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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

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.

ANY ADVICE PLEASE
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.

10 Comments:

Blogger nick said...

Holiday sounds idyllic, Misspoppy - Pendle witch country eh? Maybe a few enchantments or using the natural bounties of Mother Earth might help the Hep C! Who knows, in this weather, dancing round the ancient oak at midnight might be beneficial! Oddly, I am currently feeling a yearning to visit some of my local pagan sites - Arbor Low stone circle, nine ladies etc. I think it's one of those 'back to primeval roots' feelings. I'll become a hunter/gatherer next!

In terms of questions, NICE guidelines suggest information for patients, and may be worth checking. Off the top of my head, I think you should know: genotype, viral load, extent of liver damage, medications, possible side effects and how to manage them, contacts for support (yourself and D) and how tx may interact with any other current medication.

You probably know most of that information already, but it's useful to have a written 'tick list' when you arrive.

Hope that helps.

6:01 PM  
Blogger MartinB said...

Hi Miss Poppy,
Test results you need to ask:-
Viral Load, ALT, AST, Haemoglobin, Platelets, White cell count and neutrophils, all at start of treatment. These give you baseline values, and should be tested for at start of treatment. Most results are available within 2 days, except viral load which can take 2 weeks.
Don't be afraid to delay treatment start for a week if you are not happy that your current infection has been cleared up.
Good luck, and best wishes for low side effects!
Martin

7:26 PM  
Blogger Kerry Grace said...

Ask your nurse, but by my experience it's impossible to tell how "well" your liver is doing during treatment as far as predicting long term prognosis, why give yourself something extra to worry about. Unless there is cirrhosis, the liver recovers just fine. If there is cirrhosis... well...that's a horse of a different color, as they say around here, and I'd assume you'd know all about Liver Function Tests. It is the blood counts which are important to monitor so that you can adjust your activity and diet accordingly and pay better attention to symptoms (for example, shortness of breath may be expected or concerning depending on how aenemic). We kept a close eye on potassium and kidney function (BUN and creatinin)as combo dehydrates you and when your body is under tx, dehydration can be a bit risky, but it is so easily fixed.

8:23 PM  
Blogger misspoppy said...

Hi Nick, Martin and Kerry Grace,
Thank you all for your kind advice, I will take it all on board and make a tick list to take to hospital.
I'm not sure I could delay treatment for a week, as I am informed by my nurse that they only begin new tx programmes on the 1st Thursday in the month, so delaying may cost me a month.
Hopefully this will not be necessary, the antibiotics will hopefully do the trick.
I have rang my nurse, but she is on leave until 1st Aug, the secretary cannot find my details for tx on record! I've asked the secretary to look into it and to ensure all details are updated.
I am informed tho' that I will not be staying overnight, so that's useful to know.
Thanks again for your support, and I will pay attention to my water consumption during tx.
Good wishes
Miss Poppy

3:10 PM  
Blogger lu said...

Hi Miss Poppy
Your holiday does sound lovely - and I'm sure next year you will find it even better! Will you plan it for after finishing treatment? Sounds just the thing - not too far to travel and lots of warmth and companionship.
Hope your trip to hospital goes well, it will be good to get things under way. Keep us in touch with how things are going.
All the best
Lu

12:20 PM  
Blogger Sue, Toronto said...

Hi Miss Poppy,

What a lovely holiday in such an idyllic setting! Sounds absolutely beautiful.

I am in agreement with Martin on tests - alt, ast, hemoglobin, rbc, neutrophils, wbc are the standards and the ones I expected to get results on post blood testing. Other tests (other than cbc/lft tests above), that my physician ran periodically included thyroid hormones (T3,T4) and postassium levels (with regard to hydration), as well as some renal function tests. Beyond the blood tests, I was required pre and through treatment to complete psychological questionnaires, which I believe is a good thing.

Sending all positive thoughts your way for your upcoming treatment.

Sue

2:20 PM  
Blogger misspoppy said...

Hi Lu,
Thanks for your kind thoughts.
Yes we will plan the barn for the end of tx next year, something nice to look forward to.
Things will get underway for me this Thursday......
I hope all is well for you as you edge ever closer to the final stages of your tx, and that you are still able to do some pottering about in the old vegetable patch.
All the best
Miss Poppy

Hi Sue,
The holiday was idyllic, we were overjoyed when we discovered this perfect spot a few years ago.
Thanks for the test information. It can get a bit mind boggling ensuring you are equipped with the necessary knowledge. I know Paul had a wrong test caried out at the beginning of his tx and then had to wait 6mths to find if his tx was working.
After my HIV farce and other stuff, its hard to just relax and trust things are being done properly, but I will try.
I hope you continue to enjoy your post tx status, and have a wonderful time at the cottage.
Good wishes
Miss Poppy

4:52 PM  
Blogger Ron Metcalfe said...

This comment has been removed by a blog administrator.

11:14 AM  
Blogger Ron Metcalfe said...

(deleted last copy of comment as web link info too long & didn't appear correctly)

Hi Miss Poppy
Looks like you have already had some excellent advice for your hospital tick list. Although you won't have all that information sorted out in the first visit, your nurse will know you are interested in 'taking charge' of your own health and hopefully work with you on this basis.

For a bit of a smile about the first hospital visit, read my blog entry about my experience. It's on my blog - click on Archives November 2004 - then look for "Week 0 - Monday, The Big Day" Nov 8th. (tried to post a hyperlink but it was too long for blogger.com & the info disappeared)

Wishing you well as you begin your treatment journey and sending you every good wish for a successful outcome to treatment.

Ron

11:23 AM  
Blogger misspoppy said...

Hi Ron,
Thanks for your good wishes.
I read the entry of your first day, it seemed to go not too badly.
I've just got back from hospital, and feel not so bad myself, but did have a little moment with my nurse, which I'm going to write up in my next post.
Good wishes
Miss Poppy

12:56 PM  

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