 weeks anyway…minimum.

This weeks inspiration, should you choose to accept it…….

Nothing in the world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education alone will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan “press on” has solved and always will solve the problems of the human race.

- Calvin Coolidge

And with that its time for me to press on.

Oh and BTW no sartorial tips this week but I have been on somewhat of a buying spree of late so if you need advice on what suit, coat or shirt to buy, what watch, what laptop, what navigation system or even shoe storage just leave a comment….I’m your man

BTW, BTW, keep the faith, kill the virus.

Over at Ron Metcalfe’s forum member surf_2000 is very kindly detailing what happens when you do 43 weeks of pegulated interferon and find it is not working. In surf’s case you just switch on the fly to *daily* infergen injections, that my friends means that our surf is one determined and tough individual.

Read all about it, the highs, the lows and hopefully a happy ending.