I was diagnosed HCV positive back in the early 90's there was no treatments on offer back then, after all it had only just been identified & named in 1989. After the odd visit to my local hospital 18 years little had changed regarding treatment but then in January 2008 one year after mother passed away I stood prepared for a relatively new treatment & so it began... With hindsight I can now say I was far from prepared, I sat back & left it to the clinic, thinking all I had to do was take the meds. what followed was a recipe for failure, literally... 12 months later the PCR test came back virus STILL detected !
So here's the thing, by leaving it to the clinic mistakes were made, that in turn would cause stress & with each further mistake moving deeper into treatment stress becomes an almost permanent fixture, the drugs can make you manic in varying degrees, you will more than likely find it hard to control your emotions, that is why I recommend stress management as a major weapon. I count stress management as the equivalent to another drug in the fight, to cut out stress is to give the drugs you take, the best chance to achieve full effectiveness.
How you go about stress management is up to you, my main points are as follows...
1, When dealing with doctors & staff separate your emotions, maybe your not happy with the way they handle you... I say in the scheme of things that is not important, they are there to guide you through a process pure & simple the finesse they display counts for 0. Use them to get the job done, this is about you & that virus, don't buy into he said she said. I did the 1st time & I failed treatment !
2, Keep on top of all appointments & tests if anything is unclear call them & ask questions. Keep or cancel all appointments it's the right thing to do, also, don't forget your conduct is being monitored throughout treatment, any inapropriate behavior will be noted & may count against you, don't forget you may fail & wish to do treatment again further down the line.
3, Home routine, the main area of stress management will be from day to day at home, I took extreme measures the 2nd time I did treatment & remember I beat it, so don't knock it.
a, First of all I sacked BT, put the car in the garage & got the bus, bought an answer machine & cut contact with all but a very few people. You have to remember your more than likely going to become very touchy & maybe even confrontational, it's better if you have as fewer triggers as possible, I sacked facebook & twitter there are many damaged souls crying out for attention as well as those out to confront, I became confrontational on Facebook the 1st treatment, I found it very stressful & so I quit my account before my 2nd attempt.
b, the car is another cause of stress, from breaking down to anger behind the wheel not to mention stress from paying out. All that is gone in a flash & is replaced with the much milder worry about how long you'll wait for the bus. I see so many trying to do treatment & working driving on facebook & so on. It's no good
4, Exercise, is also very important, very ! You must push yourself out the door & walk, it's a fine balance between doing too much or too little. i found the day after my jab I would overdo it then spend the next couple of days paying for it. I kept on top of that during my second shot at treatment & measured my day to day efforts.Just a good steady walk around the block is ok on bad days then increase the distance on better days.
5, Food & water, water is the easiest to deal with, keep a large glass or bottle by your side all day every day & drink often, I also drank a pint at bedtime & upon waking, they do this in the Paratroops, your body is over 80% water keep it topped up & flush those drugs out of your system, easy ! Food is not as simple, you appetite will suffer but you must eat when you take your tablets, in the morning i eat a yogurt & a banana, we made fresh soup also a big pot of food on the stove is a wonderful thing be it soup, stew or curry. i had trouble with sores in my mouth, i would make a drink of green tea with fresh slices of ginger & lemon with mint honey & ribena you don't have to include all mix & match these fresh ingredients to make a hot soothing drink, I would take the cold half of this drink to bed & sip throughout the night.
6, So remember this is probably the most important 6-12 months of your life, it's outcome vital to a brighter future, so don't leave it to pure chance, get pro active & make hard sacrifices in the short term it's inconvenient in the big picture your doing what has to be done, as far as work is concerned, I'd rather be unemployed & virus free, if your employer won't let you have time off, then they don't care for you. I know it's easy for me to say but I never expected to be free of HCV, but now I am & there is absolutely no doubt in my mind my 2nd course of treatment succeeded because I made big changes in the way I lived my life, changes that decreased my stress levels & so increased my immune system so when matched with the treatment drugs the hep c virus became completely overwhelmed & in turn led me to victory !!!
3 Peaks 4 HCV Route
The Road Route
I borrowed this map, we will travel the standard route but in reverse. Beginning at mount Snowdon here marked in red, then up to Scafell Pike & on to big bad Ben Nevis.
This challenge includes...
480 miles of driving.
22 miles of walking.
10,000 ft of ascent.
24+ hrs of Hell on Earth.
3 countries.
& 1 or 2 footsteps
Every journey begins with a single footstep
3 Peaks 4 HCV...
Given the nature of the 3 peaks challenge along with our respective health issues we aim to push ourselves but tailor the task to allow periods of recovery.
First of all, we will be doing it in reverse. The standard challenge route begins at Ben Nevis, ours will end with the biggest of the three mountains. We will begin at mount Snowdon between 2 & 4am this will give us ample time to reach Scafell Pike later in the day, then away to Ben Nevis where we will allow ourselves a period of sleep, this shouldn't be underestimated as cheating as the strain upon our reserves of energy will be just as demanding as they would without rest. I, for one, am not looking forward to picking myself up after my body has set like concrete with energy levels largely exhausted, being faced with the highest mountain in the whole of the United kingdom.
Mount Snowdon
We will form in the car park at the start of the miners track, this is the recognized start point. The walk to the summit is some 4 miles & should take 3-4 hours to for the round trip, obviously the decent times for the mountains is shorter than the ascent times.
Scafell Pike
We will start at Wasdale Head car park then follow the road to the footpath then on to the footbridge leading to Lingmell Gill. Bearing left uphill to the river crossing near Brown Tongue & on up to the summit of Scafell Pike, then return. This trip should take between 4.5 to 5 hours. I'm told Scafell Pike has the hardest terrain up top with the crossing of a boulder field, a factor that could lead to injury when tired. We aim to go & recce it before hand.
Ben Nevis
 |
| #RdToRecovery |
This challenge includes...
480 miles of driving.
22 miles of walking.
10,000 ft of ascent.
24+ hrs of Hell on Earth.
3 countries.
& 1 or 2 footsteps
Every journey begins with a single footstep
3 Peaks 4 HCV...
Given the nature of the 3 peaks challenge along with our respective health issues we aim to push ourselves but tailor the task to allow periods of recovery.
First of all, we will be doing it in reverse. The standard challenge route begins at Ben Nevis, ours will end with the biggest of the three mountains. We will begin at mount Snowdon between 2 & 4am this will give us ample time to reach Scafell Pike later in the day, then away to Ben Nevis where we will allow ourselves a period of sleep, this shouldn't be underestimated as cheating as the strain upon our reserves of energy will be just as demanding as they would without rest. I, for one, am not looking forward to picking myself up after my body has set like concrete with energy levels largely exhausted, being faced with the highest mountain in the whole of the United kingdom.
Mount Snowdon
 |
| Mount Snowdon is 1085 meters high |
We will form in the car park at the start of the miners track, this is the recognized start point. The walk to the summit is some 4 miles & should take 3-4 hours to for the round trip, obviously the decent times for the mountains is shorter than the ascent times.
Scafell Pike
 |
| Scaffel Pike is 978 meters high |
Ben Nevis
 |
| Ben Nevis is 3,344 meters high |
Our final ascent will begin at the visitors center, there is another start point at the youth hostel though it's neither here nor there, as both paths join up early on forming one single path first leading you to Lochan-Meall-an t-Siudhe the halfway point, then on to the summit, this path is known as the Pony Track, it is calculated at 10.5 miles there & back , holding the steepest ascent in the challenge.
The fact that we have given ourselves room to manouvre doesn't mean we are not pushing ourselves, it may be on the day we are able to push on & do the 24 hours but a sub 30 hours will do for me. Not bad for a year post 3 years solid of hepatitis c treatment & a lifetime of drug use.
It is never too late to turn your life around. I'm surely glad I gave it a go !
Ever donation is most welcome & gratefully received http://www.justgiving.com/peter-moore01
Onwards & Upwards...
Three Peaks for HCV awareness
2012 is Britain's Olympic year, as well as being the 100th anniversary of Scott's expedition to the Pole, it is also first year of my recovery post HCV treatment & the year in which I've chosen to take up the challenge of the Three Peaks, to reach the summits of mount Snowdon in Wales, Scafell pike in England & Ben Nevis in Scotland. Raising hepatitis c awareness & funds for the Hepatitis C Trust in London into the bargin.
In January 08 I began a 6 month course of treatment of Vireferon & Rebetol, it was a very difficult time for me & my son, who really stepped up to the plate & looked after me at my worst. 12 months later the following January 09, we received the news we were dreading... Virus still detected.
The following morning of the result I logged on to the web using my laptop & visited the Hepatitis C Trusts website for the first time, I emailed them & Catherine Corr replied 10 mins later, offering a chat, I called her & we talked it through. I didn't know it then but my comeback had already began.
Through the trusts website a world of information came into view, vital information that would help me rethink my situation & arm me with the knowledge to move forward. I set about getting fit, walking every other day & by October 09 I was ready & willing to do treatment again , only this time it would be for 12 months, my son felt he couldn't go through another 12 months & who could blame him. My mother, who had also brought him up, had passed away in January 07, so all in all it had been a bloody hard two years & now I was asking him to go through another 18 months of hell.
He stayed by my side & in October 2009 treatment began again, only this time I was very well prepared, putting into practice all I had read through the trust & other sites along side lessons learned from my first shot at treatment, & so another 18 months of treatment began...
In March 2011 we got the news we deserved... SVR, sustained viral response. Success !!!
Now in 2012 after a hell of a year post treatment with depression along with varying post recovery health issues I now feel ready to fight another battle. That of the three peaks challenge & so having linked with the Hepatitis c Trust, Hi we can help & Compass drug & alcohol York with others yet to confirm their backing.
I once tweeted... Hepatitis c now killing more people than HIV, shout it from the rooftops. Well I aim to do better than that on the 28th July world Hepatitis day, we will be shouting a number of fact based HCV related messages from the highest points up & down the country. full details will follow, we also want others to do likewise, by reaching the top of a peak in any country & help relay our messages around the world. We will beacons of hepatitis c awareness, using one of the oldest means of communication combined with the most modern, only our beacons will be facebook & twitter
I wish to put a request out for walkers wanting to take part ideally from various HCV & rehab related organisations
We are also looking for sponsorship, there will be plenty of media interest generated by the organisations involved & by the individuals & their related stories. Everyone involved gets a mention & their logos will be posted on the challenges website.
In my opinion actions speak louder than words, so please get involved & help us do some good.
Peter.
In January 08 I began a 6 month course of treatment of Vireferon & Rebetol, it was a very difficult time for me & my son, who really stepped up to the plate & looked after me at my worst. 12 months later the following January 09, we received the news we were dreading... Virus still detected.
The following morning of the result I logged on to the web using my laptop & visited the Hepatitis C Trusts website for the first time, I emailed them & Catherine Corr replied 10 mins later, offering a chat, I called her & we talked it through. I didn't know it then but my comeback had already began.
Through the trusts website a world of information came into view, vital information that would help me rethink my situation & arm me with the knowledge to move forward. I set about getting fit, walking every other day & by October 09 I was ready & willing to do treatment again , only this time it would be for 12 months, my son felt he couldn't go through another 12 months & who could blame him. My mother, who had also brought him up, had passed away in January 07, so all in all it had been a bloody hard two years & now I was asking him to go through another 18 months of hell.
He stayed by my side & in October 2009 treatment began again, only this time I was very well prepared, putting into practice all I had read through the trust & other sites along side lessons learned from my first shot at treatment, & so another 18 months of treatment began...
In March 2011 we got the news we deserved... SVR, sustained viral response. Success !!!
Now in 2012 after a hell of a year post treatment with depression along with varying post recovery health issues I now feel ready to fight another battle. That of the three peaks challenge & so having linked with the Hepatitis c Trust, Hi we can help & Compass drug & alcohol York with others yet to confirm their backing.
I once tweeted... Hepatitis c now killing more people than HIV, shout it from the rooftops. Well I aim to do better than that on the 28th July world Hepatitis day, we will be shouting a number of fact based HCV related messages from the highest points up & down the country. full details will follow, we also want others to do likewise, by reaching the top of a peak in any country & help relay our messages around the world. We will beacons of hepatitis c awareness, using one of the oldest means of communication combined with the most modern, only our beacons will be facebook & twitter
I wish to put a request out for walkers wanting to take part ideally from various HCV & rehab related organisations
We are also looking for sponsorship, there will be plenty of media interest generated by the organisations involved & by the individuals & their related stories. Everyone involved gets a mention & their logos will be posted on the challenges website.
In my opinion actions speak louder than words, so please get involved & help us do some good.
Peter.
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 !
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.
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
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
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.
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.
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