Day 14 (31 May 07) Jon's Hepatitis C Treatment

Had a good, comfortable night. Was out working late last night so got up later today. Got into work late morning. A busy day, but I did not feel overly tired until I got home. Had my third injection of Interferon - everything went well - followed by the usual three Ribavirin tablets. Then I went straight to sleep about about 10.45pm. Woke up about 2.30am and couldn't get back to sleep for about 45 mins. Did yoga breathing exercises and eventually drifted off.

Day 13 (30 May 07) Jon's Hepatitis C Treatment

Got up earlier today as I had a hospital appointment at 9.15am. This is my first proper consultation since the start of my treatment. Light traffic (due to it being half term holiday) meant I arrived earlier than intended - but then parking is always hell round hospitals.

Routine weight check. My weight has dropped a couple of kilogrammes since two weeks ago - I've been warned to expect to lose about half a stone in weight during treatment.

My consultation was with the excellent specialist nurse and we discussed how it is going. She explained that the initial internal battering was a one-off and to expect more of a plateau but to feel gradually more tired.

A desktop computer malfunction meant that I couldn't see if there has been any viral load drop - but I wasn't too bothered as it would have only registered the few days after my first injection as it would have been based on last week's blood test. I have another consultation in two weeks time and so will see a more comprehensive picture then.

We discussed how there has been a shift in Hepatitis C treatment linked in with the National Institute for Clinical Excellence (NICE) revised treatment guidelines issued last August. Whereas before the emphasis had been on containment, now there is more of a push to eradicate the virus. So in my region, if any one diagnosed wants treatment they will get it.

There are about 40 Hepatitis C patients currently undergoing treatment in my hospital, which is a smaller one. Waiting times are good - I had to wait about two months after my consultant had agreed to treat me on the National Health Service. With some larger hospitals you can wait 10 months or more to start treatment after that treatment is agreed.

So I can expect a sort of plateau while gradually getting more tired. That could make for boring blogging for a while but I am determined to document my treatment day by day.

Day 12 (29 May 07) Jon's Hepatitis C Treatment

Back to work. Had a good seven hours sleep - more itching but no sweats. Woke up feeling fine.
Am feeling more tired (leaden, in fact) by the end of the day, so get to bed as early as possible these days.

Day 11 (28 May 07) Jon's Hepatitis C Treatment

Bank Holiday Monday - another lie in. I have had a lot of rest over the holiday. I feel a bit wooden but can function normally although my family say that since starting treatment I have been more grumpy with mood swings (another classic reaction). I try not to be but it is difficult viewing yourself as others view you.
Similar day to yesterday. Felt susceptible to the colder weather and wore a coat indoors for a while.
Found myself wondering where the balance is between the treatment and normal life - writing a blog can convert the slightest snuffle into a supposed symptom of treatment.

Day 10 (27 May 07) Jon's Hepatitis C Treatment

A wet Saturday! Lay in to 10am - luxury of a 12 hour sleep! Felt a bit heavy but functional and had a slow day. Had a two hour nap in the afternoon.
Was struck by a doctor calling in the national media for routine HIV tests for people ending up in Accident and Emergency units in hospitals. It struck me that routine Hepatitis tests would serve a similar purpose - I think that the more people who know about their condition the better although I appreciate this all gets enmeshed in personal privacy. I do wonder what happens here when people get diagnosed Hepatitis C for the first time when they go to donate blood with the National Blood Service.
For the past few nights have been itching a lot in my upper legs at night - again I was warned of this. On balance, however, so far, so good - I think I've got off lightly. Let's hope there's some change in the virus levels when I go to get my results next Wednesday.

Day 9 (26 May 07) Jon's Hepatitis C Treatment

A sweaty night - a bit itchy but surfaced about 9am feeling OK - very slightly woozy, but ready for the day.

Day 8 (25 May 07) Jon's Hepatitis C Treatment

Second Interferon injection time! It seems a long time ago since last week. A bit apprehensive as I sat with the needle poised over my stomach like a Japanese soldier about to commit hari-kiri but it all went very smoothly, then took my three Ribavirin tablets and settled down for a sweaty but peaceful sleep. Lay in a little - am going to work a bit later today. No significant effects (the thought crosses my mind about the possibility of having taken a dud dose - but I dismiss that quickly) and will take things as they come today.

Everything went fine - I functioned well at work and didn't even think about Hepatitis C once. However, I was very tired when I got home in the evening. Had a lay down and crashed out for an hour and then after that went straight to bed (after taken the Ribavirin).

Day 7 (24 May 07) Jon's Hepatitis C Treatment

Much the same as yesterday - I had a lot of energy today.

Day 6 (23 May 07) Jon's Hepatitis C Treatment

Another pinch-myself day! Felt good all day and even the metallic taste has receded a lot. Had my first in-treatment blood test this morning at the hospital - only two phials worth taken, incontrast to the six or so I had just prior to beginning the treatment. Should know the results next week when I have my first regular catch-up appointment with the specialist.
Another busy (but positive) work day and again, scarcely a second thought about Hepatitis C once I left the hospital
Many years ago I used to run half marathons, and I can feel myself relax into things as if running another. However, extending that analogy, I probably haven't finished the first 400 yards yet, so there's a long way to go!

Day 5 (22 May 07) Jon's Hepatitis C Treatment

Again, got up feeling OK, but with that metallic sort of taste coming and going in the top of my mouth. had my two morning Ribavirin tablets and worked from home till 11am then drove into work, then up to London again and again back about 11pm. During all this time I have scarcely thought about Hepatitis C - that metallic taste is there in the background though.

Day 4 (21 May 07) Jon's Hepatitis C Treatment

My first normal work day! 6.30am alarm. I had to pinch myself - I felt almost normal - a bit woozy and a bit bruised internally, but well able to function.
I didn't dwell on this - just did the normal commute in (one hour by car) and spent the day in meetings. Then up to London for an intensive forum and back home for about 10pm. Was by now getting a bit heavy and tired. After taking my three tablets started to sense a slight metallic taste in the top of my mouth - I have had whiffs of this very occasionally, so it looks as if I won't escape the taste in my mouth I have been warned about by others with Hepatitis C .
So far, so good. Next horizon is the blood test on Wednesday (in two days time)....

Day 3 (20 May 07) Jon's Hepatitis C Treatment

Went to bed early (10pm) and had a pretty difficult few hours till about 4am - I was sweating a lot and had pains all over my chest which made me feel very restless. I tried the old yoga trick of taking measured breaths and pauses and that helped, and tried to relax as best as possible and that helped a bit.

Eventually things settled down more and I dozed off for increasingly longer periods. Not a comfortable night!

Restless aches in my back lasted all day and from time time I went for a lie down. That didn't stop me driving to two sports events to watch my children take part, or the basis chores.

I get the feeling that my body is gearing up for a battle royal against this Hepatitis C virus and is already pummeling me quite a bit on the inside.

Day 2 (19 May 07) Jon's Hepatitis C Treatment

Sweated profusively during the night and woke up from time to time.
In the morning I felt woozy again but I do have my appetite and not not have any metallic taste in my mouth, which I had been warned about, and no itching. Before taking the treatment I had very itchy skin but since taking the treatment that has subsided significantly.

During the day I had a restlessly aching back and odd pains in the chest but could certainly manage the Saturday chores.
Spent time getting this blog up to date and will release it today or tomorrow - haven't worked out how to back-track on state on the blog. No matter.

I reflect on the equanimity with which I've taken the whole sequence of events since my first diagnosis. I don't feel angry, bitter or afraid - it's just something that has appeared and has to be dealt with day by day. Maybe I'd feel different if I were younger? Still, I would like to know how I picked up the disease.

The main annoyance has been coming off the alcohol and if I've whinged about anything, it's that!

I can't speak too highly of the London-based Hepatitis C Trust. Charles Gore and his team are doing a fantastic job informing, reassuring, alerting, counselling and campaigning. Before treatment I went to several self-help groups organised by the Trust, meeting a very wide and eclectic range of people with Hepatitis C, and with different genotypes of the disease. The support groups have all been very positive and a great preparation for the treatment.

It is only those with the illness who can really appreciate what you are going through. Several of us in the group are starting treatment around the same time so there will be helpful points of comparisons, although, as I cannot stress enough, every person has a different experience, symptoms and reactions. It's a very idiosyncratic disease!

Day 1 (18 May 07) Jon's Hepatitis C Treatment

I had been really busy at work all week, with myriad things to do right up to the Thursday. Thursday night I was at a City dinner getting home at 1am. So it was start now or wait another week.

I fried up two eggs and some left over fish fingers as I had been warned that fatty foods help when you take Ribavirin. Then I read and re-read the instructions for the Interferon injection - the dummy run at the hospital seemed very hazy and long time ago, even though it was only last week!

For the record the Interferon I am taking for my Hepatitis C treatment is ViraferonPeg, with a pre-filled injection pen with peginterferon alfa-2b, to be injected subcutaneously once a week, and Rebetol Ribavirin capsules (two lots daily - three in the evening and two in the morning). As ever there are two types of both that you can take, but apparently there is no difference in effect.

So I took the plunge - literally. The injection didn't hurt and it was all anti-climatically simple and straightforward. Then I took the three Ribavirin tablets with some water as instructed and crashed out. I had no idea what to expect - everyone is affected differently and the nurse had warned that on the first day I could feel very rough.

Woke up from time to time in the night - there was a sort of strange, curious excitement about what might be happening - I'm sure the adrenalin had got going too. I woke with a headache at 7am and feeling very woozy. I dozed till 9am and phoned work to report in sick.

Bathed, dressed and had breakfast and dutifully took my two Ribavirin tablets with much less trepidation - it's strange how everything sinks into a routine quickly.

I had two key telephone interviews to make for work and wondered how they would go. I developed a little tintinnitis in my ears and felt a bit unsteady and had a dull headache in the back of my head most of the day. I am determined not to take anything to alleviate any side effects. The interviews went well - much better than I had anticipated.

Then in the evening I developed what seemed like a severe indigestion. I took my son to a sports event in the car. Driving was fine but I got very restless sitting in the car waiting for the event to end. I had to get out and pace around to try to relieve the indigestion. Maybe more greasy food would have helped!

Bed at 11pm with the next dose of Ribavirin.

Jon's Hepatitis C Treatment: Prologue

Today I start my treatment for Hepatitis C (genotype 1a).

Despite considerable research on the Internet, especially Ron Metcalfe's blog (www.ronmetcalfe.com), a lot of help from the HepCTrust web site (www.hepctrust.org.uk) , and, in recent months, focus groups organised by London-based HepCTrust, awareness of what I could be letting myself in for dawned only late on.

When last week I finally came to the point of receiving my needles from my really helpful HCV hospital nurse two hammer blows struck deep into my core: firstly, the needle was longer than I'd expected (trivial really but it shook me), and secondly (and much worse) I had to sign a form to say I was aware that the Ribavirin was a dangerous drug that could result in a malformed child.

It dawned on me that treatment really was now for real. Since June 2005, when I was first diagnosed, I had to some extent been sleepwalking towards treatment.

Diagnosis

I was diagnosed with Hepatitis C in a routine Well-Man series of checks. My other half had felt I wasn't quite right - I was more tired more often than I should have been - and wanted me to check my health out. I arranged for a battery of tests for just about every conceivable condition - which I did privately, paying over the odds. But results were quick. The tests threw up Hepatitis C, although I had a clean bill of health otherwise.

I really didn't know anything about the disease so wasn't too worried. I went to a Hepatitis C specialist, again privately for quick diagnosis, and had a liver biopsy and ultrasonic scan. I wasn't too far down the road with my Hepatitis - I had mild fibrosis of the liver - and the specialist advised me not to do anything about it as it could be years before it started to get serious.

I then started scouring the Internet, which threw up all sorts of conflicting information, and read several blogs of people undergoing treatment. I settled on two sites - a Canadian site for leads (www.phac-aspc.gc.ca/hepc/index_e.html -good for leads) and the London based HepCtrust site (www.hepctrust.org.uk - vibrant and invaluable).

The Catch-22s of Hepatitis C

I realised soon that Hepatitis sufferers are in a Catch-22 situation in the UK. Treatment costs £20,000, and for genotype 1 there is only about a 50% chance of success (it's about 80% for most other genotypes). In 2005 the UK's National Health Service was very reluctant to treat people with mild Hepatitis, urging people to wait until their illness was more developed. That seemed daft to me as it seemed obvious to me that the earlier you have treatment the better: the fitter you are the more likely you are to fight it off.

For me, there was also a matter of principle - in Scotland, for example, those with mild Hepatitis C are entitled to treatment.

I was concerned about the risk of passing the virus on to some one else, especially in the family, although as the virus is passed by blood to blood contact the chances of pasing it on are pretty low if one takes basic precautions.

There is another Catch-22 too. It is estimated that in the UK several hundred thousand people have the virus, except that most don't know it. It is a time bomb for the cash strapped NHS. At £20,000 for treatment, the cost of treating 10,000 people works out at around £200million (with a 50% of success for genotype 1 sufferers). If the true number with the virus in the UK were as many as 500,000, that would be an extra £100billion cost to the health service.

With high profile people like Body Shop's Anita Roddick announcing they have Hepatitis C, I thought it prudent to get treatment ahead of the possible tsunami to come.

How I got Hepatatis C

I don't know how I picked it up. It has to be blood to blood contact. At the HepCTrust activities I have met people who have picked it up in a variety of ways - through blood transfusions, accupuncture needles, drugs needles, or inheriting it through their parents. The gestation period can be as long as 30 years. I have a nagging feeling that I may have picked it up at a dentist many years ago.

Symptoms

I have no symptoms - except I feel tired some of the time (but then I've always felt tired at times) and I'm told I'm a bit irritable. When stressed I do feel a pressure in the liver area (not the liver but the muscles surrounding it).

The one thing I have learned through talking to many people with the disease is that there are no norms - there is a suite of symptoms but each person has a different range and differing intensities of those symptoms.

Why I decided to get treated

New treatments are always there just round the corner (for example trials with a new drug, codenamed VX950 are looking very promising right now), so would it have been worth waiting? I decided no - I just wanted it cleared - and cleared now.

When I was first diagnosed I decided to stop drinking alcohol, which I found very hard to do, especially as my job involves a lot of socialising - so I would like to be able to drink a bit again!

I was also concerned about the perception of others - those in my open plan office would not feel comfortable knowing I have the disease (even though I am meticulous about having my own cup etc). I was also worried about impact on life insurance and with health declarations one has to make when changing job. And most of all, of course, was the concern about infecting someone else.

There was one other major catalyst for me deciding to have treatment too. In August 2006 the English National Institute for Clinical Excellence (NICE) changed its guidelines temporarily, recommending that for the time being those with mild Hepatitis C could have treatment rather than have to wait to deteriorate before having treatment (see: www.nice.org.uk/TA016) .

I talked to my doctor (my GP) and he was very supportive indeed - in fact I am the only person in his practice who has Hepatitis C (at least knowingly!) so he has taken a personal interest. I then had a private consultation with another Hepatitis C specialist and then switched to have treatment under the National Health Service under that same specialist.

Yet another Catch-22 with hepatitis is that health insurance companies consider it a chronic condition and therefore it can be extremely hard to get them to stump up the £20,000 needed for treatment.

It took another couple of months to get an appointment to get started - in May. I suspect it had something to do with waiting for the new financial year...

I decided to start on 17th May - a Thursday. I intend to keep working through my treatment, but take every day as it comes.

Who to tell?

One consideration was who to tell. I have been warned by those with the condition that people react in strange ways when they learn that you have Hepatitis C - the people you would expect to be OK about it sometimes are not, and vice versa.

Although I have told close friends - with supportive reactions from every one, and also ensured that my teenage children understand what it is all about, I am more cautious about telling work and professional colleagues, or announcing my identity on this blog.

I decided to tell my immediate manager. I said that I have a progressive liver complaint for which I am starting treatment. I said that the treatment could last up to a year and that I may be under the weather from time to time but would do my best to function normally. He was very supportive. and will preserve the confidence

I also told my Human Resources Manager - I was vaguer there - saying it was a progressive disease and treatment could take up to a year. Again, I had a lot of support from her. Those are the only two people I intend to tell in the work situation.
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