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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

Friday, December 30, 2005

Treatment will kill you

Okay so another attempt to bring this blog into real time before the new year, I've not quite got there even with this entry, but it is one step further along the road. I have an appointment to see my consultant in January, so I would like to be upto date by then. The way its going I'll be lucky to get the job done by the chinese new year!

Talking of New Year, best wishes to everyone who reads this blog, I hope for many of you 2006 means a healthier and virus free new year and new life for you and/or your loved ones.

If you are reading this and contemplating treatment, please be aware that the reaction I had to interferon and ribaviron is very rare and it is unlikely to happen to you.

So I waited patiently for almost a week until 8 September when I could see my doctor. Most of the week I spent in bed, getting up for only short spells at a time when I felt I had a little energy. Sometimes I could function for an hour or so at a time, sometimes just a conversation would wipe me out and send me back to bed.

I arrived for my long anticipated gp appointment, now I would report all that had happened to me to my doc and she would hopefully get a care plan together where there would be some semblance of continuity of care, we would discuss ways forward, and how to manage my symptoms etc.

I entered into my doctors office and found I was being greeted by a complete stranger, a locum, doctor Zia!! I just burst out crying! I was so disappointed, angry and overwhelmed that I would have to explain what had been happening for the last weeks to a locum doctor who I thought I would probably never see again. I apologised to doctor Zia for breaking down and explained how much I had felt I needed to see my own gp at this point and how I hadn't been prepared to see a locum gp and how I just wanted to be seen by someone who would monitor my condition and be responsible for my continuous care.

Doctor Zia asked me if I had asked if I would see my own gp when I made the appointment. I explained that I hadn't asked as it was only a one gp practice I had reasonably presumed that I would see the only gp who works there! This question by doc Zia irritates me slightly, I think why is the bloody onus on me to ask? I think I ring the surgery and request an appointment to see my gp, the only one who works there, why on earth should it enter my mind to ask if I would actually see my own gp? To my way of thinking the surgery should have informed me that my own gp was unavailable and advised me when I could see her. Anyway the doc tells me that she will be working at the surgery more regularly as my gp is reducing her hours. Well thanks for letting me know about that.

I try to explain to Doctor Zia what has and is happening for me in some understandable order, she seems nice and she is young which is no bad thing. I ask her if she is familiar with hepatitis c and the treatment, she tells me she isn't. I persevere. Doc Zia tells me I am stressed, she's dead right there, she offers me antidepressants!! NO THANKS, I say I think its best I just leave all that stuff and just let things settle. I ask her if all the left side weakness I am suffering is a typical symptom of stress, she admits that it isn't really something she has come across. Great.

Doc Zia agrees I need continuity of care and admits they do not have any results of any blood tests or any notes from the hospital about what's been happening with me or my treatment. Isn't that just bloody marvellous? She says she will write to the hospital and tell my consultant that he needs to see me. With that I leave feeling that the whole exercise had been a bit of a waste of time. apart from an offer of antidepressants there was nothing this doctor could do for me or say to me at that time.

As I leave I make another appointment to see doc Zia the following week on 15 September. I'm finally learning to make contingency plans, not just leaving the surgery empty handed and finding a few days down the road things have gotten worse then wait another week for an appointment. I am beginning to realise that carrying hepatitis c symptoms for years and not getting a diagnosis has been partly due to being expertly fielded by the system when things aren't easily explainable and left to manage, when you finally get to the doctor the symptoms have subsided so nothing is done and you just wait for the next episode and so on. I felt I should be monitored by somebody whilst I was having those awful symptoms, that someone should know what was happening for me. I returned home exhausted and back to bed.

My next medical appointment at the hospital was 14 September, when I was to see doc Rachael who had prescribed the cipramol for me and who was on holiday when I reacted badly to these and it all went pear shaped. Doc Rachael had advised me at my last appointment to have my neck xrayed before I saw her again. I was still feeling dreadful but glad that I would be able to speak with her about the reaction to the cipramil and the continuing symptoms of left side weakness and hopefully she would investigate that now. We had got a little care plan together last time I saw her, and although the plan had gone to pot, at least here now was the first symbol of continuity of care as I would be seeing the same doctor twice in succession. Well that is what I had thought.

I turned up for my appointment and informed reception I was to go and have the xray before I saw the doc, and off I went. I came back to the waiting area and the nurses were flustered when they saw me, apparently they had been calling my name and looking for me for the past hour, no one had informed them I was in xray they thought I had gone home . 'That was despite the fact that xray had phoned the reception and advised them that I was going to be delayed!

One of the nurses took me off to weigh me and told me I would see my consultant and not doc Rachael. I was disappointed and upset by this as I had not seen my consultant since before I went on treatment, now I would have to fill him in on everything again and bring him upto speed with what Rachael and I had agreed before we even got around to my current state. I had so much I wanted to discuss with him and I wasn't in the least bit prepared, I wished I had known beforehand that I would be seeing him instead of Rachael, my thought processes were too slow to adjust to this new development.

I went in to see the great man himself. He told me he had received a letter from my gp requesting that he see me, so that happened much more quickly than I had anticipated. Without much preamble he clipped my xray to the wall and went into a long sermon about my neck, about how it was not as bad as his, about how he would prescribe me a collar to wear, about putting a hot jet of water on my neck in the morning in the shower! The more he went on waffling away my consultancy time, the more uptight I became. This is not why I was there, I had been dealing with spondylitis since I was 25 years, this was not why doc Rachael had requested the xray. I see the physiotherapist for this type of discussion.

He finally began to speak about my treatment and that's when he dropped the bombshell! 'I will not be putting you back on treatment for the simple reason that treatment will kill you'!!! I was in shock, this was not what I expected to hear. My mind was racing, 'Couldn't you put me on a child's dose?' I ask.
'If I put you on a child's dose you will die'!! Those were his words plain and simple.
I asked him about a biopsy to check how my liver was faring. 'I will not give you a biopsy because there is no point, what is the point of knowing you have liver damage if you can't have the treatment?'!! I am doubly shocked.
'But you know I have genotype 1b', I say, 'and you know that this can mutate to cancer without intermediate cirrhosis, shouldn't you do a biopsy it has been 4 or 5 years since my last one.'
'Even if you had cancer I would not give you the treatment', he said. 'Look, your blood tests are ok, we will keep monitoring them, come back in 4 months.'
I could not take all this in, all the things I wanted to discuss went out of the window. I left with my head in bits with all my awful symptoms, with the full knowledge that that was the end of my current care there, no matter how I was feeling. I returned home and back to bed, isolated and with ever deepening depression.

That's it for now. I will endeavour to complete this soon. Still got more of a nightmare with aftercare from my gp and locum to report as well as the accupuncture saga. It will have to wait until next time.

6 Comments:

Blogger Ron Metcalfe said...

Hi Miss Poppy
Been catching up on the blogs - sorry to read what a difficult time you've had with the medical profession as well as the treatment.

Wishing you peace happiness and good health in 2006.
Ron

7:17 PM  
Blogger misspoppy said...

Thanks Ron,
I really do think I was jinxed from start to finish with both the medical profession and with treatment.
I wonder what I would have done with out the forum. Myself, like so many others, owe you a debt of gratitude Ron for providing this lifeline for us.
Thanks for the good wishes for 2006. I hope you too find good health, full recovery and svr in the new year.
All the best
Miss Poppy

5:30 PM  
Blogger carol said...

Hi Miss Poppy,

Hope you have a good New Year. Best of luck with your consultant.

Carol

11:16 AM  
Blogger nick said...

Hi Poppy - I get so sick of these so-called professionals blustering their way through - why won't they just admit they don't know what they're talking about and refer to someone who does! It's what a real pro would do.

I guess you know my views - I still think an informed second opinion would help - it was what finally got me started.

Hope all is ok - and take care.

Nick

12:31 PM  
Blogger misspoppy said...

Hi Carol and Nick

Happy New Year to you both and your families.

I am preparing for the second opinion Nick, as I begin to recover some energy I am planning how to proceed and am almost well enough to launch a counter attack!

Very best wishes
Miss Poppy

4:19 PM  
Blogger mrs&daughterromany said...

I was diagnosed August '03 with Hep C 1a - v.big shock, as was not aware of how I had contracted it (through none of the typical routes, anyway). After invasive and non-invasive procedures, was decided I would receive combination therapy 48 wks. After 6 mnths of suffering, extreme side-effects, I felt it was killing me. After discussion with family desperate for me to stop, decision was made to stop after 6 mnths. Anorexia, thyroid probs, skin inflammation, memory loss, depression, flu symptoms, nausea, diarrhoea, extreme hair-loss etc etc ad infinitum (!).
Was diagnosed with v.high iron level (but not dangerously high), only thing could keep down in between vomits was alcohol (!). Never told to give up drinking completely, and have always had extremely good, healthy diet, no dietry complications. After stopped treatment, hopsital and doctors effectively washed their hands of me, started making big deal about blood results and alcohol consumption, when bloods prior to treatment were relatively normal.
Now I am dealing with the problem of not being able to work, due not only to the stigma associated with this illness, but the fact that after a DSS doctor's appointment, am saddled with significant cognitive impairment. I have found 'specialists' in Hep C to woefully uninformed and just as bigotted as non-specialists, making me feel that I am the person with the problem. They have also been slow to refer me to an Occupational Therapist, which was recommended by the DSS doctor (he has been the only person, aside from family, to take my probs seriousy). It has left me depressed, isolated, and very much alone, destroying a long-term relationship with my partner of 5 years, as well as several friendships.
What has been your experience? I am desperate for contact with those who have had similar experiences, as such people tend to be thin on the ground.
Miss Romany, the Wirral.

7:49 PM  

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