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Hepatitis Scotland e-Bulletin, April 2018

Patient experiences of living with hepatitis C


Recently, Hepatitis Scotland called for patients to share their experiences of hepatitis C, whether of being diagnosed with hep C, living with the condition, or their experience of new treatments. We have gathered these stories below, written by patients in their own words, for you in this e-Bulletin.



 

My Success by G. Knox


I'm going to tell you how I won a battle in my road to recovery that literally saved my life. Keep reading and I’ll change your mind on a subject that is stigmatised and can be beaten.


I was diagnosed with hepatitis C genotype 1 in 2006 at the Edinburgh Access Practice.


When the doctor told me I went into shock. Then it quickly dawned on me that I had a disease that could eventually kill me. The room fell silent and I was told “You will receive a letter from the hospital.”


No signposting or advice about any organisations that could help.


I felt lost, lonely and empty.


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I had a three year old daughter at the time and was worried I could pass it onto her with a silly little cut or any situation. At the time I was also in a relationship with my daughter’s mother and felt I couldn’t tell her. I didn’t tell anyone. The stigma attached to hepatitis C is not good in Edinburgh. I don’t think it’s good anywhere!


After a couple of nights tossing and turning, not sleeping, thinking about it over and over...


I stupidly put it in a little box in my head and buried it deep. I had become good at that as I was literally living a double life: one as a caring father but terrible partner and one as an addict, doing whatever I could to get my fix for the next day. After a while my partner found out I had gotten myself onto a prescription and left me. She let me continue seeing my daughter every weekend and everything was going well.


The little box in my head with the silent assassin (hep C) used to rear its head now and then but I used to just shut it away.


I was going to the North East Recovery Hub for my prescription and the hepatitis nurse came and spoke to me about treatment and just how much hepatitis C can damage you. Not only your liver but other organs too and how it could, eventually, kill you.


She asked if I would be interested in treatment as I was clean from street drugs but still on a prescription. She gave me some info and leaflets and signposted me to a charity called C plus in Leith.


I was a little hesitant but went along anyway.


When I arrived I was so nervous but I was welcomed with open arms and all the staff were lovely. I sat down with one of the support workers and they explained the treatment, the side effects and what they could and would do to help me. I thought about it for a couple of days, then called the support worker and said “I’m in!”


My support worker called the Royal Infirmary in Edinburgh and the ball was rolling. I was excited, anxious and nervous but thought I'll do it and be done with this illness. I was living in a lovely flat in Leith and C Plus wasn’t far so I was attending a lot to get as much info on the treatment as possible.


I was going to the North East Recovery Hub and the Royal Infirmary for different tests. Finally I got my date to start the treatment. When I got the call I had a rush of euphoria. That quickly dwindled into thinking how other people found it so hard and it seemed to be making them more ill than they had been. I’ll admit, I was scared. But I’d been through hard times and thought to myself “You can do this!”


My date to start was September 3rd 2013. Seven years I had lived with this illness that was destroying me slowly, quietly and definitely.


The only guarantee in life is death if you have hep C. If you don’t get help you have already signed the warranty... it’s only the date that is empty.


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The treatment consisted of three ribavirin in the morning, an injection of interferon once a day, three boceprevir then three more ribavirin at night. This was for six months. That’s a lot of medication! I was shown how to take them, when to take them and told to make sure I ate. Can you imagine what all that medication will do to your mind and body? Although it kills the hepatitis, the side effects were… well, we'll get to that.


After the first couple of weeks I was fine. Then I started feeling lethargic and not feeling like eating. This went on for a few more weeks. By now the sleep deprivation combined with not eating had my head in a spin.


I started hallucinating, I smashed my flat up, I would snap at anyone. I was paranoid to the point of just locking myself away and when I had to go out it was with my hood up over a cap. I wanted to see no one. I wanted to curl up in a ball and be left alone. It got to the point where I didn’t care about the treatment as having hep C hadn’t done this to me in the decade it was inside my blood.


I became anaemic and had missed a couple appointments. The staff at C Plus were extremely worried as I wasn’t answering my phone. When the staff at the hospital and at C Plus finally got me in for a meeting they told me my body and mind weren’t dealing with the treatment and pulled me from it. I was four months in and gutted but glad it was over and my body could rest.


In hindsight they were doing the right thing. I’m glad they did.


After a few years floundering about trying to find myself I found myself staying At Her Majesty’s Service in H.M.P Saughton.


Eighteen months. I lost my flat and everything in it. I couldn’t believe it. I was devastated. The silver lining of this dark cloud is that I was liberated early on the tag to St Johns Hill Hostel. My curfew was 7am until 7pm. It was better than being inside.


So I found myself back at the Edinburgh Access Practice. I hadn’t been there for a good few years but I still remembered a few of the staff. After a couple of months Jessie, the BBV nurse, told me I was eligible for the new treatment. I asked what it was all about and she told me it's half the meds, twelve weeks, no injections, no side effects and it’s 95% successful. I was extremely sceptical after the last treatment I'd gone through. I tried to find people who had been through the new treatment but I never found anyone. So, being the person I am, I thought “Twelve weeks, what’s to lose?”


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I spoke with Jessie and Kathy from the BBV drop in at the Edinburgh Access Practice and told them I'd go for it. I went through all the usual procedures of getting blood taken and tested. My community psychiatric nurse made sure I was stable on any other meds, and after six to seven weeks I started the “new treatment”.


I’d prepared myself for the worst and was ready to take it head on. For the first couple of weeks I felt fine. Then the next couple of weeks I felt fine. I felt a little confused. I was a third into the twelve weeks of treatment and I felt fine, no side effects, no nothing! I was amazed at how easy it was. I think I was waiting for something to happen.


I was taking three ribavirin, two Viekirax (12.5mg) and one Exviera (250mg) in the morning. In the evening I took three ribavirin and one Exviera (250mg). That’s ten tablets a day plus the other medication I was on. It’s a lot of meds to take in a day.


There was a war going on in my body and I didn’t feel ill or unwell, not even an upset stomach. I had a few uncomfortable days over Christmas and Hogmanay, but who doesn’t. That was the worst of it! The first time I went through treatment it nearly killed me!


This seemed too easy. Every appointment I saw Jessie or Kathy and told them I was doing well and they could see it. I finished the twelve weeks without as much as a runny nose. I finally got the final blood results back and I’ve finally defeated this horrible disease.


Now that I'm back in good form, I'm trying to give something back and I'm succeeding in doing so! I’m moving on to try and help others, so future sufferers will have the right advice and signposting.


This is my success story and I hope it inspires you and others to reach out, shed the stigma and get the help if you need and want it.


I’m now free of this killer disease and on a great journey in my life now.


YOU CAN BE TOO!



Cathy's story


I was diagnosed by my GP, and I was told I had hepatitis, but nothing else was said about it. This was maybe about 2003. There was no information and no referrals were made. “You’ve got hepatitis.” But what is hepatitis? I didn’t have a clue.


I had spoken to a few people who also had hepatitis C, and they were going through treatment. I remember I got a letter asking me to go to hospital – no discussion with my doctor. I didn’t go to that appointment because I didn’t feel there was anything wrong with me. I was involved with drugs then, and that was my priority.


I ended up in West Street (GDCC) for three weeks to come off drugs. And when I got there they told me bits about it. I did feel dirty at the time. I thought I’d get judged. Why did I share stuff? I didn’t know but I trusted people. I did my full three weeks and came off everything, and from there they got me accommodation with Say Woman around 2010.


I was homeless before this, sleeping on the streets. Getting my flat with Say Woman was a turning point for me. I ended up going to see my new doctor at Tollcross Health Centre – I always try and get back to that doctor – he was great – but I’m outside the catchment area now. It was from him that I started to take information in about it.


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There weren’t many places that offered hep C support then. I remember my CAT worker telling me about Waverley Care for the first time, I had no idea. This was about two years ago. Other friends that have hep C don’t know about them either. I tell them. It reminds me how I was back then with no support.


I got an appointment at Gartnavel Hospital with my consultant. I got assessed by the psychiatrist up there, and it was agreed I couldn’t do the interferon treatment because of my mental health. I was also told my liver was okay then. I just went to see them every six months for a check-up. I always went, and I was told my liver was fine.


Then I became unwell and I kept being stopped by police – they thought I was on drugs. I had to be carried up the stairs to the house, I couldn’t see properly. I had no sense of perspectives, like I couldn’t get a light switch. So I went to see my consultant and said I didn’t feel well. I never thought it would be my liver. I was told I was fine and just to rest. So I went home, my partner had to hold me all the way, later that night I got rushed to hospital. They thought I took a stroke, they did investigations for three days, I was unconscious for most of this time. My liver was in a bad way, serious damage and cirrhosis of the liver that was really serious. They then told me my body and brain were full of toxins – I was told if I didn’t come to hospital I would have died. I ended up being in hospital for twelve weeks. It was hard to deal with at that point. I remember my sister and my mum coming into my room, crying. They said that if I go home and take any type of drug my liver won’t be able to cope and I’ll end up dying.


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My vision and everything was back, but I didn’t feel great inside. They wanted to give me treatment for hep C then – but they kept on telling me how expensive it was – they told me they couldn’t afford to give me a bed everytime I got unwell, and to go for this expensive treatment. The way they talked to me about it – all just costs – I dug my heels in and refused it.


I started going to Gartnavel and I got a good nurse there. She didn’t force me, or talk about the cost. She just told me it was my choice, and my liver was that bad – that even if I got rid of the hep C, I would eventually die from my liver. That was scary – and I couldn’t understand how my liver was fine and then got really bad so quickly. They explained this can happen. I didn’t blame anyone. I still had the fear of treatment and I had a meeting with some of the staff such as my drug worker and support worker and they told me I had a few months left to live. I said “I’m dying?” and she said because I’m not doing treatment, the pressure on my liver was too much. So I felt I had to do treatment.


I asked how they felt I’d get on with treatment. They said everyone’s different but because my liver is very unwell that they couldn’t say. As soon as I went on the medication, this might sound weird to some people, but I couldn’t complete it. I tried every day, but I’d be sick as soon as I took it. I would tell the hospital, but I was told to hang on one more week – which I did, but eventually I was told that the consultant didn’t want me on it any more. I had only managed six weeks, and I was meant to do six months. When they did the test the nurse expected the virus to still be there, but it wasn’t. I’m to get another test in a few weeks to see if it’s there.


Before I did the treatment I felt I could do things, and now I don’t – I feel worse and I don’t know why that is – maybe my liver has just gone through too much. I said to my support worker, at the end of the day it’s me that has to do it, and I wish I’d never done it. I wished I’d stuck to my guns, because I don’t think it has done me any favours.


There are no other treatment choices for me, and they have made a referral to palliative care to take over. My consultant has said they will stay my consultant until, this sounds horrible, until I die.



Bob's story


Hi, my name is Bob, diagnosed with hepatitis C in 1986 as a result of a blood transfusion and I would like to share with you my experiences and thoughts on living with hepatitis C, a subsequent liver transplant, recovery from liver transplant and ongoing living with hepatitis C.


It was approximately 3 years later, 1989, when after a routine hospital visit I was informed I had an abnormality in my liver which turned out to be the hep C virus. I was told there was no cure and life expectancy was approximately 15 years but research was underway to try and find a cure. This news gave me an initial shock but after some deliberation I took stock of my position. I could have simply engulfed myself with bitterness to the NHS who had supplied the contaminated blood and continued on in this negative way.


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However that is not the way forward and I decided to carry on with my life in the same way I had always and when things deteriorated then I could make a further assessment together with the medical personnel. I did take part in four trials up to 2013 which were unsuccessful and then put on the transplant list. Living with the virus is different for each and depends on the individual but what worked for me was to carry on living whilst being monitored by the medicals and making some changes to lifestyle, e.g. no alcohol. What was a bit disconcerting was the realisation that some medical people, especially at GP level, did not seem to be aware of the condition and there were several instances where I was informing them on matters. Thankfully nowadays this situation has improved greatly. Over the ensuing years and especially in the last 12 months before transplant in December 2013, I deteriorated and the illness was debilitating. This creeps up on you and it was only after transplant I realised how much my body had been affected. Some of the normal functions you took for granted were affected like work, leisure and including the "taboo" subjects such as social withdrawal, sex, etc. Especially in the 9 months prior to transplant I had bouts of severe pain and my body was not coping.


During the period up to my transplant, whenever someone found out that I had hepatitis C, there was generally an assumption that this was through drink or drug use and I would always inform them that, in my case, it was through infected blood products. There was and still is a stigma attached to this. This was evident in all walks of life, including some medical personnel.


My transplant in 2013 transformed my life. Quite quickly I was able to live a fuller life. It is not completely without problems but these are certainly manageable, e.g. especially careful with skin, joints/muscles sometimes a bit painful but for me the main thing then and still now is my brain. It seems to want to download at night and come to terms with the foreign organ in my body. At least that is my interpretation of it simply as the medical staff won’t give any explanation. As I say it is all manageable.


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After transplant I still had the virus and was given approximately another 10 years but early 2017 I was given one of the new regime of drugs which eradicated the virus and I am now proceeding with life in a positive way.


Now the new regime of drugs are proving almost 100% successful it is now up to all to spread the word and try to get all tested for the virus. People either believing they cannot be infected as they do not feel unwell or don’t want tested in case anything is found (these are my thoughts on it) must be encouraged to be tested. Governments need to play a larger role in publicising and funding medical staff, especially GPs, to request patients to be tested and a full blown publicity is of a necessity. I am still appalled that GP surgeries still do not display anything on this matter. Whilst there has been publicity it requires much more. Some organisations are trying to achieve this and are having some success but it requires all to participate.



Jacqui's story


My ex-husband contacted me over 20 years ago to say that he had been diagnosed with hepatitis C and advised that I should go for a test. I went to Chalmers outpatients in Edinburgh to be tested and was told that the test was positive. I had a new partner at the time and he also got tested but thankfully he was negative. At the time I wasn't given any real information about what would happen or what I should do and to be honest I hadn't really heard of hepatitis C. I did read up on it but I just carried on with my life and didn't really think about it too much.


In August 2016 I became very ill, I was losing a lot of blood and just wanted to sleep constantly, I couldn't eat much and had no motivation to do anything. I did think I was possibly going through the change of life due to the bleeding but I was getting progressively worse. I was due to start a new job on the 9th August and I was trying to focus on getting better for then but the morning that I was due to start the job I felt so ill and knew that I needed help and I therefore phoned an ambulance. I was taken to hospital and had to get an immediate blood transfusion and if I hadn't gone to hospital that day I was informed that I could have died. The whole thing was extremely frightening as I didn't know what was happening. After many tests I was told that I had cirrhosis of the liver and this was partly caused by hepatitis C, I was in total shock as I had no idea that it could cause so much damage to your body.


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I stayed in hospital for a month as there was a lot of other problems that had been caused and I was very ill but I was very fortunate that I was put in touch with Waverley Care who found me a place at Milestone House and that was the beginning of my recovery. I was so well looked after at Milestone, the staff were amazing with me as they knew that it was all too much for me to take in. They helped to build me up in order for me to start my hepatitis C treatment.


During my time at Milestone a few people were telling me how awful the treatment was and I was beginning to dread it but when then my doctor explained that the new treatment was so much better with not very many side effects. I decided not to listen to the horror stories of previous treatments and think positive about the treatment that was being offered to me. I started on Epclusa in February 2017 and was cleared of hepatitis C in May 2017 and I have to say it was the best feeling in the world hearing that I no longer had the virus. I was very fortunate in that I had no real side effects and more or less sailed through the treatment.


My life has changed for the better, I learnt a lot from the situation I found myself in and I have to say that it taught me a lot. I gave up drinking alcohol as, although I was not alcohol dependent, I was drinking far too much. I learnt a lot about people and the different situations as to how they got infected, I was infected by my ex-husband who had an affair with somebody who was infected and he passed it on to me.


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I now do volunteer work with people that are infected by HIV and hepatitis C and I am hoping to get a job in this sector as I love it. I have also done a few talks to people regarding my experience.


I would encourage people that are infected to take the medication if they can even if they are not feeling ill as I know from experience it can suddenly hit you and can be life threatening.


I have so much more energy now and enjoy my life to the full and although I went through a very tough time it was worth it in the end!



William's story


My name is William. I was diagnosed with hepatitis C in January 2016.


It was an absolute shock and I was diagnosed by accident.


I actually went to my GP about my prostate and it wasn't my normal doctor I saw. It was a locum, a young guy, and he asked me, "Would you like to be checked for hepatitis C?"


Within 10 days, I got the phone call from my GP saying, "Look, you have hepatitis C"... and it floored me, it really did.


The strange thing is for years, not weeks or months, occasionally when I would get up out of my bed in the morning, I had some pain just at my liver, and my thoughts were, "I must have been lying in an awkward position all night!"


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I was actually feeling quite ill with it and I didn't know it was the hepatitis C, I was putting it down to other things. I wasn't thinking liver. The thought of having cirrhosis of the liver, or cancer... getting tested for hepatitis C is the most important thing I've ever done in my life, health-wise.


Anyone who lives in Scotland and is waking up in the morning and thinking they've been lying the wrong way or they're just not feeling too good - go and get it checked because you can get better. I would say to anybody - just go to your GP and ask them, ask to be tested for hepatitis C.


You can watch an extended version of William telling his story here.


Contact

Hepatitis Scotland
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Glasgow
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Telephone: 0141 225 0419
Fax: 0141 248 6414

 

Email:

enquiries@hepatitisscotland.org.uk 

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