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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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.

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.


Blogger Paul said...

As a former iv drug user my veins are pretty difficult to get blood from. If they don`t do exactly what I tell them and get it right the first time, I insist on taking the blood myself. They are usually quite glad for me to do this as it taking blood is often as nerve wracking for them as it is for us.
You do well to establish a "lets begin as we mean to go on" relationship. You will be seeing her every month for the next year.
It fascinates me how EVERY hospital is different in their procedure.
My nurse doesn`t take my bloods but sends me to the path lab where they are doing it all day long.
I asked for the blood results to be given me when I see my nurse and she is happy to explain what they mean and whether there is any cause for concern.
Funny, I am totally open about my previous iv drug use and have never come across any adverse comments. In fact, I get congratulated on having come through and remaining clear for over 30 years.
I am so grateful for my relationship with my nurse. We hug and laugh and joke and she loves my list of questions I have every time I see her.
Under any uniform is a human being. Thats the problem.

Great that you have started. All the very best for your journey.


8:17 PM  
Blogger misspoppy said...

Hi Paul,
I am jealous of your relationship with your nurse, maybe if I were, dare I say, a man, a cowboy even, I'd have been treated differently.
I am hoping my nurse will improve and mellow when she begins to read me right, and stop being so darn touchy. Hey, maybe she needs a chill pill more than me! She did apologise, which was something positive and shows promise.
I think we'll probably rub along just fine now we've established major clashes of personalities and differences in how we project our emotions, ie, when I am tense, I am tense, and would love a chill pill, but I understand this could be detrimental to my liver. Why on earth did I percieve this hiariously repeated comment as vaguely insulting? I'm losing my sense of humour, I hope it comes back when tx ends.
I know, I know, she's funny as hell, especially when the amazing neck gag is delivered with a classic deadpan stare and slightly knitted brows. But even though I was unable to laugh, my refusal was never intended to offend!
Anyway I'll be on ribavirin next time I see her so I might just blow her away, hey just a joke.
I'll learn to love her.
Good wishes
Miss Poppy

9:53 PM  
Blogger MartinB said...

I know the feeling about getting blood. The basic problem is that professionals don't like being told what to do by amateurs. I too have been thoroughly messed about by letting them have their way, and now tell them what to do. Path labs are definitely better than anyone else, and will do exactly as you tell them. They have the wit to realise that you are trying to make their lives easier, and that you know what works for you!
All this tends to mask the good news that you are on the way to a cure! Congratulations, and best wishes for an easy ride,

10:44 PM  
Blogger misspoppy said...

Thanks Martin,
and well done for the very positive newspaper article.
It is interesting to hear how many bloggers have easily got their blood test results. My nurse told me I would have to talk to the ward sister, or someone, and sign a form saying that I would be responsible for my own records and it may take a while to sort out. It sounded a bit far fetched to me, I've not heard anyone else mention this palavar and I've only asked for copies.
My nurse said don't worry I promise I will tell you if things are not good. Cheers. I didn't persue this yesterday as there was just too much going on. I wonder if anyone else has had a similar experience when requesting this information?
Martin I have sent you a few emails, one today. None have required a response from you, but each time I send one, a message comes up saying my computer has performed an illegal action, so I'm wondering if you actually recieve them. Would you let me know? The same thing happens when I email Ron too.
Hope you have got good news to share about your test results, all my very best wishes with that.
Miss Poppy

11:06 AM  
Blogger ijaz ahmad said...

Hi Miss Poppy,

i am very glad that you have started your tx. hopefully you will be alright. i hope your nurse will be good to you one day.

all the best.


2:09 PM  
Blogger minerva said...

Hi Miss Poppy

Gadz no wonder you were annoyed with your nurse!! Seems to me she has a very 'odd' sense of humour...I hope for your sake that she either takes a 'chill pill' herself or can be a bit less patronising next time you see her. It makes me realise how lucky I am with the nurse I have (who takes my bloods herself).

Is maybe worth exploring the possibility of changing nurse...if the situation doesnt change. Is stressful enough without having to endure that sort of attitude.

Good luck with your treatment.

2:44 PM  
Blogger Kerry Grace said...

I am glad to hear the injection went well but sorry things went so badly on your first visit. I hope in two weeks you can look back and laugh - I am sure your sense of humor will return, as it almost has to out of necessity! We find assigning humorously descriptive names (that description itself is a euphemism!) to people and places works well to this end! Just be careful no one overhears you! It is interesting for me to get a glimpse of how things operate over there. Strange about the access to labs. My guess is she was shocked to hear “ALT/ AST” from a first time patient and didn’t quite know how to respond. It sounds as if you have already figured this out from your first visit - so just to confirm for confidence sake - if you start to question and use the “vocabulary” you will form a different relationship with your team. Having practically lived at the hospital over the past 2 years I have learned that informed and inspired patients are few and far between - the nurses will assume you simply want to be told what to do and then may or may not do it. We have been told straight out how pleasant, and rare, it is that we take such an interest and active role in treatment. I think the Forum may just revolutionize Hep C treatment in the UK and the nurses will have to adjust themselves to informed and proactive patients! I hope so!

Your journey has just begun! You will do well!

3:26 PM  
Blogger JayneC said...

Hi MissPoppy, congratulations on starting TX despite the run in with your nurse. I wish you all the best as you continue on.
I saw your comments about feeling nausea with the Ribas. I've found in my short 7 weeks that it's imperative that I take them in the middle of a meal or if I really can't face food then a rich smoothie does the trick. The other thing I've followed that my nurse advised me was to drink plenty of water.
Best wishes,

10:35 PM  
Blogger misspoppy said...

Hi Ijaz, Minerva, Kerry Grace and Jayne,
It is so fantastic to have your support, such a boost.
You know I don't think I will change my nurse Minerva, unless things deteriorate further between us. Working with young people with challenging behaviour, as I believe you have done yourself, equips you with the skills to deal with negative attitudes, and I shall pride myself on turning this around. I'll use the tactics I use with my ASBO kids. Or maybe next time I go to see her I will go armed with a bunch of flowers...not.
Don't worry Kerry Grace, I have not lost my sense of humour, that comment to Paul was made tongue in cheek, we Brits often adopt a dry, ironic humour when things go wrong. Anyway 2 days after the injection I can see plenty of material here for a few good belly laughs before I see her again.
Jayne, I will go and buy some smoothies today, its a bit of an ordeal trying to stuff buttered toast down my throat in a morning, I'm gagging all along. However, I'm not feeling any effects now when I take ribavirin, so I think it was the injection creating the symptoms. Guess I'll have to wait a little while longernfor the effects of the riba.
Good wishes to you all,
Miss Poppy

10:50 AM  
Blogger lu said...

Hi Miss Poppy
Sounds awful, you are having a bit of a rough time with your nurse aren't you? I hope your relationship improves - perhaps once she has put aside whatever assumptions she has made about you and regards you as a person in your own right, things will get better. Sounds like by the end of your appointment this had already started to happen. Well done for hanging in there and staying assertive.
Peace and health

9:47 AM  
Blogger misspoppy said...

Hi Lu,
It was nice to find your comment here today, especially as I know you've not been feeling up to much lately.
I do think things were improving with my nurse by the time I was leaving, so there is hope that we can move forward in a more positive manner.
To be honest the issue with my nurse has just paled in significance over the last few days, I had 3 'panic attacks' yesterday, Sunday, and was totally debilitated with nervous exhaustion. I suspect low blood sugar levels may be partly to blame, but I'll write more about this when I next blog.
Hope you are managing well at present.
Good wishes
Miss Poppy

10:43 AM  

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