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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

Tuesday, November 22, 2005

Aftercare 2, and PCR Testing

It is now 16 weeks since I had my taste of treatment. I am feeling much better than in my initial reports, laughing a lot. I went out for lunch with a friend last week, it was lovely to begin to socialise. I am getting impatient to get this blog upto date and back in real time but find there is still much I want to record before I can do this. Those of you trawling blogs looking for information may wish to jump forward to the bold print where I explain my understanding of the PCR test.

I want to continue with the saga of my aftercare until it reaches its conclusion and the verdict from my consultant, so thank you for continuing to bear with me whilst I get on with this. I do still feel I need to get it all down in order. It kind of softens the blow to read it in installments, I want to finish it then read it all at once as that is how it happened, then I may know where, if anywhere I want to go with it. Writing this peice eg, brought to mind the sheer incompetance around blood testing at my hospital and may still result in a formal complaint, but I need to see everything together first.

I am continuing to recover my health, slowly but making progress. I seem to have increasingly longer runs of good days then a bad day. My energy levels are still very low and I can only easily do 1 thing a day, eg I would find it exhausting to go shopping, visit a friend for coffee, then take in a movie at the cinema. I am still having sensory disturbances but these are very much in the decline. The depression is easing, which is a marvellous thing. My concentration is appalling and I can only do what I feel to do, it is hard to direct my mind to do things that need to be done.

The good news is that I am going to Egypt on Friday, to a little place called Hurghada on the Red Sea. I just want to get away and get some sun on my face after spending most of the summer confined to bed. Some of you may know that I went to Ibiza to attend my friend's wedding recently, but you may not know that I spent most of that week in bed there too, very weak and poorly, so now I want a break where I can actually enjoy going out by the pool and having walks in a pleasant climate.

After my discharge from the hospital on Sunday 28 August, I was still very weak and I had to use a wheelchair to get around the supermarket and go straight to bed once I had done this.

I had an appointment to see my consultant on Wednesday 31 August and was looking forward to seeing the big man himself and getting some clarification as to what was going on, I was still in shock at the severity of my symptoms and had yet to have any answers as to why had I reacted so badly and how we were to proceed.

When Wednesday came around I felt I had picked up a little, I no longer needed a wheelchair to walk short distances and although I could break down and sob at the drop of a hat, I was also laughing and chatting that day, pleased to be making progress physically.

I went in to see my consultant only to find it was doctor Rachael, the first doctor I had seen at the attenders clinic who had thought at that time I had asthma, though later I found this was not the case. I was disappointed I was not seeing my consultant as I had still not seen this man since about a month before my treatment began, but I tried to remain positive.

I explained many of my symptoms, especially the left side disturbed sensation stuff, and the doc gave me a physical examination. She suggested we try increasing my thyroxine, I was not sure I wanted to mess around with this as I was anxious to get well not to create further problems by experimenting. I asked the doc if this was necessary and she said that we could leave it for now, take tests today to check thyroid function and look at it again in 2 weeks when we have the results.

(I also had a little inner conflict and confusion going on as I remembered when I had been in hospital the first time, one of the docs had said that my T4's were high but they didn't up my dose then. Also I had been told 3 days before, on Sunday when I was discharged from hospital that all my bloods were fine. I didn't mention any of this to Dr Racheal though as I had all kinds of other stuff racing around my mind at that time).

So doc Rachael observed that I was obviously depressed and she said I needed my mood lifting, she suggested she try me on some antidepressants and I told her that I had reacted badly to these in the past when they had been prescribed for bereavement. She recommended I try a new type called cipramil and to take a low dose, she said these pills would effectively gently bathe my nerves in seratonin and give me a lift. It sounded absolutely wonderful, bathing my nerves, yes I wanted some of that, so I agreed to give it a go.

The doctor was pretty sure that the left side weakness was due to stress and anxiety, she said, you must forget for the moment that the old full of beans Poppy is gone for a while, and you should accept that you need to rest, you need plenty of rest. She acknowledged my disappointment in the system whereby I never saw the same doc twice on the run etc. Doc R wanted to xray my neck to check the pain I have there (and probably the dizzyness). I explained it was not pain but disturbed sensory stuff on the left, although I do have long standing and painful spodylitis on the right.

Dr Rachael advised me to start taking the cipramil the following morning and if I found they made me a bit sleepy to take them in the evening the next day. I was to go back to see her in 2 weeks, I was to have the xray done just prior to my appointment with her and bring the xray to the consultation where we would look at it together.

Well this sounded like a jolly good plan, I had already got a bit of physical energy whereby I didn't need a wheelchair, I was to have more blood tests including thyroid, I was going to have my neck examined closely, I was going to have my nerves bathed in wonderful seratonin and I was going to see doc Racheal again in 2 weeks.

I was about to leave as the doc handed me the form to give to the bloods nurses for the assorted blood tests, then I remembered my HIV test and Hep B test, and also I remembered that my nurse had done the viral load test too that first day I had began treatment, and I really wanted to know what my baseline viral load had been. I asked the doc if she would give me the results and she told me that this was no problem, she flicked on the pc screen and came back to me with a negative HIV, fantastic news! Hep B, yeah you've probably had this before, she said, (well yes I definately have), and you probably will have to have a a vaccination but not now, we'll look at all this when you are better. Hmmm, she said, I can't seem to see your PCR results here, I'll ring through to the lab.

After a while it was established that there were no results at the lab, there was no PCR test at the lab, they had nothing there for me at all, they had no record of ever receiving a request for this Quantative PCR test for me!! Well, well, well, where have I heard that before? I was so, so disappointed not to have this information, and angry that these baffoons had managed to lose yet another blood sample of mine!!

Some of you may already have some knowledge about PCR testing, for those of you who haven't I will explain my understanding of these. There are 2 types of PCR tests, Qualitative and Quantative, a 'Qualative' PCR test will show whether you have Hepatitis C virus in the blood and is the test used to confirm you have HCV. The 'Quantative' PCR is to show how much of the virus is in your blood, this is referred to as you Viral Load.

The second test, the 'Quantative' PCR is usually only given to those with genotype 1, and is given before treatment begins to measure the viral load in the blood. This is because genotype 1's have to have 48 weeks of treatment as opposed to 24 weeks treatment for most other genotypes, and genotype 1's have the least success in clearing the virus with treatment, I think odds to clear the virus for genotype 1's range from a gloomy 50% to a more optimistic 65%. I have also seen some suggestion on the Hepititis C forum that because of the way these figures are collated that the success rate may even be higher than 65%, which is promising news for those with genotype 1 hepatitis c.

The purpose of the 'Quantative' PCR test for genotype 1 is because this test can be used to help identify early on, at week 12, those who will probably not clear the virus with treatment. By carrying out this test before treatment a record can be made of your baseline viral load. After 12 weeks of treatment a second 'Quantative' PCR test is carried out which should show a much lower viral load and indicate that the treatment is working and whether you are likely to be clear of the virus at the end of 48 weeks. The term the medics use is a 2 log drop, I think this means that you need to have lost 2 zeros from your initial viral load count, eg, if your initial viral load was 360,000, then at week 12 it should be around 3,600 if treatment is going to be successful for you.

If you are genotype 1, then week 12 will be a landmark in treatment, you will either have the 2 log drop and continue on treatment with a good chance of clearing the virus, or you will not have the drop and treatment will be suspended, saving you the ordeal of another useless 36 weeks of rough treatment and saving the NHS thousands of pounds on expensive medications.


Back to my story, I was really mad about the loss of my test, this meant I would now never know my baseline viral load, because it would now be different due to the treatment I had already had. I've heard it said that you kill most of the virus in the first 4 weeks of treatment in any case, unfortunately the virus does replicate again if treatment does not continue.

I remembered that first day of treatment and how my nurse made such a fuss about my bloods, suggesting to take blood from my neck! I remembered her saying, look Poppy it was not my fault that your HIV and Hep B test got lost, which I thought was a strange thing to say as I had not mentioned this myself. All I know is that on that day she should have taken blood to retest for HIV and Hep B as they'd sent off for the wrong test last time, my nurse told me they had actually sent off for a 'Qualatitive' PCR by mistake. So all that would have done is show what we already knew, that HCV was present in my blood.

Also that first day they should have done LFT's (liver function tests) and of course my 'Quantative' PCR. This PCR was so important, and if treatment had continued for me, it could have caused a great deal of upset at week 12 to discover that no one knew my baseline viral load! How could they be so incompetant, not once but twice!!

Doc Rachael agreed to carry out another 'Quantative' PCR that day which I was pleased about at that time, because it hadn't registered with me that really there was little to be gained from knowing this now as the test would show a low reading due to the treatment I had already taken. So off I trotted, mad, glad and sad, to have my bloods taken collect my prescription and head back home.

I will tell you what happened next with the antidepressants in my next post. In the meantime I wish all of you on the treatment journey a very gentle time. I hope to share the rest of my story when I get back from Egypt.

6 Comments:

Blogger carol said...

Hi Miss Poppy,

Thanks for giving us the rest of the story! I am so pleased you are well enough to go on holiday. Have a great time and tell us about it when you get back.

Carol

8:48 PM  
Blogger teddy said...

Writing this while your away Poppy. Hope your having a great time, enjoy the sun and I hope you come home recharged.
Speak to you when you get back..
Teddy

8:54 PM  
Blogger minerva said...

Yep, hope you have a fantastic time Poppy!! :)

Hugs
xxx

6:48 AM  
Blogger nick said...

Have a wonderful time, Poppy - you so deserve a break - and such a wonderful place to go. I was there a few years ago, and am planning to go again once I'm not losing several days a week to tx!!
Nick

9:54 AM  
Blogger ijaz ahmad said...

Hi Miss Poppy,

i been away from my computer now i am trying to catch up with other blogs.

i am glad to read that you are doing well and getting better slowly but steadly.
i wish you good health.
Ijaz

8:52 AM  
Blogger misspoppy said...

Hi Carol, Teddy, Minerva, Nick and Ijaz,

Thank you all for your kind comments and for sharing my story.

We were fortunate to have really lovely weather in Egypt, much better than expected and the holiday has given me a much needed boost.

Great to hear from you all!

Miss Poppy x

11:35 AM  

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