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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

Thursday, September 14, 2006

BLOOD CLOTS AND CONSULTANTS


I will tell you a little story regarding the mystery of the blood clotting issue mentioned in my last post.

I had my biopsy 5/6 years ago and was told all was well with just a little inflammation to my liver. However a couple of years after the biopsy, I found I kept getting splinter-like marks under my finger nails, they began to occur regularly every few months and eventually I began to investigate what they could be. I read that these splinters were in actual fact dried blood in the nail bed and could indicate endocarditis, (a serious heart condition), or blood clotting problems.

The next time I saw my consultant I mentioned the splinters to him. He, explained them as trauma to my nails caused by me knocking them. I didn't agree, I thought that if it had happened only once or twice perhaps this would have been a valid reason, but I was sure I wasn't knocking my nails any more than I had been doing the previous 40 odd years of my life. I said to my consultant that I thought it odd that this should happen so frequently now and asked did he not think they could be indicative of the blood clotting problems that I had read about.

He gave an exasperated sigh as he told me that no, they did not indicate clotting problems, and in his usual fashion dismissed me as a bit of a neurotic. I didn't argue, I just hoped he knew what he was talking about and I was of course glad that I didn't have blood clotting problems.

It surprises me now though, that out of the blue and in the midst of telling me he thought I might be showing signs of liver failure and it was perhaps time I went on the transplant list, that he also made the point of telling me that I had blood clotting problems and that they had discovered these problems at my last biopsy 5/6 years earlier and he further stated, that he had discussed this with me at the time!!! What utter nonsense, we have never had any such discussion!

He has never alerted me to the fact I had blood clotting problems and when I said this to him, he insisted he had told me. I left it there as I have been there before with this man on a classic, 'oh no it isn't'/'oh yes it is'. I wasn't feeling well and I was too shocked by the other stuff he was saying to challenge this almost throw away remark he had slipped in about blood clotting. It is only on reflection that I have had time to process all this stuff and consider the implications.

He advised me at that time that if I had any more migraines I was not to take paracetamol but aspirin instead. I presume he means I should use aspirin over paracetamol for any pain whether migraine or not. Presently I am too nervous to take any painkillers until all this has been clarified.

By now I just do not know what to think. If I had blood clotting problems since my biopsy, then why did he pooh pooh my suggestion about the cause of the splinters and not even allude to clotting problems when we had that conversation? Why has he never advised me before about taking aspirin instead of paracetamol. I wonder if any other medical personnel should have noticed this clotting problem, and if they did, should they have told me about it?

About 18 months ago I was admitted into hospital as a day patient to have a polyp removed from my womb. Would this blood clotting problem have been brought to my attention then, or indeed at any other surgical procedure I have had over the years?
I wonder is my consultant correct to advise me to use aspirin, I heard you shouldn't use aspirin if your blood doesn't clot well? And what exactly is the nature of the blood clotting problem I have, does my blood clot too much or too little? My mum has had 2 DVT's, so I suppose I could be quite a high risk in that respect, I wonder if I should be actively doing anything or avoiding anything?

So I am left with more questions than answers and a sinking feeling about discussing anything that he has said directly with the man himself. I don't think he knows his head from his a**e and that is quite comforting in some way considering what he is trying to sell me now, liver failure and a transplant!

I am still awaiting my appointment with the liver specialist which I am advised, after calling them today, that I should recieve quite soon, possibly October. In the meantime I am feeling not so bad at all, which is very nice indeed. I just hope this liver specialist is not going to see me and then send me back to my consultant.

I feel that I am finally coming out of the depression caused by the combination therapy, which is about right because I have now got an appointment to be assessed by the mental health team at my local hospital. Because I am feeling so much stronger mentally, I feel have got a much clearer picture about what has been happening to me the last 12 months, and I have certainly been in a bleak depression, exacerbated by the lack of coordinated care by the medics, from my consultant who told me I wasn't depressed despite the fact I would break down crying at the drop of a hat, to the specialist nurse who said she could offer me no support as my medication had been stopped, to my gp who said she had not met anyone who had such a reaction to the meds and admitted she didn't know what to do, to the counsellor who I waited 3 months to see, who after 2 sessions went off sick long term and I never got a replacement to this day, still waiting......

In real terms I got zilch in respect of support to manage the after effects of treatment, not even an acknowledgement that that was in actual fact what was wrong with me. I am not alone in this lack of support, that's the situation for many in Hep C land. The good news is, I am finally beginning to get over it.

After my last appointment with my consultant when he said he thought I should see a psychiatrist, I then went to see my semi locum gp Dr Z suffering shock from being told I have possible liver failure and it might be time to put me on the transplant list. Dr Z said I should go to see the mental health team as I was sinking further into depression with the news, and if I did have to undergo liver transplant I would need support, and further, that these people could prescribe a wider range of antidepressants than a gp and as I had had a bad reaction to these in the past they may be the best people to prescribe. So in the spirit of compliance I agreed to go.

Another train of thought that was developing as my mental health was returning was that, if I have a liver biopsy through this new shiney liver specialist, and if the biopsy shows increased liver damage, and if the specialist doesn't think treatment may kill me, then it might be prudent to be on board with the guys who can monitor and advise me with the correct/best anti anxiety anti depressants to use at that time, and if I take up treatment again Iam certain I would need these pills in my system well before I start. I really do not intend to start on any antidepressants just now, not as my mood is definately lifting recently.

I do have just one more little niggle going on in my mind, and its the letter my consultant wrote to the liver specialist, at one point he says, '..... Under the circumstances, I would be grateful if you could review her query biopsy, query referral to Leeds for possible transplantation, depending on your thoughts. ....... ' Now I don't know about you, but to me that reads as if it is me who is querying biopsy and transplant. Probably just medical speak, but he is such a slippery git, imho, that I wonder what he is up to.

The only time I queried a biopsy was last year when he told me he wouldn't give me treatment because it would kill me, I asked if he wouldn't do a biopsy to ensure the damage to my liver hadn't progressed. He said, 'What is the point of knowing you have liver damage when you can't have the treatment?' I rightly or wrongly reminded him at that point that I had genotype 1b and he should be aware that that strain of HVC can cause liver cancer without the intermediate cirrhosis. His reply was, 'even if you had cancer I would not give you treatment'! Of course I was very ill from the combination therapy and I was alone when he said all this.

So I wait until October for my appointment with the liver specialist. The appointments coordinator said there was a note attached to my file from the specialist to say I was to be seen in 2 months, I pointed out it had already been over 3 months, she said there was nothing she could do but wait for the extra clinics being put on in October. In my favour, she said on a list of 50 people I was about 5th, therefore I should hear something soon.

In the meantime I am going to Marbella 25 September with girlfriends for a week. I return UK 3 Oct catch my breath then fly to Prague with my other half for 4 days. We are meeting up with an old housemate Stanislava who uded to live with us a few years back and her Partner Marek, who have kindly offered to show us the sights, so I am looking forward to that.

We return UK on 10 October and I see the mental health team 11 October. I must say it makes me giggle everytime I say mental health team or that I am having a mental health assessment. Perhaps this means that I have finally gone mad.

Hope all is well as can be for all those battling with HCV and for all those supporting them.

9 Comments:

Blogger Jason Paul Tolmie said...

Hey Miss Poppy,

Nice to see you back.
I think you are absolutely right what you said in your post!
You have/are going through it alright. And you have had some right suss docs in the past! It really looks like you are on the right path now. Stay strong, as i know you will!

Have a great holiday/s.

Jason

10:47 AM  
Blogger misspoppy said...

Great to hear from you Jason, Probably would make a good comedy sketch for the League of Gentlemen with the suss doctors ;-)
Thanks for your most welcome encouragement.
Good wishes x

3:37 PM  
Blogger Jason Paul Tolmie said...

It sounds wonderful up there. I have never seen a frog that small! How on earth did you even see it? I recently had a similar experience with a snail. It was the smallest cutest thing i have ever seen! I was unfolding my OS map back at home and out dropped this snail. It was 4mm long! I must of picked it up on a mountain bike ride around Leith Hill in Surrey the day before. I couldn't believe it when he popped his head out. I kept it for a week. I knew i shouldn't, but just could not part with him. I put him in my mums garden to live properly. It was quite emotional in a funny kind of way:)

Have a great holiday:)

Jason

10:41 AM  
Blogger misspoppy said...

Hi Jason
I have sent you an email with some photos:-)
Best
Miss Poppy

12:02 PM  
Anonymous Anonymous said...

drop that consultant! drop him like a dull piece of rock that he his! You are Not neurotic!!! I just hope the liver specialist is more helpful!! I too got the run-around by the medical profession... either they didn't want to deal with the bad news of hep C or they just didn't give the time. But (after months of extra turmoil) I changed docs and it has turned out wonderfully! Stay courageous!!!

I'm at 26 weeks of treatment and counting. -Ample

12:21 PM  
Blogger misspoppy said...

Hey Ample
You're The Girl with the Hep C Eyes, so nice to meet you, I have been reading your blog too, found it via Jason's.
Yes I am dropping that consultant like a hot brick and I have been advised today by the Hep C Trust, a uk support group, that I shouldn't be referred back to him after I have seen the liver specialist. Hurray!
Still waiting for the appointment though, chased them up today and they said they would let me know as soon as the specialist gets her extra clinics up and running for her overspill of new patients.
Thanks for your comments, I hope the headaches are no more for you and well done with the 26 weeks, you've passed the half way mark :-)I will catch up with you again when I get back from Prague.
Good wishes
Miss Poppy

8:51 PM  
Anonymous Anonymous said...

Very very glad to hear about dropping the consultant! I hope your travels go well.

Thanks for visiting my site.
-Ample

10:35 PM  
Anonymous Anonymous said...

In the US, once a doctor writes something in your file, it's like the word of God. I got a copy of my last check-up report from my G.P. - he didn't ask me half the questions he said he did, regarding smoking, caffeine, etc. He didn't list 2 of the medicines I was taking. But, doctors are Gods, don't you know. If they say it happened, it happened.
Keep fighting the good fight.
uncertain

9:52 PM  
Blogger zercath said...

zercath

8:47 PM  

Post a Comment

<< Home