Why is the media failing Hepatitis C

11.11.11                                                 

It's funny how things happen, the other night I was surfing around twitter whilst posting the odd tweet. The annual meeting of the AASLD ( American Association for the Study of Liver Decease ) is in session, it's the night of the 8th Nov & the latest news flash from them is posted... Deaths related to Hepatitis C "significantly " outnumbered those of HIV !

Now this is something that doesn't surprise me as we know the worst of HCV is yet to come but it struck a cord with me & so I set to work posting & re tweeting everything I could find on this.  I also started sifting through the tweets of major news corporations health arms to see if they had picked up on this little gem of controversy & hysteria, feeling sure they would have I was shocked to see not only had they missed this nugget but on closer inspection it began to dawn on me that they had nothing on HCV in some cases for Nov & a couple at best from another. I found a poor 4 tweets from 6 prominent corporations during NOV.

 So the penny had dropped, the major news networks are paying little attention to Hepatitis C, I noticed that HIV didn't do that much better. I don't expect HCV to have a monopoly in the news, they seem to spread their health news thinly & evenly, I do expect health issues in crisis to get much higher rate of discussion & they usually do flu pandemics & so on but to me that's where they're missing the point. HCV can't be pinned down like AIDs can, if we played top trumps with these deceases, we'd understand just how sinister & elegant HCV truly is...

HIV & HCV are both blood born virus.They are both terminal. HCV lives longer outside the body than HIV.

It is the later fact that makes this so deadly as we now begin to discover all the avenues HCV uses to infect innocent people around the world every day, in tattoo parlours, in barber shops by scissors & clippers, in nail salons by tweezers & poorly cleaned equipment ( household bleach kills HCV ), in hospitals & dentists during blood transfusions & once again poor hygiene around equipment & last but not least around the home from toothbrushes, razors, tweezers, clippers & scissors, son & wife uses fathers razor sister uses sisters razor, brother uses brothers razor even a guest may use a razor or a toothbrush & so on.
Not to mention the obvious ways we take for granted of sex & drug use through needles & snorting tubes that are shared.

Take all that then add the factor of stealth ( HCV can lay dormant, it's symptoms can remain undetected for as many as 30 years) & apply the factor of stealth that to the number of avenues of infection & the combinations of friends & family transmission & you come up with a medical nightmare of untold proportions gaining momentum daily, a crisis that has been forecast for some time is the one of decompensated liver decease, as I said undetected for 30 years so in many cases the first time they discover a problem is when it's in what's termed as" end-stage liver decease " were the liver has swollen so much & may even be beginning to fail & as the mid sixties is noted as a boom time for HCV growth, then it's now we will start seeing these cases of end stage coming home to roost, placing a massive demand on an already over stretched organ donation framework, combined with a factor of young people wrecking their livers by binge drinking cheap & counterfiet booze, making for an almost impossible scenario.

SO WHY DO THE MEDIA IGNORE WHAT IS STARING THEM IN THE FACE... NEWS THAT IS VITAL FOR THE GOOD OF THE PEOPLE.

Stand Together for Hepatitis C

We must start to lobby the press & all media giants CBS news has almost two million followers, until we understand the reasons why they choose to leave such issues. Whether it has something to do with the stock market values of these illnesses. The share value for major companies producing medicines in demand must be worth a fortune, I don't know, all I do know is it's under reported & we must try & make a difference. New inforamtion has come to light since I first wrote this post which seems to point out my suspisions...

EASL Gives Wall Street's Privileged Investors Sneaky Preview to Key Hep C Data

 …if you want an advance look at potentially market-moving hepatitis C drug data, you’ll have to be an EASL member or a registered attendee of the EASL meeting — a group which includes hedge fund and mutual fund portfolio managers and sell-side analysts, all of whom can pay for early access.
EASL plans to selectively distribute hepatitis C drug research abstracts to these folks on Thursday. The same documents will not be made available to the public. That means a select group of  investors will have access to potentially stock-moving clinical data while a majority of investors will be kept in the dark.
Journalists registered to cover the EASL meeting will also be granted early access to hepatitis C research abstracts but they are barred by EASL’s restrictive embargo rules from writing about any new data until the start of the April meeting... Hmm

                                                                                                                              Adam Feuerstein

Social media is now being recognised in many aspects of data gathering as a valuable tool & it is surely a force for change as the middle east has shown. So let's re-tweet the media when they post on HCV & hound them when they don't, write emails to editors like the guy in shawshank redemption, if you get a reply start writing two a week. The social media network is the perfect tool to put disgust, disagreement & dispute down on any organisation as a soldier puts rounds down on an enemy target. This may not be war but it will be a fight & we must fight together, it is the only way forward.


Peace.

Peter Rabbit

Onwards & Upwards !

It's almost 12 months since treatments end, treatment that saw me complete a victory over hepatitis c, sadly my high was followed by a low that served to bring me to my knees, completely overwhelmed by depression that came out of nowhere.

After a series of blood tests, it appears that a low testosterone count could well be to blame or at least a large factor in this period of depression. Now I am ready to start over & reddress the balance through a strict regime of exercise & diet, nothing new there then, exercise & diet have been the cornerstone of my hep c treatment protocol for the past four years.

So I have come up with a way to help Hepatitis C awareness & my current health issues together, it takes the form of http://www.thethreepeakschallenges.com/ The Yorkshire three peaks challenge. I would welcome anyone who would like to attempt this challenge as well, but please remember that this is a difficult undertaking that requires a high level of fitness. You can email me at 1.alpharabbit@googlemail.com I would also appreciate very much any advice from people who have done this challenge or anyone who could offer help with logistics. I look forward to writing & recording this adventure & moreover enjoying, experiencing & completing it.

As my training moves on & the challenge draws near I will be posting a link to " Just Giving " so people can donate, directly to the hep c trust.


Peace.

9 months post tx

My writing has taken a back seat to depression since treatment's end, as mentioned in a previous post, the " undetected " result found me floundering, unable to find a focus point, now that the enemy was well & truly vanquished. Then came the decision to reduce my Valium, it seemed like a good idea at the time,  thinking I may as well kill two birds with one stone ie, if Valium can't lift my mood then I'll leave it out for good ! turning a negative into a positive, as is my way. This act sent me spiraling headlong into " depression," for the first time I can remember, in that no matter what I did my spirit spiraled down & down to the point of despair. For the first time in my life I truly understood how terrible the state of depression is. The feeling of pure & utter hopelessness, of being trapped in the darkest of places & that it will never end...

Today is the first day that upon waking I lay there & thought positive thoughts, a pro- active positivity that in turn kick-stars my mind to churn out the ideas one after the other, ideas that have legs, that need ignition so here I am giving life to the new wave of  new life...  let's hope this moment lasts forever. Yes, with the good comes the bad, the trick is to hang in there & never give in. Treatment for hepatitis c has been a very long hard road that is still unwinding before me, pulling in every direction in every which way, all I know is that  now I'm back in the right place... the driving seat. 

Onward & upward,

Peace out,

Rabbit.       

Life after beating hep c.

A month has passed since receiving the news I had for so long dreamed of hearing, " the hepatitis c virus is no longer detected in your blood ."

Fact is I have been quite low since that day & this has no doubt affected my son as well, thankfully I was given a print out of my blood test, otherwise he may have wondered if it had indeed been a success, given my low moods. My spirit is slowly rising, it seems there is so much to take in, first of all there is a big hole where the cause of fighting hep c, (which took every waking thought & action ) used to be. Starting to rebuild a life, where  before just maintaining ones self was the only aim, now having as brighter future as most other people take for granted.

Jnr drawn in Paris

This is the point where I shake off the sombre past & realise just what I, WE, have achieved & that now what is needed is to applie the dedication devoted to the exorcism of HCV from body & now soul, to making a secure future for the two of us. I should mention that my son Peter has cerebal palsy, a fact I have not mentioned before, only because we are normal decent people & don't want or seek sympathy from any quarter. Though now those of you who have followed our story, will understand the true depth of meaning to the phrase " I am so proud of my son ."

My son has been at my side all the way through, fed me shopped for us whilst holding down his university education, it is thanks to him that my punctuation is much better ( I left school at 14 ), something he has taught me, as an English student himself. Now he has his father on the mend & together we face a brighter future. He is now a very good cook, something that stands him in good stead with his contempories, on study evenings they peel chop & wash up, whilst he works his magic in the kitchen, they save a few quid & enjoy a good meal in return. We are on the up, lord knows we deserve it, nothing is said, we rub along quietly both taking care of our chores, but we know we're on the up, as I sit & type I can hear his TV in his room, it is so quiet where we live, peaceful.

We have been invited to our friends villa in Cyprus & as soon as my passport arrives I will make the arrangements. Since I began treatment in January 08 I have lost 6 friends to cancer 3 to liver cancer, those are just the people I've heard about.

All our futures are uncertian to a point, my dear friend Alan reached that point, where his future was very certian, he was given 3 months to live, it was near enough.

I wrote a tribute to him on this site, king of the one-liners.

I often think of him, I hoped he was doing all he could for me from the other side, I think of him being happy that at least one of us beat hep c.  His last words to me were, You have yourself a good life & remember to have some fun... I intend to take his advice

Peace to all,

Rabbit  .

A FINAL HIT

You out Sucka !

A week ago today I returned to my local hepatitis clinic to receive my treatment result, the final blood test result taken 6 months post tx, the Polymese chain reaction test commonly known as the PCR.

Rather than go into some long winded description of my emotions building up to that afternoon what I will say is, yes I was about as emotionally taught as one could ever be. The day was a carbon copy of the day just over two years earlier on which I had completed the same journey to the clinic, blue skys all day. Then to be told my final PCR test. That day it came back ' virus still detected.

This time I arrived sat down & immediately my name was called, I followed the doctor back into her desk, sat down & placed my ipod into my bag which I placed between my feet as I raised my head up to steal myself for the worst, her big beaming smile said it all, she was holding out a sheet of A4 announcing " you will want to read this, I had it printed out for you, " 

                   
                  CONFIDENTIAL RESULT

Reported                   Speciality      Location        Clinician               Status

22 Mar 2011 10:46 Virology/Serology    xxx           xxxxx (MWM)         F


Order Comment:
Sustained virological response  (SVR) .

Sample Ns 298566R (SERUM) Collected 14 Mar 2011 15:10  Received 14 Mar 2011 17:12
Hepatitis C PCR
    Hep C RNA                                      Not detected
    HCV Quantification Number               0
    HCV Quantification Log                     0
    HCV  PCR Lower detection Limit      15.00                 IU/ml


                                                              End of report

I sat & gazed at the page not trying to read it I knew very well it contained the news I had so long waited to hear.

So there it is my battle with hepatitis c is over, now I find a giant hole in my life, all of a sudden the very thing that has been driving me along, the enemy I have fought in so many ways, using every ounce of energy & every waking thought to achieve this one aim, that focus is gone & believe it or not I'm finding it hard to take in. No jumping for joy no wild celebrations, just still in the same routine eating, resting, walking & sleeping, only now the phantom aches of the phcycologic variety are all but gone & a sense of inner peace has descended.

Twenty five or more years ago I made a big mistake & since my HCV was detected & explained to me 14 years ago I've been paying for that schoolboy error. Not even expecting to be rid of it for 10 years. 4 years ago treatment became a reality, after mother passed away & I grasped it with my heart & soul... I stood on the edge of the abyss, lost & now found. The future is unsure ( but who's is ?) of that we can all be sure...


Now life really begins... One day at a time.

I dedicate this blog to the memory of my Mother Mary and My old Doctor who threw me a lifeline, then got me to treatment, Annabelle M.

I also wish to thank all who work in hepatitis clinics up & down the country, without you we have nothing.

Peace.                   

Just Another Pin-Prick

TREATMENT COMPLETE

Today is Wednesday 16th March, on Monday the 14th I attended my local hep c clinic for the penultimate time in this latest term of treatment. There to give my final blood test, only this time there's no LFT & so on, just one vile with a tablespoon of blood within is required but to me it is the most important drop of blood ever shed, for within it lies the answer to whether the virus has been purged or if it still remains.

Within this blog is the story of my up's & downs, how I first found I had contracted the hep c virus & that I have could have carried it for some 25 years. For twenty years I never dreamed that a treatment would come along & like so many others, learned to live with it, coming to terms with it yet some times being drawn down into the murky depressive depths giving little thought to any possible future of happiness of my own, never mind one with a partner, preferring to avoid entertaining thoughts of relationships that appealed greatly & maintain a course that was governed by events around me rather than choices made.

So here I am, 6 months post treatment, a treatment that lasted 50 weeks, basically 18 months since the start, fortunate to be virtually virus undetected at 4 weeks with a count of 43 then virus undetected at 8 weeks and it stayed undetected right through treatment to the end. The big question now being has my body been able to fight the virus on it's own without the aid of Ribavirin & Viraferon and maintain what is known as a Sustained Viral Response or SVR & that is indicated by the blood test I now write about, called a Polymerase Chain Reaction or PCR test.

They say time flies when your having fun, well it wasn't fun but time has certainly passed quicker than during the previous 6 months treatment period, yes the 12 months of treatment flew by, apart from the last month or so, it seems when a target is within reach it suddenly  slows down to a nail biting snails pace. That last month of agonising wait is pure child's play when it comes down to the months leading up to treatments result. Whilst I find myself recovering physically very well & all my other tests i.e; metabolic bone scan, abdominal ultrasound scan & all other bloods came back as normal, apart from my thyroid levels which were out of whack at tx end but now returned to normal, the thought of treatments success has played havoc with my mind.

The liver like the brain does not feel pain, that is to say when we think we can feel pain in either organ in fact we can not, any pain we feel comes from the surrounding areas due to different causes, yet I & am sure many others experience phantom pain the conjures up the worst imagery.

Fact is what's done is done & this particular story of treatment is nearly over, I thought about keeping a lid on my situation so should tx fail I could get my head around it & announce the result when ready, but blog or no blog doesn't change my course. I have laid my thoughts & experiences out before all of those who have read & I feel I owe it to myself to maintain this process to the very last.

In the UK it takes two weeks to get the result of a PCR test, I 'll post a result blog around that time so for now... that's all folk's !

Peace,

Peter.  

ATTENTION !!! Infected pre-injection Swabs !

Done or doing treatment since 07, then you must read this letter...

Just received the letter posted here, from Merck Sharp & Dohme (MSD) registered in the UK.
I called my local hospital pharmacy, which dispensed my ViraferonPeg prefilled pens,( IntronA is also mentioned ), which include two alcohol swabs in each box, ( have also included a photo of a swab from such a box ). The hospital pharmacy informed me that the problem  regarding swabs  that " potentially " contaminated microbial organisms, as stated in the letter, goes back to early 2007. They suggested that any infection would have become apparent within 48 hours of infection & could manifest as a skin infection & a feeling of being unwell. The number to ring is Hertfordshire 01992 467272. They also suggest contacting your own clinic or Dr.

THE RECALL IS FOR SWABS MADE BY THE TRIAD GROUP. THE PAD I USED shows THE NAME... H&W gladbbeek (pictured above ). THEY ARE PART OF THE TRIAD GROUP & INCLUDED IN THE RECALL !

I am not trying to stir up this issue just make users aware. This is as much as I know & what the full implications are we must discover as individuals. There seems no need to worry if you haven't had such an infection, what I would say is those of us that suffered badly with ribo-rash could have had our symptoms aggravated by these swabs.

MEDICAL DEVICE ALERT !!!  READ LINK BELOW

Here is the link for the UK RECALL circular... http://ow.ly/41JBU 
The Hepatitis c trust have recently posted the above information on their home-page. The above link shows the full document sent out to all relevant medical organisations within the UK.


Parents Blame babys death on infected swabs... Link

THE ABOVE LINK SHOULD BE READ !!!




The Above Video Shows Some Safe Swabs. these are in the USA I guess The one I picture is confirmed as a Brand included the contaminated swabs Recall in the UK.




Take Care,

Peter.  

Twisting fate

More food for thought regarding my thoughts on issues surrounding transmission, safety & good practice. I recently read an article about a convict suing another for infecting him with hepatitis c during the course of a fist fight that occurred in jail. So all of a sudden we find another way the virus is moving around, suddenly anyone who has had a fight with an infected person & blood was spilled could now be another potential carrier, then apply the household transmission scenario & another potential disaster exists.

This is where I get to my first new issue regarding hepatitis c treatment & with-holding the truth about your HCV status to your family & close friends..." What goes around comes around "

Let's say you've had hep c for 10 years, could be 25-30 in some cases, but the later group generally have made close family & friends aware of their situation, if for no other reason than they didn't understand the severity of what HCV is & it's nature. You have a sisters & a brother, they have 5 kids between them, three uncles one aunt & so on.

So you've kept it a secret from all innocents around you, after all you don't want your parents thinking your capable of being a drug user, no you want to carry on living the lie, you want to sleep with & form partnerships with people just as you would have before becoming a living bio-hazard. So let's say you had 3 relationships, one child & stayed at your parents home for a total of 9 months  over the past 10 years. Maybe your total family were very lucky & only 3 have been infected, one of them is your child.

One day you visit your doctor & decide to attend your local hep c clinic, your good for treatment & circumstances within our current life-style allow you a 12 month window, just perfect to do tx & even better your tx is a 6 month one.

Now I could really draw this scenario out, but instead, let's just cut to the chase...

Treatment is over & your clear of the virus, your still clear at the post 6 month PCR & therefore in the eye's of the clinic " cured ."

Now think about this... All the people you have interacted with & could have potentially infected suddenly become your biggest threat. They'll continue to borrow your razor, your toothbrush, bleed around your environment & why should they give these act's a second thought, WHY, because you kept it a secret & never for one minuet thought of anyone other than yourself.

Well know you need to do some serious thinking & maybe you'll do the right thing. This is meant as a wake up call, not just for those with hep c but for anyone who lives, mixes or has lived or mixed with anyone who falls into the at " RISK " category