Living Without HepC

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.

I found this somewhere or other on the net (can’t remember or I would give a proper acknowledgement…..)

There are two days in every week about which we should not worry - two days that should be kept free from fear and apprehension.
One of these days is yesterday with its mistakes and cares, its faults and blunders, its aches and pains. Yesterday has passed forever beyond our control. All the money in the world cannot bring back yesterday. We cannot undo a single act we performed; we cannot erase a single word we said. Yesterday is gone.
The other day we should not worry about is tomorrow with its possible adversaries, its burdens its large promise and poor performance. Tomorrow is also beyond our immediate control. Tomorrow’s sun will rise either in splendour or behind a mask of clouds - but it will rise. Until it does, we have no stake in tomorrow, for it as yet unborn.
This leaves only one day - today. Any man can fight the battles of just one-day. It is only when you and I add the burdens of those two awful eternities - yesterday and tomorrow- that we break down. It is not the experience of today that drives men mad - it is remorse or bitterness for something, which happened yesterday and the dread of what tomorrow may bring.
Let us, therefore, live but one day at a time.

This reads like a fitting philosophy for modern-day living. It is also the message which Tibetan llamas have been teaching for centuries, that meditation aims to achieve and that many therapies, such as Person Centred Therapy implemented by Carl Rogers decades ago, are based.

When ideas from different disciplines and philosophies coincide and speak a common message, that is surely the hallmark of a universal truth.

This message is for regular readers of this blog, for those who have arrived here looking for my Hepatitis C Forum through a search engine or a link from another site.

This is an explanation why your link has not gone through to the Forum.

I cannot support or advocate the sudden and radical change of management style and approach to running the Forum implemented this week by its new owners. It is fundamentally different to what we agreed when I passed it over to their safekeeping. So, it’s not the Forum I know and cannot with integrity provide any link to it via my name.

There is a very curious article produced by the BBC today on their BBC News Online site. It is headed Hepatitis C Drugs Provide ‘Cure’.

It follows a Press Release from VCU (Virginia Commonwealth University) that Hepatologist, Mitchell Shiffman, M.D., professor in the VCU School of Medicine, and chief of hepatology and medical director of the Liver Transplant Program at the Virginia Commonwealth University Medical Center, presented his research following up patients to the 38th annual Digestive Disease Week conference in Washington, D.C last week.

The article leads off in bold saying:
People infected with hepatitis C can be cured with existing treatments, researchers have discovered.

What is curious about the article is that it has been known for some time that people with Hepatitis C can be cured with existing treatments. I myself successfully went through treatment in 2004/2005. The BBC did an interview with me during my treatment

At a post treatment follow-up (nine months after successfully completing the treatment) my Consultant Hepatologist advised me there would be a less than 1% chance of the virus recurring and I was duly discharged from hospital care. That was in 2006.

While I am pleased that the media is conveying accurate information about Hepatitis C it is somewhat misleading to present all this as ‘breaking news’ when there has been a good rate of outcome on treatment for some time now.

The only new element in this material is the use of the word “cure”. After seven years tracking 1000 patients someone has decided to shift from the cautious phrase “cleared the virus” to using the word “cure”.

This shift in terminology is the ‘breaking news’ - emphasis on this aspect would have made the BBC article stronger and more accurate news. And not using parentheses around the word cure in the headline would have demonstrated that ‘they got it’. As well as contacting The Hepatitis C Trust, it would have been useful to also hear from the British medical establishment to ascertain if they have accepted the news that this research now justifies the use of the term “cure” in describing the successful outcome of treatment.

So is it official then? Can I describe myself as cured of Hepatitis C?

Great conference and getting better each year. The NHCN is now on the map and establishing itself as a stakeholder in the UK Hepc world.

Over the two days there were speakers from The Hepatitis C Trust, the British Liver Trust, HepC Resource Centre, the NHS and the Peacock Project.

A panel of representatives from the above organisations shared the platform and along the way referred to the possibility of a cohesive network of hepatitis c organisations working in tandem. Exciting possibilities there. For example, the notion opens the doors for projects – like the British Liver trust’s current work on developing a model for patient support groups, to be shared and co-worked in conjunction with the other organisations rather than just stamped with their own brand. A model for all hepc support groups, developed and led by British Liver Trust and underwritten and supported by all hepc organisations.

Are the organisations ready to work in tandem and in partnerships? There are some budding collaborative partnerships already – the Face-It Campaign and The Hepatitis C Trust have jointly produced information packs for the Asian community. Good stuff. That way everyone is not re-inventing the wheel.

A brief rundown of the speakers:
Dr. Niccie Rowan of the Hep C Resource Centre outlined comparison between the Awareness Campaigns in Scotland and England – with Scotland perhaps benefiting from a later start and lessons learnt from the UK campaign. As Ross Holden, Deputy Chair NHCN, later pointed out the UK campaign has vague objectives, no timescales and no one to hold to account for the outcomes.

Siobhan Fahey, Specialist Nurse, talked about the successful support group run by the Peacock Project and its power. She referred to the growing power of having patients accompanying a nurse to negotiate service plans in the NHS – giving the nurse increased political power and clout in the discussions. Patient power is a good thing but will it become the only way to ensure professionals do provide the services they have the responsibility to provide? That becomes patient policing. Ach, that’s a long way off in the future and not worth worrying about yet.

Sara Cole acknowledged the British Liver Trust’s absence from the HepC scene over the past few years and talked about her recent work surveying needs and views on support groups for liver disease patients. The survey looks at all types of support, issues and practicalities. They plan to produce a ‘how to’ manual and types of support programmes for group leaders and levels of affiliation with the British Liver Trust.

Joy Millward from The Hepatitis C Trust is a parliamentary lobbyist. She outlined the intricacies of furthering the HepC cause in the parliamentary world (such as EDM’s, Early Day Motions), delineated the value of patients writing to their MP’s about HepC issues and described the work of the All party Hepatology Group.

Dr Michael Ashton gave a very personal account of his own journey with hepC treatment following a needle stick injury. This has given him a very subjective and sympathetic view of the patient’s experience of hepc. And an avid interest in the issues around how needle stick injuries and hepatitis c infected medical staff are dealt with in the NHS.

Over the two days most of us at the conference were delighted to identify and meet virtual friends and acquaintances from the Hepatitis C Forum. Several times I heard people exclaiming how they found people in reality different than their perceptions online.

Nick and Vicky paddled like mad to make the whole conference glide gracefully along. Their efforts were noted and appreciated. They have worked terribly hard and it paid off.

Michele took pictures of everyone.

Richard Irvin did some auricular acupuncture in his workshop, Martin Bolton talked about support groups, Ben Casperz very professionally worked the crowd in his workshop on working with the media. And HepCBoy revealed himself to be more than the sum of the parts of his online persona. Workshops were also run by Julian Winter and Sarah Cole (I think I’ve mentioned all the workshops)

And Janie showed she still has something to say on most things and does. And Gary looks well.

The conference was sponsored by Roche and Schering-Plough. As Ross thanked them in his closing comments I was aware that we have moved on these days to accepting the presence of the pharmaceutical companies without the hostility and suspicion we used to see in years gone by. They don’t try to influence the activities of the NHCN. But they too want to see the HepC community better organised - it’s in their interests too. It’s an alliance that seems to be working comfortably.

About 80 people showed up for this event but I’ll wager this number will increase next time around. NHCN is on the map.