HCV Positive

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

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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

Sunday, July 03, 2005

HIV Test Farce

The morning after I returned from Crete I rang my nurse for my hep b and HIV test results. My nurse immediately told me she was due to go in clinic and would call me back tomorrow, then she must have realised she was stood in the office with the admin staff and my records to hand , because she next said if I hang on a minute she would ask the secretary who was in the office with her. I was glad she did this as I really didn't wish to wait longer than absolutely necessary. I heard her ask the secretary for my results and in just a few seconds I heard them speaking together.

I was, naturally, really tuned in to this, because before I rang I was wondering if they actually would give me the results over the phone. (I mean what if it were positive, would she just say, sorry Poppy you've tested positive, must dash now for clinic.) Or if they would tell me they couldn't give the result over the phone, and then I would worry because why wouldn't they give me good news immediately.

I couldn't make out what they were saying to each other, but I could hear the tones of their voices and they seemed relaxed. After a minute my nurse told me that she didn't have the results as they had sent off for the wrong test, they had sent for another hep c test in error!!

I will not write down my mental reaction to that piece of news, but it was something like, f*****g d*******s!!

Outwardly though I reacted quite well, quickly remembering I need a positive relationship with my nurse. I went into damage limitation mode and asked her if they would put in for the tests again, she said they no longer had enough supplies of my blood. Feeling a bit negative I allowed myself the unkind thought of, not that old chestnut again, as she had said this to me once before about not having enough blood and had been wrong that time.

So I asked her if she was sure, she said she was sure as they had had to use a lot when they did my genotype tests. You didn't use any old stock for my genotype tests, I told her, I gave fresh supplies of blood for those each time, (I had 2 genotype tests). Never mind, she told me, you've been messed about enough, we'll just take a test when you come in for your treatment, and if its positive we'll be able to adjust your treatment, it shouldn't cause any problems.

Now this might sound okay, but it didn't feel ok. This was the same nurse who pressured me to have the test, who suggested, wrongly, that I wouldn't be able to have treatment if I refused to have the HIV test. The same nurse who I gave the instruction to, to proceed with the tests, so who is responsible for getting the test wrong and how could they make a mistake like that? It doesn't inspire confidence and I feel I've had an unnecessary, stressful head trip which will now extend until treatment is underway.

I suppose I could go to the hospital, give more blood and get the thing done sooner, but I just didn't want this to turn into such a big issue, also I just don't feel like making time to do this. I hoped after my holiday I could relax and not have to think too hard about these things.

Apart from that, the holiday was great. We stayed in the coastal village of Almyrida with its beautiful coastline, stunning mountain backdrop and lovely rural aspect which lent itself to uplifting strolls beside lush olive groves and vineyards. Food and weather were excellent and I spent a lot of time sleeping, which, going by the amount I did, was much needed.

I feel a lot better since the break, the holiday really helped reduce stress levels which were nearing danger point. The HRT reduction seems to be going well with no significant symptoms. So good stuff there.

The students I host have now gone back home to China. They were great boys but I'm glad to have the house back to myself and I am pleased I will not have any students when I begin treatment. The college will hopefully have more students in September, and all being well, I'll be able to take some more then.

Watched the Live 8 concert last night, it was fabulous to see Pink Floyd, what a treat! I also enjoyed, The Who, Snoop Dogg, REM, Mariah Carey, Robbie, ooh and so much more. Hope the event gets the right result.

4 Comments:

Blogger nick said...

Welcome back, Misspoppy - glad you had such a relaxing holiday - sometimes it almost feels as if you Hep C etc is left behind, and there is a window for relaxation before coming back to reality.

Sounds like you are being messed about by medical staff. I get so frustrated with some of the ineptitude and the casual manner in which people are treated. I blame Government targets (in fact, I blame them for everything).

I understand also why you feel the need to maintain a positive relationship with your nurse. Oddly, most people find their nurses very supportive indeed - it'susually the consultants who get it wrong. However, the age old health service policy of passing the buck and covering each others' back tends to generate a smoke screen which is at best frustrating, at worst hides gross incompetence.

Hopefully, the Face It campaign will develop awareness in professionals as well as the public - but if the BBC report this week is anything to go by, there's a long way to go before clear and accurate information is available. What infuriates me most is that if I were to be as casual and make the errors which hospitals make, I would be hauled over the coals and called to account in no uncertain terms. They get away with it.

Anyway, lovely to see you back, and let's hope you can continue to enjoy the rest which your holiday started.

6:17 AM  
Blogger misspoppy said...

Hi Nick,
Thank you for the warm welcome back. It was very much appreciated.
I completely agree, it is infurtiating sometimes to be treated so casually by hospital staff.
I have to prefix my moans about the hospital I'm under with, 'they saved my life, but....'. The tales I could tell about my time as an inpatient with malaria are scary.
When they discharged me, they sent me home with no district nurse organised or social services help. They pushed me out in a wheel chair, in floods of tears, protesting I had noone to look after me and clinging to the oxygen mask in sheer panic. I couldn't believe this was happening.
At this point the staff nurse informed me she could organise a district nurse to visit me if I wished!
I could not walk or wash myself, I was extremely weak for months after.
A few days prior to my unexpected discharge my consultant had come to my bed and asked me if anyone else lived in my home. I told him I had a french student who had moved in the week before I went into hospital. He asked if the student would be able to dial 999 in an emergency. I didn't understand why he was asking me this, I still had mega mental confusion, so I told him she probably could, I really didn't know her that well. He then said you may be going home on Friday, but I didn't really take this on board as he'd said this to me before when I still didn't know what day it was, it didn't happen then and considering how weak I was I didn't think it would happen this time.
I cannot explain here the initial devastating effects of sending me home with no support in place. The district nurse was no use whatsoever,on her first visit she told me she was very busy and couldn't stay long. However after about a week, the 3rd nurse had the sense to inform me I would be entitled to social services help and gave me the number to call.
I rang social services but they were closing down for xmas, so no help forthcoming there. What they did tell me though, was that I should have been assessed by social services before I was discharged from hospital. Further, that there had been a social worker assigned to my ward when I was there and staff should have alerted her to my situation.
Thank goodness my 72 year old mum was able to move in with me, and despite having flu herself, still managed to begin caring for me a 5am each morning. After that she took the bus into town to bring back heavy bags of shopping on the bus. It upset me no end that she was put upon like that when it was all completely unavoidable.
I was far too sick to complain then and I remained weak for many months.
That is just one little tale of massive incompetance.
Boy it feels good to get that off my chest.
Best wishes with the Face It campaign, there's a lot of educating to be done and it certainly seems like you have the bit between your teeth in this respect, which certainly gets my applause.
Good wishes
Miss Poppy

10:57 AM  
Blogger lu said...

Hi Misspoppy
OMG what a farce!! How awful, I really really feel for you having to go through ALL of that initial deciding to go ahead with the test, and then having to cope with them making daft mistakes and prolonging things even more! When you wrote about your phone call, I could just imagine what you must have been going through! I had a similar incident when I went for my HIV result, as I waited for about 1 1/2 hours, and of course I assumed they must be waiting for one of the counsellors to come and break the bad news to me. I was beside myself! I eventually went up to the desk, and trembling asked what was happening. Would you believe they had forgotten about me and couldn't understand why I was so anxious! So I can sympathise. It really is the last thing you need at the moment.

On a more positive note, I'm glad you had a nice holiday and that you got to do some relaxing stuff. RE: HRT, I know that herbalists have huge success with providing treatment in place of HRT. May be worth looking into if you need to.
all the best
Lu

2:55 PM  
Blogger Paul said...

Hello MissPoppy,
My first visit to your blog.
You certainly have been messed about.
I have found that the more informed you are about your situation the more positive response you get from consultants etc. If you can discuss your case with them on an intelligent level you are far more likely to get what you want.
I also am geno 1 and in week 22 of tx. Knew absolutely nothing about hcv last year. Had a bit of an education since then.

Hope things start to go a bit more smoothly for you.

Paul.

4:44 PM  

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