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What / which symptoms are most troubling... - Hepatitis C Trust
What / which symptoms are most troubling to you now?
Written by
CalvinHU
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19 Replies
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Massively . I'm certainly not myself anymore not how I was . Confidence gone. Depressed and anxious lots more doesn't help I'm s chef and work 70hrs a week. Basically yeah fuked me but I just get on with it! It's a struggle
Prior to diagnosis, I suffered from chronic fatigue. This was made worse by my scare that I may have rectal cancer. Suffering from excessive rectal bleeding every day for months. Before diagnosis, I underwent numerous medical investigations to determine the cause of my bleeding. (Colonoscopy, flexible sigmoidoscopy, MRI's, CT Scans, Ultrasounds). It was eventually determined I have Ulcerative Colitis. The continual blood loss left me anaemic. When I was diagnosed with HIV and being coinfected with HCV, I had a lot to deal with. I started antiviral therapy for HIV straight away. But as I didn't have any damage to my liver from the HCV, this was left for over a year (from diagnosis) untreated. I coped with the HIV diagnosis very well. And the treatment quickly made my viral load undetectable. But with me bleeding, I had major psychological distress. Feeling I was a walking Biohazard. It didn't help that I was homeless and I had a close friend who had a liver transplant due to his Hepatitis C infections at the same time period. He subsequently passed away last year due to an infection with his transplant. There is a massive stigma attached to being diagnosed with HCV when you are Coinfected with HIV. Especially amongst the HIV+ community that has become undetectable. I got signed off on the Havroni treatment due to my mental health state. I have trained to be a Peer Mentor for the HIV community, also to combat the stigma I strive to raise awareness of Hepatitis C.
I think the price of treatment will come down soon and will be available to everyone,raising awareness is great work Simon .
I do hope so. My treatment cost £39’000 that’s £700 Per tablet. And being told you only have one possibility of treatment. So if I were to get Hepatitis C again , I wouldn’t get treatment.
Mine also apparently 75.000 dollars 25.000 a bottle delivered to the house I thought I might of got a free pen or blue peter badge for that much the tablets probably cost about £20.
Don't hold your breath...some greedy bastards are making a 'killing'..the whole pharmaceutical practice needs addressing..(sorry...a mini vent there!)
I fully understand your vent. If you look at the top companies in the world. The top few are all Pharmacutical Companies. They make more profit then any company, even against Oil and Defence. It was worse with the HIV epidemic in Africa and the Pharmaceutical Companies fort against providing cheaper meds’ for those countries who couldn’t afford them.
It's good to vent!!
I think for me from the moment I got the news i was infected hep c became my life, it was on my mind constantly. Even now 12 months post treatment and 'cured' it still plays on my mind. Before diagnosis I wasn't 'ill' and I also felt fine and well after finding out which perhaps made it difficult for the reality of it to sink in. However on treatment I felt awful and I still don't feel right a year after..its like it's zapped the life out of me. I do wonder if this is maybe because to the best of my knowledge I've had hep c all my life and maybe i had adapted to It!
The guilt feeling consumes you I think, that and the loneliness.x
I have no guilt.. I'm vexed as my belief is I caught it via blood treatments from the nhs ....i had fear that I may of passed it into my children but thankfully they all tested negative
Depression,those really dark moods when the fatigue gets unbearable,anxiety that chokes you up.
Although I am now free of the virus for about a year, the 6 years or so in between diagnosis and successful treatment took a huge toll on my life. Exhaustion, worry, shame, a feeling of a definite shortened mortality, a sense of being dirty/stupid/untouchable impacted on my wellbeing on all levels. Day to day, the thoughts around having an incurable virus in my body causing unknown damage hit my mind on waking and there was little respite from the negative feelings about myself. The initial shock, the waiting for appointments and possible treatment, the disappointments along the way drained body and soul. I told some friends about the diagnosis early on and their reaction added to the stress. Some disappeared, some judged, some ignored me, some wanted to know everything but offered no help. I learned not to tell anyone as the virus not only bears a stigma but is also not known about or understood so explanations were lengthy and always involved the early question "so where did you get it from?". I knew that some would be Googling, as I did in the early stages, to be met with the impression that I must be a heavy drinker or a drug user. As Tess said, I was living with it for a very long time so there are adjustments even after the cure.
As I write this, I realise that I haven't got over the effects the diagnosis had on my mental wellbeing and am trying to make sure that I forgive myself for having contracted it and maybe put others in danger without knowing. And trying to live a full life and have fun!
Hi...i hear you totally about the friends bit...its quite an eye opener but also very isolating and can make this hep c ride a very lonely journey and the only people who understand the shock, the trauma, the shame and the awful awful stigma are the ones who have been through it...the sad thing is the stigma still keeps this killer virus in the dark an not talked about.
👏you should write a book,dandelion.
Hard to say as my Hep C has cleared but I remain cirrhotic. I get tired and my joints ache terribly some days. At one point my dr thought I had ME but it's a hard to diagnose condition and I just left it. My liver isn't too bad, as long as I look after it. My immune system seems to be shot though as I am constantly ill with coughs and colds. I have a chest infection now. It's embarrassing as people say things such as 'ill again'? I don't get a cold anymore - it always, always turns into something worse and lasts 2-3 weeks. I must admit it does get me down.
Hi all,
Fatigue definitely the worse for me, would nearly cry with it. Muscle aches and pains, brain fog, by the afternoon wouldn’t be able to hold a conversation , so fatigued. I.B.S. Depression & anxiety been my constant companion all these years.
K
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