Cleared

Today the emotional rollercoaster terminated. My test result came back negative - I officially no longer have Hep C. When I heard the word negative at the other end of the phone the sense of relief rendered me numb. It's over - 2 years 3 months after diagnosis, 28 years after infection. I'm healthy, the battle is won.

The right treatment for you

Choosing whether to do treatment or not is a dilemma. My main concern was that I wasn’t ill and maybe never will be, so why inflict my body with powerful drugs?
The turning point came when I realised that Hep C was actually making me ill; the unexplained tiredness, headaches and general malaise could be accredited to the virus. I also couldn’t stop thinking about the virus after diagnosis and an increased awareness of my future health made me all the more determined to try and get rid of it.
When I was offered 16 weeks treatment it was a surprise as the doctor had only talked about 24 weeks and finding the time is always difficult. So I felt this was a more manageable time.
Choosing which treatment type is hard as it boils down to Roche Pegasys 2a, a syringe pre-filled with a liquid form of interferon or Shering-Plough Pegintron 2b, a pen with a dial to calculate the dose - interferon in powder form and water are in separate vials in the pen that are mixed by shaking. It must be pointed out that the pen also has a needle so it’s not an alternative to needle stick. (Both are taken in combination with anti-viral tablets).
I was treated at the Edinburgh Royal Infirmary and they offer Roche Pegasys 2a interferon but I could have used the Pegintron 2b pen if I had requested it.
How do you know which is best?
A study by both companies into the effectiveness of both treatments has shown heartening results that the SVR doesn’t differ significantly between the two treatments.

See abstract from the paper - http://content.nejm.org/cgi/content/abstract/361/6/580

Therefore it’s down to personal preference. I didn’t have any problem with the syringes apart from the caps which could be a little tricky to remove causing the odd breakage. The syringes are smaller than the pens and more discreet to carry and I didn’t have too much bruising at the injection sites. The pens are quite bulky and are not reusable. Pressing them to administer the interferon needs quite a bit of force and could cause more trauma at injection site, but that’s just my opinion.
Both companies have excellent advice on their web sites, well worth having a look at if you are not sure which to go for.
http://www.pegasys.com/about-pegasys/default.aspx
http://www.pegintron.com/peg/application/ (links on right hand side of blog)

These sites offer lots of information and you can see photos of the Pegintron pen.
Before you agree to treatment it is important to know what suits you and that you have a choice.

Take a look

Trawling the internet can be daunting so here are a few sites which I found helpful.
As I live in Scotland they are mostly Scottish sites but hep C knows no borders...

http://www.hepctrust.org.uk/ - the best site of all to begin with

http://www.cplus-lothians.org.uk/ - Edinburgh support group, give these nice people a call.

http://www.c-level.org.uk/ - Glasgow support group, good info here

http://my.clevelandclinic.org - an American site with a comprehensive page on side effects of treatment. Go to "Health Info" and search for Hepatitis C.

http://www.hps.scot.nhs.uk/ - search for "hepatitis c" and look at weekly report for statistical info

http://www.hepcscotland.co.uk/action-plan.html
http://www.hepcscotland.co.uk/- for those who are really interested in what is happening in Scotland

Right as Rain

What a difference a day makes – what a difference every day makes after treatment stops.
Three months ten days post treatment and feeling so much better. Gone are the bouts of fatigue and lowness replaced with energy and zest for life.
It didn’t happen overnight but as each day passed the veils of foreboding and drug induced confusion gradually shed. Admittedly the feelings of elation on the day of the last injection subsided pretty quickly as I realised I couldn’t yet bound up the stairs or concentrate for long periods though the itchiness and sickness disappeared almost instantly. Transition back to normal life – away from the fatigue, aches and pains and depression was more of a gradual progression, albeit in the right direction, but a struggle all the same.
As the months passed the hope and fear of the dreaded Hep C returning lessened as I regained my strength and mind. I feel better than ever before – does that mean I’m cured? Am I healthy for the first time in 28 years? What a thought! Brings a smile to my face - and that’s progress.

I need now to address the subject of depression as this was a major factor for me. Treatment can aggravate underlying symptoms that are already there. I had no history of depression but the diagnosis hit me very hard as I’m sure it does for most. I was prescribed antidepressants one month prior to treatment and my major concern for others about to embark on treatment is that I didn’t receive the professional psychological help that I so desperately needed. My GP, who is very sympathetic, referred me to a psychologist but the appointment dropped through the letter box six months later – after treatment was over! The appointment was cancelled and the next cancelled again. Putting it politely I told them to stuff it, threw the antidepressants away (not recommended) and decided to sort myself out. After two weeks I felt the real me pushing through the fog and gradually rational thinking returned. I should leave it to the experts but I feel it would have made more sense to be prescribed Citalopram earlier in order to adjust before the treatment drugs were introduced. By the time I was well into treatment I didn’t know what was causing the confusion and obsessions and I wasn’t in any state to sort it out myself. Now off all medication positive thinking rules and I can honestly say I’m not depressed, not even anxious about the final result in October. I hit rock bottom and one thing is for sure I’m never going down there again.

I gauged the recovery from fatigue on how quickly I could climb the stairs to my fourth floor flat. A couple of weeks post treatment the ascent was still slow but no longer having to rest on each landing. Even laden with Tescos bags a couple of weeks later I wasn’t out of breath when finally arriving at my front door. Over a month post treatment walking briskly up, then one day about two months post treatment my energy levels must have returned because I bounded up the stairs without any conscious effort. No more excuses – must get back to the gym.

Now to important matters – hair and nails. The rate at which my hair was leaving my head reached alarming levels towards the end of treatment. Having always cursed my thick hair I am now very glad to have it back. A couple of months post treatment it stopped shedding and is now almost back to the thatch it was. Must make a hair appointment…..
My nails are growing long and no longer a danger as all itchiness, and therefore scratching while asleep, gone.

Right as rain then? I suspect I am. Diagnosis is devastating, treatment a dilemma but after making the decision to go for treatment and enduring everything it throws at you, there is a sense of relief and in an odd sense achievement. In Irvine Welsh’s Trainspotting, the protagonist Renton questions why he would want to do a thing like choose life. Perhaps many Hep C sufferers have felt like that at one time, but one thing that seems evident to me on speaking with others who have been through treatment is a desire to embrace life and fulfil some ambition they never thought possible (whether the virus got beat or not). Climb that mountain, run that marathon or simply be happy - choose life.

My Clash hero

I was very moved by Topper Headon's very public account of his treatment. Please take a look:

http://www.youtube.com/watch?v=U2FPH3A11eQ

How treatment was for me

There is no other way than to tell it how it is - treatment sucks. But and this is a big but - it's worth a try. Here is my account of how treatment was for me......

Just after New Year 2009 I started treatment lasting 16 weeks during which I took two ribavirin tablets daily and an injection of interferon once a week. Citalopram antidepressant (20mg) had been prescribed prior to treatment to help me cope. The Edinburgh Royal Infirmary had just reduced treatment time from 24 weeks to 16 after successful trials in Dundee showed sustained viral responses. Luck I guess – not that luck has anything to do with the nightmare I was in but fortunate all the same.

I’m not going to bore you with a blow by blow account so here is a summary of how it went.

The first subcutaneous injection into my tummy didn’t hurt at all and the tablets appeared to have no adverse effects the first week but this was a false sense of security as in the second week I felt literally hammered with fatigue and flu-like symptoms. I also found it hard to concentrate on anyone or anything even forgetting whether I’d taken my morning and evening tablets or not. So bought one of those pill trays that clearly shows if the tablet has been taken. Only week 2 and a wreck already!
I must have been scratching my neck and shoulders in my sleep as I woke up each morning with cuts from my nails which were promptly cut and filed very short – pity, loved my long nails. Early viral response in week 4 which means no detectable virus in blood- it’s working its working!
Getting up in the morning was extremely difficult, could lie for hours – time meant nothing. I rotated the injection sites – right hand side of tummy right thigh, left hand side of tummy left thigh and so on,. The sites stayed very red and itchy. As time went on the injections began to hurt. I don’t know why I had difficulty taking the caps off the needles but managed to snap a syringe in week 6.
I started putting off my morning pill as I had a window of clarity and wakefulness after I got up which sunk away again after the tablet and had to crawl back to bed. The Citalopram antidepressants exacerbated the fatigue, I reckon, so I was sleeping my way through treatment- fantastic wild dreams!
A big factor was that I couldn’t eat. I had no appetite, no taste, felt nauseous – weight down to 50 kilos –normally 58 kilos. I felt ancient, and couldn’t get up the stairs to my fourth floor flat without rests!Memory was hopeless (I can write this as I kept a diary). I had no interest in books, television, other people – sank into my own twilight world.
I managed to tell myself I wasn’t going mad, just suffering from a drug induced state, so by week 9 I made a huge effort and started functioning for short periods of time through out the day. I knew my limitations and met friends or shopped which helped my state of mind and cheered me up a bit. I was told I was looking well so couldn’t be so bad, I supposed.
Skin remained very itchy and hair started falling out – the car seats were covered in blonde hairs! As I have very thick hair it wasn’t noticeable but upsetting all the same, especially as I gathered handfuls of it out of the shower plug.
My head sometimes felt it was going to burst and so so dizzy. Anxious feelings and depression came and went with irrational thinking – definitely not a good time to make decisions.Drank liters of orange juice, and fruit was all that I could swallow.
In week 15 my neutrophil counts plummeted which meant my immune system was weak so had to miss out an interferon injection and administer 2 injections of Filgraston over 2 weeks to boost the white blood cells. Thank God this happened at the end as this can make treatment not so successful when the body doesn’t cope anymore.
Week 16 – treatment completed. Off the drugs and immediately started to feel better. Appetite gradually came back and itching stopped. Feeling of lowness still lingered, but much perkier and stronger every day.
My attitude is – I’m cured. Won’t know for sure until November 2009 and some side effects are still lingering such as thinner hair and low weight. I still feel bit low (no more antidepressants for me) but I have been assured that in time I’ll get back to normal – whatever that is!

The Edit

Oh well, it's a learning experience. This is what they did to my article - hope the message still gets across!

Help at hand for Hepatitis C
"It’s a terrible shock to be told that a potentially life-threatening virus has been lurking in your bloodstream for the past 25 years and that for all those years you’ve been a risk to other people."
That was how an individual with Hepatitis C in Fife described finding out she had the condition, which was diagnosed after she offered to donate blood.
Hepatitis C is a blood-borne virus that can only be passed on by blood-to-blood contact. The virus attacks the liver which can lead to cirrhosis
The patient talked to C-Plus, a charity in Edinburgh that offers support to people affected by Hepatitis C, and was reassured that it is possible to be cured of Hepatitis C.
She opted for treatment and in January began a course of interferon injections every week and daily anti-viral tablets. With only a few weeks left to go and initial blood tests showing that virus is beaten, time will tell whether the virus is gone forever.
Thankfully all her family tested clear – but she added: “I would urge anyone who feels they may have been exposed to blood-to-blood contact, no matter how long ago, to contact a support agency for pre-test counselling and to consider getting tested."

To arrange a test, contact your GP or one of the following services:
UK Hepatitis C info Line 0870 242 2467
GUM Clinic:
Kirkcaldy 01592 643744
Dunfermline 01383 624079
BBV Clinic: 01592 643355 ext 8624

Fifelife - Summer 2009

Better the devil you know...

To kick off with...here is an article I wrote recently for a Scottish newspaper.

They say your past eventually catches up on you – and that it often happens when you least expect it. It was a terrible shock to be told that a potentially life-threatening virus had been lurking in my bloodstream for the past twenty-five years and that for all those years, I’d been a risk to others – well, it’s the stuff of nightmares.

In the summer of 2007, I had made the decision to dedicate the future to me. I had brought up a large family and finally had the chance to start a career that didn’t involve the juggling and complications that family life demanded. The future looked bright. I heard on the car radio an appeal for blood donations & decided to donate, even producing a certificate to prove that recent acupuncture treatment had been done under the strictest of hygiene standards. The next day, over the telephone, a kindly voice from the blood bank urged me to come back straight away. I wasn’t overly concerned; after all, what could possibly be wrong? I believed I was perfectly healthy – I led a healthy lifestyle, didn’t drink much alcohol and didn’t smoke.

The doctor in charge, gently but gravely, broke the news that I had hepatitis C – a blood- borne virus that can only be passed on by blood-to-blood contact. The virus attacks the liver which can lead to cirrhosis though this may not become evident until 20 or 30 years after infection.

My initial reactions were of shock, denial and anger. I wanted to walk out and pretend this whole awful thing hadn’t happened – but of course I couldn’t. Thoughts of who I could have infected raced around my head. My children, my husband – they had been at risk all these years. How easy is it to transmit? How was I going to tell them? Was I going to die?

The doctor tactfully asked me to think how I could have been infected. Had I ever had a blood transfusion, tattoos or piercings abroad, injected with shared needles? He stressed, however, that it was not important how I had contracted hepatitis C but to address the present and decide how I was going to deal with it.

The next few weeks were consumed with extensively searching the internet. The information out there was conflicting and worrying. Stories of failed treatments left me more confused and bewildered than before. My GP advised me to forget about the diagnosis and get on with my life but this conflicted with the advice from the specialist doctors at the Edinburgh Royal Infirmary who advocated treatment right away. I learned that the treatment itself could have unpleasant side effects so I wasn’t wholly convinced. My liver tests were normal so why should I take a course of interferon injections which as far as I could see would make me ill?

Worried & confused, I sought help from elsewhere. I talked to C-Plus, a charity in Edinburgh who give support to people affected by hepatitis C. I quickly realised I wasn’t alone and by going along to a support group I met others in my position, heard their experiences and was reassured that it is possible to be cured of hepatitis C. And even if untreated, there was positive advice on how to live with hepatitis C. So I decided to take the plunge and try and zap this nasty little virus once and for all.

There are different genotypes of the virus and mine is genotype 2 which requires shorter treatment than genotype 1. In Jan 2009 I started treatment which involves an injection of interferon every week and daily anti viral tablets. The treatment hasn’t been as bad as I feared, fatigue being the main side effect. With only a few weeks left to go and initial blood tests showing that the little devil is beat, time will tell whether the virus is gone forever.

Charities like C-Plus support your decision (either way) regarding treatment and offer invaluable help, advice and counselling. Once I had opted for treatment, the support from the specialist nurses in the hospital was tremendous. This support is crucial in dealing with all the different aspects such as social and medical problems.

Thankfully all the family tested clear which perhaps shows that apart from the aforementioned sources hepatitis C isn’t that easy to catch after all. However, I would urge anyone who feels they may have been exposed to blood-to-blood contact, no matter how long ago, to contact a support agency for pre-test counselling and to consider getting tested. Being aware of the risks and the simple precautions that prevent the spread of the virus may save your life, if not someone else’s!