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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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


Blogger nick said...

Spunds awful Misspoppy - I can empathise over losing kids on trips etc. People seem to think outings like that are 'jollies' for all concerned - we know otherwise! Likewise, I have frequently worked closely with social services, and am aware of there whims and vagaries. I once chaired a child protection case conference when the social worker decided he needed to go and sort out his passport for a week later! Clearly I had nothing better to do!!
Hopefully you are feeling more settled now - but what a terrible way to start. At least you didn't have time to dwell on tx!
I'm sure all will settle into a pattern and you will be able to focus on caring for yourself - which has to come first!!

4:50 PM  
Blogger carol said...

I agree kids can be a nightmare, we have two, both older than yours (I think) and we still have the worry.
About the panic attacks and lack of air. These attacks effect people in many different ways. I know how frightening it must seem at the time, but try and take a gulp of air then count to 5 before letting it out again. It will slow your system down and hopefully let you feel 'normal' more quickly.

7:02 PM  
Blogger lu said...

Hi Miss Poppy
Having just moaned on in my own blog I feel ashamed having read yours. I am sorry to hear about the panic attacks - they can be a real nuisance can't they? I often think of them as playing tricks on people, making them believe these scarey things are going to happen (can't breathe, going mad, going to die, going to pass out etc). Whilst I hear they can be a tx side effect, your life sounds seriously stressful at the moment too! I am amazed and in awe of your continuing levels of activity and ability to look after others during such a tough time. You must be very strong indeed.
Thoughts and wishes for a calmer and easier week

11:51 AM  
Blogger misspoppy said...

Hi Nick, Carol and Lu,
Your comments are all so very welcome, and I thank you all for your concern, the expression of which, bolsters me tremendously, especially as it comes from you guys who understand 1st hand what is going on with tx.
I did go to the hospital yesterday where I was examined and given antibiotics as I may still have a bit of a chest infection, a sambutol inhaler as the doctor suspects I may have a touch of asthma, (I did suffer with this as a child), and finally some mild sedatives called zopiclone.
I don't intend to use the sedatives unless absolutely necessary, and they were necessary last night. Also I feel better having these to hand should sleep evade me tomorrow, which is my next injection day.
It made me cry when you said I was strong Lu, I am, and I'm determined to get a handle on these audacious symptoms.
with much gratitude,
Miss Poppy

1:28 PM  
Blogger Melanie said...

My prayers are with you Misspoppy. Just a word of encouragement from someone who's been there...There is life on the other side! Meanwhile, hope it's comforting to know there are those who know EXACTLY what you're going through.


10:06 PM  
Blogger Ron Metcalfe said...

Hi Misspoppy

Glad you have found a more positive connection with your nurse - sometimes we are so tense and sensitised at the beginning of treatment it is hard to hear ordinary banter or chat as just that - when we are at an awfully scary moment in our life.

You are coping with supporting alot of others - as a social worker too I recognise what that's like. And I wonder if you can find ways to let them support you too - cause it's important you also have the 'stress-free' space and support to get yourself well - so you can continue to care for others in future.

I admire your strength in dealing with what you've got going on at the moment. And it's that strength and your determination which will help you through this treatment.

Wish you well

2:22 PM  
Blogger minerva said...

Hi Miss Poppy

Am pleased that things are working out better with your nurse. It really does make such a difference.

And yep, I also know the 'joys' that working with young people can sometimes bring!!

Sounds like you have been having a tough time with it all recently and I hope everything 'calms down'. Also, hope that the panic attacks subdue. If its any comfort, I have not had any more since around 2 weeks ago and I think it maybe partly down to my body getting used to the tx, as well perhaps as having a better understanding of what is happening when they occur. Will definately hold onto the 'water and a biscuit' technique should I experience one again.

All the best:)

6:31 PM  
Blogger ijaz ahmad said...

Hi Miss Poppy,

I can feel what you are going through.my all simpthies are with you. God bless you. i hope you feel beter soon.

With best wishes.

11:23 AM  
Blogger misspoppy said...

Thanks Melanie, Ron, Minerva, Ijaz, everyone,
Have been unable to blog or comment due to severe sides.
Have been taken off tx, spent 2 days in hospital.
Will write up details when I am a little better.
Miss Poppy

11:01 PM  
Blogger nick said...

Hope all is ok Misspoppy - sorry to hear about the problems with tx. Will wait to hear more - good luck, and my thoughts are with you

6:31 AM  
Blogger minerva said...

Sorry to hear that Misspoppy. Hope things improve for you swiftly. Thinking of you.

All the best.

4:33 PM  
Blogger Elizabeth Anne said...

Thinking about you MissPoppy. Hope you are doing ok today. I was very sick on treatment and did end up in hospital as well. Dehydrated and anemic with a high temperature. Frustrating and upsetting and made me weepy, sick and mad. Hang in there and try to stay positive.

4:46 PM  
Blogger jon said...

Looking at asthma info online today while my son coughs I came across this post. Does anyone know a good asthma site to help?


2:38 PM  

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