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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

Tuesday, January 31, 2006

Letter from my Consultant

This is the copy of the letter from my consultant. I have numbered the paragraphs for ease of reference. As a result of reading this letter I have written to my hospital and requested to see my health records. I am awaiting an appointment to view.

I have an appointment with my consultant on 6 Feb, it may well be my last one.

Here goes......

21 September 2005

Dear Dr Z

1/ Further to the long and detailed letter from my Registrar Dr Racheal when Poppy was seen on 5 September, Ms Poppy came to my clinic and asked to see the Registrar. Unfortunately the Registrar was on holiday so she did see me.

2/ Mrs Poppy has been to see a lot of people in this hospital, not necessarily in my clinic as she has been referred to the Cardiologist and the Endocrinologist and to the best of my knowledge she has seen 3 other consultants in the last 12 months, all of whom have written to the practise.

3/ Mrs Poppy comes to see me because when she was in with severe malaria and, I remember her very well as I did the exchange transfusion which took all night on 24 November 2000, during her recovery phase we discovered she had hepatitis C.

4/ She has had a biopsy which is not particularly bad with an Ishak score of 3/18 and 1/6. Unfortunately she has had a very unpleasant reaction to the Interferon and Ribavirin which has been explained to her on several occasions. I have no doubt whatsoever that her main problem is that she can't understand that her hepatitis C is not serious and that there is no significant alternative treatment available at the moment.

5/ I had an extremely long talk with her and hopefully she now understands. She has not had conflicting consultations, she has consultations with a number of Consultants as well as Registrars and the opinion has been the same on all occasions.

6/ For the sake of completeness, the x-ray of her cervical spine showed minimal wear and tear only. I gave her a prescription for a soft collar which I suggested she should try wearing at night which might help. Her last set of liver function tests were completely normal with an ALT of 34 and a gamma GT of 28 so I will be reviewing her in the New Year with blood tests at that time.

Yours sincerely
EM Blahblah FRCP
Consultant Physician

This is my response to that letter.

1/ After reading this I asked at my surgery to see the long and detailed letter from Doc Racheal that Blahblah refers to, the receptionist told me they had never received this letter, she thinks my consultant must be referring to a letter he has received from the Registrar himself that has not been forwarded to the surgery. You clever readers may have realised this already, but it was a bit confusing for moi.

My Consultant is not quite correct when he says I asked to see the Registrar, Doc Racheal on 5 September. I am presuming he makes this comment as my locum GP, Dr. Z, was writing to request that he see me personally.

What actually happened was that on 5 September I attended his clinic for an appointment that had already been made for me to see Doc Racheal. If you have been following my blog you may remember that 2 weeks earlier Doc Racheal had shipped me off with a pocket full of Cipramil for a seratonin nerve bath, that had sent me under and increased my symptoms. She had also requested that I had my neck x-rayed before my next appointment so we could look at it together when I next saw her.

When we discussed this plan she left me in doubt whatsoever that it would be herself personally I saw next time I attended clinic. If on the day I attended for that appointment I had been seen by doc Racheal as had been arranged, it would have been the first time I had seen the same doctor twice in succession and I was anxious to establish some continuity of care.

When I was told by the nurse who weighs me each time I attend clinic that I was going to see my Consultant, I asked her why I wasn't seeing Doc Rachael, she said she didn't know, she just knew the man himself had asked for me. The nurse then said something like, 'Why, don't you want to see your Consultant?' I answered that I had just expected that I was going to see the person I had made the appointment to see and I was disappointed this had been changed. This was just light chit chat whilst I was being weighed, but I know she passed this remark on to my consultant because of a comment he made about my remark when I finally went in to see him.

He told me at that time Doc Racheal had gone to work at a different hospital and not that she was on holiday as he says in the letter. (I was told she was on holiday when I rang to speak to her the day after she had given me the cipramil that went horribly wrong 2 weeks previously). When Blahblah told me Doc Racheal had left I was upset, that she would lead me to believe I would be seeing her, she must have known she was leaving 2 weeks earlier when we made that appointment, when she had used the terms I, me and we in all her discourse with me. It wouldn't surprise me to find out now that she still works there and what I was told by my consultant was yet another slight distortion of the facts!

The point is that I never asked to see someone else, but I feel there is a subtle chipping away of my character beginning right there with that misleading statement. His assertion could imply that I am going to see my GP, getting her to write in to him, then I ask to see someone else! That I am wasting not only his time but my GP's time as well, I feel he is tipping her off and building up to a complete character assassination.
So while on the surface this appears to be an innocent little paragraph, I believe there is a distortion of truth and fact right there, I also believe that it is often the case that the devil is in the detail.

2/ Okay its getting bit meaty here, what point I wonder is my consultant trying to make or insinuate with yet another untrue and misleading statement? He is correct in one way in saying that I saw a lot of people at the hospital. When I had reacted badly to the interferon that is what happened, this was largely due to the fact that he was away on holiday, my nurse was too busy to see me and I was passed from pillar to post, never seeing the same doctor twice! Seeing a lot of different people has been a source of anxiety for me personally and not how I would have liked my care to have been handled. However I don't think this is the impression that my consultant gives with his statement.

Yes I see other professionals at the hospital, I have seen the endocrinologist once 2 years ago as I have low functioning thyroid. I saw a cardiologist once about 4 years ago when I was suffering from chest pain.

The best of his knowledge is indeed a very poor best, as I cannot for the life of me recall seeing 3 other consultants in the last 12 months as he claims. I asked the receptionist at the surgery to check my records to see if I had remarkably blanked these consultations from my memory, she could find nothing on my records., or indeed any letters that had supposedly been written to the practise by the said consultants. I had only been to see my gynaecologist as I suffer with endometriosis and because of this required his input regarding HRT.

3/ There he goes bragging again! He never misses an opportunity to take credit and impress this upon others. I wonder if he was on double pay when he stayed up all night! Seriously I am grateful that I survived that night and that I am alive today.

4/ Reading paragraphs like this one make me wish I had powers like Carrie from the movie of the same name. Using only the power of my mind I would stare at my Consultant intensely causing his stethoscope to curl around his neck and pin him with feet suspended against the wall. While he writhes about in terror, with his mouth open and gasping for breath, my case file would fly open and with demonic might the pages of his pompous, bigoted written word would scrunch up and ram themselves with much force into the orifice which is his mouth. I wake up there and realise this is just pure fantasy.

I don't understand the biopsy score, they seem to use a different scale to measure damage than the one I read about on the forum. I have been told and do accept that the biopsy of five years ago showed only mild liver inflammation, I think I mentioned this in my very first post 'Lets start with Malaria'. I do not understand what he says when he states that my hepatitis c is only mild, I thought as others have said, that you either have it or you don't. I presume therefore he is referring to the scale of damage to my liver as of 5 years ago, and he should state what he means, my GP knows little enough about HCV as it is without him distorting the facts.

He, Blahblah, acknowledges I had a very unpleasant reaction to treatment, I think that is quite an understatement and he does little to convey the seriousness of the situation as he did when he spoke to me he told me treatment could kill me and on that basis he would not prescribe treatment for me again, and neither would he allow me a biopsy.

He claims I have had this explained to me on several occasions, which implies I am stupid and needed to be told more than once. I understood the fact that I had had a very unpleasant reaction the very moment my nurse made the decision to stop my treatment in his absence, when she observed that I could not even lift my head and she said that it was ridiculous to proceed in that condition. I understood when he said to me, 'If I gave you treatment again it could kill you!' What didn't I understand?

Since my nurse stopped treatment I did see a number of professionals at each visit to the hospital, including the two occasions I was admitted as an in-patient. The reason I saw a lot of professionals was because the author of that letter, my consultant, was on holiday and not available to care for me. If he had been available, no doubt I would have seen him and not been passed from pillar to post.

'So come on, come on, do the Locum motion with me!'

My consultant states that he has '...no doubt whatsoever that her main problem is that she cannot understand that her hepatitis c is mild,' What a revelation! I truly thought that my symptoms were my main problem and not what I was thinking, which was not what he thought I was thinking!! Ba bom! Enter the Marx brothers.

5/ Well he sure did have along talk with me, when no-one was around he pushed home the claim treatment would/could/might/ kill me. He refused me a biopsy on the very same grounds.

He is not correct is asserting I have not had conflicting consultations, I was told by his registrar, doc Racheal, that I should forget the old, full of beans Miss Poppy and accept that I would need to rest, rest, rest and it may be along time before my energy returns. A couple of days later when the cipramil she prescribed failed to gently bathe my nerves, and in her absence as she went on holiday too, I returned to the attenders clinic at the hospital, doc Lucy ludicrously told me I needed to get out and about, not lie in bed and even suggested I go back to work before offering more antidepressants which I refused. Was this not conflicting consultations.

Or what about the one where a different consultant saw me in Blahblah's absence, when I was admitted into hospital the first time, in august, just after treatment was stopped. Before I was discharged this other consultant came to see me and told me that he would think that I just let everything settle down now and I would probably come and have another biopsy around November and dependant on that it may be that they would look at treatment again. Actually what he said was something like, if it were a life or death situation you may have more determination or inclination, (something like that), to continue the treatment. That remark puzzled me at the time as it implied that I had chosen to stop treatment. Anyway this consultant's analysis was a complete contradiction to what Blahblah was later to tell me when he returned from his hols.

The point is; isn't that 2 instances of conflicting consultations?? But you know old Blahblah just dismisses what I had said without even making any enquiry as to what I was referring to!! How convenient is that, no messy investigations to unearth the truth, just dismiss the patient and put a slur on her character for good measure.

He again labours the point that I have had consultations with a number of consultants and registrars and the opinion has been the same on all occasions. Why doesn't he say what that opinion is, and why again does he not explain why I saw so many different medics. He throws up a lovely smokescreen and frames me as some neurotic lunatic. Certainly Blahblah's opinion differs from the consultant who suggested I had a biopsy around November 05.

6/ Nicely rounded off there by Blahblah, whose conclusions about the wear and tear on my neck are in conflict with my physiotherapist and with earlier xrays and the conclusions given to my GP many years ago that I had spondylosis. He didn't even check the xray for the purpose doc Racheal had requested it in the first place, and I'm sorry to confuse the issue further, but the xray was not actually taken of the offending area, but this is another story of poor communications that result in wasting money on irrelevant xrays. I did mention this to the guy taking the xray, but he said he had to go along with what was on the request.

My liver function tests sound good, but I wonder about these, as they are the results after my short affair with interferon which had a majorly positive impact on the ALT scores. In fact even on my short spell of treatment in august 05, my ALT's dropped in the space of a week from 55 to 26 and to an all time low of 17 on 2 September !!! So from my own lay man's point of view the fact that my ALT's had doubled since then is perhaps significant. Blahblah's letter is dated 21 September, so we can deduce that my ALT's doubled in around 2 weeks. Maybe this is not important, but he mentions it in his letter that these are completely normal, which would lead my GP to assume all was well. I will be interested to hear the results of my most recent blood tests when I next see Blahblah on 6 Feb. I've no idea what a gamma GT is, but suspect this result too may not be typical due to influence of the interferon when the test was taken. So am I to assume that it is completely normal for ALT's to double in 10-14 days. I don't know the answer to that.


Blogger sanyassi said...

well hello miss poppy, all very interesting, but overall it seems you are another victim of the academic epidemic that we as patients have to guide ourselves through uopn entering hospital, myself i had a mad experience with the professionals in m/c, i was diagnosed last year as a gen 1, they said that my virus was very very slight, and that infact there was no concern, just give my bloods again and they will contact me in five years time, really... so i came in thinking certain death, and left thinking well 5 years grace, so lets go for it..i emigrated to an island in the med, i am 40 and thougfht life has to start here..that was last january...thien in december i got a letter forwarded from the uk from them, whiah basically said...ermmmh bit of a cock up sir, infact your biopsy showed a slight scarring of the liver and...we want to start the interfoeron treatmernt inaug 2006, i cannot get this treatment here so it meands come aug i have to arrange flying monthly back to the uk, m,aybe stayiong a week amonth, i dont know? can you tell me how the basics start of the interferon programme. i wish i could tell you more but that really is where i am at today, how can it be that one moment it was , see you in five years< the next after i had emigrated, was see you in 6 months.., so as i see it i got 6 months at least to enjoy the sun and the sea...what does the programme run like..2 appts a month or 5 blood testra a week?/ any info would be good.

1:05 AM  
Blogger misspoppy said...

Hello Sanyassi

Thank you for your comments.

I am sorry to hear you have had a poor experience with your prognisis. These mistakes impact hugely on our lives as you have found.

I can understand you have a lot of questions with your current situation and the best way I can advise you is to direct you to go to Martin's blogsite via the hypelink in the 'other blogs' section in the left hand margin of my blog. Where you will find he has much valuable information for someone beginning treatment.
I would also recommend you use the hyperlink to visit the hep c forum where you can ask your questions and speak to others who are living and being treated in Spain. Introduce yourself in the I'm new section and I am sure you will get lots of support.
With my own short treatment it was seeing the consultant or nurse twice a month. My own consultant was based in north Manchester and if you would like to discuss this further you could send me a private message via the forum.

I am sorry your life has had a major disruption, but I hope that you are able to make the most of the sunshine in the time you have left before treatment.

Good wishes
Miss Poppy

1:31 PM  

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