Thats right I said Hepatitis L.

It’s not what you are thinking, it isn’t a new genotype its just a phrase a friend of mine has coined and of course the L stands for LAZY. I must admit I laughed more than I have laughed for months. Its a good sign of me feeling better, 1st stage was my return to, for want of a better phrase, taking the piss which is my natural state. 2nd stage is people taking the piss back which is a sign that they recognise I am feeling much better. All in all thats a good thing and of course my friend had a point. Read the rest of this entry »

Or more specifically hepatocellular carcinoma, commonly known as primary liver cancer or hepatoma. Or to put it another way cancer that originates in the liver.

Now liver cancer is rarely good news, those of a sensitive nature or those who think if you ignore something it will go away should use the back button convientently located in the upper left corner of your web browser. Read the rest of this entry »

Had a good week really, the improvement over the last few weeks has continued.

Physically nothing much has changed:

tired - check
sore eyes - check
dry mouth - check
insomnia - check
face flaking like a good un - check
icthcy scalp - check
aches and pains - check
pounding headaches - check
foggy mind - check
little appetite - check
etc etc - check

All much the same as before, just minor stuff really which on its own would be nothing, added all together its something but to be frank not that much. I’ve been in much worse states than this by my own hands

Mentally things are on another level. At my lowest point I just decided I didn’t want to feel this bad for so long, so I decided not to. I wouldn’t under estimate the role of a positive mental additude on treatment, it can make a difference.

Lets get down with some jargon. Read the rest of this entry »

Tired of all the sympathy?

People getting on your wick with their “understanding”?

Feel like you would benefit from a swift kick up the arse?

Then today is your lucky day. Hep C Boy Inc. is proud to announce the launch of an innovative and completely free of charge service, Ladies, Gentlemen and those of uncertain gender I present to you Hepatitis C Boot Camp.

Its real simple, you post a comment [a whine would be good] and I abuse you. Sounds like fun don’t it

As a special offer I will reply in ALL CAPS. It really doesn’t get any better than this, just don’t forget to bring a baggie fo yo teef.

GO!

All quiet on the Hep C front.

Been a good week and has followed the trend of late of improving since about week 8. A few minor niggles mainly a cold sore big enough that it may need its own national insurance number but apart from that its been plain sailing.

I even *gasp* went into work for a few hours this week and one of the guys also came up on Friday to help me get some tasks completed. I am hoping to get into work more often and generally get more active, I’m hoping this will help with the major problem I have of not sleeping as the exercise bike isn’t really enough activity on its own. My dream is to able to start a little light weight work, I really do miss that.

My plan has very much been to take the first 12 weeks easy, my feeling is that these weeks are the most critical and I have tried to allow my body to focus on killing the virus. The avoidance of stress has been very high up on my list of priorities, I’ve been pretty successful at that.

The only other thing I would say has changed is that I have become a little more cold hearted, there is a small emotional detachment going on. I think there are a few reasons for this, the treatment being one thing that can nudge you towards this. Also I have my 12 week PCR test coming up soon, its a critical time and the temptation is to worry about it but….”If you can meet with Triumph and Disaster, And treat those two impostors just the same”. Mainly though its a natural result of the nature of long term illness, you have many battles to fight and won’t win every one. The important thing is to fight hard, fight smart and fight long. When you look in the mirror and every day you can tell yourself you fought well then life becomes series of small victories not a pattern of swings between highs and lows.

In brief…stronger,fitter, more focused and I think just generally more used to the treatment. I think that the body is very good at adapting to things, it just needs a little time to catch up.

Keep the faith, kill the virus.

The significant other [actually the wife but we have to say SO nowadays to avoid offending people who aren't married] had a few spells of the tears in the last week. The usual, worried about me being ill, what the future holds and so on and so forth.

You have to choose your own path but this is what I find to be helpful at times like this. Sit her down [or him I suppose] hold their hand firmly but with love, pull their head towards your shoulder and as their ear gets level with your mouth whisper softly [its important to be gentle at this stage] and say “I’m the one whose poorly, get a grip”.

HTH.

Weeks 7,8,9 and 10 are past, let me give you the lowlights.

It seems to be quite common that the “wall” is hit round about week 6ish. I think its the time when the drugs hit full dose in your system and it can hit hard. Nothing too bad but I have spent most of the last few weeks in bed

Thats out of the way, week 9 was better than 8, 10 better than 9.

Now for the good news. The “wall” is a good reminder not to get too cocky with the treatment, hard for me as I seem to have a genetic predisposition to cockiness, so in many ways it is beneficial to be reminded that you need to keep your focus.

The other good thing is that it sort of forces your hand, makes you have to think about the weeks and months ahead and how your attitude can help shape the future. It must be a bit like being lost in the arctic, the sub zero temperatures making you just want to lay down and have a little sleep but you know if you sleep you die. Although the end result was never in doubt I found the thought process interesting, the temptation to bend a little, roll with the punches etc is there. To cut a long story short I came out the other side with my determination to push forward reinforced, I will not yield an inch, I will not take a single step backwards.

I’ve said it before but here it is again…Mr Hep C Virus chose the wrong boy to pick a fight with.

Buy a pill box [you may be able to get a free one from your nurse but the pound type shops sell them], you will forget whether you have taken your ribavirin or not sooner or later, a pill box will take the thinking out the job.

Where shall I start….

Last week was, in a word, awful. Most of the time spent in bed just completely worn out and the continuing battle against insomnia. Then we have the legs, let me tell you about the legs. Its not really cramp, nor an ache, nor an itch its just a strange feeling of unease in the legs at night. A very low level but just above the level at which it becomes noticeable and just simply stops sleep get in its track, you just can’t get settled. I probably haven’t described it well but it is very strange, almost a feeling that the legs don’t belong to the body.

After the winter comes the spring.

This week, week 6, has been much much much much better. Had the 6th injection yesterday and that laid me pretty flat as it always does. I’m guessing that is partly mental as it hits me immediately after the injection, I just have to lay down, but I do find the injection process quite stressful. I think partly that is to do with my past, since quitting using drugs almost 20 years ago I have managed to build up a very healthy fear of needles. Thats not healthy to everybody but to an ex-drug abuser its not a bad phobia to have The downside is that it makes injection day that much harder on a mental level. Since then though I’ve been flying a bit, good nights sleep last night and even managed to get some quality work done today ,even left the house for an hour [go me!].

I’m sure worse is to come but I think I am at the level now where I am almost used to feeling shitty, it has become my new normal, normal is good. The other rather pleasing thing is that I seem to be “carrying” my liver less. Its hard to describe but it has felt for some time like I have been carrying my liver, I could feel it like weight in my side. I guess thats because it was inflamed and swollen and I’m guessing now that its not as inflamed and swollen, that makes Hep C Boy smile.

So in brief, week 5 very bad, week 6 [so far] very good. I’m optimistic about the rest of the week too, a good start seems to determine the rest.

The further in I get the more it seems that Hep C treatment is not about occasional flashes of brilliance its about grinding out a result. You are better with a Claude Makelele mindset than a Zinedine Zidane one.

And yes I know I’m an awful whiner.

Lets have a looksie shall we?

It’s been 11 days since my last injection and 5 since I took the last of my Ribavirin tablets and my health seems to be improving. No doubt my mood has gotten better now i know theres no more pink pills or injections.

Alan - Glasgow

Last week there were several people who commented on how well I looked, one even spontaniously said “your treatment has really worked, hasn’t it”.

Jonathon - Norwich

One of the big things that I’m pleased to lose is the “sick person syndrome”, that I believe is a normal response to being diagnosed with an illness, and especially to undergoing treatment. Despite trying desperately to lead as normal a life as possible on treatment, it wears you down and with that comes associated feelings of helplessness, dependence on others, isolation…. a quasi victim mentality.

Sue - Toronto

Yes…… It is not a dream, this Monday I really have done the last injection very smoothly followed by special Kit Kat with caramel.

Ijaz - Middx

I feel much better physically, am putting weight on slowly (about 4 lbs so far) and have a lot more energy.

Lu - UK

But, having said that, I have actually felt pretty good since end of treatment (August). A lot of that has been about the mood cloud lifting and the tiredness easing off. With the depression and the anxiety in abeyance the whole of life is transformed. I couldn’t say I’m in full bouncing 21 year-old health. But then I’m not 21.

Jane - UK

Yesterday I did have a sense of triumph that I had managed to carry out a full day of ‘ordinary’ activity all day on Friday – without needing breaks, slowing down or a rest during the day. On the go from about 8 in the morning to 8 in the evening. It’s been a while since I could have managed this pace of activity.

The Godfather - UK

Ok thats enough inspiration for one day, back in the trenches soldier, we got virus to kill.

First the doctor told me the good news.

I was going to have a disease named after me.

-Steve Martin

As with all things new and medical don’t hold your breath for real world results but its encouraging that people are looking for solutions.

A Japanese research team says it has found a method that prevents the hepatitis-C virus from multiplying.

The method deals with cells infected with the virus, not the virus itself, meaning drugs could be developed to stop the multiplication process while preventing the virus from becoming resistant, the researchers said.

source

Us hepper’s are a talented bunch you know, take a listen to this hep c ditty, words by MadPaulo music and performance by john_boy, the guys hang out here. I’ll bet my bottom dollar that once they get signed to a record deal they won’t want to know little Hep C Boy again, be a life of luxury surrounded by super models for them I guess.

I think its quite likely that it will contain some offensive words, if you are easily offended then don’t listen, you may be at the wrong blog too.

Or click here to download the song

Click the link below to read the lyrics.

Read the rest of this entry »

Had the fifth shot of Interferon today and finished the first months supply of ribavirin, thats a whole 168 tablets!

A blog like this can be a little deceiving, certainly in my case I tend to post only when I feel OKish, hence you will see that the posts tend to come in bursts. Well tonight is a little different, its about 10 hours after the Interferon injection and about an hour after the second slug of the ribavirin. Its difficult to say how I feel without swearing, lets just settle on roooough!

Don’t get me wrong, its not the end of the world but a combination of the injection, the build up of the riba in your system over the last few weeks, the lack of sleep the night before and now toothache has a tendency to pull you down somewhat

The other strange thing is that almost as I am pushing the plunger of the syringe in I can feel myself drying out. I’m normally a pretty greasy guy, make Jermaine Jackson look normal, but I could get away with not washing my hair all week when before it was at least once a day to prevent the chip pan look.

Been struggling a little with the riba rage today also, sparked off earlier when I parked my car for the hospital appointment. The stress involved in parking at the hospital itself is more than a boy can take so I found a nearby pub car park and park and walk. As I got out the car today some pikey looking geezer in the car wash next door threw me a look, like it was his car park. Its amazing what can be communicated in a split second via non-verbal means with just a look of my eyes, suffice to say he looked away pretty quick. If not, and I’m not a betting man, I’d have put money on him joining me at the hospital.

Lets just say I have kept out the way of everybody since then

Got my bloods from last week, ALT down to 83, which ain’t bad but hemoglobin down to 14.2 from 16.7 over 3 weeks of ribavirin. That may well be normal and I’ll try and find that out but looking at the downward curve of they graph don’t make a man feel good. There are medications that can help if the hg falls real low [less than 10 I think is real low?] but I don’t think its standard with my people, I think they look to reduce the riba dosage. Now I’ll wait and see but as it is now ain’t nobody going to reduce my dosage, I’m in it to win it not for the enjoyment of the challenge. I’m sure that budget plays a big part in the decisions and for example procrit [which seems to be the drug of choice of our American comrades] is very expensive, very. We shall see, lets just hope that the hg level stays the right side.

Having said all that and had a bit of a whine I’d much rather take this than sit around letting that virus just chip away at my liver.

I’ve said it before and I’ll say it again, only going to be one winner in this game and its not going to be Mr Dying in Agony Hep C Virus.

Keep the faith - Kill the virus

Talking of treatment, European approvals just announced are going to have a small impact on treatment in some cases. If you have genotype 1, a low viral load, and are starting treatment with PegIntron (not Pegasys, at least at present,) then you need to be aware of the changes. Those that achieve ‘undetectable’ status at four weeks can reduce treatment duration to 24 weeks instead of the usual 48 weeks. This is a lot less of an ordeal than before, and gets exactly the same results.

By way of Martins Blog, you know the one you need to put on your *must* read list.

Its not possible to link directly to Martins individual articles [I think] so in case it slips down the page here is a link to what I assume to be a copy of a press release with the relevent info. Short version below.

Shorter Course Combination Therapy Approved in European Union for Certain Hepatitis C Patients

Schering-Plough Corp today announced that the EU Commission has approved revised dosing instructions allowing for a shorter 24-week course of Pegitron and Rebetol combination therapy among a subgroup of patients with chronic hepatitis C virus genotype 1 and low viral load (less than 600,000 IU/ml) who have achieved rapid virologic response, defined as undetectable virus (HCV-RNA negative) at week 4 of treatment that is maintained through week 24……Approval of this shorter combination treatment regimen cuts by half the duration of therapy for a subset of hepatitis C patients with genotype 1 and low viral load.

Rule 3

Be ready to go on the “B” of the Biopsy.

Now remember I’m a UK boy so YMMV but….

You will probably experience quite a bit of time between first presenting at your Doctors with symptoms and starting treatment, somewhere between 6 and 12 months seems about the going rate. There are a few milestones on the way but imho the liver biopsy is the biggie. Not everybody has a biopsy, whose purpose is to judge the state of your liver damage, but I think most do.

Its really the results of the biopsy that will determine the severity of liver damage, you need to prepare for the possibility of bad news although in most cases damage is fairly light.

My advice is not to wait for the biopsy results before you start to take positive steps to improve your health. I would start the moment the first blood tests come back with elevated ALT levels or indeed on diagnosis of Hepatitis C. Its at those key points that you need to start getting ready for the biopsy results, by that time you need to be in the starting blocks and ready to GO!

I think the original quote was something that Linford Christie said, in effect to win a 100m race you need to go on the B of the Bang. I think that applies to Hep C too, pre-biopsy you aren’t really in the race but trust me you will once the results come in. Just like Linford you need to start “training” before that starting pistol gets fired, its a bit late once the race is underway.

And just a reminder, I’m not a Doctor, I’m just a boy with Hep C. By all means read what I have to say but don’t take any actions without consulting your medical people.

Oh and don’t be lazy, do your own research too;)

I’m 6 tabs short of full dosage, looking pretty good though eh?

I know what you are thinking…….is he or isn’t he wearing harmony hairspray. A Gentleman would never say.

Sue from Toronto is doing rather well.

As our American cousins would no doubt say, you go girl!

Is a year since I was diagnosed with hepC and almost three months since completing combo therapy. Now that treatment is finished, there’s not as much relevant material to post in the blog – life is flying and my world has returned to the hectic pace of work deadlines, bringing up teenager, getting together with friends, keeping the house together, and, of course, development of mind and body.

Read all at http://suetoronto.blogspot.com/2005/10/october-15-flying.html

Rule 2

Keep your friends close, but your enemies closer.

It seems that there is a certain demographic of Hep C people who view the medical profession as their enemies, this leads to potential conflicts in treatment. My view is that it is a team effort in beating the virus, to wage war effectively you need all members of the team “on message”. Be nice to your doctor, be nice to your consultant and be especially nice to those nurses, you may be seeing a lot of them in the future.

Turn your anger and frustration against the virus not against the medical people trying their best to help you. Be honest with them but, to lift another quote from the Godfather, “Never tell anybody outside the family what you’re thinking again.”

Martin has some excellect “rules” at his site, well worth a read.

Let me chip a few of my own in over the next few weeks.

Rule 1

A very dear friend of mine, who has had a lot of experience of chronic illness in his family over the years, hammered away at me with this until I understood exactly what he meant.

Rule 1 is simple, get your affairs in order before you start treatment.

Simple things that you do now will allow you to fully concentrate on your treatment, after all the hepatitis virus doesn’t kill itself, you need to focus on it fully.

Stuff like paying up your bills, up front if you have the finance or setting up direct debits if you don’t. If you will need financial help during treatment get on the web and see what is available, get down the citizens advice or similar organisations. Get it done now.

Get used to ordering stuff online and have it delivered, most of the major supermarket chains offer home delivery, and there really isn’t anything you can’t buy on the web nowdays. Get it done now.

Most of all get off your backside and get organised, your backside will get plenty of rest once you are on treatment.