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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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, July 25, 2005

Carry on Camping

(Please skip the first few paragraphs if you are not interested in my camping weekend, but please read the last paragraphs concerning my imminent tx. I would appreciate any tips that anyone may have that will enable me to ask the right questions when I go to hospital.)

We had a lovely camping weekend at a camping barn in a beautiful little village , about 3 miles from Clitheroe. The village itself has won many awards for the most beautiful village in England, they have no satelite tv masts or double yellow parking lines, and because of this, the village features in many tv period dramas etc.
We hire this barn every year, it is very basic with a bare attic upstairs for you to lay down sleeping mats, there is only a calor gas supply so lighting is by gas lanterns, and there is a 2 ring camping stove. Recently they installed a boiler so we now have hot water and a hot shower. Downstairs there are work surfaces for preparing food, a sink, and a large wooden table with wooden benches to sit on. My partner D and I take our tent and pitch it in the field beside the barn.
The barn stands alone in a field with wonderful veiws in every direction and is just off a country track, so no traffic noise! Also no nosy neighbours and a designated space for a rather large bomfire. This is Pendle witch country, steeped in history, especially with regard Lancashire witches who were mercilessly hung in droves a few hundred years ago.
We were blessed with good weather and very pleasant company. We found more improvements had been carried out at the barn since we were last there, with the addition of a new picnic table and benches outside, and an impressive gas bbq cooker, which was nice. D and I also took the gazebo, which although wasn't necessary as it didn't rain, looked very nice over the picnic table. After the initial work of setting up tents etc., we chilled on Friday by the camp fire and just welcomed everyone as they arrived.
On Saturday morning my sister went to Clitheroe market to buy our groceries for the bbq, after that she and everyone else went off for walks, 7 of them walked up Pendle Hill that afternoon. D and I stayed behind at the barn for a bit on Saturday, mostly due to the fact that I had developed a nasty throat, chest infection before we'd set off. I had managed to get some antibiotics from my gp on Friday afternoon and took 2 together as directed when I got them. Unfortunately they made me very nauseous and I had to lie down, but not for long, as the next thing I knew I was rushing to the loo with projectile vomit going all over the landing and bathroom floor before I got to the loo! Just my luck. So I was still quite fragile on the Saturday, but later after a few paracetamol D and I decided to have a little stroll up Pendle, and take a picnic to a very beautiful spot I'd found on a previous year.
Of course we didn't follow the map very well, it was a bit ambiguous, we turned up the ascent too early and found ourselves almost at the summit before we realised we had not passed the picnic spot. We were both very hungry so we stopped at the spot where we were, which was stunning with spectacular veiws over the villages and lakes, and had our butties.
After lunch we decided to turn around and descend to the village of Barley, although we were very close to the top of Pendle, it was a very steep ascent and we were feeling lulled into nap mode after our lunch, with me not being very well, and D's leg being rather on the large side, he has some circulation problem that is as yet unresolved. So it was back to the barn to meet more friends, who arrived whilst we were all out, and to prepare our bomfire and feast for the evening.
More paracetamol for me and a little snooze for both D and I before the others returned from their rambles.
The party went ahead in the evening with the usual charades and ghost stories and singing. We were blessed again with a glorious sunset and the appearance of a spectacular moon, only slightly on the wane.
Sunday, we all just chilled again, stoked up the fire from the night before and cooked fresh trout in foil for breakfast in the embers. Slowly we all began to pack up, a little at a time, we finally left the barn around 4pm.
Well another years camp over, it was excellent, apart from the health hiccups. Hopefully next year we'll both be fit and well to enjoy it to the max.

I'm just taking it easy today, catching up on sleep and rest. Tomorrow I take a group of young people to Blackpool, so I need my wits about me for that. I'm taking time off work after that, I will go into the office to tie up loose ends but no face to face work with the kids. I need to just slow down and get rid of this infection before 4 August when I begin treatment.
I am going to call my nurse this week to clarify details, apparently I will not get a letter, I just turn up on Aug 4 either 9.30 or 10.30am. I'm still unsure whether I will stay overnight or not. All I know is that they will be monitoring my thyroid closely as it is under active, and that they will carry out the HIV and Hep B tests when I arrive at the hospital.
I would really appreciate any tips on what blood test results I should ask to be kept informed of at the beginning and during treatment in order to monitor my progress. Thanks in advance for that.

Friday, July 15, 2005

Keeping Busy.....

Well I can't say the good effects of the holiday lasted very long, I've not been feeling too great. I realise I may have been a bit premature in my thinking with regards the HRT. I've had insomnia this week, a lot of liver pain, a bit of a vague chest infection, lacking in any motivation whatsoever and sadly, a friend of ours died too. As there is so much going on for me right now, I cannot be sure if the insomnia is because of the HRT or not, I'll give it another week, if things deteriorate further I may consider jumping back on the HRT programme until treatment ends.

For those who may be interested I was taking Livial HRT, this type does not contain any actual hormones, it contains a substance which the body breaks down to produce hormones.

In terms of the virus, after reading many blogs and information sites, the full implications of having genotype 1b have hit home. Bummer. I find I can identify my physical, emotional and mental state with those who are already on tx, and that is a bit unnerving.

I have also set myself up a bit in terms of work. I wanted to have my summer activity programme organised before I go off for treatment, and I have done this mostly, but because I've not been too well, I find I've got behind with a few details and I've been very forgetful. I now feel I am under pressure to tie up a lot of loose ends, and I'm coming to realise that maybe I shouldn't work at all the week I go into hospital, which means finding cover, and even less time to tie up loose ends.

My nurse called me to ask if I knew my weight so she could write the prescription for my treatment, I am 53 kgs, so believe I will be on a lower dose of the stuff.

One of the fun things I did this week was to go to see Snoop Dogg with a couple of our friends, I had booked this in the after holiday euphoria. I'm not really a big hip hop fan but I do like a bit of this stuff. I did enjoy dressing up, and our friends picked us up in their mercedes convertable, so we made a proper gangster rap style entrance.

I'd forgotten that main acts don't come on stage until quite late, we got there at 7.30pm but Snoop didn't appear until after 9.30pm! I have to admit I was yawning a bit by then. I'm not so keen on all the American chanting stuff - everybody in the house say bow, wow, wow, - but hey I'm just like that.

Today one my partner's brothers is coming up from London to stay overnight. He's coming to say farewell for a while as he and his wife are going to India next week. They have a lovely life, spending half the year in India, tucked away in the himalaya with a yoga master and the other half in Thailand where the wife teaches yoga and he teaches diving.

There is another brother, who also teaches diving in Koh Samui, he's been in uk for a year and has decided to go back, he too leaves next week with his wife and son. So its hello goodbye weekend as they will visit us too.

Well they may all be going to the far east, but next week, we and some friends are going on our annual camping barn weekend to Clitheroe! Actually we stay in a beautiful village outside Clitheroe and it is lovely, far away from busy roads, with walks from the door, beautiful scenery in all directions, including uninterupted veiws of Pendle Hill.

We usually do this in August, but I have brought it forward this year because of the tx. One of the things I most enjoy about these weekends is the fact we can build a bomfire in the field outside the barn, its great sitting around the fire. We have a bbq on the Saturday night too. I just hope it doesn't rain, we have got some canopies though if this does happen.

I finally worked out how to access the forum Ron, it is really interesting, I've had some very touching personal messages from there too, and it appears I really helped someone. How cool is that.

Some of you may have noticed I tried to set up links to other blogs, for some reason I can't work out how to get these in the side bar. I think may be because this computer is only windows 95, it may restrict me accessing some of the features. I'll still keep working on it however, but for now the links page has gone back to draft.

One of my best friends is getting married in Ibiza on 1st October, I'm a little concerned about how I might be. I will be on week 8 of tx by then and I don't feel confident to go ahead and book a flight or anything. I remember Tink had a bit of a problem with blood counts one time when she was about to go on holiday. I suppose I will just have to wait and see. My friend asked me to be maid of honour, I've explained to her that she may not be able to rely on me to take much on in the way of duties, but she says she just wants me to be there, as I do myself.

I slept last night, so I feel a little more balanced today. I'm going to get myself washed and brushed up before our guests arrive, oops, too late, they are at the door.

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.