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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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, June 12, 2006

SHELL SHOCKED

I am in shock. I have not been feeling so well, but my consultant has always maintained my symptoms were not hep c related. I have recently come to the conclusion I may have Myalgic Encephalitis, Chronic Fatigue Syndrome or something like that, its diffcult to get a diagnosis.

The last time I saw my consultant was in February before my thailand holiday when he had told me that my viral load had escalated to 4-5million and he wanted me to have a quantiative pcr test in May to ascertain whether the high VL had dropped or at least levelled off. He said if it was rising he would be considering putting me back on treatment which was a total about turn from his previous claims that treatment would kill me.

I decided I would just go along with whatever he suggested and get the results and then change my consultant whenever I felt up to it. Today I went back to the hospital for the blood test results. I rang my consultants secretary first to ensure the results were back as I felt very poorly and didn't want to go to the hospital if they had not come back. The secretary assured me they were back but I would have to speak with my consultant for the results.

Recently my symptoms have flared up, and today I got up feeling like I had a hangover, this happened last week too and after 2 days of it I got a classic migraine on the 3rd day. I have been very tired and lacking in concentration and generally unwell.

When I got to my appointment I explained my symptoms, I'd brought a list as I always struggle to get him to listen.

Very fatigued.
Waking up with hangovers, which were very severe last week making me feel like my brain was swollen.
Having strange turns if I do normal amounts of activities.
Classic migraine last week.
Exercise intolerance, if I use a part it hurts.
Muscles feel like lead, don't feel I recharge properly after rest.
Joints playing up, neck, wrists, hip, shoulder, ankle, knee.
disturbed nerve pathway sensations.
Poor memory.
Lack of concentration.
Difficulty word finding.

I managed to tell him most of the symptoms, apart from the last one or two. He asked me what I took for migraine, I explained I only got them once every few years so I just had paracetamol to hand. He suggested I didn't take paracetamol anymore, that I'd be better with aspirin because of my liver. I was puzzled as I thought we were supposed to stick with paracetamol.

Anyway all those thoughts went out the window when he told me that the blood test hadn't been carried out as the blood was no good as it had clotted. He says it sometimes happens especially if they have had difficulty getting the blood, and the blood nurse had struggled taking my blood that day.

Then he sent me into mega shock when he said I have decided to refer you to a liver specialist at another hospital as it may be time we put you on the TRANSPLANT LIST!!!!!! WHAT????!!!!!

'It can't be true, it can't be true,' I cried. I admit I reacted badly, I saw this death sentance being passed, I turned to my friend and took hold of her hands, I couldn't look at my consultant. 'Tell me what this man is saying isn't true' I cried. 'How can you say that' I then said to my consultant, 'you have insisted there is nothing wrong with me, I have even been to see a neurologist because you have maintained my symptoms were not related to hep c!'.
'I'm telling you from what you are describing today and the increased spider nevi on your hands and palms.' He said.
'But I've always had those, I've shown them to you before and you weren't interested, and you've dismissed my other symptoms before.' I said.

Oh you know what I can't be bothered to go thru the whole nasty exchange, but then he decided to inform me, whilst I was visibly shaken and crying, that because last time they did a biopsy they had problems with my blood clotting, this new specialist would probably use a new procedure where they cut my neck and go in from there! I was horrified, 'You have never mentioned problems with my blood clotting before' I said, even before I was put on tx when he was suggesting another biopsy he had never made mention of any special problems, neither had any comment been made after my last biopsy.

Mostly I couldn't believe this man wanted to describe a horrid procedure that he was not going to be involved with, and would be the responsibility of another consultant, when he had already given me shocking news. I thought he was cruel, that news could surely have waited?

He argued the toss, I couldn't believe this man felt that he would give me a graphic account of how they would take a liver biopsy from my neck when I was so distressed and trying to understand how an appointment for bloodtest results could end up as a place on the transplant list and a possible death sentance.

He argued about everything I said, I tried to make sense of how he could have been dismissing me for so long then right out of the blue come up with this. I kept repeating, 'How can you say this?' I saw him roll his eyes at his assistant and she sort of shrugged. I wondered how others took this sort of news after years of being told there was nothing wrong, only minimal liver damage, go away and forget everything, you think too much.

I am glad I am going to be seen by another consultant, I was going to request this anyway he just got there first, but I believe he is trying desperately to do a character assasination on me. I even wonder if he has purposely tried to freak me out so he can discredit me as mentally unstable. We had a lot of words about the letters he had written to my gp etc, when I tried to speak he tied me in knots, I insisted that as I was not well and with brainfog and the symptoms I had described it was not the best time for him to be verbally sparring with me.

He made a remark about all the other consultants I have seen, I reminded him that I had seen a gyneacologist for endometriosis and and endocrinologist for my low thyroid that is all apart from the consultants I saw in his absence when tx went pear shaped, and the nuerologist who I went to see because he himself had dismissed my symptoms as unrelated to HCV. In the course of that exchange I mentioned that the nuerologist had asked me if I would like him to refer me to a psychiatrist as he could find no hard evidence of nuerological problems, and I had refused. My consultant was a quick as anything in saying that he too thought I needed a psychiatrist. He then went on to say that in fact it would be crucial as to whether I would get a transplant because they would have to assess whether I was mentally stable to recieve a liver transplant.........

So he is stitching me up. I am not mentally unbalanced. I will not see him again, but I feel he will have a field day with what happened to day. I believe he was inciting a dramatic reaction. Who, with any sensitivity would proceed to unnecessarily, graphically describe the biopsy from the neck procedure to someone reeling in shock? I cannot see him again, if I do need a liver transplant he will undermine me.

I wonder, because he surely knows by now that I have received copies of all my medical records, whether he suspected I may be making a complaint about him. Making complaints has not been on the agenda, I haven't got the energy or clarity of mind, I just wanted to understand what has been going on and I suspected my consultant was undermining me, I was correct in that respect. I am wondering whether he just wanted to get rid of me and wanted to discredit me so he could build up a defence should I have complained.

I reacted so badly because he has been insisting for so long that there was nothing wrong with me, I have felt like a nuisance. When I got my medical records from the hospital, (I wrote about getting my records in another post), I was upset to read what he had said in one letter to my GP, 'This lady is looking for an illness, sorry I cannot oblige.' He not only dismissed my symptoms, his remarks encouraged others to do so too. This man told me when I was poorly from the treatment experience that he would never give me a biopsy, he claimed that because he would never give me treatment again there was no point in knowing if I had liver damage. How come now, he thinks it might be time I went on the transplant list? I have the same stuff going on, just a bit more frequent.

It's a bit like my gp saying I had a sore throat when I was dying with malaria. There must be something about me that makes medics think I am exagerating my symptoms or making them up.

He called the bloods nurse in to take fresh blood, I will get the results on Thursday. I called my consultant's secretary later and asked for copies of any letters he may write to my gp or the liver specialist.

When I see the new liver specialist I will not be carrying the baggage from this consultant, I want to ensure we have a mutually trusting and respectful relationship which is how it should have always been.

9 Comments:

Blogger carol said...

Hello Poppy,

No wonder you are shell shocked, I am as well. You will be well rid of this man and the sooner the better. (Think we've been here before?)
I won't swear but you can imagine some of the words I'm sitting here saying! (and Martin is out loud!)
Take care and good luck, hopefully the new one will know what he is talking about.
Carol

7:47 PM  
Blogger Seadragon Lady said...

Hello Poppy
A few extra thoughts after reading the full story. Speak to Julian at the Hep C ask if he can advocate on your behalf regarding the sub standard Tx you have received at the hospital. I'm sure he will be of assistance and if not there is bound to be someone he can recommend.
As to your health problems. My brain fog has been improved by encouraging more frequent bowel movements. My doctor bless him is good and he suggested this. I refrain from medical means and use more gentle natural methods to achieve several toilet visits throughout. A nuisance but it has been beneficial. By the way if your blood is clotting in the test tube it sounds a little odd to me. Not clotting is my problem which I think is more usual with our HCV. But Docmike or proper medical advice should be obtained for that one. I'd go with the private consultation to put your mind at rest. After his attitude I would also be inclined to make your PCT pay for it.

10:57 AM  
Blogger nick said...

Hi Miss Poppy

Just to say, once again, I'm finding common ground between our experiences. The symptoms are very familiar - in fact, tx also gives me these, but I think that now I am on treatment, I am psychologically stronger, because there is light at the end of the tunnel. Pre-treatment, they were very debilitating and left me feeling there was no hope - especially with a consultant who had no idea what he was doing. At one point, I arranged a meeting with the hospital PALS service with my consultant. Oddly, what really upset the consultant was when I noted 'stitched up' on a piece of paper. Exactly what you're feeling! I suspect that this wasn't personal, but to do with either finance or his personal prejudices about either tx or hep C. It became personal when I challenged him! Certainly everything possible was done to put me off tx - plenty of 'scare stories' from nurse and doctor.

As you know, my situation is very different now!

Oh - I should mention that ME and CFS were frequently 'diagnosed' - but in fact it was all down to Hep C!

The clotting problems may be a result of low platelets - it's worth checking your last bloods to find out. My platelets have been low for years, and for my biopsy (and recent appendectomy), I had a supply of platelets run into my body through a drip. No talk of going through the neck, though I have heard of this.

That brings me to the suggestion that you take aspirin. First, aspirin thins blood (hence some take it to avoid DVT on long flights) , so if you have low platelets it won't help. Second, it is discouraged as it can impact on the digestive system - and is generally worse for the liver. In fact, paracetamol carries a warning to people with liver conditions, but my nurse has advised me that there will be no problems provided I stick to the dose.

Of course, a pain management clinic may help with other types of pain killer on prescription. I recently had Tramadol, but it made me so ill I vowed never to touch them again. Alternatives are available though - even your GP may be able to help.

Anyway, take care - and good luck

Nick

11:01 AM  
Blogger Denise said...

Good luck, Poppy! My ex fil just had a liver transplant yesterday, if you do end up needing one, it is frightening.

(I just blogged about transplants on blogher and linked to you: http://blogher.org/node/6690)

6:07 PM  
Blogger Paul said...

Having met your consultant, Poppy, I agree that he would probably be covering his tracks. Try and forget him and let this go and get on with your new consultant. He has got to be better than this guy. No one should make damning statements like that without the evidence of a biopsy.
Paul.

5:19 PM  
Blogger ijaz ahmad said...

Hi Miss Poppy,

in fact that was a crrazy , shockink news by a responsible consultant.i hope you get sensible person this time.

with best wishes,
Ijaz

10:16 AM  
Blogger topcat590 said...

Hello Poppy

I have been diagnosed with my liver problems now for 3 years and it has been a bumpy road sometimes.

I also have to have my biopsy's done through the neck due to blood clotting considerations fortunately I am one of those who is facinated by what the medics do to me so was fortunate to be facing the screen they use to feed the gubbins into you and was able to watch it all so I did not have time to fear or be upset by it all.

Take good care of yourself and good luck for the future.

Terry

10:01 AM  
Blogger misspoppy said...

Thank you everyone for your kind and supportive comments.
I have just put all this to the back of my mind until the appointment for the specialist comes through. I'm swearing a lot too Carol and in between I am praying this consultant of mine is wrong about everything.
Sally/Nick I will not ask my consultant anything more about my bloods, I am not sure, perhaps when he said I had clotting problems he meant the problem was my blood didn't clot.
There was much confusion when later his nurse rang me to tell me they did have the result for my viral load as that blood sample wasn't spoilt apparently. However she couldn't tell me what the result was (!) and advised me to ring the secretary. I rang the secretary who told me she had no recent viral load blood test results. A few days later I rang to see if I could get this issue clarified, but had no luck. Eventually a letter came from my consultant, the opening line was, 'due to your many telephone requests.......'.
He always appears to be asserting that I am a nuisance, which is very unfair. The viral load had not come down and was still over 5 million.
I have not touched an asprin or paracetamol since I saw him, I have had a bad bout of sinusitis though and would have appreciated some relief. I would not pester this man for clarification it is clear he doesn't wish to be questioned.
I am just waiting, as Ijaz suggests, for a more sensible person next time.
I am glad you met my consultant Paul, it helps that someone else heard him say hep c has no symptoms.
I hope your ex is recovering well from his liver biopsy Denise adn thanks for the link to your blog.
Ooh Terry I'm not sure if I fancy watching the camera, but glad to hear this helped you along. Hope you are feeling well presently.
Thanks again everyone, it really does help to read your comments.
Best wishes
Miss Poppy

Ps Brian if you happen to read this. I was very pleased to get your email and tried to reply to both addresses. However the emails were returned both times. I would be happy if you would contact me again. Thanks Poppy

4:45 PM  
Blogger purpleswallow said...

Hiya Poppy.
after we talked today I just had to see your blog. Oh honey, this man appears to be a nightmare. I trust you will find R.H. a refreshing change, to the point, matter of fact but supportive (in my experience).
It tickled me that your all knowing ex consultant would suggest aspirin to someone with clotting problems?
Just put all this behind you now, Poppy. You being referred to the MRI is good, they have a good system there.
Liliana

3:52 PM  

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