Sep
03

My Recovery From Hepatitis C Treatment

I finished taking my last Ribavirin pills on a Wednesday morning, by the next day I could feel the spring in my step starting to return. Whether this was a psychological thing or not, who knows,  but the fact was that I started to feel better almost immediately. Don’t get me wrong I had never felt particularly poorly throughout hep c triple therapy treatment, I just seemed to have a little extra energy.

After just two weeks of being drug regime free I can say that I was back to my old self 100%. I can categorically state this as I record my performances at the gym where I workout. I never lost any strength during treatment but my cardio-vascular (treadmill running) performances had been way down, due to reduced haemoglobin levels I guess. However, I managed to equal my personal best performances on the treadmill just two weeks after treatment, I had a lot of aggression and frustration due to recent poor workouts to get out of my system and I enjoyed this achievement immensely!

I have suffered no after effects from treatment at all. In fact, now five months later it is all but a distant memory! I mean seriously it is just another episode in my life that happened and has now closed. I say it has now closed because recently I was away in Bangkok passing through whilst on holiday in the region. As you may recall from my earlier posts, Bangkok is the place where I both picked up the Hepatitis C virus (probably from dirty needles at a dental clinic after having numerous root canal work, read full post) and where I was diagnosed with having it too, read full post. So, it seemed appropriate that I should go and have my final PCR/viral load test whilst there. I could have waited to have it on the NHS but I wanted to find out if I was still undetectable or not.

The hospital I went to was called BNH hospital, a very high quality hotel in the region and as such it is like entering a 5 star hotel :) I explained my situation to the doctors and had the test which would take 3 days to produce the results. Three days later the hospital e-mailed me the results as an attachment as agreed with the happy news that I am still HCV undetectable i.e. there is no Hep C virus in my body, or at least at such a low level as to be undetectable.

I have now tested HCV undetectable at weeks 4, 12, 22 and now 5 months post treatment. All the research (some interesting related images/diagrams/charts here) seems to suggest that I am now ‘cured’ of this thing! It is such as wonderful feeling and putting the effort into going through the triple therapy treatment was so worthwhile. I could have sat back and ummed and ahhed about whether or not to take the treatment or not and could still be doing that now. I am so glad that I was decisive and took action. Thanks to the wonderful services of the NHS and my own determination I now feel like a ‘free’ man again with no underlying health issues at the back of my mind.

I guess if I want to pass on any advice to anyone it would be to give treatment a go at least. It may not be as easy for you guys as it was for me but surely it is worth giving it a chance when the potential benefits are enormous. Of course it is only my opinion and everyone is different but I can only speak from my own experience, be positive and give it a go.

I would like to add one more thing here about recovery from hepatitis C triple therapy as regards alcohol. Alcohol is always a very touchy subject when mentioned in the same breathe as hepatitis C and I repeatedly read that you probably shouldn’t drink a great deal after finishing treatment. There has been no research into whether it effects the attainment of SVR or not if you drink post treatment, however, in my case I soon sank back into my old ways with nights out with the lads drinking plenty of beer and enjoying myself. In my situation it appears to not have adversely affected the outcome at all. For others this may be different and you will have to wrestle with that decision for yourself but for me after finishing treatment, and even drinking a bit during hep c treatment (see full post regarding hep c and alcohol here) it has not effected me at all. I did start from a relatively strong position though with zero liver damage and having only had the virus less than 4 years so of course that may have helped.

So, there it is, the happy end to my hepatitis C treatment. I’m not sure what I’ll do with the blog from here on. I guess I may do the occasional additional post if I feel inspired to do so and try and add some more useful information for others. I may even open it up for others to post about there experiences. I would love to make this a really positive blog of people sharing there experiences of living with/treating hepatitis C, let me know what you think…

Cheers and all the best!

    May
    20

    The End of My Hep C Treatment!

    The first half of my hep c treatment flew by, but the second half seemed to drag on a bit. I’ve been counting down the days until it would be all over since about 5 weeks ago. In fact, I had a calendar which I made especially, in an Excel document so I could mark down my treatment period and then tick each day off as I completed it. I found this quite rewarding and motivating and it really helped to keep me on track as I found the mental side of treatment more of a challenge. Physically I have basically been fine. However, it seemed like every pill annoyingly reminded me of the disease I have/had and finally stopping treatment has provided immediate relief on that.

    It was a Wednesday morning when I took my last 4 Ribavirin pills and I finally knew I could put it all behind me. Staring at the 4 little pills in my hand I clearly remembered going to see the clinic nurse for my first injection, and then listening to her explain how problematic the treatment could be… and then asking me again if I really wanted to do this. I remember being annoyed at this, having already made the decision, to then tempt me to pull out before I had even started seemed unfair. However, in my head the needle may as well already have been in my body because I had made the decision already and I knew I would see it through. And that is the way I looked at it from day one, as something I would do, get through, get over and then move on from.

    Having finshed 4 days ago, now I am in the ‘getting over phase’. I’m taking a week to relax a little, have a few drinks (I really missed a few beers with my mates and old man) and generally dwell in my own feelings for a while. By the end of this week however I will be moving on. I have a few things I wish to achieve in order to put this whole thing behind me and to indeed comeback better than before I even started treatment.

    The first thing I want to do is get back in shape physically. I put on a lot of muscle over the course of the treatment through eating dairy (first 12 weeks on telepravir) and lifting heavy weights (I’ve always been a bit of a gym nut). Aerobic exercise couldn’t be done to my usual levels (heamoglobin dropped a tad making this difficult) and so I put on some weight in muscle and fat. I started treatment at 97kg went up to 103 kg after 12 weeks and I am now down to 95kg. However, I intend to drop another 5kg within the next 2 months which should see me in very good shape for a nice long haul holiday I have planned thereafter. This is my way of moving on from my hep c treatment.

    After that I shall take stock of everything and set some new goals. I know having goals like this isn’t everyone’s cup of tea and may even sound a bit pretentious but it works for me and helps give me a focus. Having said all this, I do feel the need to say how much I wish (not miss) to thank all of the wonderful doctors and nurses that have seen me through this procedure which has dragged on for over 2 and a half years since my first blog post and contact with the NHS, and over 5 years since I first found out about my diagnosis.

    I know these people are paid to do their jobs but still against what I see as a difficult backdrop of budget cuts etc.. I feel they have done a great job managing my treatment. Anyway I digress, I thought I would share a few photos of my meds here, as a final way to say ‘goodbye to them’ As you can see they are all pictured here, and how wonderful and shiny they all look too! (Apologies, the wire I need to get them online has gone astray so I will have to add them at a later date, shucks, but I’m gonna post anyway as this is going out in real time and chuck in some hepc pics I like instead).

    And so, what for the immediate future? Well, I haven’t even had my final viral load check yet and I’m not SVR yet, but here I am getting all teary eyed about leaving it all behind. Truth is, I very much hope to still be undetectable… but I know I did as much as I can on this hep c treatment and that I will not put myself through it again if I am still detectable. I will then wait for better hep c drugs to come out in the future. This means that regardless of my test results I am certain about the future and that is a nice thing to be.

    I will be posting again shortly to relay some more thoughts on treatment and of course, to inform you of any lab results that come my way. In the meantime please feel free to add you own advice and comments to any of the articles. Your comments and suggestions are very helpful for other people and myself. I want to make this as useful a resource for others to view as possible and I know that not everyone has it quite as easy as me but I’d like for my version of treatment to offer some hope to others considering doing it too.

    Thanks for stopping by guys!

    James

      Apr
      22

      Forgive Me Father For I Have Hepatitis C Sinned – 20 Weeks Down!

      Amen to that!

      Yes, that’s right folks, it seems that I have wilfully broken the golden rule of hepatitis C treatment. I opened a can of the amber nectar and enjoyed a few cans of the good stuff!

      Yeah, yeah, yeah…. I know you are not supposed to go anywhere near alcohol on hep c treatment. I even blogged about it a few months ago here: hep c and alcohol.

      However, here is the thing, after 18 weeks of treatment (3 weeks ago), I was starting to feel a bit like I was on a treadmill, and a boring one at that. I couldn’t take my usual long haul holiday at this time of year because of the hassle of carrying the meds through airports (doc discouraged me) and I kind of felt life had been closing in a little. The first 12 weeks really was quite a regime of pills and injections and I guess it was all kind of getting to me. Alcohol provided the release I needed:

      Here is how I rationalised it to myself:

      1)     I deserved it, I had earned the beer after 18 weeks of ‘hardship’.

      2)     I had had an eRVR and I am ‘free’ of the virus at present.

      3)     My blood work is all fine, nothing dangerously low or high, ALT coming down nicely.

      4)     The nurse actually said it would be ok to have a ‘night out’ and that it would do me good. I found this approach really strange but was glad to hear it!

      5)     Shit, if I didn’t do something to break the monotony of it all soon, I think I’d have put the next injection in my forehead or something just to liven things up a bit.

      So, I had a few beers. A few days later I had a few more and a few days later a few more. Nothing major each time, say 2-3 pints of Fosters, 4% stuff, hardly likely to make me start me doing ‘the robot’ at 2am in the local nightclub. I had read rumours that you would get a massive hangover or become really sick the next day, or something, but truth be told I felt just fine. I took all my pills and injections still and life continued as normal.

      Overall, of course I would strongly recommend you/anyone steer(s) clear of the stuff on treatment. My health situation may be completely different to yours and I haven’t had a SVR yet, so who knows if I have ruined all the treatment I have gone through so far or not. However, I’m glad I’ve had a little taste of the good stuff again, it made me feel alive and gave me a chance to escape somewhat.

      It has renewed my motivation to finish treatment and I think has actually helped push me towards the finish line. I realise I have jeopardised my chances of success somewhat, possibly, maybe, I’ve not read any studies that really research whether someone in my position (ERVR and no intila liver damage after 18 weeks of triple therapy) drinking, but what the heck, it is done now, I have no regrets about it and may even continue to have a couple of beers at the weekend just to give myself a little reward for another week completed.

      Alcohol and treatment seems to be a very touchy topic on the forums that I’ve scouted out, with the majority of people being vehemently against it see here (and even after treatment), but hey, it’s horses for courses I guess. If anyone out there has any credible studies on this topic I’d be interested to see a link (other than the usual ‘alcohol is bad for your liver blah blah blah’ line – we know that, I’m after more specific info), cheers.

      Anyhow, as I said, I’m on week 20 now, so only 4 to go. I’m really looking forward to the back of the pills now. I can’t say that I’m having any particular side effects really, maybe a little grumpier than usual but certainly nothing to get worried about, I’ve been fortunate throughout treatment really. I haven’t had a day off work yet (touch wood) and have continued with the exercise throughout, albeit to a slightly lesser degree.

      Well, that is my quick little update done, I’m off to the off-licence to grab a few cans…… or am I?

      PS, The ring of fire seems but a distant memory!

        Feb
        19

        12 Weeks of Hep C Treatment – The Story So Far – eRVR?

        OK, so I lied. In my last post I said that I would be posting regular updates on my hep c treatment blog but things haven’t really worked out that way. I’ve been super busy at work and don’t seem to have had a great deal of spare time. Anyway, here I am. And this post will hopefully bring my story bang up to date.

        Last post (week 1) I mentioned that the Telepravir was causing some pretty serious issues with my my backside. STOP reading now if you don’t want to now to what extent, and start reading again where it says ‘start’ in capitals below. I have found 3 main problems over the 12 weeks of Incivek Telepravir:

        1. An itchy ass (sorry to be blunt). Yup, just a plain old itchy backside, right on the inside of my whatsit. I never imagined I would become so intimate with this part of my anatomy. Solution: a good old scratch (preferrably in private!) and application of the only cream I have found to calm things down a bit – EUTHRAX. This problem was most prominent in the first 4 weeks and has since occurred only every few days but is embarrasingly uncomfortable.

        2. A flaming/throbbing ring. On occassion the area just outisde has literally flamed and throbbed. It has just been burning! This has been painful at times. Solution: Ice, or trying to go to sleep and hoping that I wake up in a better state (generally I do). This occurred regularly for the first 4-5 weeks and then became more sporadic after that. A bath also helped, but only really to mask the throbbing.

        3. Blood and pain on bowel movements (Anal fissures?).  Yes, quite literally. The first 4 weeks were really problematic in this regard. With all the added food intake and meds something had to give and it seemed for me it was the thin layer of skin in that sensitive region. This created raw areas which were extremely painful during number 2′s. I’m talking excruciating pain here, I had to bite down on a towel and try and get it over with asap, but even then the after shock of the pain left in a state of shock at times. Solution: well, I used vaseline to try and smoothen things out but nothing really worked. This pain eased considerably after about 6 weeks when I think the skin seemed to start repairing itself, but prior to that it was as one forum poster described: “like passing shards of glass”, I’d have to agree.

        The leaflet that comes with the incivek does basically describe the exact symptoms above (but few get them – less than 30%), so I wasn’t overly concerned to have them. Whilst they were certainly unpleasant, they were not all of the time and have eased, especially after the 6 week point. The best way I found of dealing with this issue was to simply, think to myself ‘yeah this is a pain up the butt now (pun intended) but I just know I’ll look back and laugh at all this in a few short weeks time’…. and here I am doing just that!

        I found loads of useful forum threads about these issues, for example here and here which were comforting in showing me that I was not alone and include some great tips for coping. I do think at first though I didn’t help myself very much by eating foods that I am not used to, to get the fat intake. this upset my stomach and aggravtaed everything. Once I reverted to foods I am more used to things settled down and started to get better. I simply ate more of what I was used to rather than eating foods that were new to me but higher in fat content.

        START reading again here. Aside from the Telepravir butt issues I have been mercifully free of any major side effects! I have worked full-time, long hours and coped fine. The injections are really easy to do yourself with the cool little pen device you get and the weeks have really flown by. I think keeping busy has really helped. It would be so easy to start feeling sorry for yourself and just laze around the house all day (I know some people do get so sick they can’t move) but that would have made the time drag and made me feel miserable. I have noticed these last two weeks that the day after my injection (Saturday) I am quite sleepy, so maybe that is the meds catching up with me. However, relaxing around the house snoozing on and off is no real hardship and if sufficiently motivated I can do all the usual stuff.

        As regards exercise (I’m a bit of a sportsman), I made it my goal to use this period of having to eat 20g of fat 3 times a day into a mission in putting on more muscle bulk. So, I have been hitting the gym hard and lifting heavy weights. This is part of the reason my weight has increased significantly (about 6kg in 3 months). I am a lot stronger and can lift a lot more and look more muscley, although my waist line has also suffered somewhat. I have been getting my fat from dairy products high in protein i.e. cheese, whole milk and eggs. Nightly omelette, scrambled eggs etc… have made this possible.

        Aerobic exercise has been a little more tricky, whilst all my bloodwork has remained pretty good my haemoglobin took a hit and is down to 12.5 (but even that is pretty good I think). This has made it much harder to run on the treadmill. Normally I can run at 15km/hour on a 5% incline for 2 mins straight (as part of an interval training workout), however at the moment I can only really manage 13km/hour on a 1% incline. Better than nothing but a big drop in fitness levels nevertheless, it feels like the same effect as walking at high altitudes in thin air. I’m sure I’ll get back to where I was fitness-wise pretty soon after finishing treatment. Out of all of this there is one really cool positive I have noticed about this treatment, and that is that it is all only temporary. As soon as I/you stop the meds (or not too long after) things will start getting better.

        Oh shoot! Nearly forgot the most important part of all of this! After 4 weeks the doc phoned and told me I had had a rapid virological response and was undetectable at week 4! Awesome news, which really spurred me on. Tomorrow however I am going for the next viral load check and if this one comes back as being undetectable too that gives me a really good chance of getting ‘cured’ (SVR – a sustained virological response) in the future. In fact, from the research I did it gives me a 92% or greater chance of attaining SVR (I’ll post the link when I find it again -probs medscape.com somewhere). It’s great that there are so many studies available for the public to be able to view and use to inform there future hep c treatment on.

        Some of the practicalities of this hepatitis C treatment have been a little wearing though. Taking afternoons off work, driving an hour to the hospital, waiting for an hour to see a nurse who can’t really do anything other than take your blood and ask if you are ok – gets old pretty quick. I have also had a number of dental appointments and procedures carried out which also tightened my schedule up somewhat too, when I least needed it.

        I must mention that at one point I did have great difficulty sleeping. For three nights in a row I didn’t sleep at all!!! It was ridiculous – like I had drank a pot of coffee before bed. I suspect the Ribavirin but the doc thought it was the Telepravir, either way I got some sleeping pills (Zopiclone) out of it and used them to get back into the routine of sleep and came off them after a few days. That was around week 6 and things have been fine since.

        Anyway, I am having my viral load test tomorrow (Tuesday) and taking my last Telepravir pills on Wednesday. From there on I hope I get my ass back soon and I will be happy that I don’t have to eat so much and so often (although I have splurged on Snickers bars and cakes to get by at times so it is not all bad). One of the worst things is that I can’t just lay around in bed at the weekends, I have to get up and eat food take my pills at 8am and therefore cannot enjoy my lovely long weekend lay-ins so I’m really looking forward to getting them back. Also it seems that the Ribavirin doesn’t have to be taken at strict time intervals so it should be easier to just take them with morning and evening meals, so no more strict regieme to adhere too.

        Alright, I think that’s me up to date on my hepatitis C treatment blog, I’m sorry it probably reads as though it is all a little mixed up, it’s basically just the way it came out of my brain. So, my conclusion so far, to anyone waiting for treatment or considering it is that it may all sound a little scary but in my experience it really hasn’t been so bad at all! My life has stayed pretty much the same and I’ve been able to plod on. Hopefully to eRVR (An extended rapid virological response) and hopefully a Hepatitis C free future!

        Take care guys!

        I’ll post the PCR result when I get it do a follow up on life after Telepravir soon. Any thought or comments would be greatly appreciated :)

          Dec
          03

          First Week On Hep C Triple Therapy Treatment

          Ok, well it has been an eventful time since my last post! I am now officially on Hepatitis C triple therapy treatment and have been for 5 days now. I took my first shot of interferon last Wednesday at 5pm. 6 hours later I was in shivering and shaking like I have never shaken before in my life. I felt frozen. I lay in bed wearing 4 layers of clothing, heater on full blast and under all of my duvets and blankets. Frozen, shivering to the core!

          I know that sounds awful but actually in a strange kind of way it wasn’t at all. Firstly I was expecting some reaction to the interferon, secondly I knew that it would only be temporary and thirdly part of me was thinking, heck this ain’t so bad, I can deal with this (touch wood). It lasted probably a couple of hours in total, I hadn’t taken any paracetamol until I was shaking pretty bad. I kind of wanted to feel the full force just out of curiosity (I know morbid hey). I think after the paracetamol kicked in I pretty much fell asleep and that was that. So, overall it wasn’t too bad although I’d be lieing if I said it was a walk in the park but I had no problems the next day or subsequently from the first interferon shot.

          As for other side effects, I have had nothing, no fatigue, nothing really, although of course it is very early days. I have been to the gym three times like I normally do and completed fairly rigourous training sessions as normal.

          Actually I tell a lie, I have been having one fairly dramatic side effect – my ass is on fire!!! I guess it is the telepravir. Imagine if you had eaten the spiciest curry you have ever eaten in your life – you know the sort – spicy on the way in - spicy on the way out… the effect is similar but more of an enduring thing. I have handled this so far with an assortment of creams and I guess this is something I’ll just have to put up with. Other than that all is well with the world.

          My nurse was pretty laid back about everything, I’m only the second person to have used this triple therpay in my area and so they can’t offer too much info from on the ground as such, but she had a very good manner and went through all the relevant details, and of course showed me how to inject myself with the pen device – this was ridiculously easy and I hardly felt a thing!

          It is a little trying having to eat the 20 grams of fat with each intake of telepravir. My times are 8am, 4pm and midnight for telepravir and 8am and 8pm for ribavirin. I am a big guy and used to eating a lot but I can see how smaller people with less of an appetite could struggle with getting that fat down them. I am eating greek yoghurts, mixed nuts and cheeses as my means of getting the fat down. I haven’t missed any doses yet (don’t intend too) and I’m trying to get a bit more info together as to whether combining the second ribavirn dose at 8pm with my 4pm telapravir dose, wondering if that is feasible or not as this would give me less to remember.

          No problems at work either, I have a four week holiday planned starting at the end of this week which will really give me a chance to get on top of this properly and celebrate Christmas of course, minus the alcohol.

          I feel lucky to have this triple therapy treatment available to me and have been very happy with how the overstretched NHS has handled me, hats off to all the wonderful doctors and nurses! thanks a bunch :)

          Anyway, I’ll be adding regular updates, so if your interested then pop back again soon, or if you have any advice for me that would be great too, thanks, and good luck to anyone else out there treading the same path!

            Nov
            04

            Liver Biopsy Results And A Treatment Dilemma!

            Ok, so here it is the results of my liver biopsy which was described in my last post. Firstly, it is good news… very good news. There is no fibrosis or cirrhosis and indeed the only problem I have is that there is some inflammation of the liver. The doctor was happy for me and explained that this minimal damage was probably owing to the fact that I have only had Hepatitis C for 4-5 years. I was very happy to hear this :)

            The only problem with this very positive outcome was that it has left me with the classic Hepatitis C treatment dilemma… to treat or not to treat… that is the question!

            On the one hand I have no desperate need to undertake any form of treatment. I am young (well compared to most people comtemplating treatment – early 30s), my viral count is not huge (1.4 million), as mentioned there is minimal liver damage at present and I still have no symptoms for hep C. If I take treatment there could be a bunch of side effects that my life could really do without but…

            On the other hand, it would be great to get rid of this virus! I do not like the thought of it hanging over me and I do really want to get over this thing and get back to my life again. The sooner I can get rid of this the better, before any significant damage is done.

            I actually had the liver biopsy results a couple of weeks ago now and my thought process after receiving the results went as follows: initially I was happy that they showed no damage and my immediate response was that I didn’t want to take any treatment and I would be ok to wait a few years until new drugs arrive that could be much easier to take. I actually had decided in my mind that I would therefore do nothing more than ignore this virus for a few years, until new (non-interferon based rugs) arrived.

            However, after a couple of days of having made this decision I started to feel uncomfortable. Just a tiny little thing at the back of my mind wouldn’t go away, like an uncortable niggle, an annoyance, an itch I wasn’t scratching. You see I’m not the type of person who backs down from a challenge, never have been. I didn’t/don’t like the feeling of doing nothing and I feel that it could only get worse over the years, and that my mind would not be settled and comfortable unless I am doing my best to get rid of this thing. And because of this I have since contacted my specialist to confrirm that I would like to start triple therapy treatment on the 23rd of November. As this Geoff said on my thread at hepcukforum.org :

            “My personal opinion would normally be, treat, treat now, hit it hard, if it moves hit it again, and if you see so much as twitch napalm it. All the reasons why you feel you could have time to delay treatment, low VL, relatively short length of infection and no permanent liver damage, are all the factors which will increase your chances of a successful tx if you start now. With new triple tx I would guess your chances well over 80%.”

            I have selected the 23rd of November date because it is two weeks prior to a block of four weeks off from work. I have been informed on the same forum thread that people are often ‘okish’ for the first few weeks as regards side effects as it takes a while for the toxicity levels to build up in the body. In fact one of the gentleman from the forum named Martin has his own website which is very straight talking and clearly based on a lot of personal research and knowledge, you might want to check it out here.

            So, it is with eager apprehension that I am looking forward to the 23rd of November. I have done a fair bit of reading around the subject but I think you can only do so much in preparation for something like this. I know, I am generally in life a very determined (stubborn) person that is very motivated when I put my mind to something (at other times I am a lazy sod!), so I’m just killing time now before this hep c treament thing starts. I must confess though I have been having a quite a few beers recently. Generally I have been a very light drinker since being diagnosed but right now I’m not sure that a few beers is going to make any difference to my successful treatment.

            In my next couple of posts I’m going to give a run down of some of the websites/blogs that I have found useful so far in my hep C journey and also contemplate more the start of my hep c treatment regieme,

            later guys!

              Nov
              03

              My Liver Biopsy Procedure

              As outlined in my last post I undertook a liver biopsy recently to ascertain the extent of the damage to my liver as a result of my ongoing hepatitis C infection. The procedure itself went very well. I arrived at 8.30 in the morning and was briefed by a nurse on what to expect. I changed into the daft clothes they provide patients with and lay down on my bed until I was whisked down to the room where the liver biopsy was to take place. Whilst of course I was a little nervous I have an innate trust of the NHS and doctors in general so I felt like I was i safe hands.

              The specialist performing the procedure outlined to me one last time what he was doing and was going to do and then he anaesthetised the region just under my rib cage on the right side of my body (here is the NHS liver biopsy page and another from Great Ormond Street with more detail). This shot was given a few moments to settle in and then I was informed I would feel a ‘scratch’ as the long needle was inserted to take the biopsy.

              I’m not sure what I actually felt, but it wasn’t a scratch. The needle was slid inside my body and this felt ok. However the moment when the needle closes and cuts the liver across side-ways did cause a tiny bit of discomfort, no pain but just a little uneasy. It was all over pretty quickly though and I wouldn’t hesitate in doing it again should the need arise. So, nothing to worry about if you are considering having a liver biopsy as far as pain is concerned!

              The worst part of the liver biopsy was in fact the 6 hours waiting flat on your back afterwards. This is to prevent or lower the risk of internal bleeding and as such is strictly enforced by the nurses. At one point I really was bursting for the little boys room but they wouldn’t let me go! I was instead given a large container to do my business in and was told to do so laying down. This I found really difficult, so without telling the nurses with the curtains closed I stood up and ‘went’ in the container.

              The nurses checked my stats every 15 minutes including blood pressure and heart rate. They seemed a little alarmed that my heart rate was so low at 54, which they weren’t used to, this is apparently due to my regular fitness training and my blood pressure was just fine (apart from just before the procedure when there was as expected a significant spike!).

              The only other confusion was after the 6 hours was up. I got changed and was ready to depart when they asked me who was picking me up to which I replied that I was driving home. This they were not happy with. They said that I shouldn’t be driving for 48 hours and shouldn’t be alone overnight and that I shouldn’t be working the next day. My specialist who had referred me had neglected to mention this part of the procedure!

              So, regretfully despite wanting to leave I had to stay the night in hospital under observation just to be safe. Early in the morning the next day, after having regular checks throughout the night I left, scooted off to my house to put my work clothes on and headed out for the day.

              The results of my liver biopsy for hepatitis C are due to be back three weeks after the procedure. The results of which will be in the next post. If you have any other insights into liver biopsies feel free to comment below.

              Results in the next post…
              Take care guys.

                Sep
                24

                My Liver Biposy Prior To Hepatitis C Treatment

                OK, so it has been a long time since my last post. The reason for that is basically not a lot has happened recently. I have been ‘watchfully waiting’ as regards the Hepatitis C virus. I was offered treatment last year (July) but put it off whilst I settled into a new job. The new job meant a geographical relocation and therefore also a change in doctor and hospital.

                In the UK due to all the admin etcetera this meant it took a while for me to get through the system to see the specialists. Now, after several appointments with the new consultant we have formed a plan. I shall be having a Liver biopsy very shortly, tomorrow in fact, to check exactly how well my liver is doing. I was offered a fibro-scan but was told that the information that that would provide would not be as accurate overall.

                I just figure if I’m going to do something I might as well do it properly, especially seeing as I have to make a major decision based upon the results. Basically, the doctor has said that if my liver seems to be doing ok and has minimal ‘damage’ than I might be in a position to wait for new interferon free treatments to come along. Based upon my research it looks like that would perhaps be a 3-5 year wait, but no-one can really say for sure (Hep C Drug Updates here). And certainly the doctor has no real idea what state my liver would be in by then.

                After the biopsy I will then be seeing the consultant three weeks later and we will make a decision on whether I will go ahead with treatment or not. I’m obviously really torn between the two. I have a great life right now, I don’t suffer at all from any symptoms from hep c and enjoy a very active lifestyle, weight lifting, thai boxing and trekking being my regular pursuits. In fact I just came back from a month in the Nepali Himalayas, which was awesome and would loathe to give this active fantastic lifestyle up.

                However, on the other hand the chances of me clearing the disease are around 70% if I adhere to the treatment, which seem really pretty good odds. Allied to the fact that we will know after a month if the treatment is actually working or not. Clearly if it is not working then treatment would be discontinued. So, clearly, a tricky decision to make. I guess in my mind I am leaning towards treatment at the moment, I would love to be free of this thing and get back to enjoying my life without having to worry about this thing. Plus I do enjoy to have a beer and don’t really think it is likely that I can go the rest of my life without having another beer with my mates, I’m only human after all!

                Anyway, I’ll do another blog post closer to decision day, but for now let’s focus on the Liver biopsy. I am doing tomorrow. The following paragraph is taken directly from a pamphlet given to me by my doctor, conveniently entitled: ‘Taking a Sample Of Your Liver’ by the NHS, it explains the procedure thus:

                “You will need to change into a hospital gown for the test. The test will be performed in the x-ray department. You will be asked to lie on your back with your right arm tucked behind your head. The doctor will clean the skin on the right side of your lower chest with an antiseptic agent. You will then receive an injection of local anaesthetic into your skin. This may sting for a few seconds and then numbs the skin. Once the area is nicely numb you will be ready for the sample of your liver to be removed. The doctor will ask you to hold your breath for a few seconds whilst the needle is placed into your liver. You will hear a click when the sample is taken and the needle will be removed. The needle is in the liver for only a few seconds.”

                Sounds like a piece of cake hey. I think the worst part of it will be the fact that I have to lie down for 6 hours after the sample has been taken. This is monitor for complications, the most likely of which is internal bleeding. Approx 1 in 1000 patients will experience this apparently. A transfusion, operation, x-rays and more CT scans would then possibly be needed depending on the severity of the bleeding. The probability of death is 1 in 10,000. The doctor felt he had to mention this but of course, it is extremely unlikely that there will be any problems. Additionally with me being young fit guy with no liver scarring as yet, there chances of severe complications are probably reduced further.

                I will wait three weeks for the results of the liver biopsy and then I will meet the specialist to hear his recommendations. I get the feeling things are going to start moving very quickly from now on as regards my hepatitis c treatment, so if you are interested you might want to pop back in a few weeks to see what’s going on. And of course if you are going through a similar thing, let me know how you are doing or if you have any advice. I’ve been watching a few clips on youtube recently to try and gain more insights before I start. It makes me feel better to know other people have successfully beaten this thing and that there are other people in the same boat.

                Take care guys.

                PPS, Just for the record, last stats: viral load 530,000 ml/u, ALT 90iu/l.

                  Jul
                  21

                  Quick Update On My Hep C Treatment

                  I got a text message from the NHS booking system two days ago reminding me about an appointment I had for today. To be honest I hadn’t realised there was one scheduled but never mind. So I went along to the same ward as last time, reported to reception and took a seat. About half an hour of confusion later between staff and doctors it seems my appointment was over at a different clinic to speak to a new doctor. I wasn’t even sure what I was supposed to be doing at this appointment, I had presumed it was to be the next injection of my hepatitis b vaccination process which I still need to complete. Apparently a hep c and hep b co-infection is a complication that can be quite tricky to get a handle on.

                  After reporting to the correct place and waiting for another half an hour I finally saw a different specialist whom I had not seen before. He just gave me an overview of my situation and said that he was forwarding all my details to the new hospital near to where I will be relocating to later in the year so they can start to get the ball rolling at that end for me.

                  He explained the dilemma as to whether to wait for the new drugs before starting treatment or not and in his mind he didn’t seem to think the drugs would be out in the UK as soon as I had been led to believe. I tend to agree with him, these big companies and government agencies seem to work at their own pace if you know what I mean. He mentioned the organisation known as NICE and he seemed to think it was on their shoulders at the moment.

                  As regards the mark on my Liver discovered in the recent ultra sound scan, turn outs that it is indeed just a birthmark (well there was a more technical name but I forget what it is now) and nothing more serious. Apparently 10% of the population have similar marks on their liver so it really is nothing to do with the hepatitis C.

                  ALT had gone down to 95 but viral load was up at 1.6 million which isn’t great. The numbers really do seem to fluctuate quite haphazardly with no rhyme or reason that I can think of. My diet is very similar week to week so I can only guess it is the natural flow of the condition.

                  Other than that not much of interest to report, just waiting to hear when I needed to go for the next hep b shot and waiting to hear from the new hospital. However as I don’t intend having the hepatitis C treatment until next february at the earliest after I have settled into the new job.

                  Not sure if the trip to the hospital was worth it really but I’m just the patient, what do I know!?

                    Jul
                    14

                    A Huge Anti-Climax!

                    Well, today certainly didn’t go anything like I expected to. I had expected to start  my Hepatitis C treatment today but sitting back at home on my bed right now it looks like I won’t be starting until at least next February, a full 7 months away!

                    The basic reason for this is that on my ultra-sound scan something showed up on it. The Doctor said that there was no scarring, fibrosis, cirrohsis or anything like that which of course is good news and that this thing that ‘showed up’ is what is most likely to be a birth mark on my liver. The problem is that the scan now has to be checked by some other specialist as part of normal protocol before I am allowed to go ahead with the hep c treatment.

                    Apparently this will take 2-3 weeks to happen and so the Doctor was starting to give off vibes that she didn’t think I should start the hep c treatment so close to me starting a new job. I am a teacher and it will be a very busy and stressful time for me when I start my new job in September and she seemed to think I would be better waiting until I was settled into the new job.

                    A secondary reason for her perhaps wanting to put me off a bit more is because after Christmas the new drugs that have just been trialled and approved for public use are likely to be able for use here in the UK. Why this was never really mentioned previoulsy to me I am not sure. Maybe this was because before she was not sure what my genotype was and perhaps if it had been a good gentoype such as 2 or 3 then she would have been more encouraging me to go ahead with it, however it is now official I have the worst genotype to get rid of which is 1b.

                    The good news however is that the new treatments really do seem to improve the chances of achieveing a sustained virological response (SVR) for people with genotype 1, assuming of course that the patient is able to tolerate the treatment side effects and so on. The first quote is regarding the new drug Boceprivir and the second quote is regarding the other new drug Telaprevir which are to be used in conjunction with the conventional combination therapy of interferon and ribavirin:

                    “In all three treatment arms, PR consisted of peginterferon α-2b and ribavirin.
                    Among nonblacks, sustained virologic response (SVR) rates were significantly higher in the boceprevir groups (67%–68%) than in the control group (40%). Blacks had lower SVR rates in all three groups, but B+PR still outperformed PR in this population; SVR rates were 42% in the RGT group, 53% in the fixed-duration group, and 23% among controls. Overall, 44% of patients in the RGT group had undetectable HCV RNA from week 8 to week 24 and therefore received shorter-duration therapy (28 weeks total).”

                    “SVR rates were 69% and 75% in the 8- and 12-week telaprevir groups, compared with 44% in the control group.5 Approximately 58% of patients who received telaprevir achieved eRVR and were eligible for shorter treatment (24 weeks total).”

                    - hepatitiscnewdrugs.blogspot.com: Source

                    So for myself I take away two key points from that:

                    a) The chances of me attaining SVR increase from around 45% without the new drugs to near as damn it 70% with either of the new drugs!

                    b) With either of the new drugs there is around a 50% chance of being able to have a shorter duration of hepatitis c treatment aswell which is awesome news.

                    So, I guess rather than rushing into my treatment now it does make sense for me to wait until next year when I am on top of my new job and the new drugs are available to be used. I was looking forward to getting started on the treatment and was a bit annoyed after I found out I had had a wasted journey to the hospital today, but already I am feeling better about delaying it somewhat.

                    I still have an appointment booked for two weeks time in which I can have my first injection if I change my mind. Like I said it took me a while to calm down after realising I wasn’t going to be starting treatment today so it took me a while to think it through properly which is why I left the option open. I will still keep the appointment however as they should tell me for sure what that liver birthmark thing is all about but apparently it is nothing to worry about.

                    So to summarise then: My current ALT is 135 with a viral load of 1 million (up from 600,000). I have no scar tissue, fibrosis, cirrohsis or anything like that and the doc said that I can afford to wait and reading between the lines with my genotype being 1b I think she wants me to wait so I can benefit from the new drugs coming out soon.

                    I guess I’ll take it easy on the blog updates from now on as there may not be much else to report at least until the next appointment. In the meantime I will be ‘watchfully waiting’ which is the lovely little term the doctor likes to use for trying to live a healthy life by not doing anything to damaging to your liver whilst you wait for the hep c treatment to start…how nice! Take care guys :)

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