Time for a refresh I thought, so out with the old look and in with the new.
Many thanks to Ben. As usual it took him two minutes to do what I had spent hours trying to begin. That’s why he’s a consultant developer to MySpace in Los Angeles and I’m not.
And time for a new title – and some other changes. One step at a time …
If you’ve landed here looking for my online diary of Hepatitis C treatment, click on the links below.
You can read it in two different formats - so choose which you prefer.
1. The original Blog format - written in reverse chronological order (ie - most recent entry at the top of the computer screen)
2. Book format - where the entries are arranged in chronological order
Good news! I have now completed the 48 weeks and successfully cleared the virus. I have achieved SVR as they say in the HepC world – Sustained Viral Response. SVR means the virus is undetectable in my blood each time they test it. The testing procedures are able to detect “down to” less than 20 copies per million. Until the tests are developed to detect down to 0 copies per million no one can be labelled “cured”.
That means there is a less than 1% chance that the virus is still there lurking and hiding. But, hey, there is a 1% chance that anyone walking about in the UK has the virus without knowing it, so I reckon my chances are about the same as anyone else out there.
1. BLOG FORMAT
Click here to read the blog in original format from the beginning…
When you click on the link you will be at the first entry. Read from the bottom of the page to the top and navigate to new pages following the Next Entries < < or > > Previous Entries hyperlinks (in light blue) at the top and bottom of the current page. Then use the Archives to open each months entries, clicking < < Previous Entries and scrolling to the bottom of the page to get to the first entries of the month.
2. BOOK FORMAT
Click on the link below to download .pdf file.
My Hepatitis C Treatment Weeks 1 - 48
You will need Adobe Reader to open .pdf files. 
(Get a free download copy from Adobe.com)
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on THURSDAY 6th DECEMBER 2007
Pauline Hennessey of the UK Hepatitis C Resource Centre recently sent me an email about this conference.
This event is FREE for anyone living with Hepatitis C. Friends, family, carers and professionals affected by hepatitis C are also welcome.
The event offers a series of talks from nurse, doctors and local agencies to give an update and overview on what is now known about Hepatitis C, its treatment, support, care and well-being for all concerned in layman’s terms. This event has played an important role in the past as it allows people to come and meet others living with Hepatitis C, listening to experiences and tips they have living with or overcoming the virus. Afternoon workshops on the day are chance to ask questions or simply listen to items of most interest.
A full programme and more information can be found at the UK Hepatitis C Resource Centre website
I am really sorry I cannot attend this year. Carol and I are going to attend some teachings from the Dalai Lama which we had booked months and months ago.
The first year I attended this event however stands out in my memory very vividly. I had been diagnosed for a few months and was still reeling with all it means to find out you have a serious illness. To spend the day with hundreds of others who have the same diagnosis was very special. I was not alone. I learned more about the virus and living with it - and met people who were going through treatment. It was a very powerful experience. So this event is one I would recommend to people.
The technical problem in the background (in the back room?) has been sorted out and I am really pleased and relieved to say my blog is now back online. It was something to do with the dials and settings on the computers where my “ISP provider” has their servers (London Docklands? New York?) and after much head-scratching and ‘instant messaging’ it has got sorted out.
I have really missed being able to access my blog for the five weeks or so that it was problematic. And I felt increasingly frustrated about it. What is odd about that is – I haven’t really posted anything new since July and before that, well, May really. I haven’t exactly been an avid blogger so how odd to miss the access.
That got me thinking. This blog was set up to make a record of my treatment. And I have done that. And it does what it says on the tin (as they say). When I finished treatment I realised it wasn’t “all over” - my post treatment experience was also relevant to record. But I did get to the point of feeling “I am no longer a patient with Hepatitis C” and it was time to move on and move away. That was certainly my thinking when I returned to work fulltime and when I decided to hand over the ownership and running of my Hepatitis C Forum.
So how come I miss the blog? People have been emailing me and asking if I am alright because my blog is offline. I have been asked why I have cut back on blogging. I replied that I’m not sure I have much to say these days as I have been SVR for two years now. But it’s obvious there is still a connection there between me and others and it is still Hepatitis C which is the common ground. It has been really useful to have the five week “blip” to bring home to me that I too miss that connection.
And it makes me think about it - I haven’t moved away completely from Hepatitis C, despite making a fulltime commitment to work and handing on the Forum. I have recently written some newsletter articles for Roche’s twentyfour7 programme. At the moment I am working on the results of the Post Treatment Survey for the Hepatitis C Trust. I have been talking to people about publishing my blog in book form and discussing other book ideas too. I am in email contact with a US University School of Medicine academic discussing our mutual interest and experiences of Online Health Communities as a course for students.
Rather than moving away completely I think I am just moving in a different direction. And the blog I guess will need to reflect that. I feel strongly I don’t want this to become a “cobweb-site”. It isn’t finished yet. I don’t know what I want to say yet but it’s obvious I still have something to add to the debate and knowledge-base about Hepatitis C. So I’m back to blogging. And I’m glad to be back.
I still get liver pain – regularly and fairly frequently.
I first experienced this pain shortly after I was diagnosed five years ago. At first I thought I was just imagining it or was just ‘favouring’ my liver now that I was aware I had a serious illness. When it began to occur off and on over a few weeks, I accepted it was actually because my liver was ailing. Then I became frightened about it. Surely something serious was happening, confirming my new fears that I would die of this disease. When I finally managed to speak to someone in the hospital (my first clinic appointment hadn’t taken place yet) they were less than concerned and I was somewhat reassured by their indifference to my new pains.
It has now been 21 months since I completed 48 weeks of combination therapy treatment. And 31 months since I cleared the virus (in Week 12 of my treatment). There is no inflammation in my liver - according to my regular Liver Function blood tests. My ALT (an enzyme secreted when the liver is inflamed) is at level 17 (normal is 0-40). It has been this sort of level consistently since I completed treatment.
However, at times I experience a dull ache in my liver area. Other times I sense a sharp pain that comes on quickly. The whole area can become tender to the touch. This doesn’t happen every day - but several days a week.
I was concerned enough to discuss it with one of the GP’s at my surgery practice a few months ago. She expressed some surprise at how tender the whole area was to the touch. She arranged a sonar scan as I wanted to rule out the possibility of liver cancer. She said she doubted that there is cancer but was agreeable to eliminating this as a possibility. I had the scan the day before I went to the US for a month. The scan technician said there was nothing to worry about, so I haven’t been back to the GP – to be told the same thing. (And I am assuming if the final report contained something concerning the GP surgery would surely contact me.)
So, medically checked out - no liver cancer, no inflammation, no obvious explanation for my experience. It’s something I now live with. I don’t have Hepatitis C but I still have some of the trappings.
It’s also something that people who do have Hepatitis C live with. It is a symptom common to many. A good number of people speak of experiencing pain in the liver area. Various people have described it:
• like an ache located from the upper right hand side of the body through to the back shoulder blade
• like a pulled muscle that never goes away
• Sometimes it’s more noticeable than others and when it aches I get tired
• like having my ribs pinch the inside of skin and the only way I find comfort is to stand and walk around.
• I did not realize where this pain was coming from until I had my biopsy
• a gripping sensation or ache on right side for over 10 years
Most doctors will tell say you can’t feel pain in your liver – there are no nerves to feel pain. Someone’s doctor, however, added there are two nerve endings in the liver, one of which goes to the right shoulder. (Pain in the right shoulder is often reported after a liver biopsy)
The GP I saw recently acknowledged that liver inflammation can cause discomfort which can be experienced as pain. That my liver is not inflamed and yet I experience an ache or pain is a mystery to the GP. And me.
But there it is. One way I try to deal with these aches and pains. I regard them as ‘growing pains’ that indicate my liver is healing and re-generating. It’s better (healthier) to focus on a positive rather than a negative thought.
If you experience an ache or pain in the liver area it is of course something to bring to your medical team’s attention. But like me (and others) you may not get a reassuring and certain medical response. This can lead to varying amounts of worry and anxiety. I am writing my thoughts and knowledge on liver pain today to say you are not alone in your experience. While that won’t make the aches and pains go away I hope it is of some reassurance that it is a very common Hepatitis C symptom.