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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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, June 12, 2005

What, No Treatment!!?

As the results of my biopsy showed only mild inflammation, I was told that I would not be given treatment, but I would be monitored which would include a biopsy every 3 or 4 years.

I was not happy about this, although there was some comfort in knowing inflammation was only mild. However I'd had the chance to research the virus myself by now and I was beginning to wonder whether many of the odd ailments I had been experiencing before the malaria were possibly due to the virus.

I also realised that the damage to the liver by the virus was progessive and I couldn't understand why I would wait until I was further damaged before being treated. My consultant advised me that I should wait as new treatments may become available which may not be as devastating as the present ones. I didn't really have a choice and had to accept this. As far as I am aware there are no new treatments as yet.

I don't wish to complicate the story, but my partner also got malaria the same time as me and was also diagnosed HCV+ at that time. His biopsy showed cirrhosis and he was given treatment. He was type 2 and sailed through the treatment clearing the virus after 26 weeks.

In the meantime I was struggling with long shifts in the children's home, usually 10am to 10.30am the following day. It was a very stressful job and I was tired all the time, suffering from anxiety and full of aches and pains, very forgetful. I felt I couldn't tell anyone at work what was happening with me and this added to extreme stress levels. The work involved sleep in duties when you were supposed to go to bed at midnight after the young people were settled, but in reality you got very little sleep, often getting to bed stressed at 2 or 3am after one crises or other with the young people and still having to be up and back on duty at 7am. I did this a couple of times a week and it was crippling me. I had to leave this job, despite the stress levels I reluctantly left this post, relinquishing a permanant contract and taking up a temporary one in another field.

I continued to see my consultant from time to time until he told me they should start thinking about another biopsy. I didn't go back for a year. I then found from the Hepititis Resource Centre that biopsies were no longer necessary when assessing a patient for treatment.

When I did go back to see my consultant I was seen by his assistant. I had already been told that they wouldn't test for my genotype until I was ready for treatment but this guy didn't seem to have a clue. I took advantage of this and requested the test which he agreed to process. Bingo!

The next time I went for my appointment I was again seen by an assistant, a different one this time. She informed me it was time for another biopsy and I told her I didn't really want to do that again, she rang through to my consultant and after giving him my response, she put the phone down and told me I could go ahead with treatment if I wished. Wow, I hadn't expected that.

The assistant then gave me the result of my genotype test, I was type 1b and I was gobsmacked! How come I was not type 2 like my partner of 25 years? There were no answers only a lot of negative stuff about the length of the treatment and poor response rates. I told her I needed to go away and think about this as I had only ever prepared myself for having a type 2 genotype. She agreed and made an appointment for me to see the hep c nurse to discuss any questions I may have relating to treatment.

I saw the nurse who just gave me the worst possible case scenario. She made a big point that I should now be tested for HIV, I wasn't ready for that. I felt she was very negative and a bit like nurse Ratchet from One Flew Over The Cookoo's Nest, but I am reserving my judgement as I've only met her once and I am hoping that she'll turn out to be kinder and more sensitive than my first impression. I do hope so as I think we will be seeing a lot of each other and she will supposedly be one of my main sources of support at the hospital when treatment begins in August.

I again saw my consultant, the man himself this time, and we confirmed treatment dates etc. He again talked about the HIV test, when I told him I didn't feel I could handle this if it were positive he told me that people don't die from HIV these days. Anyway he didn't push it but told me it would complicate treatment if I were to find out later that I was HIV+, he also said he wasn't expecting that I would test +. He told me they didn't need to take any fresh blood for this test they could do it from old stock and if I decided to go ahead I could just ring the nurse and tell her to proceed with this and also a hep b test. I haven't done this yet, I can't make up my mind.

I can hardly believe I am actually going to have the treatment. I am excited and apprehensive. I do feel resentful that I wasn't allowed treatment earlier. I am 48 and now menapausal, I am not getting any younger.

15 Comments:

Blogger MartinB said...

Hi Miss Poppy,
Get the tests done and out of the way! The odds are that they will be negative, and you can then get a clear view of the way forward.
In the unlikely event that either is positive, you can at least decide in plenty of time on treatment before there is any damage. At present you cannot see the wood for the trees! You will get a more positive attitude from the medics when they, and you, know exactly what they are dealing with.
You know from your partner's experience what treatment entails, and his experience will help you. 48 weeks is a long grind, but if you get a result it is worth it. New treatments are still a long way away - at least five years, and probably eight or more.
In your shoes, I would go for treatment now, and hold the 'new future treatments' as a reserve in case the current stuff fails, or you have problems tolerating it.
Good luck,
Martin

4:21 PM  
Blogger carol said...

Hi Miss Poppy,
I'm glad you have been looking at the other blogs. You could also look at the forum, it's at http://www.ronmetcalfe.com/hepcforum/
One possible reason for having a different genotype to your partner, could be the blood that you were given when you were very ill. If it was abroad it may not have been treated as our supplies are here. One other point I would consider, is the cross-infection between the two of you, now he is clear. General cuts that need attention, razors, toothbrush etc. I do not hold with the idea of normal sex causing a path for
transmission.
Anyway as for being 'of a certain age' you have a wealth of experiance to call on. You won't be able to tell if it's the treatment or the menapause that's causing the symptoms, but at least treatment only lasts 48 weeks!
Anyway, the comment above mine is my other half, he can, and often does, comment for England!
Take care,

Carol

5:06 PM  
Blogger misspoppy said...

Hi MartinB,
Its good to meet you and thank you for the encouraging comments.
I so know you are right about the tests. I did call the nurse at one point to say go ahead, but I got voicemail so hung up. I will do it tomorrow if I don't change my mind again before then, or worse, forget. Seriously I will do it.
Thanks again and
Good wishes
Miss Poppy

5:44 PM  
Blogger misspoppy said...

Hi Carol
Thanks for dropping by again.
I understand what you are saying about the blood exchange, but I did have it done in this country. I have considered that I may have got my virus before I met my partner and he may have also already been infected so perhaps you cannot be infected with 2 different genotypes at the same time.
Alternatively if, eg, I was infected first, I may have infected my partner with type 1b and he may have spontaniously cleared the virus and then got reinfected elsewhere with type 2 but did not clear the virus, or vice versa.
Its mind boggling, but it would be interesting to know in terms of perhaps getting a clearer picture of how long I may have had the virus.
Yes cross infection is a concern, when I brought this up at my partners consultation we were informed to use contraception in future. His consultant wouldn't budge from this even in the face of our obvious and voiced dismay. I suppose he felt he had to err on the side of caution but it would have been helpful if he could have qualified this, perhaps advising us that evidence of this route of transmission was not concusive and leaving us to make an informed decision ourselves based on the facts. It worries me when I think of others, including my partner, who unquestioningly treat every word from the medical profession as God's law.
You're right about not knowing what condition is causing what symptom, the hepc nurse described what I may experience on the treatment and to be honest I felt that I was already dealing with this, eg, fatigue, hair breaking off, irritability. I am praying that these will all go away after treatment.
I will take a look at Ron's forum thanks for the tip, but I will probably need a little time to get the hang of how these work, I'm still taking baby cyber steps.
Thanks for introducing me to your husband, and hope to hear from you again.
Good wishes
Miss Poppy

6:38 PM  
Blogger Sue, Toronto said...

Hi Miss Poppy,

I've had the test done for hiv (negative)and, if it's any comfort, it's considered pretty routine to test for when there's any history of potential blood/blood exposure. I'm immunized against hep B through work, but would certainly get tested here if I wasn't. They now immunize all of the kids here at around 11-12 years old for hep B in school, and then for meningitis at about 15. Do they do that there, too?

Not too surprising that you and your partner have different viral genotypes. You may have been exposed at completely different times. Very unlikely to be transferred during monogamous sex, according to my specialist - he's told us there's no need to bother to use condoms, even though my husband has tested negative.

We're the same age and I also included my perimenopausal status as one of the good reasons to get treatment happening, as there is reportedly better success rates in premenopausal women. Interestingly, the interferon seems to have completed the menopause deal - haven't had a period since starting treatment (hey, maybe there are some good things about this!).

I hope your nurse turns out to be okay - it's so important to have really good support for this journey. Thinking of you,

Sue

11:49 PM  
Blogger nick said...

Hi Misspoppy - just to let you know I have been looking at your blog.

We seem to have many common elements - both type 1b, both starting treatment at about the same time (though yours seems more certain than mine). We also seem to have worked in a similar line - I used to be a headteacher and now specialise in pupil motivation and behaviour management when training teachers! Maybe I'm the other side of the coin when dealling with challenging young people, though I hope not!

Anyway, I'll keep checking in and add your link to my blog.

Keep hanging in there!

10:39 AM  
Blogger misspoppy said...

Hi Sue,
Nice to hear from you again. It was encouraging to read your remarks about the end of your menapause. My menapause is a bit complicated by the fact I have endometriosis and I could start a separate blog on this condition alone.
Initially I was put on Feminax HRT, but the monthly bleed was causing severe pain. I am now on Livial HRT and this is a bit contraversial as its a no bleed option which you shouldn't really have unless you have been bleed free for a year. However because of the rotten symptoms I have, and other issues, my GP, but not my gyneacologist, agreed to prescribe this on the premise that she is treating my symptoms rather than prescribing for menopause.
I decided when I was told I could have HCV treatment that I would begin to reduce the HRT and possibly come off it before then. I thought if I'm going to feel like crap I might as well get it all over with in one go, and I didn't want to be confused further about what condition is creating what symptom. Further, I was getting concerned about increasing facial hair!!! Ha, I enjoy being a girl.
As I've been reducing hrt I've recently become extremely irritable, and it feels like the riba rage other bloggers describe.
So now I think I'll press on reducing for another month and if things don't improve, I'll get back on it fully before treatment in order not to make the ordeal any worse than it has to be.
It would be fantastic if I could have your result and thanks again for letting me know it is possible for this to happen.
Good wishes
Miss Poppy

11:50 AM  
Blogger lu said...

Hi MissPoppy
Have just found your blog - welcome to the community! Lots of things going on for you at the moment, and I think your decision to go ahead with testing is the right one. You would only worry if you didn't, and the chances are you will be negative. I have also had the HIV test and was -ve so I know what its like! Best to put your mind at rest tho. My nurse keeps trying to persuade me to have hepB vaccinations but I really don't want to at the same time as treatment. Maybe later.

Great news that your inflammation is only mild! That must be very reassuring and takes a lot of pressure off. It's so hard to know what are symptoms of hep c - everyone is so different.

I hope your plans for treatment go smoothly. It makes a big difference how the medical team are with you, and if they can be positive it really helps. I wasn't too sure about my nurse at first either, I think they must get a bit jaded sometimes. I tend to be up front with her and ask her if she can please try and share good news with me rather than, as you say 'the worst case scenario'. I think in some ways they are trying to protect patients but it really is counterproductive. We need to have some faith that this treatment will work! Fortunately, as I've got to know the nurse more I've developed a better relationship with her and feel much more comfortable going to hospital. So hang in there!

Please feel free to visit my blog, and I hope it's OK to put a link on mine to yours?

All the best

Lu
www.lusblogs.blogspot.com

12:23 PM  
Blogger misspoppy said...

Hi Nick,
I'm really glad you dropped by.
You are right in saying we have much in common, similar work, same genotype, and hey matching symptoms.
If I remember right you are having problems with your hands and shoulder, perhaps carpal tunnel. I too had mega problems with similar symptoms.
Before I worked with young people I was a remedial massage thearapist. At one point I was working as in-house therapist at a large publishing company, but I didn't last long. My job was to give 15 min neck and shoulder treatments to the copy takers in order to prevent them developing rsi, I'd never treated so many people without long breaks in between before. After only a few weeks my hands and wrists became very painful and remained so for a long time. I could not return to work and had to change may career.
I did not respond to physiotherapy, I did not get a name for the condition, it didn't quite fit into any of the usual ones, eg, they wouldn't say it was rsi because they claimed, at that time, you could only get this after doing the same movement for a couple of years and I had developed my symptoms after only weeks.
My hands have never fully recovered, although I can carry out tasks now without the condition flaring up but I have to take care. Personally I felt my symptoms had similarities to carpal tunnel, tenosynovitis and other like conditions. A few years later I developed tennis elbow, I was offered a steroid injection but refused for various reasons.
I constantly have aches and pains in my neck, shoulder, arms, wrists, hands, hip etc, which thankfully a lot of the time stay in the background. I was tested for the rheumatiod factor and it was positive but very slight.
I am hoping now that this is all due to the virus and there will be improvement post treatment.
To me it seems as if I have problems with inflammation attacking my joints and I feel this is an auto immune disorder.
I think I may post all my symptoms in my main blog sometime as it will be interesting to see what others share.
In the meantime I hope all goes well for you and you clear up the mystery of the extra rib.
Good wishes
Miss Poppy

12:35 PM  
Blogger misspoppy said...

Hi Lu,
Thank you for your supportive comments and welcoming me to the hepc blogging community.
I've rang the nurse today and asked her to proceed with the tests. A little hiccup though as she thinks they may not have enough of my blood stored as my consultant had said, so I may have to go in and give them more. I'll find out later. I get so sick of going to that hospital, I never seem to be away with one thing or another, but hey let's just get on with it.
I'm determined to have a good relationship with my nurse whether she likes it or not.
I know my consultant quite well as he's the same one who saved my life when I had Malaria. As I survived this against all odds I'm kind of a trophy for him and he likes to mention this. He's a consultant of infectious diseases, we don't have a heptologist at my hospital.
I will visit your site soon, and thankyou so much for putting a link to me on your site.
Good wishes
Miss Poppy

12:55 PM  
Blogger Ron Metcalfe said...

Hi MissPoppy

I read your blog yesterday – news travels fast in the HepC blogging community when there’s a new blogger coming online – so welcome. I suspect you will have more visitors soon.

I waited till today to write as I was so damned irritable yesterday (you can read about it on my blog – it’s at www.ronmetcalfe.com/blog).

I've also set up a Forum which you can access from my blog. There’s a ‘hover and click’ button near the top left hand corner called The ‘Hepatitis C’ Forum with a little red banner saying New on it. That will take you to the Forum where there are lots of discussion topics, conversations and information-sharing between people living with HepC.

By the way, on your problem of setting up Links, there are some Help pages for blogger.com at
http://help.blogger.com/

It sounds like you have been through an awful lot already – and proved you are a survivor. I like the part where you played off junior doctors to get the desired outcomes – which after all are only what you are entitled to, I might add.

Talk to you again soon. I’m off now to do a Link from my blog to yours.
All the best – and I wish you well on your journey.

Ron

1:02 PM  
Blogger Wendy said...

Hi Miss Poppy,
Thanks for visiting my blog and glad you found it useful. I am a bit late finding you as I have not been checking the blogs for a few days. I'll add a link from mine to yours now and look forward to visiting yours again soon to read all about you and your journey so far.
best wishes
Wendy

6:11 AM  
Blogger misspoppy said...

Hi Ron,
Thanks for all the helpful tips with the forum and creating links, I'll look into this soon.

I have read some of your blog, and found your last posting made me laugh out loud when I was feeling dreadful, so thanks for that. I did identify with the scenarios, I do crazy stuff like that all the time.
I approached a couple once in the car park of the local shopping centre. I demanded to know what they were doing in my car and what had they done with my bags from the boot. I was mortified when I noticed my car was actually parked 2 spaces away!
I'm looking forward to getting to know you better and believe laughter can sometimes be the best medicine.
Good wishes
Miss Poppy

4:59 PM  
Blogger misspoppy said...

Hi Wendy,
glad you found me and thank you for setting up the link.
I did indeed find your blog helpful, as I'm sure many others have.
Will visit you again soon.
Good wishes
Miss Poppy

5:03 PM  
Blogger misspoppy said...

Hi again Ron,

I think I got your blog mixed up with someone elses. Just went onto your site and noticed your recent posting about the air bubble. Sorry, I did not laugh at that. I was laughing about someone else taking stuff back to Holland and Barret!
Sorry about the confusion.
Good wishes
Miss Poppy

7:11 PM  

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