Time goes by so slowly...(Hepatitis C / Liver Transplant & Biopsy (Hep C) HCV Blog)

Monday, 31 January 2011

Well... It just aint been happening for me at the moment folks, which is damn frustrating!


If you haven't already picked it up via twitter or facebook, I didn't get to have my biopsy but just a rather expensive and annoyingly frustrating kind of a week.

As I said on my vid, I was due to go in on Tuesday - Fantastic. So I got up on Tuesday, pumped up and ready to go, dashed around a bit because on that morning I had an interview with a recruitment agency. That went well and as soon as I came out I thought, seeing as I was in town I would do a little retail therapy and hit the shops. I wanted to get myself a wireless internet 'dongle' so that I could keep in touch with the world whilst I was in hospital.

Many of you who have spent time in Hospital will know what I'm talking about when I say I feel so cut-off when I go in to these places, especially for something which you feel is routine or seemingly straight forward and then suddenly turns into a marathon 'staycation'.

If also like me, you use St Jimmy's specialist liver unit, you'll know there are no TV's on the wards. Now I know the phone signal is patchy inside the Hospital but, being a Vodafone customer, I have found that generally speaking I can get a signal. So I headed straight for the Vodafone store and re-emerged 20 minutes later with said item and £20 quid lighter, excellent. Now all I needed was to find was a 'vanilla slice', a cappuccino to go and my retail fix was done, cool!

Ok, once I got home I decided I would put an update on my blog. As my typing is still painfully slow even after all these years of using a keyboard, I decided the quickest way (and as Mandy and the kids were at work and school) was to use Mandy’s' laptop which has a webcam and post a video diary update. (http://youtu.be/vviKROJXEa8)

Ok, so after that I just had to load my 'dongle', pack and soon as we'd had tea and got the kids to bed at 7pm, I would get gone.

The reason for going in the evening before my biopsy was scheduled was to get me into a bed, get some blood taken out of me for tests, put a 'venflon' put in (see image) and then make sure I was 'nil by mouth' from midnight onwards.

Great, so I arrived and everything was going 'swimmingly' until a doctor came round and after 'blowing' a vein in the back of my left hand (not her fault, it's easily done!), we got onto the subject of medications and what drugs I was prescribed. As soon as I told her that I was on Warfarin for a clinical trial, we both realised that having a biopsy was not going to be an option! Goddamit!

I kick myself as I should've realised that taking a drug that thins your blood would probably help you bleed to death when they started trying to 'spike' you to take a peace of your liver away for examination - Warfarin stops your blood from 'clotting'! Ouch! Apparently I should’ve had a letter telling me to stop taking it five days prior to attending. I can only assume that as the study is being carried out by the Imperial College, London and not St James Hospital that it was an oversight and didn’t get sent. This was reaffirmed by the doctor who had no knowledge of my being on the study - bugger.

So after that I was told my bloods would be checked and then could go home in the morning once a new biopsy had been booked. Well, at least I got to check that my dongle worked OK! And I spent the next few hours chatting to guy in the next bed who had recently been 'transplanted' and consequently was still on high doses of meds - he babbled intensely and will probably have no recollection of ever meeting me but I hope I reassured him at the time that he was gonna be OK and was in safe hands. I know his situation only too well!

Next morning I was given a bowl of cornflakes and a cup of insipid tea and informed that my 'bloods' were fine and a date set for the following week to do it all over again! After hanging around to get my venflon taken out, I was released and went down to the main reception. As I'd driven myself in and parked my car in the hospitals' multi storey, I found the pay-parking machine and popped my car parking card in - £15.90!!! Yeas, I'll say that again, 15 bloody ponds, 90! To park overnight for something that didn't happen!!! Bloody Hell, I won't be doing that again.

So after running around the hospital to find a cash-point that worked before the price went up any further, I grabbed a Cappuccino to go to try and get rid of the very bitter taste in my mouth.

So that was last week in a nutshell. I was hoping to get the biopsy out of the way so I could try and make some decisions on moving forward. So many questions at the mo and I can feel the clock ticking away in the background all the while, bloody hell, it's like banging your head against a brick wall sometimes. This damn thing keeps stopping me every time I get started. Ho-Hum, we move on.

I did get some good news; both agencies I had signed on with came back to me with some possibilities of interviews. One fairly well paid but in London (which I'm not opposed to) and one not so but staying here (which is also good). Now I just need biopsy results so I can make a decision on what's best to do!!!

Watch this space, we'll try again this week - I go back in on Tuesday 2nd.

Take care everyone... Ian

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My Hepatitis C / Liver Transplant & Biopsy Video Diary

Tuesday, 25 January 2011

Hi folks, Just thought I'd post this before for I go back in to Jimmys' for a Liver Biopsy after my 1st year with my new Liver!



happy birthday to me, happy birthday to me....

Take care everyone.... Ian

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Guest Blog by Eva Day (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Tuesday, 11 January 2011

Treasures (recovery after EOT(End of Treatment))
by Eva Day

This is for everyone on treatment, and those recovering . the poem describes the sense of hope the first time that we really began to notice definite signs of recovery. for me this was over the last week, two months after End of Treatment and following a fairly grim period of limbo land, sickness and fearful disappoint.


The first few days after a turning point when you just begin to feel ... more human again ... can be bitter-sweet, tentative yet -hopeful. bitter-sweet because as you emerge into light, the shadows are still there with you. imagine coming out of being stuck inside a very small box for a very long time. as you begin to expand and stretch your muscles - it hurts and is a little bit scary too. how to trust life and your own body, now? one gentle step at a time..... and holding a vision. friendship helps, too, from those who understand..... much love, eva day. xxx


Treasures.

this is a new day,,, now this is my time….. the battle is done, the dragon is slain… new hope will unfold
you took so much,,, viral invader, it took so much. One step at a time, each weary day, when hep c took hold:

invaded my blood, swallowed my life, I fought to reclaim it, the harsh treatment is done and I am so tired,
now the road ahead is unknown, a new fight begins, I release and seek for the treasures to help me feel inspired

mind and body depleted, but strength of spirit is mine, and patience, courage and friendship will be my guide
yes I am holding a vision of healing as I move through the fear into gentle recovery, but I’m still hurting inside

my dragon fighting tribe, my circle of friends who travelled this hard road along with me, they understand
that I am not fine yet, but, as I reached the finishing line, and friends there met me, each offering their hand

to help me on to new solid ground, and belief that with time and in peace, I will rebuild good living and flow
thanks to my companions, who lived and fought with Hep C, we move beyond surviving, we thrive and grow.

Eva day.

I wrote another poem, the same evening as this one, about friends we knew or lost along the way - especially those who could not win the battle to survive the virus. if you want to see it, I have posted it on the documents section of Hep C social group page - called SofaSpace. (if interested and want an invite to hang out there, just let me know, lots of good stuff there and most importantly - good folk. )

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Wisdom from the Dalai Lama (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Monday, 10 January 2011

Learning is the first step in making positive changes within yourself. Other factors are conviction, determination, action and effort. Learning and education help develop conviction about the need to change and increase your commitment. Conviction then develops into determination. Next, strong determination leads to action: a sustained effort to implement the changes. This final factor of effort is critical.


Wisdom from the Dalai Lama
with special thanks to Zephyr Rose

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For 2011, Revalations AND Resolutions (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Monday, 3 January 2011

Wow! Ya know, one of the best things about blogging (for me) is that it's a bit like keeping a diary! As with a diary, when you need a little inspiration, you can look back over some of your old stuff and very often you can sometimes amaze yourself. And that has just happened to me.

Like many people, a new year gives you the chance to clear the decks a bit and start to look forward and try and form 'a plan'. Ya know, out with the old and in with the new kind of stuff and it was for that reason that I decided that I would look back at how I felt at this time last year. I've got to say, it felt almost like reading someone else's blog but with whom I could really relate! A different person entirely but I could see that he was dealing with the predicament he was in, in much the same way as I would. ‘He’ was of course desperately waiting for a Liver Transplant and Hepatitis C was ruling every aspect of his life.

And that's it. That's the 'nail on the head' I've been looking for. Suddenly, for a brief moment the shroud was lifted and I could see what I was floundering around looking for. Who am I now? Not the person I had become, after experiencing the roller coaster ride that my life had always been, but the REAL ‘Brand New Me’ since I received a full liver transplant and now was ‘master’ in his fight with virus.
No, not the guy I thought I was when I wrote ‘Brand New Me’, not the guy I thought I would become when I wrote ‘Gentlemen, We Can Rebuild Him’ But the man I now see everyday in the mirror and like I said, wow, he’s a very different but very recognisable chap at the same time.

I suppose the seriousness of my situation for the last couple of years has knocked the child out of me and maybe now those very same things are helping me find him again. In a strange kind of a way, I feel like I’ve been reset to a ‘default mode’. The guy I was before life got in the way. More childlike, maybe, but now that I’m starting to recognise him again, I seem to be getting more and more comfortable with him.

I’d like to say it feels totally great, setting out on a new road into the unknown, like I have so many times before. But this time around, understandably, I’m going forward with some trepidation. I realise that now as I sit here and write but am aware that again, going forward can only be better than where I have come from.

As a younger man, I lived and worked abroad for many years, following the seasons and the tourist trail as I travelled and tried to earn money as I went. It was great fun and one big adventure but like everything, it had its downsides too. I can remember, as each season was drawing to a close, how down I would feel. All the great people that I had met, I was now about to say goodbye to. No matter how great the intentions of staying in touch, I knew that for many of them, this would be the last time I would see them. They, like me, were backpacking on their own journeys of (self) discovery although for me it was a journey of rediscovery. This had been brought about by a brief, but what later turned to be a devastating foray into the world of drugs and addiction.

Again, we were all getting ready to depart for new destinations and new adventures. For me, even though I knew it was an inevitable conclusion to another happy chapter, I always faced it with a heavy heart. It was as though it was period of pre-grieving for what I was about to lose until I could finally square it in my head. Then, after the final leaving party and the hangover had lifted, I would pack up my kit and set out on the road with a renewed lust for adventure. For sure I worried at points, setting off into the great unknown, but these worries were far out-weighed by the myriad of possibilities that lay ahead.

So, where does that leave me now? For sure, I can’t just pack up and move on like I once did. I have my family to consider and they are one of the few things that have kept me grounded and sane through all the turmoil I have been through. But I still can try and get back to the naive joker who was creative, laughed a lot, cared a lot and had a sense of adventure; back to my ‘default setting’.

And so that’s it, that’s my revelation which leads me to my resolution for this year and the first that I have been able to plan for sometime. Somehow, I’ve got to ‘shoe-horn’ that into my life in a way that fits with my family and financial constraints. I definitely need a job of some kind, something that I can get my teeth into and will hopefully benefit others. But definitely not a job that was as all consuming as my last one, which ended up ruling my life. I need to ensure that whatever I do it leaves enough time for my family but also leaves time to allow for some kind of creativity.

If my experiences so far can take me to fulfil this first resolution of what I hope will be many then maybe it will not all have been in vain.

Have a Happy & Healthy New Year Everybody…. Ian

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Happy New Year! (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Saturday, 1 January 2011

Have a Happy & Healthy New Year!

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What Is Hepatitis C?

Hepatitis C Information:

Hepatits C is a blood-borne viral disease which can cause liver inflamation, fibrosis, cirrhosis and liver cancer. The Hepatitis C virus (HCV) is spread by blood-to-blood contact with infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide. It is the leading cause of liver Transplant...

Hepatitis C is an inflamation of the liver caused by infection with the Hepatitis C virus is one of the five known hepatitis viruses: A, B, C, D & E. Hepatitis C was previousley known as non-A non-B hepatitis prior to isolation of the virus in 1989.

Symptoms of Acute Hepatitis C:

Acute Hepatitis C refers to first 6 months after infection with HCV. Remarkably, 60% - 70% of people develop no symptoms during the acute phase. In the minority of patients who experience acute phase symptoms, thet are generally mild and non-specific, and rarely lead to specific diagnoses of Hepatitis C. Symptoms of acute hepatitis C include decreased appetite, fatigue, abdominal pain, jaundice, itching and flu-like symptoms.

Symptoms of Chronic Hepatitis C:

Chronic Hepatitis C is defined as infection with the Hepatitis C virus persisting for more than six months. The course of chronic hepatitis C varies considerably from one person to another. Virtually all people infected with HCV have evidence of inflamation on liver biopsy however, the rate of progression of liver scarring (fibrosis) shows significant inter-individual variability.

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