A compilation of the good, the bad and the ugly from around the Hepatitis C online forum world. Hopefully you will find the postings as interesting as I do.

Watch this space

…. which would bring it to market earlier. Great news if it works, lets wait and see the SVR figures before we get too excited though.

Wall Street analysts still have high hopes for VX-950, a developmental-stage treatment for hepatitis C. Sales of VX-950 are expected to peak at $1.4 billion in 2011, according to McDonald.

The analyst said VX-950 has a chance of receiving regulatory approval earlier than expected if results of two upcoming mid-stage trials prove the drug’s efficacy, which would allow the company to circumvent a large-scale Phase III trial.

“This would give VX-950 a one-year advantage over the competition and the ability to reach a forecast $1.7 billion of sales by 2011,”

Source

Simple question but some people see confusion in the answers, lets dumb it down and clear it all up.

Is Hepatitis C a Sexually Transmitted Disease (STD)?

No. Hepatitis C is not primarily or frequently transmitted via sexual intercourse or other intimate sexual contact.

Can I catch Hepatitis C as a result of sexual intercourse or other intimate sexual contact

Yes. Hepatitis C is a blood borne virus, it requires somebody’s infected to blood to be “forced” into your body. Situations such as this occur more frequently during sex than at “normal” times.

See, told you it was straightforward

That somebody is me!

That is my lowest ever recorded level after being stuck stubbornly in the 70/80’s for the duration of treatment. Although it doesn’t really mean that much from a medical perspective, the levels can bounce around somewhat on treatment, I’m going to take it as good news.

ALT, an enzyme appears in liver cells, with lesser amounts in the kidneys, heart, and skeletal muscles, and is a relatively specific indicator of acute liver cell damage. When such damage occurs, ALT is released from the liver cells into the bloodstream.

Source

Mouth guard in, biting down, round 2, lets go!

Fight one more round. When your arms are so tired that you can hardly lift your hands to come on guard, fight one more round. When your nose is bleeding and your eyes are black and you are so tired that you wish your opponent would crack you one on the jaw and put you to sleep, fight one more round - remembering that the man who always fights one more round is never whipped.

- James Corbett

Good news and bad news….

On the good news front had a great start to the week after a good weekend. Strange as it may seem I have started to look forward to injection days [Friday in my case], I actually feel better afterwards! Earlier in treatment I felt better the further away from injection day I got, that seems to have switched round a few weeks ago. Sounds strange to me, not really sure whats going on but there you have it. Worked everyday and enjoyed it too, been launching some new product ranges which is always nice.

On the bad news side things took somewhat of a downturn Thursday night. After a busy day, [started working at 7.30am, then went into the office, then went up to biz partners home and did some more] I got home pretty exhausted. As I have said before if you aren’t exhausted after a good days work then….you ain’t working hard enough. Things then took a turn for the worse as a call came in to summon me to hospital, my Sister was in there and the word was she wasn’t coming back out.

I won’t bore you with the details but thankfully she passed not long over 24 hours later. If you are gonna go it might as well be as quick and as painlessly as possible.

Normally 40 is really no age to die but things are a little different in my Sister’s case. She was born , what was called back in the day, severely mentally and physically handicapped and to be frank its nothing short of remarkably that she made it this far. Time just caught up with her and no doubt the decades of drugs needed to manage her various conditions wore her body out. I feel it is only right to point out the remarkable level of care she, and we as a family, have received from the NHS over the last 40 years. Remember we started this journey in the mid 60’s, the improvements in care over the years has been huge, driven by many committed professionals and to be frank a budget running into many millions of £’s. Thank you to everybody who played a part in that and not forgetting the backbone of the NHS, the taxpayers.

In a strange way my Hep C made things a little easier to cope with, at least I had something else to focus on making sure I kept to my Ribavirin schedule, although what bystanders must have thought as the wifes car pulled up passing me 3 little pink pills and a drink I’ll never know! Managed to squeeze my injection in right on shedule too. Still you get through it, thats just what you do, but a little gritting of the teeth was required this time. Maybe too much as I have worn a groove in one front tooth and somehow managed to push the other one about 1/4″ up into my gum, oh well.

On the good news side I bumped into my Consultant on the ward, had a quick stop and chat. Good news in two ways, firstly it was 5.30pm on a Friday nice to see the man still on the case at that time, shows commitment. Secondly, and this may just be me, I like my Consultant to look like a Consultant and a quality black pin stripe suit, crisp white shirt and a rather nice red silk tie does the trick for me. If I had my way I’d switch a year of medical training on to matters sartorial, train those Doctors to look like a Doctor should, a style placebo effect

A busy week for me next week, obviously, with a 24 week PCR on Monday to see how the virus slaying game is progressing. As I enter the second lap of treatment its important to press on and step up a level, like a race when the final lap bell rings you have to raise your game, dig in and at least stay in contention. My devastating speed and awesome strength off the final bend will see me through to the finishing line but for now its time to dig in and press on.

As a special treat this weeks inspiration, should you choose to accept it, comes in video form. I won’t spoil it for you but if you watch it I guarantee it will bring a smile to your face and warmth to your heart and maybe a little tear to your eye. If you only do one thing this week make sure you click this link.

Keep the faith, kill the virus and if you get the chance say a little prayer for Mandy.

To cut a very long story short they are looking at making treatment part of the guidelines for everybody who has Hepatitis C, not just those with moderate or severe liver damage. I’m not convinced that is a good idea myself but some may consider it good news. On the bad news side nothing, zilch, zero is on offer for those who have not responded to previous peg combo treatment.

Read the rest of this entry »

Not all of them obviously….

Drug addicts do get somewhat of a bad rep within the NHS, mostly for good reason. The same goes within the Hep C treatment world, current users make very bad patients [we are taking the street drug addict in the main], they rarely follow up initial diagnosis and rarely complete the course of treatment. No point throwing good money after bad is the thinking and to be frank I find it hard to make a case against that. Let Chuck Darwin sort it out.

Ex-addicts also get a bad rep, again mostly justified if truth be told but in this case there are some diamonds in the rough. Ex-drug addicts can make very good patients indeed.

Here’s why…..

Hepatitis C treatment is not a trivial undertaking, those who successfully complete the course, regardless of outcome are to be treasured. Over 40% of people offered treatment [PDF] don’t complete the course or never even start never mind finish. The game is all about desire, its all about working single mindedly towards a goal, often at the exclusion of all other unrelated things.

Imagine a drug addict, no home, no car, no family, no money, poor health….yet day after day for years and years they manage to acquire very expensive street drugs. That shows the power of the single minded pursuit of a goal, thats something that puts you at a definite advantage in the hep c treatment game.

Now most of you reading will already know this, after all here in the UK I think its fairly well accepted that about 80% of people have hep c as a result of drug abuse. For the other 10% ish who acquired it through pre-1990’s blood products or transfusions you may have learnt enough about the value of working towards a goal, after all you are still here. Its the other 10% that concern me.

Maybe, just maybe, you could learn something from the passion, the determination, the never give in modus operandi of the drug addict?

sin·gle-mind·ed
adj.

1. Having one overriding purpose or goal.
2. Steadfast; resolute.

sin’gle-mind’ed·ly adv.

Not a great week to be honest, felt pretty tired all the time more so than usual and unfortunately work was the first thing to give, which isn’t really fair.

Putting work to one side it wasn’t a bad week, did some shopping and scooped up a few nice items amongst them an organiser and folio [ The Bridge, obviously], and then a nice fountain pen with a retractable nib. You may not learn much about Hep C here but you may pick up a few style tips

Maybe its the time of year but there seems to have been somewhat of an outbreak of “bitter regrets” amongst the Hep C forums and blogs. Usually I have a less than zero tolerance for whining but in the spirit of open mindedness decided to take a quick look back over the last 20 odd years and see if I had any “bitter regrets”.

I found one….

About two weeks ago I went for a spot of lunch with my business partner and our tax accountant, local food pub which is part of a chain but they pretend its not. Usually not a bad place, ideal really for a casual business lunch. So the round goes in, my partner gets a lager shandy, tax guy asks for a Guinness but they have run out, fair enough I thought, after all its not for me. I asked for a sparkling water, out of stock, OK then just a still water…out of stock. Here comes the bitter regret, I just stood there like a startled rabbit mumbling something along the lines of “are you serious”. What I should have done is asked for the manager or ess and proceeded to rag doll them round the bar for 20 minutes. Just to be clear if it would have been an ess I wouldn’t have hit her, after all you should never hit a women, I do however reserve the right to shake the shit out of them.

If only you could live your life all over again, but you can’t. I have thought about professional counseling but have decided to take responsibility myself and have vowed never to make the same mistake again. So if you are a landlord or landlady do yourself a favour, go check your stocks of water products. If you do run out of stock and see a boy [immaculately dressed, devastatingly handsome, twinkle in his eye] shoving a months supply of Ribavirin and 4 syringes up his anus [one has been a guest of Her Majesty previously, obviously], then something bad is just about to happen. Then you will have a bitter regret but this time I won’t.

With that out the way the 24 week PCR test looms a little closer and that does prey on my mind a little to be honest. I can totally understand why some Doctors are loath to do “unauthorised” tests, for many people the fewer the tests the less the stress. If it isn’t something that will alter the course of treatment I think its best, on balance, to try and avoid the PCR tests.

To end on a more positive note had an enjoyable “night out” with an old friend, nice Japanese restaurant and home to bed early is what passes for a “night out” nowadays. Had a good long chat, mainly listening as he has been over in China exploring business oppertuinties and to be frank thats been far more interesting than my last few months. Interestingly the subject of my health never came up, I know he knows and he knows that I know he knows, maybe in these cases its the responsibility of the sickie to bring the subject up. After all if we really want to raise awareness of hep c the first step has to be made by us, right?

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

If you’re going through hell, keep going.

- Winston Churchill:

Keep the faith, kill the virus and keep water product stocks high!

You get a lot of invites to pity parties in the hep c game, some even come from yourself. My policy is to turn all such invites down, after all there are many, many people worse off than yourself.

A case in point was this morning. I had to be up early doors to go into work, I feel pretty rough in the am like the morning after the night before. Whilst my mind drifted towards self pity I caught sight of the postman struggling up the path [steep and long] burdened by two huge sacks of mail. Life could be worse I thought.

After he dropped the bags off I watched the wife as she opened the many hundreds of envelopes, a tear forming in her eye as she realised not a single Valentines card was for her. Life could be worse I thought.

Now don’t get me wrong I’m not perfect, my modesty is the flaw that means I fall short of perfection, and its not easy being me, but…..life could be worse.

What a great week!

Felt good all week, been working everyday and just generally feeling fit and well. Exhausted now [Friday 7pm] but to be frank if you have been at work all week and aren’t exhausted Friday then you ain’t working hard enough

Now a confession…I forgot my Ribavirin dose on Monday morning, didn’t remember until late afternoon. That my friends is unacceptable but that said it did give me an insight. I have always felt the Ribavirin, can feel it coming on within 30 minutes after taking it, can feel my brow furrowing, my eyebrows drooping and my face frowning. Its like something is pulling your face down or for those unable to imagine that take a look at your face the next time you are having a good shit [get the wife to hold the mirror if you have too]. So there I am happy as Larry telling the wife I can’t remember feeling this strong, was even doing bodybuilding poses in the living room. Thats what a few hours missed Ribavirin does for me. From that I have learnt to be extra vigilant and to guard against forgetting again but mainly that, in my case for sure, its important to take the Ribavirin 12 hours apart. Gotta keep the magic juice flowing at a constant rate.

So another week has ended and another one begins, current score is Hep C Boy 22 - 0 Hep C Virus.

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

Who said you have the right to give up?

Forgot

Now off to beat the kids after reading some tips [rude word warning] from my new spiritual guru….keep the faith.