Get A Job – Get A Life! (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Hi Folks,

For what seems like forever, I have been saying “Once I’m better, I’ll be able to…”! What? Get back to normal? Carry on like nothing ever happened? Put it all behind me?

Well, the first two of those (get back to normal & carry on like nothing ever happened!!!) will never happen. It’s not that I’ve let the genie out of the bottle and it doesn’t want to go back in, you understand. But more like some weird ‘TV soap plot’ that I could never have imagined would ever happen in real life, was unleashed on me & my family.

I can remember (way back when…) having to endure an episode of ‘Eastenders’ that Mandy had been watching. Some particular piece of torrid drama unfurled on one unfortunate character and I said “Why does that always happen on these types of programme? Anyone who ever seems to be doing well gets hit by some kind of personal tragedy. It’s so pessimistic and depressing (& predictable!). It doesn’t always have to happen like that and it certainly doesn’t in real life!” – WRONG!

Okay, so it happens! And it happened to me. Yes, I’ve still got the virus, and yes, some days I feel like crap. But I did for many years prior to my transplant without even realising it. And once I did I kept on working up until about four or five months before my transplant. I was working fifteen hour days with an hour or so travel time either side, to and from work, for six days a week! That was until my employer found out I had HepC and that I had not declared it! I was suspended from work immediately. After all sorts of inquiries and tribunals I was told I was allowed to return to work but under a final written warning! “Erm, let me think about that for a moment, er, thanks but no thanks. Don’t call me, I’ll call you!”

But now I need to get to my third point “Once I’m better… I’ll put it all behind me!” Okay, so I’m not completely better but I need to move forward with my life and that is what has been ‘bothering’ me lately.

As you may have read in ‘How Do I Define Myself?’ that for me – ‘I am what I do’ so to speak. Now, more than ever, I need to go back to work.

But would you hire this man? After an ugly split with the company I sold my business to but with whom I was under contractual agreement (because of my HepC)? Bad credit history because this forced me to declare bankruptcy (because of my HepC)? Pushed out of a job by my last employer for whom I was working  (because of my HepC)? Not worked for over a year (because of my HepC)? Just returning to work after a Liver Transplant (because of my HepC)? And STILL has HepC!!! Now, I was an employer for many years and I wouldn’t hire me! You get my point.

So folks, if you’ve been in this kind of situation or something like it, and I’m sure there are others like me reading this, what do you suggest? What do I say when I get asked at interview “Tell me about yourself, what have you been doing up until now”? What do I write on the ubiquitous application forms when they ask about ‘time off sick’? And do I declare my HepC? Especially when I know I’ll never get the job if I do.

The thing is, I moved on once before in my life, when things weren’t going well, as many of us have who contracted this virus - because of a ‘dubious’ past. I put it all behind me, moved on with my life etc etc. I was even making a real success of things until one day out of the blue, I got sick. I don’t want to feel like I’m going backwards. I don’t want to stand still. But I’m also scared as hell that if I do move forward it will happen all over again.

Don’t get me wrong, it’s not all ‘doom & gloom’ here. I generally have a positive outlook on life. I always said that I would use this ‘second chance’ as an opportunity to switch careers (especially as going back into catering with HCV would be difficult) and do something that I really wanted to do. The problem is, I’m not quite sure now what that is and there just aint the jobs out there that there once was. I do keep getting calls to go for interviews because my CV etc looks quite good, but it makes no mention of my HepC nor my recent’ish history. So I go to the meetings and that’s the end of that. Surely there has got to be ONE job out there somewhere…? So any help or answers right now would be real helpful.

Take care everyone…. Ian

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Ian Quill : My World - A blog for me and people like me, beating HepC (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

"A blog for me and people like me, beating HepC"

Hi, I'm a Hepatitis C sufferer and have been for about 25 years or so, unbeknown to me!

The virus became 'active' a few years ago and I was diagnosed sometime after that. Unfortunately my liver was already too badly damaged to undergo traditional treatments.

Since that time my health deteriorated until I had a Full Liver Transplant at St Jimmy's in Leeds, however the HepC still remains!

This is my story about my fight with the virus until I beat it or it beats me... and so far I'm winning!

I hope that what I write here may help others who battle daily with HCV and also for those who face, or have faced the 'highs & lows' of an Organ Transplant.

I have an eye for the unusual, a love of philosophical and political humour and enjoy nothing more than good, old fashioned 'Mickey' taking! I write my blog mainly to amuse me, but also to let people know what hep c is and what it's like to live with.

Please click on the links on this site for the Hep C Trust, Hep C Nomads and others, whom I have relied on for information, help and support - and without whom, I would not be here today.

I hope you enjoy reading my by blog and maybe even find it amusing and enlightening!

Keep well everyone... Ian

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Comments & Replies on “One Year On – It’s the Piece it Takes Away” (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Considering I haven’t written in a while, I got some great feedback from my last posting, not just direct to my blog but also by email and through Hep C Forums (such as Hep C Nomads and the Hep C Friends. It was always good to know that help is still out there when I needed it most.

I decided, unusually, to post their responses and my replies. These answers helped me sit and think about what it was that seems to be the problem that I’m currently trying to circumnavigate. They seem to have worked too, but I’m not going to jump into that now but try and express it in my next post.

Thanks to all who wrote, I hope you can throw further light on the trials & tribulations that I write about and that all those with HCV face.

Nanakoosa wrote - “Another great post. It feels like we do become so consumed within this disease, either being sick, or on treatment or waiting for a transplant that those things begin to define who we are. I like to remind myself to say I'm an unemployed Social worker, or an aspiring writer, but in the back of my mind is always the thought (or I will be after treatment). That phrase, "after treatment", or in your case "after the transplant" carries a lot of weight...and uncertainty. It seems like that's where you are now, in the great unknown where it's time to fill in the blank that follows the "after" phrase. I'm the kind of person who believes that if we keep an open heart and mind and take one day at a time, our path will eventually become clear. Problem is sometimes it takes longer than we'd like! Wishing you a Happy New Year, Jenny”

Pixie of Hep C Nomads wrote – “Thanks Ian and gives us a good insight as to the journey you have been on.....It seems not everything is clear cut regarding the HCV, even post tx members are saying they are not the same, though there are good positives stories as well as the negative.

Hope you don’t mind me asking you some things..? Do you think the "adventurer" in you has gone because of the worry of rejection once you have had a transplant; is this foremost in your mind? I know those living with the virus worry about Viral loads, those on tx just worry and post tx many say they feel different, those SVR still worry the virus might come back, it seems we are never free of the worry of it all? I am glad you are alive and kicking one year on and believe you will find the jewel your seeking...PX”

MY REPLY TO Pixie “Gosh Pixie, Hard to say, rejection yes, I suppose it is. And now that I can come forward I get the same old question of "what have you been doing with yourself the last year or so" you start by not just telling them about the transplant, it's then telling them about the hepC which casts a light on your past and so on and so on. By the time you've finished, you've knocked any kind of confidence you may have had out the window. I was saying to Nanakoosa earlier that 'I haven't hit the nail on the head' yet with this post, but this is why I write it down (&share it) to try and throw up the answers. Kind of healing and kind of exploration I suppose. Good to 'talk' with you again Pixie, take care x”

And Pixie replied - “Ian, I cant imagine the feelings a transplant would give you, I could talk till the cows come home about the overwhelming feelings of living with this virus and how it changed me, but a transplant ???...going into theatre just not knowing, waking up and you must feel fragile having a new organ that’s keeping you alive...over whelming. I just cant imagine it, your bound to feel different, I expect some people do just grab life and live it to the full? Taking everyday risks perhaps? But yes I believe your never quite the same afterwards – Pixie”

Karentaliesin from Nomads wrote “Hi Ian, Good to hear from you, and for sharing these thoughts of yours and feelings, I guess when I read it I take my own slant on it, but I throw it out for you to peruse, coming face to face with our immortality and sort of beating it we think the whole world and its wife is gonna become different, we are so focused on that, and when its all done, we find we are obviously physically different, we are not the person that we thought we would return to being, even if we have been granted far better health than before , or for many life but with extras, and somewhere we are left hunting for meaning, why am I here, what is it for, and we still don’t have answers to those questions and somehow I think in our struggles for health we somehow think we will come out of it with that knowledge, and we don’t. We are the same ole person with the same old stuff, if not a bit more thrown in from the knowledge of how fragile life is, and we know we are supposed to love it and live it, all the things escaping death we expect should give us, and it doesn’t, if we didn’t know before the story then we have the same head that doesn’t know it after!! and that can lead to a pretty dark hole for some, and after major illnesses’ it is quite common for people to lose their joy in life, (depression or hard times) our fragility is quite frightening and beyond our comprehension or even ability to control safely, adventuring becomes quite fearful, because none of us actually want our mortality to end, but neither do we know how to live it in a way that makes it seem like its got a point; so I suggest you’re having some serious questions going on inside you about the world the universe and all that jazz, the hole that need or wants filling, and how do you do that is the Question, the melancholy, why am I here, or what’s the point? Or whichever way it comes out for you: Maybe you have just become aware of the human condition because all the distractions have actually been taken away, this too shall pass, so there ya go that’s my take on it for you to think about, or play with, take care Ian, always great to hear from you, love - Karen xx”

Eva wrote (http://evaday.blogspot.com) – “Ian, That was so great to read. I have thought of you often and yes particularly during the "missing bit” you mention. Yes I actually do remember the ‘Brand New Me’ Post (though wouldn't have recalled name of it till you mentioned it again) and have found your story amazing. And bravely done and well told - which I am sure will be a great contribution to others in same boat.... I am sure you will gain good new navigation skills Ian, you seem to have inbuilt instinct for it.... very well done to you for coming through all this as you have and always good to hear from you - will look out for any updates. Wish you good health and happy time’s xx – Eva”

Tina of HCV New Drugs ( http://hepatitiscnewdrugs.blogspot.com ) wrote – “May you find your way brave Ian”


And finally Bethland at Hep C Freinds wrote – “Hi Ian, I love your stuff...I used to see you on facebook and your blog when I first started treatment. Love and Peace to you in the new world – Elizabeth”

Once again, thanks to all who commented.

Take care everyone…. Ian

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One year on, A Strange New World... (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

On this run up to the New Year and with Christmas just behind us, as with many people, it has prompted me to sit back and take stock of the year and to cast my mind back over the highs' and lows' of 2010 and where I have got to....

In some ways this has been a truly remarkable year. Not many people I suppose can say they did so much and yet did so little at the same time. And I doubt there are many people who would've traded places with me either.

But as the log fire starts to die, worn out kids are now in bed and the Christmas tree has started to wilt and fade I feel a sense of melancholy that I'm forced to give air.

I could only remember how last year as we were doing the same thing, that I was constantly wondering if this would be the last time I would get to view this special treat. I use the word 'view' because all though I was present and joining in as best I could, I couldn't say that I was whole heartedly enjoying this Christmas 'scene' because of the turmoil which at this point was raging in my head.

All the questions lashed to their own worry that were being tossed all around my brain like pieces of a wrecked ship being battered against the rocks, constantly pushing to the front of my mind on each wave of fear and wondering if these final pieces that I had been clinging to were now bobbing around in the foam; their fate too close to danger to call.

Maybe this sounds like I'm over-dramatising but I can honestly say that this was how I felt. With hindsight, the waters were much calmer than I was reading them and my 'ship' stayed afloat. Though the HepC had just about finished off my own liver, I got the call from St Jimmy's at about eight p.m. on January 28th and the following morning I had a full Liver Transplant.

What I will say for anyone who may be facing the same treatment that I was hoping for back then, is this; the hardest part of having this kind of operation is your own state of mind beforehand. It seems easy for me now to say that I shouldn't have put myself through that worry and neither should anyone else in the same situation but I did, and others will. The operation is the easy part; it's the 'not knowing' and the 'will it happen in time' that gets' ya every time.

But those of you who followed my blog back then know that relatively speaking, once it happened, I breezed through the Op without too much difficulty and my recovery after seemed fairly speedy. Then you may also have noticed that six months or so after I seemed to drop off the radar a bit and I suppose it's this 'bit' that I'm talking about now. The 'bit' that I seem to have lost and I'm trying to get back to.

I don't know if it's because of all the pain killing opiates and steroids that you get pumped full of after the op (and I aren't complaining here) and all the other types of medication for this and for that, but for the first few months you feel like your on a natural high (though it's anything but natural). Or it could be the 'new' liver that has revitalised the 'new you' or as I suspect, a combination of both; that the first six months, barring any complications and the initial 'soreness' are nothing short of fantastic! It sounds crazy but it's true! I even wrote in 'Brand New Me' (Feb '09) that it was 'the most life enriching experience I'd ever had!'

Strong words indeed and I suppose that although I never ended up on the 'rocks' that I had been fearing a year ago, I do feel now that somehow I have ended up sort 'washed' up on the shore. I am still alive; but I'm not the person I once was. No longer the foolhardy adventurer running along on any breeze I can find, no more the captain of my own ship; all that has been washed away. The experience has left me clinging to the shore looking for a new life, fearful of what has gone behind.

I hope that in this place that I have landed I can find a new way to live. Who knows, maybe the best is yet to come and somewhere here I'll find a new 'jewel' to prize. But for now this is a strange new world that I'm learning to navigate and will be for some time to come; or at least until I learn how to come to my own rescue again.

Take care everyone.... Ian

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A Merry Christmas To All!

I just thought I'd pop this up 'cos it looks nice and say Merry Christmas everybody and if I don't get chance again - Have a Happy & Healthy New Year.

Take care everyone.... Ian

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Merry Christmas Miss Spanky, I'm the Teachers Pet

Gosh! I was watching the breakfast news this morning, as we were running around (late as usual) trying to get the kids ready for school, with the usual pandemonium that it causes when I noticed the following article.

The reporters on the 'sofa' in the studio started with this: "It seems that giving presents from some children to classmates at Christmas time has reached new heights with some parents spending as much as £50 on gifts. For more on this we go over too....."

WHAT? FIFTY QUID to spend on pressiess to give to my kids classmates for gifts...EACH? WTF! You've gotta be kidding, right? Wrong!

Of course it had to be in London because that's the only place that's got that kind of money left in these austere times AND no-one outside of the capital would do anything so bloody ridiculous.

Anyway, as it turns out the 'special report' of course did come from a school in London (Can you imagine asking a Yorkshireman for that kind of dough?) but it went onto say that some parents were also going out and buying gifts for the Teacher. Gifts that were quoted were stuff like jewellery, cashmere clothing and reported that one teacher even received a holiday in Spain - Gift wrap that, I dare ya...

As the report ended and cut back to the studio, they revealed two ladies on the 'sofa', one was from 'Mumsnet.com' - that collection of southern-centric Yummy Mummy Wannabe's which if you ask me is an updated 'Women’s Institute' for the digital age. And another lady who turned out to be a (London Based) Teacher: and then they started to talk about the social etiquette of what is and isn't acceptable for buying Gifts for the Teach! OMG - what was I listening too? Apparently it's OK for Mum's to get together and put say, a fiver in each to buy say, gardening equipment for the Teach! WTF!

Well this left me with a dilemma as today was the last day of term and obviously I hadn't bought anything for the kids’ teacher.

Not wanting to be 'outdone' by those bloody southners I vowed to do something about this modern day dilema. So during the day I hunted round the house for a pressie I could hand over to the expectant teacher when I picked the kids up - well teachers watch breakfast TV News too!

And then I remembered it, something I'd bought Mandy (my wife) on the spur of the moment and didn't think she would really go for once I got home and thought about it. Now Okay, it might not be the perfect gift but teachers also have private lives' too ya know!

It was a very skimpy, 100% polyester, one size fits all, Miss Spanky the Naughty Teacher Outfit! Gift wrapped too.

And so as I pulled up at the school gates, searched for my little cherubs and got them 'strapped in' the back of the car, I grabbed the Pressie, marched up to the kids teacher who had been overseeing the kids leaving time and said "MR Burton, Merry Christmas, I got you a little something that I thought you might be able to use. I do hope you like it!"

Take care everyone.... Ian

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`The truth will always win’ - Julian Assange writes

`The truth will always win’ - Julian Assange writes


Tuesday, December 07, 10 (11:26 pm)

Wikileaks founder Julian Assange wrote this Op-Ed for The Australian today:

Key lines:

* WikiLeaks is fearlessly publishing facts that need to be made public.

* The dark days of corruption in the Queensland government before the Fitzgerald inquiry are testimony to what happens when the politicians gag the media from reporting the truth.

* (My idea is) to use internet technologies in new ways to report the truth.

* People have said I am anti-war: for the record, I am not. Sometimes nations need to go to war, and there are just wars.

* The Gillard government (Australia) is trying to shoot the messenger because it doesn’t want the truth revealed.

Text follows:

IN 1958 a young Rupert Murdoch, then owner and editor of Adelaide’s The News, wrote: “In the race between secrecy and truth, it seems inevitable that truth will always win.”

His observation perhaps reflected his father Keith Murdoch’s expose that Australian troops were being needlessly sacrificed by incompetent British commanders on the shores of Gallipoli. The British tried to shut him up but Keith Murdoch would not be silenced and his efforts led to the termination of the disastrous Gallipoli campaign.

Nearly a century later, WikiLeaks is also fearlessly publishing facts that need to be made public.

I grew up in a Queensland country town where people spoke their minds bluntly. They distrusted big government as something that could be corrupted if not watched carefully. The dark days of corruption in the Queensland government before the Fitzgerald inquiry are testimony to what happens when the politicians gag the media from reporting the truth.

These things have stayed with me. WikiLeaks was created around these core values. The idea, conceived in Australia , was to use internet technologies in new ways to report the truth.

WikiLeaks coined a new type of journalism: scientific journalism. We work with other media outlets to bring people the news, but also to prove it is true. Scientific journalism allows you to read a news story, then to click online to see the original document it is based on. That way you can judge for yourself: Is the story true? Did the journalist report it accurately?

Democratic societies need a strong media and WikiLeaks is part of that media. The media helps keep government honest. WikiLeaks has revealed some hard truths about the Iraq and Afghan wars, and broken stories about corporate corruption.

People have said I am anti-war: for the record, I am not. Sometimes nations need to go to war, and there are just wars. But there is nothing more wrong than a government lying to its people about those wars, then asking these same citizens to put their lives and their taxes on the line for those lies. If a war is justified, then tell the truth and the people will decide whether to support it.

If you have read any of the Afghan or Iraq war logs, any of the US embassy cables or any of the stories about the things WikiLeaks has reported, consider how important it is for all media to be able to report these things freely.

WikiLeaks is not the only publisher of the US embassy cables. Other media outlets, including Britain ‘s The Guardian, The New York Times, El Pais in Spain and Der Spiegel in Germany have published the same redacted cables.

Yet it is WikiLeaks, as the co-ordinator of these other groups, that has copped the most vicious attacks and accusations from the US government and its acolytes. I have been accused of treason, even though I am an Australian, not a US, citizen. There have been dozens of serious calls in the US for me to be “taken out” by US special forces. Sarah Palin says I should be “hunted down like Osama bin Laden”, a Republican bill sits before the US Senate seeking to have me declared a “transnational threat” and disposed of accordingly. An adviser to the Canadian Prime Minister’s office has called on national television for me to be assassinated. An American blogger has called for my 20-year-old son, here in Australia, to be kidnapped and harmed for no other reason than to get at me.

And Australians should observe with no pride the disgraceful pandering to these sentiments by Prime Minister Gillard and US Secretary of State Hillary Clinton have not had a word of criticism for the other media organisations. That is because The Guardian, The New York Times and Der Spiegel are old and large, while WikiLeaks is as yet young and small.

We are the underdogs. The Gillard government is trying to shoot the messenger because it doesn’t want the truth revealed, including information about its own diplomatic and political dealings.

Has there been any response from the Australian government to the numerous public threats of violence against me and other WikiLeaks personnel? One might have thought an Australian prime minister would be defending her citizens against such things, but there have only been wholly unsubstantiated claims of illegality. The Prime Minister and especially the Attorney-General are meant to carry out their duties with dignity and above the fray. Rest assured, these two mean to save their own skins. They will not.

Every time WikiLeaks publishes the truth about abuses committed by US agencies, Australian politicians chant a provably false chorus with the State Department: “You’ll risk lives! National security! You’ll endanger troops!” Then they say there is nothing of importance in what WikiLeaks publishes. It can’t be both. Which is it?

It is neither. WikiLeaks has a four-year publishing history. During that time we have changed whole governments, but not a single person, as far as anyone is aware, has been harmed. But the US , with Australian government connivance, has killed thousands in the past few months alone.

US Secretary of Defence Robert Gates admitted in a letter to the US congress that no sensitive intelligence sources or methods had been compromised by the Afghan war logs disclosure. The Pentagon stated there was no evidence the WikiLeaks reports had led to anyone being harmed in Afghanistan . NATO in Kabul told CNN it couldn’t find a single person who needed protecting. The Australian Department of Defence said the same. No Australian troops or sources have been hurt by anything we have published.

But our publications have been far from unimportant. The US diplomatic cables reveal some startling facts:

The US asked its diplomats to steal personal human material and information from UN officials and human rights groups, including DNA, fingerprints, iris scans, credit card numbers, internet passwords and ID photos, in violation of international treaties. Presumably Australian UN diplomats may be targeted, too.

King Abdullah of Saudi Arabia asked the US Officials in Jordan and Bahrain want Iran ‘s nuclear program stopped by any means available.

Britain’s Iraq inquiry was fixed to protect “US interests”.

Sweden is a covert member of NATO and US intelligence sharing is kept from parliament.

The US is playing hardball to get other countries to take freed detainees from Guantanamo Bay . Barack Obama agreed to meet the Slovenian President only if Slovenia took a prisoner. Our Pacific neighbour Kiribati was offered millions of dollars to accept detainees.

In its landmark ruling in the Pentagon Papers case, the US Supreme Court said “only a free and unrestrained press can effectively expose deception in government”. The swirling storm around WikiLeaks today reinforces the need to defend the right of all media to reveal the truth.

Julian Assange is the editor-in-chief of WikiLeaks.

Via and with thanks to: Media Diary with Caroline Overington


The Diary is this week’s take on Australian media. It’s edited by Caroline Overington, who is a two-time winner of the Walkley Award for Investigative Journalism. You can reach her at diary@theaustralian.com.au.

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Getting all Political again....

Oh well, here I go again, ranting & raving. I just can’t help it!


It's every time I turn on the TV these days I just get MAD AS HELL about the stuff I'm seeing - usually on the News!

MPs' Expenses

Now you'd think that after all the kafuffle that was caused when The Daily Telegraph broke the stories about how our MPs' had for years been fiddling there expenses and pocketing tens of thousands pounds of Tax Payers money and the ensuing rage that followed; that lessons may have been learned!

But oh no, it would seem that now the dust has settled that Mps' would prefer to go back to the bad old days. They would prefer it if they didn't need to produce receipts for anything they may have needed to purchase whilst going about their business. They would prefer it if, once they had put in their expense claims that they didn't need to be scanned to make sure that what they were claiming for was justified. They would prefer that should they just say that they need to claim these expenses, that they should just be paid out instantly so that they are never out of pocket and they would prefer that we should just take them at their word; because after all they are MPs' and have never done anything that may require us to question their integrity in the past.

Today, a spokesman speaking on behalf of David Cameron said "they couldn't rule out" scrapping the new expenses checking body that was introduced following the last MPs' scandal that gave the press a field day, caused massive public outcry and changed the way I for one, viewed our Political system.

Anyone who has had to fill out expense forms as part of their job will know that it is a fact of life that accompanying any claim for expense must be backed up by a receipt or statement, will have to be checked for its' relevance and should it be found to be fraudulent, that the outcome will end with dismissal or at worst with prosecution. Why do MPs' not get the message that as we have to abide by these rules, we expect our leaders to abide by them too?

I know there are many things going on in the world that I can do nothing about and that I really shouldn't dig around the way I do, only to find evermore things that enrage me and make me want to scream. But on this occasion I would like to ask anyone who's reading this, who feels the same sense of disgust at the Government as I; could they voice their disgust too.

Take care everyone…. Ian

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Is There A Santa Claus? (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

This is something that I read on 'HCV Supports' December Newsletter that I couldn't resist sharing with you.....
(they can be found at: http://www.hcvsupport.org/)

Is There A Santa Claus?


Eight-year-old Virginia O'Hanlon wrote a letter to the editor of New York's Sun, veteran newsman Francis Pharcellus, and his quick response was printed as an unsigned editorial on Sept. 21, 1897. It has become history's most reprinted newspaper editorial.
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"DEAR EDITOR:
I am 8 years old. Some of my little friends say there is no Santa Claus. Papa says, 'If you see it in THE SUN it's so.' Please tell me the truth; is there a Santa Claus?

"VIRGINIA O'HANLON.

"115 WEST NINETY-FIFTH STREET."

Reply:

"VIRGINIA, your little friends are wrong. They have been affected by the skepticism of a skeptical age. They do not believe except [what] they see. They think that nothing can be which is not comprehensible by their little minds. All minds, Virginia, whether they be men's or children's, are little. In this great universe of ours man is a mere insect, an ant, in his intellect, as compared with the boundless world about him, as measured by the intelligence capable of grasping the whole of truth and knowledge.

Yes, VIRGINIA, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! how dreary would be the world if there were no Santa Claus. It would be as dreary as if there were no VIRGINIAS. There would be no childlike faith then, no poetry, no romance to make tolerable this existence. We should have no enjoyment, except in sense and sight. The eternal light with which childhood fills the world would be extinguished.

Not believe in Santa Claus! You might as well not believe in fairies! You might get your papa to hire men to watch in all the chimneys on Christmas Eve to catch Santa Claus, but even if they did not see Santa Claus coming down, what would that prove? Nobody sees Santa Claus, but that is no sign that there is no Santa Claus. The most real things in the world are those that neither children nor men can see. Did you ever see fairies dancing on the lawn? Of course not, but that's no proof that they are not there. Nobody can conceive or imagine all the wonders there are unseen and unseeable in the world.

You may tear apart the baby's rattle and see what makes the noise inside, but there is a veil covering the unseen world which not the strongest man, nor even the united strength of all the strongest men that ever lived, could tear apart. Only faith, fancy, poetry, love, romance, can push aside that curtain and view and picture the supernal beauty and glory beyond. Is it all real? Ah, VIRGINIA, in all this world there is nothing else real and abiding.

No Santa Claus! Thank God! he lives, and he lives forever. A thousand years from now, Virginia, nay, ten times ten thousand years from now, he will continue to make glad the heart of childhood.
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Each year during the Christmas season I share this editorial written by Francis Pharcellus in 1897 to Virginia O'Hanlon with our HCV Support members. For me it is a constant reminder to have faith in those things in life which we cannot touch with our senses, and to hold dear the little child which resides in all of us. With faith and belief anything is possible. For me Christmas is my favorite time of year for it renews our faith and brings out the inner child in all of us.
 My hope and wish for all affected by hepatitis C is that Santa will bring them the greatest gift of all .... a CURE! ..and for those awaiting liver transplantation.... The Gift of LIFE with a new liver.

May you all have a very Merry Christmas and a Happy New Year!

Wayne A. Morea

Founder/CEO - HCV Support, Inc. (http://www.hcvsupport.org/)
-------------------------------------------------------------------------------------

Educator, writer. Born Laura Virginia O'Hanlon in 1889. At the age of eight, Virginia O'Hanlon became part of American history as the little girl who questioned the existence of Santa Claus. When she was unable to get a straight answer from her parents, she wrote a letter to the New York Sun newspaper in search of the truth.
As for the little girl in the story, she grew up and became a teacher. O'Hanlon earned a master's degree from Columbia University and a doctorate from Fordham University. For many years, she worked as an educator and school administrator. O'Hanlon also married, and became Virginia O'Hanlon Douglas.
Laura Virginia O'Hanlon Douglas died on May 13, 1971 at the age of 82. In 2005, plans were announced to transform her New York City childhood home into a school, according to the the Sun. A decision of which lifelong teacher O'Hanlon would surely have approved.

I hope you enjoyed it as much as I did.

Take care everyone.... Ian

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Hepatitis Aware!

500 million people worldwide are currently infected with hepatitis B or C - This is over 10 times the number infected with HIV/AIDS - Between them, hepatitis B and C kill 1.5 million people a year Most of the 500 million infected do not know

via Jaye Nunya (http://www.facebook.com/?ref=home#!/JayeDragon)

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My Treatment, post transplant. (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Hi All,

As promised, here are the details of the research study I have been asked to participate in since having my transplant.


In essence it is a study to test the effects of Warfarin (anticoagulant and rat-poison!) and its effects on the Hepatitis C virus on post liver transplant patients like me.

The study is called the 'WAFT-C' study and has been organised by the Imperial College, London and is run in conjunction with St James Hospital, Leeds specialist liver unit.

They believe that Warfarin, a cheap and well used drug, stops the HepC virus from 'grouping' and attacking the new liver.

Below is a patient information sheet that was given to me when I was invited to take part in the study and I hope it is of interest and answers any questions about the treatment, as it did for me. I have 'cut, copied and pasted' it for your information

I will post more info as to how I'm doing as I go forward (maybe even another video diary post) and results of Liver Biopsies as I have them done.

Thanks to all, any questions please e-mail me at: riosbarandgrill@gmail.com

Take care everyone.... Ian

 
Anticoagulation for Liver Fibrosis in patients Transplanted for Hepatitis C Virus Infection (WAFT-C)

You are being invited to take part in a research study. Before you decide it is important that you understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part. Thank you for reading this.

What is the purpose of the study?

We have found evidence that the blood coagulation system contributes to the development of liver fibrosis (scarring) in patients with hepatitis. In patients with hepatitis C, who have had a liver transplanted a significant proportion develop accelerated fibrosis in their transplanted liver. We wish to find out whether anti-coagulation (thinning the blood) slows down the development of this re-fibrosis following transplantation. This is a study lasting for 2 years which will tell us whether anti-coagulation has any beneficial effect and provide us with further information regarding factors associated with liver fibrosis post transplantation.

Why have I been chosen?

You have been asked to participate because you have had a recent liver transplant and are still infected with Hepatitis C.

Do I have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part you will be given this information sheet to keep and be asked to sign a consent form. If you decide to take part you are still free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, will not affect the standard of care you receive.

What will happen to me if I take part?

If you agree to participate at the beginning of the study you will be randomly allocated to one of two groups. One group will have anticoagulation in the form of a drug called warfarin. The second group will receive standard care post liver transplant care. The anticoagulation period will be 2 years.

We will organise a visit to take place one to three months after your transplant. At this visit blood tests will be taken and if you are allocated to the anticoagulation group, this will be started. During the period you are anti-coagulated you take warfarin tablets by mouth and we will monitor your blood carefully to make sure that the level of anticoagulation is correct. This will initially occur up to three to four times in the first week, and then weekly and subsequently monthly. Where possible will we try and coordinate these visits with your transplant clinic follow-up to minimize inconvenience to yourself. You will be followed up at 6 months, 12 months, 18 months and at 24 months to ensure there are no complications.

Liver biopsies will be performed in keeping with your routine care at 12 and 24 months following your transplant. The anticoagulation will be stopped 5 days prior to the biopsy, to allow your blood clotting to return to normal 24 hours before the biopsy. If no complications have occurred following the biopsy the anticoagulation will be recommenced 24 hours later.

A subgroup of patients will be invited to participate in a sub-study to evaluate non-invasive measures of liver fibrosis. A microbubble ultrasound of the liver and special MRI scan of the liver (MR spectroscopy) will be performed at 12 and 24 months and compared to the results of the corresponding liver biopsies.

What do I have to do?

Patients in the anti-coagulation group of the study will need to attend three or four times in the first week and then weekly and subsequently monthly for monitoring. During this period high risk sports such as mountaineering and downhill bike racing should be avoided. You should not take any aspirin or anti-inflammatory drugs and all new medications should be discussed with the study coordinator. There are no restrictions on normal activities, but one should minimize any changes to the intake of green leafy vegetables (spinach, greens and broccoli), green peas and oriental green tea. Drinking cranberry juice or taking other cranberry based products (capsules or concentrates) might increase the effect of warfarin in thinning the blood, and you should therefore avoid drinking or taking these products while taking warfarin. If you are female and become pregnant you would need to stop the medication and withdraw from the trial immediately.

What is the drug or procedure that is being tested?

Warfarin is a commonly used drug which reduces the formation of blood clots. It is frequently used for treating blood clots in the legs and pulmonary emboli (blood clots in the lung). When carefully monitored it is a safe drug which can be taken by mouth. The dose of the drug needs to varied from time to time in an individual to maintain effective but safe levels of anti-coagulation.

What are the alternatives for diagnosis or treatment?

At present there are currently no treatments available for treating accelerated liver fibrosis post liver transplant. Anti-viral therapy to eliminate the Hepatitis C virus is effective only in less than a third of patients. Re-transplantation is rarely an option. A treatment for liver fibrosis is therefore urgently required.

What are the side effects of any treatment received when taking part?

Warfarin does not normally produce any side effects. If the dose is too high then you may develop spontaneous bruising, bleeding from the gut or heavy periods. If these complications arise you should stop taking the medication and go immediately to the nearest casualty department and tell them that you are taking warfarin. Please contact St James Hospital Liver Unit, Leeds or Imperial College, London in the event of any problems
What are the possible disadvantages and risks of taking part?

Participation in this study may cause you some inconvenience and expose you to the small risk of over anti-coagulation. However, no other disadvantages can be anticipated.

Any woman who finds that she has become pregnant while taking part in the study should immediately tell her doctor.

What are the possible benefits of taking part?

We hope that the treatment will help you. However, this cannot be guaranteed. If there is some benefit then this may only last as long as you are taking the warfarin. The information we get from this study may help us to provide better treatment for you and other patients with liver fibrosis in the future.

What if new information becomes available?

Sometimes during the course of a research project, new information becomes available about the treatment/drug that is being studied. If this happens, your doctor will tell you about it and discuss with you whether you want to continue in the study. If you decide to withdraw your doctor will make arrangements for your care to continue. If you decide to continue in the study you will be asked to sign an updated consent form.

Also, on receiving new information your research doctor might consider it to be in your best interests to withdraw you from the study. He/she will explain the reasons and arrange for your care to continue.

What happens when the research study stops?

At the end of the study the anti-coagulation will stop. If the study shows potential benefit the warfarin may be continued under the guidance of your transplant clinic doctors.

What if something goes wrong?

Imperial College London holds insurance policies which apply to this study. If you experience harm or injury as a result of taking part in this study, you will be eligible to claim compensation without having to prove that Imperial College is at fault. This does not affect your legal rights to seek compensation. If you are harmed due to someone's negligence, then you may have grounds for a legal action. Regardless of this, if you wish to complain, or have any concerns about any aspect of the way you have been treated during the course of this study then you should immediately inform Dr Charles Millson or Professor Mark Thursz, (contact details as above). The normal National Health Service complaints mechanisms are also available to you. If you are still not satisfied with the response, you may contact the Imperial College Clinical Research Office.

Will my taking part in this study be kept confidential?

All information which is collected about you during the course of the research will be kept strictly confidential. Any information about you which leaves the hospital will have your name and address removed so that you cannot be recognised from it. In addition with your approval we will contact your own General Practitioner to notify him or her of your participation in the trial. This is done to ensure that all doctors involved in your care are aware of all the treatments you are receiving.

What will happen to the results of the research study?

The overall results of this research may be presented at meetings and published in one of the medical journals; however your identity will not be disclosed.

Who is organising and funding the research?

This study has been initiated and organised by Professor Thursz and colleagues in the Department of Medicine at St. James University Hospital, Leeds and Imperial College. The study is sponsored by Imperial College and funded externally. There are no commercial interests in the trial.

Who has reviewed the study?

This study has been reviewed by the Royal Free Hospital & Medical School Research Ethics Committee.

Contacts for Further Information.

For further information please contact Dr. Millson or Professor Thursz (contact details above).

In emergency please phone St. James University Hospital Switchboard and ask for the Liver Registrar.

Thank you for reading this Patient Information Sheet. If you decide to participate, you will be given a copy of this Information Sheet and a signed Consent Form to keep. If you do decide to join the study, we would also like to thank you for agreeing to take part.

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BBC - Health: Hepatitis C

Hepatitis C - A Post by Dr Rob Hicks for BBC News

Inflammation of the liver - hepatitis - has many causes, including several viruses. One of these is hepatitis C. There is currently no vaccine to prevent infection, so it's important to be aware of it and avoid it.

What is hepatitis C?


Hepatitis C is an infection with the hepatitis C virus. Although there is no vaccine to protect against infection, there is effective treatment available.

Estimates suggest over 250,000 people in the UK have been infected with hepatitis C, but eight out of ten don’t know that they have it because they have no symptoms. Worryingly, about 75% of these people go on to develop a chronic hepatitis. But because it can take years, even decades, for symptoms to appear, many people (possibly 100,000 or more) remain unaware that they have the problem. By the time they become ill and seek help, considerable damage has been done to the liver. This might have been prevented if the person had been diagnosed earlier.

Elsewhere in the world, hepatitis C is even more common – the World Health Organisation estimate that three per cent of the world’s population (about 170 million people) have chronic Hepatitis C, and up to four million people are newly infected each year.

Symptoms

In most cases, the initial infection doesn't cause any symptoms. When it does, they tend to be vague and non-specific.

Possible symptoms of hepatitis C infection include:

•Fatigue

•Weight loss

•Loss of appetite

•Joint pains

•Nausea

•Flu-like symptoms (fever, headaches, sweats)

•Anxiety

•Difficulty concentrating

•Alcohol intolerance and pain in the liver area

The most common symptom experienced is fatigue, which may be mild but is sometimes extreme. Many people initially diagnosed with chronic fatigue syndrome are later found to have hepatitis C.

Unlike hepatitis A and B, hepatitis C doesn't usually cause people to develop jaundice.

About 20-30% of people clear the virus from their bodies - but in about 75% of cases, the infection lasts for more than six months (chronic hepatitis C). In these cases the immune system has been unable to clear the virus and it will remain in the body long term unless medical treatment is given. Most of these people have a mild form of the disease with intermittent symptoms of fatigue or no symptoms at all.

About one in five people with chronic hepatitis C develops cirrhosis of the liver within 20 years (some experts believe that, with time, everyone with chronic hepatitis C would develop cirrhosis but this could take many decades).

Causes and risk factors

Hepatitis C virus is usually transmitted through blood-to-blood contact. One common route is through sharing needles when injecting recreational drugs - nearly 40% of intravenous drug users have the infection and around 35% of people with the virus will have contracted it this way.

Similarly, having a tattoo or body piercing with equipment that has not been properly sterilised can lead to infection.

Before 1991, blood transfusions were a common route of infection. However, since then all blood used in the UK has been screened for the virus and is only used if not present.

Hepatitis C can be sexually transmitted, but this is thought to be uncommon. It can be passed on through sharing toothbrushes and razors. It is not passed on by everyday contact such as kissing, hugging, and holding hands - you can't catch hepatitis C from toilet seats either.

If someone needs a blood transfusion or medical treatment while staying in a country where blood screening for hepatitis C is not routine, or where medical equipment is reused but not adequately sterilised, the virus may be transmitted.

Most people diagnosed with hepatitis C can identify at least one possible factor which may have put them at risk but for some, the likely origin of the infection isn't clear. Because it can remain hidden and symptomless for so many years, it may be very difficult to think back through the decades to how it might have begun.

There are a number of ways to reduce the risk of the infection being transmitted. Those most at risk of contracting the infection are injecting drug users, who should never share needles or other equipment.

Practising safe sex by using condoms is also important.

People with hepatitis C infection aren't allowed to register as an organ or blood donor.

Treatment and recovery

People with chronic hepatitis C infection should be seen by a hospital liver specialist who may recommend antiviral drug treatments either as single drug therapy or as combination therapy.

Whether treatment is needed, and if so which type, depends on a number of factors. These include blood tests to identify which strain of hepatitis C infection is present and how well the liver is functioning, and a liver biopsy to establish whether cirrhosis is occurring.

Hepatitis C can be treated with pegylated interferon alpha and ribavirin. These drugs offer the best chance to clear the virus from the body, and are often used together as dual or combination therapy which has been shown to be effective in 55% of cases. Some strains or genotypes of the Hepatitis C virus are more likely to respond than others. Even if the virus isn’t completely cleared, the treatments can reduce inflammation and scarring of the liver. They may, however, cause side effects that some people find difficult to tolerate.

Many people also find that complementary and lifestyle approaches help – there is little evidence that these can reduce levels of the virus but they may help to deal with symptoms and improve quality of life.

If you think you could have been in contact with the hepatitis C virus at any point in the past, you can have a test to find out if you've been infected. You should ask you GP. Local drug agencies and sexual health clinics (sometimes called genito-urinary medicine or GUM clinics) may also offer testing.

Disclaimer

All content within BBC Health is provided for general information only, and should not be treated as a substitute for the medical advice of your own doctor or any other health care professional. The BBC is not responsible or liable for any diagnosis made by a user based on the content of the BBC Health website. The BBC is not liable for the contents of any external internet sites listed, nor does it endorse any commercial product or service mentioned or advised on any of the sites. See our Links Policy for more information. Always consult your own GP if you're in any way concerned about your health.

Dr Trisha Macnair last medically reviewed this article in February 2009.

BBC - Health: Hepatitis C

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Hepatitis C Virus Damages Brain Cells

News > 2010 > October > Hepatitis C Virus Causes Brain Inflammation Leading to Neuron Injury



Hepatitis C Virus Causes Brain Inflammation Leading to Neuron Injury


SUMMARY: Hepatitis C virus (HCV) can breach the blood-brain barrier and infect support cells in the brain, triggering inflammatory changes that ultimately result in damage to neurons, suggests new research published in the open access online journal PLoS One. Findings from this autopsy study may help explain how HCV infection causes neurocognitive impairment, including the poor concentration and memory problems commonly referred to as "brain fog."

Below is the text of a press release issued by the University of Alberta describing the study findings.

U of A Medical Research Team Discovers - Hepatitis C Virus Damages Brain Cells

Edmonton, Alberta -- October 7, 2010 -- A University of Alberta researcher specializing in neurological infections has discovered that the hepatitis C virus injures and inflames brain cells, resulting in neurological issues for some patients living with the disease. Until now, no one has been able to prove this.

A recent Canadian study suggests that 13 per cent of people with hepatitis C, a chronic condition that affects 300,000 Canadians, also have neurological problems. Other research has suggested the hepatitis C virus might penetrate the blood-brain barrier. Chris Power, the Canada Research Chair in Neurological Infection and Immunity with the Faculty of Medicine and Dentistry, and his team decided to tackle this theory conducting experiments on human cadavers.

"We saw the virus in the brain of a deceased patient who had hepatitis C," said Powers, who noted that normally it is very difficult for any type of virus or infection to pass the blood-brain barrier. Based on this discovery, the researchers made three new and major findings. The hepatitis C virus damaged those neurons in the brain responsible for motor functions, memory and concentration. The virus also triggered inflammation of the brain, which contributed to more neurons being damaged. And, thirdly, the virus stopped a natural process in the brain cells called autophagy, in which the cells get rid of unwanted toxic proteins. So, instead, the brain cells were accumulating large amounts of these toxic proteins, causing further damage to the brain cells.

"For a long time, the medical community has recognized some people who have hepatitis C also have memory loss and poor concentration, which is very disabling for those patients," says Power. "Now we have some understanding about the cause of these neurological symptoms that can lead to the development of future treatments for people with hepatitis C."

"This discovery is significant because this is the first time anyone has confirmed that the hepatitis C virus can infect and injure brain cells."

The research conducted by Power and his team was funded by an Emerging Team Grant from the Canadian Institutes of Health Research. He collaborated with Babita Agrawal and Jack Jhamandas, both of the U of A, and Chris Richardson of Dalhousie University in Halifax. The discoveries by Power and his team were just published in the prestigious Public Library of Science (PLoS) One journal.

10/15/10. Source - R Maurier, University of Alberta. U of A medical research team discovers hepatitis C virus damages brain cells. Press release. October 7, 2010

http://www.hepctrust.org.uk/

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Camping!

Hi-De-Hi  (Ho-De-Ho I hear you shout!?!)

Pictures of Mandy and the kids from our camping trip last weekend with Emily's school - Great Fun!

Matthew hogging centre-stage as usual.... a chip off the old block I do believe!

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A joke from my sister

My sister sends me some rubbish jokes on email from time to time, here's another...

Golf Panties....


An Englishmans' wife steps up to the tee and, as she bends over to place her ball, a gust of wind blows her skirt up and reveals her lack of underwear.

'Good God, woman! Why aren't you wearing any skivvies?', her husband demanded.

'Well' she said, 'you don't give me enough housekeeping money to afford any.'

The Swede immediately reaches into his pocket and says, 'For the sake of decency, here's a 50. Go and buy yourself some underwear.'

Next, the Irishman's wife bends over to set her ball on the tee.

Her skirt also blows up to show that she, too, is wearing no undies. 'Blessed Virgin Mary, woman! You've no knickers. Why not?'

She replies, 'I can't afford any on the money you give me.'

Patrick reaches into his pocket and says, 'For the sake of decency, here's a 20. Go and buy yourself some underwear"!

Lastly, the Scotsman's wife bends over. The wind also takes her skirt over her head to reveal that she, too, is naked under it.

'Sweet mudder of Jaysus, Aggie! Where ta friggin hell are yer drawers?'

She too explains, 'You dinna give me enough money ta be able ta affarrd any.'

The Scotsman reaches into his pocket and says, 'Well, fer the love 'o decency, here's a comb....tidy yerself up a bit"!

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My thoughts lately... (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

My thoughts lately...

After having another bad night’s sleeping last night (or not as the case maybe!) I thought I may as well stay up tonight and tell you how things are going.


Not that ‘staying up’ tonight is going to take much doing because I’ve been asleep half of the day! But last night, and probably tonight, I was awake ‘till the early hours thinking about this and that, I was feeling some discomfort from my abdomen. This feels more like pain in those small hours when you have nothing else to think about other than your own worry. Then I finally dropped off at about 4.30 / 5.00am as I can hear all the birds outside my bedroom window chirping their morning chorus and telling me that it will soon be time to get up!

I woke with a start at 6.45 as Matthew, my little boy, climbed into bed for a cuddle which was slightly later than usual. Mandy had already got up and gone out with the dog, I never heard her go and now Matthew wanted her warm space in the bed. After his usual shuffling about I started to doze again nicely until I thought ‘oh cr*p, I’ve got to get up, get showered and get on the road to St Jimmy’s for Friday morning clinic’. I laid there for a moment cursing and contemplating another half hours sleep because I felt so damn tired, but realised as I could feel Matthew shuffling around that it was time to get up. I knew I needed to leave no later than about 7.15 if I was to get their by 9.00’ish, and that’s with no hold ups, which there invariably is going into Leeds at rush hour.

I was on the road by 7.30, not bad for me to shower, get dressed, take my usual massive amount of tablets, grab a mouthful of breakfast and get in the car. Taking the tablets is hard enough but I’ve been changed from Prograf Tacrolemus to Neoral Cyclosporin, ever tried those? Taking ‘Tac’ was easy as they were small, the first time I saw 100mg Cyclosporin I thought it was a suppository, there huge! Anyway, I was on the road and heading to St Jimmy’s more or less on time, which was good considering these days I ‘haven’t got a rush in me’, you know the saying...

It was whilst I was on the way that I thought about what I’d say to the doctors when they asked me how I’d been. This was to be the first they’d seen me since my ‘release’ from hospital two weeks ago. Well, it was fair to say that I‘ve been feeling cr*ppy since I came out, but how exactly? It dawned on me that I seem to feel more like I’m living with the effects of Hep C now than when I was first diagnosed! Fatigue, insomnia, pain in the abdomen, needing to take naps all the time; all the other usual stuff but without that ‘yellowy’ colour. I know I have a brand new liver but I seem to feel worse now than I ever did.

When I eventually got through rush hour traffic and arrived (late) at the hospital, I told all of this to the doctor in clinic and he said that “You’ve just had a major operation and then another procedure because of the complication of a bile leak and that amounts to nearly 6 weeks in hospital – you were also quite anaemic when you were discharged and you’ve lost a lot of weight – It’s going to take time.” When you put it like that, okay, okay, I suppose I’m allowed to feel a bit cr*ppy! Consequently, when I got home just after midday, I felt devoid of energy and had a banging headache and so went straight back to bed. I slept the rest of the day and so I’m awake now tapping away just like the old days before my transplant!

The thing is, up until I ‘bled’ all over the place and was subsequently diagnosed with Hep C, I never suffered (as far as I remember) with any of the usual symptoms and never used to get ill. I never had any pain like I have now. A good thing you’d think, except it’s really hurting me now. The truth was that I was always on the go, working flat out and playing just as hard. I don’t think I had hardly any time off sick in 15 years or so, and if I didn’t start work early it was usually because I had a hangover from ‘working’ so hard in the pubs the night before! Of course then I would feel my liver ‘grumbling’ with disapproval then but that was to be expected, right, Hep C or not?

I think that’s why I feel it’s hitting me so hard now, trying to get going this time seems so much harder. Even when I was first discharged after having my transplant I seemed to have so much more ‘go’ about me. In truth I’m probably feeling the after-effects of the operations rather than the symptoms of Hep C Not to mention the ‘cold turkey’ of kicking the habit of all the ‘opiate’ painkillers I had been on for many, many weeks. Opiates were always a favourite of mine and probably got me into this trouble in the first place. The truth is, even second time around, I never passed up on an opportunity to go without the tramadol or dehydracodeine. Now I recognise that ‘icy’ wind blowing through me and aching ‘flu’ like symptoms of not having them to rely on any more. Not nearly so bad as last time but a poignant reminder of how my life was many years past and the misery of it all!

The other thing is that I’ve been off work now for getting on a year now and I need to think about getting back to it. Problem is, back to what? I can’t go back into the licensed trade, nor would I want to. Cooking with all those sharp knives and my infectious blood doesn’t seem a very good idea either but money is now getting tight, so what do I do? I try not to dwell on that too much, it only makes you worry. Still, when I was a kid I used to back-pack around Europe with no more than a ‘tenner’ in my pocket, no sign of a job but never batted an eyelid. It so much more prominent a worry now when you have others to consider like Mandy, the kids, house, car & that sort of stuff. But I’ve always been resourceful and usually land on my feet somehow – but I do work hard given the chance so I hope I’ll be OK. Just got to get myself through this first – and I will!

Well, the birds are twittering again now outside my window so I’ll probably call it a night. The weather is supposed to be quite good tomorrow so I’ll see if I can rake myself out of my pit in the morning. I said I would take the kids for a small bike ride, which is about all I can manage at the moment, never mind those two with their boundless energy. Emily is 5 and just coming off ‘stabilisers’ on her bike so best get band-aid ready.

Well, there it is; my thoughts lately. I can’t wait to start enjoying life fully again, like I always did, instead of just snippets in between the fatigue and the discomfort of now. But it’ll come I’m sure.

Take care everybody.... Ian

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Back to Square One! (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Back to Square One! (Hepatitis C / Liver Transplant (Hep C) HCV Blog)


It seems like ages since I last sat here and typed a note for my blog. In actual fact, I’m lying in bed with my laptop, much the same as I did before my transplant. Much has changed since then, in fact it's fair to say I'm not the man I once was! At that time I had no energy, no appetite and a jaundice yellowy colour. I didn't know whether I would make it to the top of the transplant list or whether hepatitis C would finally have its way and shutdown my liver and me a for good.

The good news is obviously that I did get to the top of the list, however I find myself yet again with no energy or appetite. When I first came out of hospital I felt on top of the world. I believe now that that was mainly due to the amount of drugs and steroids I had been given following my operation. I thought from there that I would go on to get better and better. I really pushed myself at every opportunity. Even whilst walking the dog I would march rather than walk. I had gone to my local leisure centre to enrol for full use of the gym and had even dragged out my rusting bicycle from the garage!

I felt like I was doing fantastic, we had booked to go on holiday to Center Parcs long before talk of ever having an operation and seeing as how I was doing so well we decided to go. I was warned not to go in the pool area due to risk of infection however I found when I got there that the thought of even leaving my cabin seemed like an insurmountable task. Suddenly it all seemed to be catching up on me. I could do nothing else other than sleep and sleep and sleep. I was forced to return home early from my holiday as both my children had contracted a cold and I knew that in my condition I would be bound to catch it quickly. Once home, again all I could do was sleep. The following Friday I was due at St Jimmy's for my weekly clinic. A friend of mine had offered to drive me to the hospital which I accepted. Surprisingly on the day I woke and felt quite good, probably due to the amount of sleep I had just had. Unfortunately whilst travelling to clinic we were hit by an eight wheeler truck on a roundabout just out of Leeds! Glass smashed, airbags went off and we were sent hurtling down a slip road with the car on its side. The truck struck us in the left hand side of the car, my side. Surprisingly as we came to a stop and the car righted itself on all four wheels I realised that we were both unscathed even if the car was completely written off! After being checked out that the hospital I was allowed home.

At this point I was still feeling good and I remember announcing on Twitter and Facebook that I felt like I was really ‘getting there’ and ‘coming out the other side’ However, within a week my condition seemed to worsen daily until eventually Mandy called the hospital and told them that she thought something was wrong. I was feverish, running a temperature and felt in pain. I was readmitted and found under ultrasound scan that I had a ‘collection’ in my abdomen of fluid. It turned out that my new liver was leaking bile into my abdomen. As I had been given only part of a liver, the leak was coming from a bile duct that would have run from the right lobe to the left lobe. Normally the bile duct would have repaired itself however I believe that overdoing it and subsequent car smash had caused it to stop repairing itself and to start leaking.

A ‘drain’ was put into my abdomen (which was bloody painful) and then I underwent a procedure to place a plastic ‘stent’ in my liver to stem the leak. This was done by putting a camera down my throat, going through my stomach to the liver (again bloody painful). I was then placed on intravenous antibiotics and painkillers and left to my own devices over a very long bank holiday weekend. Fortunately I slept and slept and slept until after a total time of just over three weeks in hospital I was released.

I have now been home for a few days and have realised that getting up and trying to do too much is the surest way back into hospital! People keep telling me to listen to my body but I have realised that my body is a lying sod! It keeps telling me that I'm fine until the point comes when it decides it's just going to shut down without warning! I don't want to eat or drink and have no energy, I can just about manage to take my daily intake of tablets and then all I can do is sleep. Which pretty much leads me back to where I started from, back to square one! Actually I have much to be thankful for, I am alive and can just about kick and have lost my horrible yellow colour! I'm just learning to calm my arse down a bit. I spend a lot of time in bed for the moment but every morning I have my two children crawl into bed with me for a cuddle and a fantastic wife who loves and cares for all of us, and if I ever needed more reason to be thankful to my donor then that is all I need. I still have hep C and will have to address that one day but for now I have all I need.

Thanks to everybody who have written words of encouragement and support and I'm sure in good time I'll get back to you, but no rush, eh!

Keep well everyone... Ian.

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I just met Terry from Cayman (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

I got an email back from Terry and found his blog so I thought it fair that I should introduce him.

Keep well everyone... Ian

http://ramblingsandstories.blogspot.com/

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A letter from Terry (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Hi Folks, sorry it's been a while...

I received this email to my web-site a couple of days ago and I thought I'd publish it (thanks Terry) and my reply to it - it says a lot ..... Ian


Hello Ian,

I too am a liver recipient. Mine was given in October 2008 because I was suffering from end stage cirrhosis. I was ill for three years prior to the operation and very ill indeed for the last three months. As I live on Grand Cayman, my procedure was carried out in the US at Broward Hospital, Fort Lauderdale, Florida.

Hearing of your progress brings back many memories. You seem to be making much faster progress than I did. 3½ weeks after my operation I was in the Respiratory Care Unit (a "Step Down" Unit, half way between Intensive Care and the ward), having spent over two weeks in I C first. Then it was three weeks up on the ward and finally six weeks in rehab.

Now, nearly eighteen months later, I am wonderfully well and happy. I take 1 and then 2 prograf alternately every morning (10 or 11 a week). I take one dapsone ever Monday and that's it.

Just before the transplant I was taking over 50 pills a day!

I also have felt the urge to write. I have started a blog that contains stories and episodes from my life. As I came so near to death - one or two weeks - I am putting in writing some of my memories. There's nothing about my medical experiences yet but I am sure that one day they will appear.

I suffered from, "ICU Psychosis" after the op and had many hallucinations but no nightmares. I confidently told my wife one day that one of my nurses was Gwyneth Paltrow. That surprised her but when Gwynneth appeared, I coughed and nodded at her. After Gwyneth had gone I asked Caroline what she thought. "That's not her," she said. "She is black but Gwyneth Paltrow is white."

"Not when she's nursing," I snapped.

Keep going. My thoughts are with you.

Terry.
 
And my reply...
 
Hi Terry,

Thanks for your e-mail, I've got to say it was the most inspiring message I have had in a long time.

As you can probably tell from my blog site, I haven't posted for quite some time. This has been due mainly to the fact that whilst struggling to recover from my transplant, I haven't had either the energy nor the inclination to write.

I always thought that following the transplant that I would go home from hospital and just keep getting better and better. I know now that this is not the case. I find in some cases you have good days and bad days, but more often you have bad days and worse days. That being said I feel physically as though I have progressed comparatively more quickly than most. However psychologically and emotionally I have found my recovery to be a complete roller-coaster.

I know that after only seven weeks or so after my op that my doctors etc are very pleased with my progress however I tend to feel whilst I am alive, I am not really living. So after reading your story of how long it took you to recover I realise that I am being far too impatient. Sometimes hearing stories about you and Gwyneth are all you need to realise it. A good laugh is always the best tonic.

Please write me back and let me know your blog address, I would love to catch up with you and find out how you're getting on and I hope you don't mind but I am publishing this letter on my site as a precursor to my return to writing and hopefully some more video diaries. This could be difficult as my little boy dropped my camera the other day and smashed it to pieces! Nevermind, I've still got my web cam.

Thanks again Terry and please give my love to your very understanding wife and to Gwyneth if you see her again in whatever guise. I read my e-mail to my wife and it made her laugh so much probably because she related to it so much more than I - God knows what she's had to put up with!

Speak to you again soon and keep well.... Ian

ianquill@hotmail.com  or riosbarandgrill@googlemail.com
follow my blog:  http://www.ianquill.blogspot.com/  (IAN QUILL : MY WORLD)
find me on 'facebook.com' or 'tweet me' @ianquill http://www.twitter.com/

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Home Sweet Home! (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Hi Guys,

Thanks for the support, sorry I haven't been around for a while but I've been away on a quick break for a week. I got lots to tell you all but no energy to talk, but all is good!

Talk to you all soon!

Keep well everyone.... rio!

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My Hepatitis C & Liver Transplant Video Diary

Hi Folks, Number 2 of my Hep C / Liver Traansplant Video Diary! (http://www.ianquill.blogspot.com) Just thought I'd share my morning routine with you, including the medication I'm taking and my progress so far. Plus my plea to ask you to join the organ donation register, follow the link on my blog-site. Keep well everyone.... Ian

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