ihepcblog

Day 132 (29th September 2007) Jon's Hepatitis C Treatment

2007-09-29T17:45:00.000+01:00

Experienced a low point last night. My young son said how terrified he is of catching Hepatitis C, es[pecially somehow from me touching food and things. I did my best to reassure him, but the perception, late at night, was very much there.
I'm doing my best to insulate myself at home, especially with teeth cleaning and shaving etc. However, food preparation is a new dimension.
When this is all over I will probably get them tested if only to reassure them.

Day 130 (27th September 2007)

2007-09-27T22:19:00.000+01:00

The last few days have been intensive, work related. I was away at a conference in the Midlands in the early part of the week and have been extremely busy at other conferences since.

I have had little time to think about my Heptatitis C treatment, although I am remembering to take the two lots of tablets each day and the weekly Interferon injection. I have to much more economical with stairs and walking - I stand on Underground escalators now all the way up instead of walking up.

I keep going at work (which I enjoy very much) but then seem to want to crumble when I get home - but there is always plenty to do at home too - the ferrying, my share of the household chores (which is not these days a very equal share).

I am more irritable at home and have to keep this in check. I am looking for a gap when I can just take sick leave from work and lie down for about two days to catch up on sleep etc.

Otherwise still tired a lot of the time, hating the thought of the injections more and more, want to get rid of the hacking cough which I can just about keep under control when I need to, and shake off the enervating, draining tiredness.

On the positive side, though, I sleep well, any itching is localised to just to one side of my groin area, I can eat whatever I want (that'll have to stop quickly at the end of treatment), I can taste the food and have no metallic after-taste. I am also coping at work. It's like being in a never-never land right now!

Day 123 (20th September '07) Jon's Hepatitis C Treatment

2007-09-20T23:57:00.000+01:00

Work in particular has been tough this week, indirectly as a result of the Hepatitis C treatment. The fundamental issue is that I was late for some freelance work - whereas normally I would have worked most of the night to sort it out, I found I could not. After about 1pm a hammer blow hits me and I either fall asleep or have to go to sleep. Of course, the work was late as I find it much more difficult to plan ahead now - I always have but the treatment seems to be accentuating everything.
Otherwise, nothing much to report. The cough is still there, the draining tiredness - which comes on when I walk up stairs and escalators now is still there, and the irritability is very much still there - unfortunately it comes out more in the home situation.

Day 119 (16th September '07) Jon's Hepatitis C Treatment

2007-09-18T00:06:00.001+01:00

After the relief (but trepidation) of the major drop in the viral count after three months, things are back on the flat and somewhat predictable track.
If I could have changed anything it would have been to have my injection on a Tuesday night rather than a Thursday. As it is the Thursday dose hits me on the Saturday and Sunday - I would rather have shared that out between home and work!

Day 116 (13th September '07) Jon's Hepatitis C Treatment

2007-09-13T23:32:00.000+01:00

Went to the hospital and the doctor said "do you want the goods news or the good news?"

I had been full of trepidation and when I got to the hospital early had thought of going to the hospital pharmacy to see if they had prepared a monthly prescription for me. But it's like exam results - at the same time I both did and didn't want to know, so I avoided the pharmacy.

Showing me the results of the quantitive tests, I found I had gone down from 12,947,713 iu/ml in a sample taken on 3 November 2006, and that it is now just 11,011 iu/ml. A significant drop and continuation of the treatment for another seven months.

Excellent news, but coming out of the hospital I became more perplexed. My June 2005 biopsy has said my viral load was 230,000 copies/ml.

Useful help came from the web site: www.hcvadvocate.org/hepatitis/factshhets_pdf/VIRALLOAD.pdf
That does the conversion between the previously used measure of copies/ml, and the new standard of International Units. Mine was a HCV RNA test, but there seem to be two types of HCV RNA test - one converts at 1 iu/ml = 5.2 copies/ml; and the other at 3.8 copies/ml. Therefore the 230,000 copies/ml would convert at either 8,740,000 iu/ml (if I have had the Cx HCV RNA test); or 11,960,000 (if I have had the Versant HCV RNA 3.0 test).

I will have to check during my next hospital visit next month for which type of test I actually I had.

Am very relieved - especially because I knew I would have asked for a second quantitative viral load test and was steeling myself quietly to activate Plan B to seek out a patient advocate at the excellent London-based Hepatitis C Trust which helps with appeals.

Am also daunted - in particular the family has to put up with my mood swings for another seven months. There's still a long way to go, so as before I plan to take things forward one day at a time - one foot after the other. It's the only way.

----

On a sad note, I was upset about Anita Roddick's death earlier this week. She had certainly inspired me and she was geared up to really help the Hepatitis C Trust and campaign on its behalf.

Day 113 (10th September '07) Jon's Hepatitis C Treatment

2007-09-10T21:24:00.000+01:00

I am now a third of the way through my treatment still waiting patiently in a sort of never-never land for my hospital appointment on Wednesday morning (12th Sept) when I'll get the viral load results - hopefully showing a double logarithmic decrease in quantity.

To recap on the side effects of the treatment so far:
* It has accentuated certain characteristics I've always had, so that the irritations I have always felt (usually over relatively minor things - I'm more sanguine about big things) are in real danger of turning into rage.
* I am a lot more argumentative at home (although not at work).
* I am a shadow of my former self when it comes to energy - as I keep saying in this blog, doing anything starts to suck the energy right out of me, although I do not have this anywhere near as severe as some people I have met undergoing treatment.
* I get occasional aches and pains in the abdomen and kidney areas but they haven't lasted
* I get very thirsty
* I go to the loo (ie: bathroom) much more and have to get up about three times a night for this.
* I think my reaction times have slowed so I have to drive more carefully.
* I get a bit of brain fog - not remembering names etc - but as far as I can remember I always have had - so I'm not sure about the treatment's impact on this
* I now get an itching, occasionally severe, localised around the groin area

On the positive front:
* I sleep well most nights (apart from having to get up to go to the loo!)
* I am still working effectively -my boss is happy with my work
* I've lost a stone in weight - from 12.5 stone to 11.5 stone
* I am eating well - I just listen to my body which tells me what it wants

I'll add ion the things I've forgotten in a future posting.

In the meantime I'll report back on Wednesday!

Day 110 (7th Sept '07) Jon's Hepatitis C Treatment

2007-09-07T08:13:00.000+01:00

Plunged into work - in some ways it's easier when I'm at work. I don't think about the Heptatitis C, and as long as I stay away from controversy (to avoid the rage bubbling over), and as long as I single-task (I find dealing with the unexpected and trying to multitask much more difficult since starting the treatment) things seem to work OK.
I still get a bit irritable at home and am trying to rein that in.
Otherwise, as before I sleep well, no aches or pains, but get tired when I walk uphill - I feel the energy just drain away. I've recently begun to get a bit of "glue eye" in the morning - not much but just enough to struggle for a few seconds to open my eyes. But then at least I am sleeping without any problems.
Must dash to work now...

Day 107 (3rd Sept '07) Jon's Hepatitis C Treatment

2007-09-03T18:43:00.000+01:00

Am back from a 10 day holiday in Scotland. So a quick posting note now and some longer ones during this week.

I must confess I slept a huge amount of time - with 10 hour nights and a couple of hours at least of lie-downs during the day. I lost about five or six pounds in weight overall. Apart from the tiredness, which is getting worse - especially when walking uphill, or lifting and carrying a heavy suitcase some distance - the treatment side effects have stabilised, or at least I am recognising and coping with them better.

I am a bit concerned about the impact the tiredness will have on my work when I return tomorrow, and how to balance it all. I know that a lot has stacked up while I've been away.

Due to a vital school meeting about exams etc I had to miss my monthly Hepatitis C group meeting in London. That is a real life-line so I am missing that very much.

Next week I have my next hospital visit and the results of the quantified viral load tests, so am trying to prepare myself mentally for that.

Day 97 (24 August '07) Jon's Hepatitis C Treatment

2007-08-24T10:58:00.000+01:00

Only had two hours sleep last night - I had to collect one of the kids from a sporting activity near Birmingham, in the middle fo England. I was a 240 mile round trip, getting back late. Then had to inject my Interferon and then pack, for an early flight to Edinburgh.
Do not feel much reaction although I expect it to hit tomorrow. However, will cat-nap during the day today (as long as I don't snore in any of the Edinburgh Fringe festival's activities!!
Will try to keep posting from Edinburgh.
Otherwise, the throad pain and also the abdonimal pain disappeared a couple of days ago - I will have to watch them.
Otherwise nothing notable to report....

Day 93 (20 August '07) Jon's Hepatitis C Treatment

2007-08-20T07:01:00.000+01:00

Felt very tired on Sunday. Also two new things became slightly more than irritants. Firstly my throat was very raw and at times I felt it difficult to swallow. The nagging potential worry there is thyroid. I know someone who did the 48 week treatment for Hepatitis C (Genotype 1a) successfully, only to find that he has a lingering thyroid problem as a result of the treatment.

Secondly my midriff area was sore. So I went and lay down several times that day and using the usual trick of focussing on the painful/sore spot and then trying to imagine it away.
Had to drive up to south London oand back (about 45mins), which was not too taxing.
Got angry once on Sunday, when the avocado pears from the supermarket were too hard to eat, and I really wanted one then as it seemed the right thing for my throat.

Was very tired and despite having slept for a one and a half hour session and again for a 45 minute session in the day, I went to bed at 9pm, waking at 6am on Monday - hoping to get enough material together for my report to my manager at 2pm.

Am getting to the point where I am goinf to have to take time off sick from time to time. But hopefully not this week as I only have four days before going on holiday (from Friday to spend a week in Scotland, hitting the tail end of the Edinburgh Fringe festival and then going on to Glasgow looking for the culture that is supposed to be there.

Not quite sure what to do about my Interferon injection pen and the aircraft and also keeping it refrigerated -but will think about that later

Day 91 (18 August '07) Jon's Hepatitis C Treatment

2007-08-18T21:13:00.000+01:00

Have just about been keeping my head above water at work - but still have a major report to produce for my boss on Monday morning,
The cough continues and it's only a matter of time before someone at work comments on it and asks if I'm all right. Although I have become quite adept at holding it back.
Am beginning to hate the injections - I do it on Thursday evening, then have the Ribavirin. I'm usually OK on Friday but it hits me on Saturday more and more.
So today I've been tired. But then I had to take two car loads of rubbish and building rubble to the waste tip, then drive up to south London for an hour each way to collect some things. I then had a 90 minute sleep and felt refreshed - just in time to make a collection at the airport to meet up witrh a heavily delayed flight!
I am more tired, and I do see my car driving not being as good as it was. I have to drive more slowly and I get the feeling that my reaction times are slower.
I've found that having a soak in the bath is very helpful. I've also developed a mini-craving for eggs - maybe for the zinc in them?? Anyway, I made a pact with myself that if my body tells me it needs me to eat something, I do. It's along the lines that pregnant women get food cravings, which are, I reckon, to ensure they get the right minerals.
Otherwise not much to report - just hanging in there, trying not to think too much about Heptatitis C and the treatment.

Day 87 (14 August '07) Jon's Hepatitis C Treatment

2007-08-16T00:00:00.000+01:00

No major changes over the last days.

I went to the cricket - the Test match between England and India on Sunday with some friends. That was very restful, just focussing on one thing, and it was a very relaxing day. However I was very tired that evening - probably all the more so as I'd had a stressful Saturday trying to pin down car insurance for a car I was selling.

I think I am feeling more tired during the day- I went to bed really early (9.30pm!) for the last two nights and slept through till 8.30am before going to work. The really positive bit was that I slept throughout the night both times - I am lucky there as I know some people under treatment who don't sleep well.

I know of two artists who have Hepatitis C - I wonder what the impact of having the disease has on creativity - especially the art before and after diagnosis. Of course this could be for any medical condition, but I would be particularly interested in the impact Hepatitis C might have. I like art - but I am certainly no artist myself!

I had a curious experience with itching. Many people suffer itching with the treatment. In my case I had severe itching below my knees before treatement, but it has actually cleared up since treatment. However, recently I have started itching a lot on my upper legs. One piece of advice has been to keep my fingernails short! Also I have been putting BandAid type sticking plaster to keep me away from it.

Now that I am over three months in to treatment, and it may be having more of an impact on my work in the coming months, I am debating whether to give my employers more information. At present I have told two people - my boss and my HR manager - that I am having long term treatment for a liver condition which may impact my work from time to time. They have been very supportive, and I have not lost one day yet. I am planning to let our occupational nurse (employed by my company) know too, and maybe when I get the results in September of the impact of treatment on the viral load I will tell them it's Heptatitis C.

I am concerned about September onwards when our industry picks up after the summer break and about my ability to handle multiple new projects. Still, I will take things day by day.

Day 83 (10 August '07) Jon's Hepatitis C Treatment

2007-08-10T19:28:00.000+01:00

Today brought home some of the mental challenges of the treatment. It started as a normal day - going to work to consolidate a lot of things for Monday morning when my boss returns. However two home related activities intruded as well - one completing the organisation of a social event for Sunday, and the other trying to sort out a Catch-22 anomaly I have trying to get a road tax disc for my car - I won't go into detail but it involved the licensing authorities refusing to accept a fax of the insurance policy I took out yesterday...
I found it trying, and thought I was coping OK when I realised I'd left a document in the licensing office. I had to go back to the office (a five mile return train ride) and it wasn't there! But the good news was that the document was not as important as I'd thought.
But in complex situations like that I am finding it increasingly hard to keep an all round focus and things are slipping a bit at the edges. I keep telling myself it's normal and that many people would have taken the day off sick.
Anyway, the computer's free so I'm writing this, then I'm going for an extended lie-down before helping to prepare for having two relatives here at the weekend, and completing the social arrangements for Sunday.

Day 82 (9th August '07) Jon's Hepatitis C Treatment

2007-08-10T01:05:00.000+01:00

Felt a bit heady today - that may have had to do with having to walk for about 2.5 miles as I took my car in for service and decided to walk to the station to catch the train to work. I didn't feel too tired when I did it but found it hard to concentrate during the day.
Am just about to have my weekly jab, and on top of that I have an early start tomorrow.... Just a bit of tightness across my chest - but then I have been up late and my injection is a couple of hours overdue - maybe my body is telling me something!

Day 81 (8th August '07) Jon's Hepatitis C Treatment

2007-08-08T15:37:00.001+01:00

Two positive events this week!

The first was my monthly support group meeting - a very wide range of people, a mix of people taking treatment, considering treatment, and going for alternative treatment. Very positive and supportive. We agree not to discuss the meeting so all I can say is that I realise I am getting off lightly with the side effects so far. It also reminded me that because it is so easy to cut oneself I always carry plasters with me at all times now to patch myself up - I cut my finger in the centre of London the other week (it was a paper cut) and ended up being late for a meeting as I had to go and buy plasters . So now i alsways carry some with me,

The second was my three month visit to the hospital. My basic ALT level has dropped to 28 (normal range is under 40) from the 50s.
I had a PCR test to measure my viral load today too at the hospital and the results will be ready when I go back in five weeks time. Yes five weeks! It should be four. But I had to postpone my September meeting by one week. I hadn't realised the impact this had on the system - I had to get a prescription for the extra week's drugs which (serves me right) meant waiting for over half an hour while the pharmacy in the hospital made up the precsription. Funnily, I did not get irritable!!

My white blood count has dropped from 290 before treatment to 211 now. My haemoglobin level now is 11.6 (from 16.0 before I started treatment) and my platelets are 118 (from 242 before treatment). The nurse said if the haemoglobin count goes down to 8 or 9 I should expect to get really tired. I was also advised that people on 48 week treatment often get a low and feel wretched about 8 weeks before finishing treatment. Some side effects may get worse, but then the longer one takes treatment the better one adjusts one's coping strategies.

Day 77 (4th Aug 07) Jon's Hepatitis C Treatment

2007-08-04T18:13:00.000+01:00

Had another uneventful weekly Interferon injection Thursday night - I couldn't remember which side of my stomach I'd used last time... I prefer injecting in my stomach than my thigh.
Had to have the plumber round on Thursday due to a leaking radiator. The good news was that the plumber came, but I found it stressful. I do find that anything out of the routine is getting more difficult to cope with.
I have to go and have a lie down for half an hour or so much more often. I also find it difficult mentally to cope with forward planning.
Otherwise the cough still there - usually when I think about it or when I move into a colder room, or if there is some sort of atmospheric change. But it is more under control, especially at work.
The irritation is still there, but I move away from situations much more.
I also have a craving for sweet things sometimes, so I always have hard boiled sweets in the car. My weight has stabilised to about 12 stone with clothes, but I am eating things I'd previously stopped eating - like milk, or sugar, or cakes. That's sort of an upside to the treatment - I can eat what I want with no worry about putting on weight! I am going to have to be very careful when I come off the treatment not to put on weight.
I also am thirsty much more - the best drink seems to be hot water.

Day 75 (2 August '07) Jon's Hepatitis C Treatment

2007-08-02T08:37:00.000+01:00

Another short, holding posting - everything pretty the much as in the last two or three days.
The hospital sent my doctor a short note to say that my treatment was going fine with minor side effects (.. they don't always seem quite so monior at the time - but compared to others of course they are).
My key task for the rest of the week is to plan my paid-for work plan for the autumn - I have to plan more these days - firefighting is much more difficult than before the treatment.
Am looking forward to my next group session on Monday, and also (in an apprehensive way) to my tests to see how the viral load is doing.

Day 72 (29 July '07) Jon's Hepatitis C Treatment

2007-07-29T11:38:00.000+01:00

Not much to report really - the cough is still a nuisance and the tiredness always there in the background. But I am trying to just carry on as normal as possible until my body tells me to stop. Then I have a lie-down.

Day 71 (28 July '07) Jon's Hepatitis C Treatment

2007-07-28T10:29:00.000+01:00

As you can see from the irregularity of my postings, things are slowing down a lot for me. I am trying to keep everything going on all fronts, and I am glad that August is set to be a slow month at work - although the autumn will be incredibly busy!
Men are not supposed to be good at multi-tasking anyway, but I find multitasking is getting much harder. I'm fine focussing on one task, for example at work, but increasingly hard to balance several things at once.
Before the treatment I would sometimes have four or five hours sleep a night over a busy period - but that is not possible now as when I am tired I need to lie down horizontally.
My family also say that the treatment has accentuated various character traits that I have. I think I have the irritability better under control but it still comes out from time to time - more in a domestic situation than the work situation.

Day 67 (24 July '07) Jon's Hepatitis C Treatment

2007-07-24T08:36:00.000+01:00

Sorry about the delay in posting - I was away on holiday in Cornwall and did not have ready access to a computer or the Internet. The break was good - even though I had to dash up (by train) to a work related event on one of the days.
Am gradually feeling weaker - it's getting harder to do an manual work (such as lifting heavy bags of rubbish for any distance) without feeling tired and a bit drained. Walking is still fine - I can do a lot of that, but am finding it more difficult carrying my work briefcase around with me for long stretches (it tends to be full with a computer and notes etc).
This is a strange phase of treatment - my spirits are good and I think that I have the "rage" (ie when I get very irritated about something) much better under control. The hacking cough is still there all the time.
But otherwise it is about taking the Interferon and Ribavirin (I have a smooth method of ensuring that I do take them as presecribed) and waiting, waiting, waiting......

Day 57 (14 July '07) Jon's Hepatitis C Treatment

2007-07-14T12:02:00.000+01:00

The weekly Interferon injection went fine on Thursday night. I woke up on Friday with a bit of a light-headed headache - with a sort of tingling in the back of my head - made me feel woozy. I decided to work from home and was fairly productive. However, as I'm on holiday next week I had to go into the office. That was a lot more productive, but I felt a heady wooziness all day. I really didn't want to take anything for the headiness.
I felt like yin food (fish fingers) rather than yan.
I went to bed about 10.30pm and crashed out till 7.30am today. I am sleeping fine and don't wake up in the night these days.
This morning I have booked in for a check-up with the chiropractor as I suspect the head tightness is related to tense shoulders (I've been going to a chiropractor for over 30 years, and am down to catch-ups every six months - I haven't been for about eight months now...).
Am ging down to the West Country for a week's holiday. Mustn't forget to pack my injection for next Thursday anmd enough Ribavirin tablets to last the week!

Day 55 (12 July '07) Jon's Hepatitis C Treatment

2007-07-12T08:58:00.000+01:00

Went to my monthly hospital appointment today. Saw the specialist briefly, but spent more time with the nurse. They said I was looking paler than last month. Things really start to happen next month when I have my quantitative PCR test which looks at the viral load. The standard they will be looking for is a "2-Log Drop" - ie a major drop in the viral load.

Otherwise my standard blood tests have been fine over the past two months. My liver function test has been in the normal range for the past two months (ALT reading of 37). My white blood cells and platelet reading are fine and while the haemoglobin reading is down from 16 to 14 it is in the normal range.

I understand that patients who use the Roche version of the Interferon get a larger blood drop than those (like me!) using the Schering-Plough version. I'll have to look into this some more.

Came back relatively early from work yesterday (about 7pm) but after helping prepare the food was totally exhausted and had to go for a lie down (which turned into going to bed for the night). From time to time feel I am slowing down a bit at work - not gettuing round to completing or starting things, so I'm feeling behind a bit more than I feel that normally. Still, am on holiday next week, so I'll see if that makes a difference......

Day 53 (10 July '07) Jon's Hepatitis C Treatment

2007-07-10T19:48:00.000+01:00

Following advice and caution from two kind comments, I am withdrawing from taking vitamin and mineral supplements and am falling back on listening to what my body is telling me I should eat on a meal by meal basis. I have a craving from time to time for sweet things. More recently it has been for milk with raw porridge oats.

I think the "rage" has not been too bad over the past few days. When I feel the preconditions coming on I separate myself from the situation - it's strange it comes on more at home than at work.

It's now just over two months in and I've got into the routine. I went cycling with my 12 year old on Sunday and found it very tiring. Again, it's not my legs so much but I feel drained of energy through my chest. I didn't push it and stopped for frequent rests. All in all we only cycled a few miles - but we wanted to commune with the Tour de France UK leg!

Another meeting with the hospital tomorrow - I seem relatively incurious about that effect the treatment is having on my viral load count etc. But I do realise from the monthly group meeting I attend that whatever happens doesn't seem to mean much. People I know have shaken off all trace of a viral load by month two, only to have the treatment end in failure. Conversely others have kept a measurable viral load three or four months in treatment and then cleared the virus at the end of 48 weeks. I shall take it as it comes.

The cough is still there and from time to time gets worse, particularly if I am cold.

I seem to be coping all right at work - the cough comes on from time to time there but I seem to be able to keep it under control. I think I should have had my weekly injection starting on a Tuesday or Wednesday instead of Thursday night. Fridays are generally fine but I get hit with a deep tiredness from time to time over the weekend rendering me a zombie for two or three hours at a time. If I had started the cycle earlier maybe I could have had some of the xombie times in work time and gone sick.

Day 48 (5 July 2007) Jon's Hepatitis C Treatment

2007-07-06T00:59:00.000+01:00

Am just about to have my seventh injection and am writing this while waiting for the Interferon to warm up to room temperature. Have had another busy couple of days. Same side effects - the dry asthmatic type cough that comes on when I move to a different room or when there is a change of type of air. The cough is less intrusive and less frequent than it was three or so weeks ago.

The tiredness is there, but mainly when I exert my upper body (for example carrying a heavy briefcase around London is energy sapping, but I can walk for long distances without feeling at all tired - strange!

Have made major efforts to lessen the irritations "the rage". Am recognising the early signs and use yoga breathing and/or avoidance. Am learning to wait half an hour before firing off an email - but had my knuckles rapped yesterday when I sent an email over my boss's head to his boss without pre-thought!

Although the family and I all want to lessen my irritation, otherwise known as "the rage". We are all agreed not to rush into anti-depressants. I do appreciate that the Interferon reduces the serotonin in the brain and anti-depressants replace that. But we are looking first at typical mineral and vitamin deficiencies that often accompany depression and I am looking to have some mineral supplements (especially zinc, but also manganese, potassium, iron, calcium and magnesium). Will start this weekend and report back to the blog.

I'll then look at the B-complex vitamins and also ensure I am getting enough Vitamin C (at the start of the treatment I had more home-made smoothies than I do currently - will certainly up the intake there!).

I did hear at the monthly group meeting that the side effects can be cumulative through the treatment - I hope not. But I do keep telling myself that many have it a lot worse than me _ and I see them - and also I am inspired by the people I meet for whom treatment has failed.

I meet people who having endured 48 week treatment only to have it end in failure, who have picked themselves up to go through the treatment process all over again. One or two I have met have been successful second time round. Others have not been successful even after two rounds of treatment, and work hard at living with Hepatitis C most effectively through diet and lifestyle (the Hepatitis C Trust has lots of advice and special physical workshops on this).

There is so much admirable fortitude and strength of mind that I come across.

Day 46 (3 July '07) Jon's Hepatitis C Treatment

2007-07-02T22:49:00.000+01:00

Have just returned from my monthly Hepatitis C Group meeting and feel very positive. Iam not able to say anything about what others said at the meeting but midway through the session I raised the question of dealing with the "rage" - the irritation which wells up inside me from time to time. This sparked off a discussion which was very beneficial, although I am still not sure about the course of action.
It is likely that I am a bit depressed, although I don't think of myself that way. The question was whether one should take anti-depressants or not - first raised with me by Carol, in one of the comments to a much earlier blog (thank you Carol!). It depends on the individual, but I was advised anti-depressants do cut down the anger feelings and also do not leave you a zombie, and that, although a bit addictive, if you stop them as soon as you stop treatment, you should be OK. I'm not a die-hard, stick-in-the-mud about this, but I still have the innate concern about side-efects. Maybe my family should decide if and when I really do need to take them?
I was, as always, able to draw a lot of strength from the group. You can a huge amount of reading, web-browsing and blog-watching but nothing beats talking to a group of people at all stages of treatment - including those for whom treatment has not been successful.

Day 45 (2 July '07) Jon's Hepatitis C Treatment

2007-07-02T07:19:00.000+01:00

I've had a bit of difficulty getting near a computer over the weekend so this blog is later than intended. I think I';m keping better conrol over the irritations I get which I have, over the past month, realised are side effects of the drugs. I am looking forward to discussing this at my monthly Hepatitis C Group meeting this evening where I get the opportunity to hear how others are getting along.
I have meant to do more widespead reading in to Hepatitis C and keep an eye on other peoples' blogs but have had so much to do that I haven't had time! I will do though over the summer. It's strange, I did a lot more general reading before I had the treatment. Now it is very narrowly focussed and very personal.
Will write more tomorrow.

Day 41 (28 June '07) Jon's Hepatitis C Treatment

2007-06-28T18:31:00.000+01:00

Another extra side effect of the treatment seems to be materialising. That is a sweet tooth. I have rarely eaten sweets and have not had sugar in tea and coffee for years. But I have cravings for toffee and, from time to time chocolate bars, especially Toblerone. I do eat them, if guiltily - although not too guiltily as my overall weight has dropped from about 12.5 stones to about 11.8 stones.

Driving has been fine - I do find I have to extra careful in double and treble checking when pulling out - but that is not because I have slowed down but just to be extra sure that my perception of distance and speed etc has not changed without me realising it.

Had a very heavy three days at work, including two major presentations to big audiences. Both went well, and I was certainly far too busy to even think about my treatment. In both presentations I managed to keep the cough at bay, although it came back with a vengeance for a short period this morning.

I find I can walk up and down stairs, or London Tube escalators, without feeling hugely tired, but anything involving lifting things (or as last weekend, sawing branches) saps my energy like a drain.

Have kept the irritability at bay over the last couple of days - mainly by keeping quiet and by physically moving from a situation when I feel myself starting to get cross.

After I have my injection tonight I will have an early night.

Day 39 (25 June '07) Jon's Hepatitis C Treatment

2007-06-25T23:57:00.000+01:00

On Sunday I decided to cut some laurel bushes - an easy enough task, or so I thought. As I was sawing back some of the overhanging branches I felt tireder and tireder, as if energy was just draining away from me. Determined to finish the job, I took it a lot easier and duly finished it. But that was salutary - I am finding physical work or exercise more tiring and I get puffed out quickly. Still, as I found out today, I can still walk up the London Tube escalator two steps at a time!

I slept for two periods of about 45 minutes on Sunday at different parts of the day and felt better for it. Even so, I felt irritable from time to time and a couple of times I felt the "rage" welling up - I have tried to train myself just to lie down when this happens. My family recognises it for what it is and are supportive here.

Today (Monday) I was too busy at work to notice the Hepatitis C treatment effects - one meeting after another. I still have the hacking cough but am learning to control it more so it doesn't intrude nearly so much. I was then in London for more meetings, getting home about 11pm. I have two keynote presentations to do in two days (tomorrow evening and Wednesday morning) so the Hepatitis C will have to wait on hold! Seriously, though, I am pacing myself as much as possible.

Interestingly, I keep meeting people of my age who have been told by their doctor either not to drink alcohol at all for a variety of medical reasons, or to cut down drastically. That is making it easier for me to totally avoid drinking (for me at time, when faced with a vintage port, refusing alcohol is the worst side effect of the treatment!).

Day 37 (23 June '07) Jon's Hepatitis C Treatment

2007-06-23T16:41:00.000+01:00

I welcome the weekends - not so much for any lay-in, but because it is much easier just to go and have a lie down for half an hour or so and get up refreshed ready to tackle the world.
I have kept the work going - there is one very interesting development thing I am doing, in addition to a number of events and activities that I am organising.

Next week I have to give two brief presentation to major events, so am trying to get my head round preparing for those. I have been getting a bit slower - it's not that easy to measure, but it hit me last week (in my quiet period of blogging) when a new activity was thrown my way with the expectation I'd somehow fit it in - that is not so readily possible now.

Although I cannot rest during the day when I'm at work, I do find that I don't have time to think about Hepatitis C - except for when the dry, convulsive, asthmatic type cough hit me, usually when I change activities, move rooms, or sit down to a lunch. People in my large open plan office are sympathetic right now (they don't know I am undergoing Hepatitis C treatment),and are putting it down to a lingering cold. I might have some explaining to do if it carries on for months! Still, I am aiming to take things one day at a time.

Otherwise today (Saturday) has involved the usual routine of ferrying children to various activities, and I have managed to do the vacuuming (a bit more coughing!) and a bit of cleaning. My family is being less demanding on my domestic chores (I never was the best at doing them!), but I really do want to pull my weight here.

Day 36 (22 June 2007) Jon's Hepatitis C Treatment

2007-06-22T07:10:00.000+01:00

This is the first blog for seven days! Firstly, I had thought that my side effects were mild and becoming boring to report. However over this week I have discovered what effect the treatment is beginning to have - more psychological than physical.
As I say in my previous postings I have got off very lightly on the physical symptoms side - the crushing tiredness at times and a but woozy at others - but nothing that a quick horizontal lie-down doesn't help.
However, I have become very irritable. I had not noticed this creeping up - it was family who warned me. At times I feel very claustrophobic - for example, if there are too many people in a too confined space buzzing around. I just feel the need to get out. But I also feel the need to express my irritability verbally, and have at times been quite rude. That has spilled into work too - particularly when under pressure or confronted with some nonsense - I have fired at least a couple of emails off from the hip which I reretted.
Now that I fully appreciate what is happening and more aware of the warning signs, I am making especial efforts to not respond, to wait 15 minutes before doing anything, writing drafts of emails first and then waiting. All the time I tell myself - this is not me - this is the reatment.

The other thing I've picked up over the past two weeks is a hacking cough - I mention it in some of the earlier postings. From talking to people it appears to be an asthmatic type cough - I have this rasping dry cough when I move from one room to another or encounter diferent air temperatures. It's about once every ten minutes or so. I have never been asthmatic - and it is beginning to look as if this is part of the treatment side effects. On principle though I will not take anything for it just yet.

Otherwise the sixth injection was smooth - am beginning to dread it a bit, but bite my lip and continue.
Will write again when I have something to report.

Day 28 (14 June '07) Jon's Hepatitis C Treatment

2007-06-15T12:13:00.000+01:00

This is becoming somewhat repetitive - but a similar day to any other - just that heaviness in the background and the late night deep tiredness. Thinking about a work issue kept me awake a lot - this is very unusal for me, so I must ensure things are resolved before leaving work.
Had my fifth injection this evening and slept solidly (having resolved the work problem at work during the day).
Am thinking about only reporting on this blog when there are significant changes or developments, but will daily reporting for a while longer.

Day 27 (13 June 2007) Jon's Heptitis C Treatment

2007-06-13T22:31:00.000+01:00

A good night's sleep - the usual heaviness on waking up.
Went to the hospital for regular specialist's appointment. Saw a different specialist today who is a colleague of my one - the practise likes everyone to see everyone. Being only a month into treatment it's early days - too early to assess from the blood tests yet about any impact treatment is having. We had an interesting chat and he said that in our area the success rate for Genotype 1 treatment is high - 60% to 65%, compared to the average 40%-50%. Here's hoping!
We talked about how I may have picked up Hepatitis C but no further ahead on that.
Picked up the next month's prescription of Interferon and Ribavirin.
Then to work and a busy day.

Day 26 (12 Jun '07) Jon's Hepatitis C Treatment

2007-06-13T07:21:00.000+01:00

Woke again feeling a bit heavy and slightly queasy. I have taken to drinking hot water which works well for me. Couldn't face cereal so had just toast and marmelade. Productive day at the office - too busy to think about the treatment.
Tired by the evening though - had a craving for Emmenthal cheese!

Day 25 (11 Jun '07) Jon's Hepatitis C Treatment

2007-06-11T23:14:00.000+01:00

Another workday. Another heavy day - a bit like the heaviness you feel with jetlag, but with an underlying queasiness. I only really wanted to eat "yin" foods - light foods. Still have a hacking dry cough, but it's not too bad, more of a nuisance.
Was tired especially by evening.

Day 24 (10 Jun '07) Jon's Hepatitis C Treatment

2007-06-10T21:14:00.000+01:00

Had a good 10 hour sleep. Felt a bit guilty as I know that others taking treatment right now are having a lot of difficulty sleeping. I am now under 12 stone. Since starting treatment I have lost a few pounds, except my midriff is as big as ever (although that's no bad thing as that\s my preferred injection spot each Thursday!
Helped at my son's football tournament - my role was guiding cars in and being a general dogsbody helper. It was great - 100 or so kids who would otherwise have nothing much to do on a Sunday. I make sure that at events like this I take no part in giving out food or any associated activity. This is a basic preventative precaution and also one of perception too. I am ultra senstive about passing on the Hepatitis C, although I know that in normal circumstances it should be no problem.
Was disappointed not to be able to attend a artists' open studio in London. The football tournament was only finalised late on and I had hoped to see in one studio the work of a friend who has Hepatitis C - I particularly wanted to see in the art, the impact of being diagnosed with Hepatitis C. Some other time...
Took time out to go home for a two hour sweaty and restless nap.
I wonder if my relatively mild reaction to the combined treatment is due in part to my only having Hepatitis C mildly. The National Institute for Clinical Excellence (NICE) intends later this year to review its new policy of allowing treatment for those with mild Hepatitis C. I would expect NICE to collect robust statistics to correlate advancement of Hepatitis C with severity of treatment side effects as well as with overall results.
By evening felt tired and groggy again, but gained a bit of second life writing up the last two days' blogs.

Day 23 (9 Jun '07) Jon's Hepatitis C Treatment

2007-06-10T21:11:00.000+01:00

Got up early to leave confrence and drive home for 9am. Felt very heavy and wooden all day with an underlying queasiness and developed a hacking dry cough. Did some homework during the day and had a two and a half hour sleep in the afternoon. Felt better and well armed for a social bridge session.

Day 22 (8 Jun 07) Jon's Heptatitis C treatment

2007-06-08T14:42:00.000+01:00

I was surprised that when I woke up around 7.30am that I seemed pretty normal, apart from a bit of heaviness. Had a busy schedule at the conference again. From time to time had a slight pain in my chest but it soon went away. The throat is back to normal and OK now. I have surprised myself - I thought that I would be a semi-invalid at this conference, but everything has gone well. I haven't even felt irritable in the last two days!
Had some excellent food put in front of me at the conference but I only picked at it. It have tried to eat as nutritiously as possible. Felt very heavy and a bit queasy by the end of the evening and went to bed early.

Day 21 (7 Jun 07) Jon's Heptitis C Treatment

2007-06-08T14:38:00.000+01:00

Had a hectic day at a major conference. Felt a bit woozy at times but did my best to take things easy. The day sped by and I felt almost normal. Had put my Interferon syringe in the fridge in my room and took my fourth injection later at night, followed by my three Ribavirin tablets. It all went smoothly. It crashed out and slept pretty soundly till 7.30am.

Day 20 (6 Jun '07) Jon's Hepatitis C Treatment

2007-06-06T14:32:00.002+01:00

Had to get up at 6am for an early conference meeting in central London. Head was swimming a bit and felt a bit heavy, but putting the final touches to my paper on the train and walking to the venue in the sunshine helped my sublime any symptoms. Everything went well at the event and I came home early to prepare for another conference - this time a three day event away from home. This is a bit daunting, especially as I have to take my injector with me and keep it cool ready for my Thursday injection tomorrow.
Am determined to take it easy at the conference and monitor myself carefully.

Day 19 (5 Jun '07) Jon's Hepatitis C Treatment

2007-06-06T14:28:00.000+01:00

Slept well, and had a good day, apart from one or two dizzy spells and feeling a bit wooden. Fely crushingly tired by the later evening though. Managed a productive day at work - prepared my conference paper for tomorrow -but did get irritable once at work. I must keep the lid on that!

Day 18 (4 Jun 07) Jon's Hepatitis C Treatment

2007-06-05T19:48:00.000+01:00

Did not sleep so well - kept waking up but did feel refreshed by morning. Felt heavy and a bit dizzy.
I am keeping at work during my treatment - people at the focus group I attend say that working helps, if you can manage it. I seem to be able to cope, except I do feel strong irritation bubbling inside me when I come across nonsense or short-sighted behaviour. I have to tell myself to count to ten and not fire from the hip!

Attended my monthly focus group this evening. I am not able to say anything specific about this except to say that it is a tremendous support group, organised by the Heptatitis C Trust, which does a fantastic amount for Hepatitis C sufferers in the UK on very slender resources. The composition varies each month but there are always regulars and people who come from time to time. The breadth of experience is very wide. Several types of Hepatitis C are represented, the most common being the hardest to cure, genotype 1 - like mine.

Among the people I have met with Hepatitis C over the last few months there has always been a debate about whether or not to have treatment. The Interferon and Ribavirin combination affects different people in different ways and some would prefer to tackle natural palliatives, such as herbal treatment, or to wait until a more assured, and less body battering treatment comes up, especially for genotype 1. There are strong hopes for the VX950 experimental treatment right now - having met someone who successfully cleared genotype 1 in only a few weeks, and who reported a strong success in the trial, I am very optimistic about this. I was not prepared to wait. Treatment though is an invidual decision.

The Hepatitis C Trust offers support to everyone and not judgemental about whether or not to have treatment. One facility the Trust offers, which is very comforting, is a patient advocacy service. I know that my treatment will be reviewed after three months. The current National Institute for Clinical Excellence (NICE) guidelines say that this should happen. After three months there is a qualititative PCR test, which is a viral load test to see if treatment is working, in terms of lowering the viral load. It is if there are any question marks in this area that the advocacy service could be a great help. But for me that is still some way off.

Several people I know with Hepatitis C suffer terrible itching. There are various remedies, well documented on the Hepatitis C Trust website (www.hepcuk.info), but ones I have heard recommended by word of mouth include a product called Oil Ulate, which you put in the bath. Also lavender oil in the bath is recommended. One remedy I am keen to try at some stage is shey butter, a West African remedy from the shey tree. My itching is just minor and a dab of antiseptic cream seems to do the trick at the moment.

I have debated with myself whether or not to take the herbal remedy Milk Thistle, which is good for the liver. There is information from herbalist Claudia Lauch and others on the Hepatitis C Trust site. I have decided not to use it at present during treatment but to re-evaluate this decision in the future.

One food that I have tried to have a lot of is smoothies. I am trying to ensure I am getting plenty of natural Vitamin C - and making up a smoothie on the blender is a good and very palatable way of doing that.

It is very sobering but of the people I have met having treatment I certainly seem to be suffering the least, which puts everything in this blog into perspective.

Day 17 (3 Jun 07) Jon's Hepatitis C Treatment

2007-06-02T10:36:00.001+01:00

Had a good sleep and settled in for a quiet Sunday....
Have a bit of a sore throat and a bit of difficulty swallowing - it's been with me for a couple of days but only gradually impinging itself. Am determined to hold out as long as possible against taking any extra medication for it though!
Have been a bit irritable from time to time but no only major symptoms. Felt very leaden by about 9pm when I went to bed with the usual Ribavirin tablets.

Day 16 (2 Jun 07) Jon's Hepatitis C Treatment

2007-06-02T10:36:00.000+01:00

Woke feeling headachy and a bit groggy, and a bit of a heavy throat, but determined not to take anything for it. Quickly settled into the day and carried through to evening when I had a half hour lie down and then out to some friends and back latish.
Did a quick review of progress to date, going through the side effects I was warned about.
I have not lost my appetite; my skin does itch a bit in places, but not uncontrollably; I sweat a bit from time to time but not inordinately; I sometimes have a bit of a disturbed sleep and often wake up about 2am, but I do not suffer insomnia and I usually get back to sleep fairly quickly using yoga breathing; I do feel wooden and tired from time to time, especially at the end of the day; so far, the treatment has not affected my work, and I have not had to take any time off (apart from going to the hospital appointments.
So, so far, so good. But it is still early days.

Day 15 (1 Jun 07) Jon's Hepatitis C Treatment

2007-06-01T16:33:00.000+01:00

Got up 7.30am. Apart from a slight heaviness, I feel fine and felt fine all day. I keep asking myself: "Am I getting off lightly so far?" - although I am well aware there is a long way to go. By about 10pm I felt very heavy, so took the Ribavirin and crashed out. Woke for about half an hour at 3.00am but otherwise fairly sound sleep.

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

2007-05-31T09:25:00.001+01:00

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

2007-05-31T09:00:00.000+01:00

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

2007-05-29T08:27:00.000+01:00

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

2007-05-29T08:17:00.000+01:00

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

2007-05-29T08:07:00.000+01:00

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

2007-05-26T09:36:00.000+01:00

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

2007-05-25T09:04:00.000+01:00

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

2007-05-25T01:08:00.000+01:00

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

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

2007-05-23T23:56:00.000+01:00

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

2007-05-22T23:50:00.000+01:00

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

2007-05-21T23:50:00.000+01:00

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

2007-05-20T09:00:00.000+01:00

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

2007-05-20T08:45:00.000+01:00

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

2007-05-19T11:13:00.001+01:00

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

2007-05-19T10:18:00.000+01:00

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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