HCV Positive

This blog is a journal recording my personal experiences with Hepatitis C.

Location: United Kingdom

I have hepatitis c, genotype 1b and started 48 weeks combination treatment, pegylated interferon alpha 2b and ribavirin in August 05. Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks. I am not sure at present what the future holds.

Monday, August 08, 2005

My Nurse is an Angel

I thought everything was going ok, not good, but I would cope. I kept reminding myself that the first injection, was for many, the worse and that it was likely that things may get better.

I didn't tell you how much stress I'd had the week before my tx began. I had planned that I would take the young people I worked with to Blackpool, tie up loose ends the next day then bow out and rest and get over the chest infection before tx day.
What happened was that 2 young people decided to go missing in Blackpool, one of them was mine, and this caused untold complications and had negative health complications for me.

I had begun the day at 8am and was frazzled by 5pm when we were due to leave Blackpool, at best I average 4 or 5 good hours a day, so I was pushing it to begin with. It was 10.30pm by the time I found my missing girl and took her home, after dealing with park security, police, parents, my line manager and the rest of my group of young people, I got home myself in floods of relief that it was all over. I poured myself a glass of wine to help me unwind, one of the last I was to enjoy before tx began. Only I didn't enjoy it, because the next thing my phone began to ring and I had a child protection case on my hands with the girl who had gone missing making allegations of sexual abuse. By 2am, I had established with social services emergency duty team, that I would not be required to remain awake throughout the night for police reports.

I didn't manage work the following day, but found consequently with all the extra reports this incident generated, that I had to work like a lunatic up until the Friday evening instead of the Wednesday I had planned to finish. Far too exhausted to attend my colleagues wedding on the Friday evening, which I was sad about.

On the Sunday I took my mum to see her dear brother in hospital who is suffering from vascular dementia. I was appalled by the standard of care he was receiving, the unexplained bruising, the fresh grazes on his elbows, the zombie drugged state he was in. As I was leaving the hospital after 4 hours, I noticed a report left casually on a table outside the ward which I read, and learned that my uncle had had a fall in the shower that morning, noone had told us despite my asking staff nurse why he was in such a state. By my reckoning then, the grazes on his elbows that were causing him pain everytime he knocked them on the chair, that I had had to ask a nurse to come and dress, had been there for over 7 hours before they were attended to, despite the report citing the injuries. I worried about my Uncle's well being.

Along with all this was the insomnia, so even though I was exhausted, a good sleep was not forthcoming. I tell you all this so you have a good idea of the state I was in when I presented myself for tx. as it all possibly contributed to what happened next.

As I have already mentioned on the forum, 1st injection posting, I initially thought everything was going ok, then the panic attack kicked in. I managed to ride out the storm until it happened again, and again. By yesterday, Sunday, I had 3 attacks in one day, I was totally undone. I posted more about this on the forum, panic attacks and anxiety disorders.

My uncle had been moved from the hospital to a nursing home, and I had told my mum I would take her to see him this Sunday I did not want her negotiating 3 long bus journeys to get there. I also wanted to see him because I had been told he was now much better since he had left the hospital, he was no longer like a drugged up zombie and I needed to see this to settle my own mind.

My mum called to my house on Sunday morning whilst I was gagging on crumpets so I could take my ribavirin, not long after this, the panic attack kicked in. I told my mum I would not be able to go along to see my uncle, but that my partner would take her. However after a while the symptoms began to subside and my desire to see my uncle looking well gave me the incentive to go along. I was glad I did, even though it was awful seeing him in that dingy, dismal home with no garden, that smelt of piss as soon as you walked through the door. Despite this the staff were all lovely which was comforting.

I was pleased I was able to take charge, organise a wheel chair, find out where the nearest park was and get this poor man out in the fresh air. I wanted to cry just to think that he had not seen a blade of grass or anything of beauty for weeks.
We had picked my aunt up on the way and it was lovely to walk along in the sunshine, whilst mum and aunty chatted away and uncle smiled and waved at children and stroked little dogs.

When we returned to the nursing home I came over all funny again, and panic attack number 2 came to call. My partner helped me to the car, brought me water and a biscuit and stayed with me whilst I trembled and jerked and fought for my breath, and while aunty and mum said their goodbyes to uncle. It is laughable that these symptoms that make me feel like I am going to die can be alleviated with a glass of water and a biscuit.

When we got home I was exhausted and lay on the settee whilst my partner took my mum home. I tried to eat dinner later but it was a bit of a struggle and I couldn't manage much, by about 9pm panic attack number 3 booted the door in and said Hi.
By this time the tension in my back, chest, shoulders, neck was incredible, I was struggling to get a satisfying breath and I cried like a baby.

This morning I felt wierd, my partner is at work and I didn't know whether I should go to A and E, as I had chest pains. I wondered if I still had a chest infection, but I couldn't organise myself to get this together.

Then the phone rang, it was my nurse to ask how I was getting on with tx. I told her about the panic attacks and chest pains, she comforted me and called me sweetie. She told me there was an attenders clinic I could go to tomorrow and see a doctor who would examine me and check my chest, she said she would go and get me an appointment and call me back. Within minutes she called me back with an appointment for 12 noon tomorrow, she confirmed what Minerva's nurse had told her, that anxiety attacks were a side of tx with some people, she called me darling. I put the phone down and cried because of her sympathy and understanding. I feel better just knowing someone knows what is going on, the tension in my chest is easing, I'm writing my blog.

So that is why this posting is entitled My Nurse is an Angel. We are going to get on just fine.

Thursday, August 04, 2005

1st Injection.

Hi everybody, and thanks to everyone who kindly posted advice for me in preparation for today.

I had my 1st injection, 80mcg peginterferon alpha 2b, 2-3 hours ago, and apart from feeling a bit light headed and not feeling like I could run a marathon. I feel not so bad, a bit of a vague headache, but wouldn't like to venture far from home. I'm to take only one dose of 400mg ribavirin later today, and after that I will be taking 2 doses a day.

I was outwardly composed when I arrived at the hospital, inwardly very anxious. I had gone along armed with my tick list, current vitamins and medications and the ELPA petition.

My nurse came to see me to take bloods and check blood pressure. We had a chat about the tests, which tests she was going to do etc. She told me they would do a viral load check, hep b and hiv and blood count. I asked about the ALT and AST, but she said they had done these in 2004 and they shouldn't have altered very much. I think she was a little impatient with my questions, never really answered me clearly and just kept telling me not to worry about it.

She began to prepare to take the blood and I pointed out the site where it is best to get blood and the angle the needle should enter the vein, as the vein is a bit twisted. She proceeded to go in at a different angle, and as a result could not get any blood, and so began to dig about. As I've been through this process zillions of times in the last 5 years and I knew there would be no result, I tried to advise her. She whipped the needle out, and in what I thought was a brusque manner said, 'ok where do you usually go in, or I could just take it from your neck if you like.' I was a bit shocked as it has never been necessary to do this before, I know the neck is a favourite site for IV drug users whose regular veins have collapsed, and what did she mean, where do I usually go in?

I told her that I did not wish her to go in my neck, then she looked at me and said, 'look you're very agitated, I'm only trying to lighten things up by making a joke, to be truthful Miss Poppy I find your attitude a bit offensive!!!' What??? She continued, 'you're very uptight, you need to take a chill pill or something and try to relax.'

I couldn't believe what I was hearing. I told her that I was indeed very anxious and nervous, and because I had been messed about and things had not gone right on other occasions I just wanted to make sure things went smoothly this time and what have I done that is offensive?

I don't know about you, but I do get tense when I have blood taken, this is because on many occasions I have advised the blood nurses where they can get blood, then against my better judgement and in order not to offend them, I have had to agree to let them go into another vein that looks good but doesn't yield any blood, as they have thought this was best, only after being poked and prodded have they finally agreed to go where I've suggested. It does piss me off no end to have to go through this distressing rigmarole time and time again, to pussy foot around their egos when I'm the pin cushion, and yes I do get agitated. I don't go in there trying to tell them their jobs, or demanding this and that, I just tell them politely what my many previous experiences have shown me.

I tried to explain to my nurse that my anxiety was not a personal attack, (although I did feel hers was), but each time I opened my mouth to speak, she talked over me, repeatedly saying you need to calm down and take a chill pill. When I was finally able to get a word in, I told her I found her manner offensive, that the inference in her present directions and at a previous consultation was that I was an IV user and that I'm sorry I didn't laugh at her joke, but I actually thought she was serious. Even at this point she was still not really listening and threw an exasperated, eyes rolled back look to my partner, as if to say, doesn't she go on. I realised I was supposed to take her remarks on the chin and not defend myself.

At this point my partner also joined the circus, and made a few well constructed comments himself about it being understandable that I should be nervous and that I was offended by the references to IV use. My nurse began to calm down, but I just wanted to cry, I'd not even had anything done by this time.

My nurse could not site anything offensive that I had done or said, and I felt she began to back track very rapidly. She told me she was there to help me, (!!!???!!!) and it was best if we got on as we'd be working together. I agreed with her, what else could I do, despite finding her overbearing, insolent, rude and aggressive. She said there was nothing to worry about, which was a far cry from what she told me at our last consultation.

She sent for another bloods nurse to take my blood, this one did what I suggested and got the bloods no messing. My nurse said, 'oh you are right', at that point she also agreed to take the ALT/ALT bloods. We then got down to the injection which went well, I did it myself and I found it easy.

Anyway its over, I could have done without the nurses awful attitude, but I will put it behind me and try to forget it. I'm sure there was a learning curve in there somewhere for her too, she now knows I will stand up to her, a good thing for bossy bullying types to know. In her favour, she signed the ELPA petition, and in the end was speaking to me like I was a person.

The tick list went out the window, neither was I asked about current medication, or asked to complete any healthcheck questionairre.

I go back to the hospital in 2 weeks, I have 1 injection to take at home next week and 56 ribavirin tablets to keep me going.

My apologies to anyone who is/was an IV drug user if my comments cause offense, but I am aware that prejudice does exist within the NHS and understandably, at this point, IV drug user is not a label I wish to have attached to me. Soz.