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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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 24, 2006

Appointment with Dr Blahblah

One of the most significant points of the meeting with my consultant, Dr Blahblah, for me was the absolute difference it made to have informed people attending the appointment with me. I am so grateful to Paul Overcomer and his wife Sarah for their wonderful support which has helped me to maintain my sanity at this very trying time.

In order to avoid getting passed to a junior doctor which is what usually happens when I attend an appointment to see my consultant, I requested that I was seen by Dr Blahblah himself when I checked in with reception. When I was called in to see him he told me straight away that he was puzzled as to why I was there, he said the appointment was only intended for me to have blood tests done. So it was clear from the off that I was on borrowed time.

I had prepared a list of questions I wanted to ask him, but even with the support of Paul and Sarah it was hard to get through the list of perhaps only 4 or 5 quite simple questions, and I still I came away without asking all of them. The difference between not getting all the answers this time as opposed to not getting them last time, is that I had others to witness the great difficulty I have getting Dr Blahblah to actually listen to my question from start to finish without butting in and taking me around the houses and still not addressing clearly what I am trying to ask, and this was beneficial in preserving my sanity.

My first question began like this, 'When I was last here and you told me treatment was killing me......'. That was as far as I got before Dr Blahblah chipped in, loudly claiming he had never said that. I protested that indeed he had, and I had to insist again and again as he repeatedly denied making that statement. This was very difficult because every time I opened my mouth to speak he cut me up or talked over me. I had to be very forceful indeed and I eventually reminded him that he had not only made this statement once during my last session with him, but three times!! He finally acknowledged that he had said treatment could kill me not would kill me. I could have argued and laboured this point further, but this was not a court of law and this statement was only the precursor to the real crux of the question which would have basically been, 'if treatment was killing me can you tell me if this was due to the ribavirin or the interferon?'

I think Paul and Sarah would bear me out, but I personally felt that until I became forceful Dr Blahblah was going to deny ever saying anything vaguely like what I had claimed. His initial protestations certainly appeared to be a total denial of ever saying anything remotely like that. After that, each time I tried to pose a question he butted in before I had finished and went on a long and complicated tale which, as I mentioned before, never usually answered what I was trying to ask.

As a further 2 of my questions were dependant on the answer to the first one, this initial argument jarred the way I had loosely expected the consultation to go. Basically I came away with little more clarification than when I had gone in to see him, and I found the struggle to be heard upsetting and stressful. The lack of clear answers frustrating.

He did in the course of the consultation say stuff like because your liver is only mildly inflamed I don't think you should consider treatment again just now, but wait until the newer treatments become available. I think this is a valid point but is a far cry from the dramatic impact of what was said to me last time and I feel the effects of how and when that was put to me last time have been far reaching in terms of mental health.

Strangely, each time I asked my consultant half a question, he turned and addressed his answer to Paul and Sarah with an ingratiating smile, and not to me. Another thing I realised was his methods of cutting me up and butting in, created a lot of confusion for me. Having brain fog I cannot digress easily, so if I begin to ask a question, then he interupts before I have finished and goes off on a tangent because he has not listened, I find it very difficult to follow what he is saying whilst he is bombarding me with unrelated information that my mind has not prepared to take in. At that point I am trying to hold my question in my mind until he has finished his unrelated sojourn, so I do not forget it. I found what my consultant does is waffle on furiously taking lots of twists and turns unrelated to my question and effectively using up all the consultancy time.

It took 3 attempts to mention my current symptoms which he gave only cursory attention to and then dismissed and ignored them by taking the discussion elsewhere. Bringing him back again to the subject of symptoms, He appeared reluctant to acknowledge HCV could cause symptoms and his focus was solely on liver damage. No, that is not quite right, it was not that he was reluctant to acknowledge symptoms, he dismissed the idea right out.

When I said I was exhausted all the time and that I felt drained and dizzy if I had to speak at length, I said in fact I feel lightheaded now just from speaking here. He dismissed my comment with this quip, 'Well you wouldn't be able to tell'. (the inference, I felt was that I talked a lot), with that remark there was no further questioning.

I told him I had felt dizzy, 'Well you never mentioned that before', he said, 'stand up and shut your eyes tightly'. I did as he said and he came up to me and pushed me by my shoulder to one side then repeated this on the other side, he then said, 'well that seems OK, you can open your eyes now'. I took my seat and that was the end of that, again there was no further questioning. I had mentioned these symptoms to Doc Rachael when I had last seen her, so perhaps this had not been passed on?

I mentioned my recent visit to the neurologist and informed him that I had become aware of a comment he, Blahblah, had made on my notes, that I was not in agreement with. He asked me what that was, I was nervous about challenging him and said something a bit weak about him saying I was anxious and unable to accept my HCV was mild. He said that he had never made such comments, he then quickly opened my file and showed me a letter, pointing out a certain paragraph.

I had to lean across the desk to try and read this, I was looking for the key words, anxious and mild, but could not see them. I was too shaken to read the text through clearly and he was rushing me and telling me this was the letter he had written to my surgery after my semi locum GP had written to him to ask him to see me personally. I asked him if there was perhaps another letter, he had closed the file by now, he laughed and said how much did the neurologist get to read and once again dismissed me. I felt very foolish, he seemed to confuse or dismiss all my claims.

I asked about my PCR test, I wanted to ensure that the quantitative PCR was done pre treatment and was very interested in my baseline viral load. Once again I got to say half a question when he cut me up and went on a long story about how they do a cheap PCR test at 12 weeks and only if this doesn't show the virus is undetectable do they use the more expensive quantitative PCR. I've put that simply, and I may not have understood exactly what he was talking about, but it was clear that there had not been a quantitative PCR test done pre treatment and further, that this procedure was accepted practise at the hospital. It was a pity doc Rachael was unaware that this is the system they use at this hospital when I asked her at a previous appointment for my results, it would have saved anxiety and confusion for both of us.

Doc Blahblah then changed the subject and asked me if I had been back to the Gambia yet. I was surprised by this question as it was a question he had asked me this a few times before, the last time he asked this was in 2002 and I never saw him again after that until once briefly before my treatment in May 2005.

The reason he made reference to the Gambia is because this is where I contracted Malaria. When in 2002 he mentioned this, I explained I would be afraid to put myself at risk again. He assured me that I could travel there again as there were now new improved antimalarials available, he said the new type were used by 'our boys' in Sierra Leone, and although they were more expensive that the standard antimalarials they were more effective.

When he said this to me in 2002 I decided very shortly afterwards to take advantage of a very cheap, last minute holiday I had seen advertised on teletext and go there with my sister. I was really happy to find I could now travel further afield again, and I booked the deal. I rang the hospital to make an appointment to get the special pills, only when I got there I was seen by somebody other than Dr Blahblah and informed in no uncertain terms that these pills were not suitable for me as they were toxic to the liver.

I protested that Doc Blahblah had told me it was OK, the medic left the room, I presume made some enquiries and came back and confirmed that it was a misunderstanding and I could not have the pills. In fact I was told I could not have any antimalarials, but they would give me a 6 week course of antibiotics. I was not happy, I was only going away for a week, not only that but when I got home I found the literature advised me to avoid the sun when taking these antibiotics!! Brilliant.

There is a little more to that story in that Dr Blahblah had also told me I didn't need the yellow fever vaccine either, but again this was disputed when I presented myself at the hospital where they insisted I had the vaccine! Confusion upon confusion.

I was naturally furious and that was the last time I saw Doc Blahblah until May 2005 when he gave me a quick prep talk pre treatment when all that about antimalarials was put aside.

So you can imagine my shock when he asked me if I had been to the Gambia again at this meeting. I reminded him of what happened last time, and how the wonderful antimalarials he had promised me were not forth coming and how it had ruined my holiday. He became a little flustered and said, 'Who told you you couldn't have them?' I told him I couldn't recall at that point, he then turned to the trainee doc in the corner of the room and said something like, 'They are not contraindicated are they?', the junior doc said she didn't think so.

There was a big queue of patients waiting to be seen outside in the waiting area and we had come to the end of the session.

I woke up the next morning and felt I had been had. Not only did my consultant make very strong statements to me about treatment killing me when he had seen me at a previous appointment. He had also claimed at that time that this extreme effect was the reason for not giving me a biopsy, due to the fact he would not give me treatment even if my liver was damaged as treatment was killing me, so what was the point of biopsy?!

Yesterday I feel he had so effectively confused the issue that I had come away without even challenging his refusal of a biopsy! He did say this stuff, and in my opinion this was reckless and it caused me to suffer what now amounts to an unnecessary and severe depressive reaction. On reflection I did not see what difference it made really whether he had said would, could, will, or might kill you. His conclusion was the same and was based on that statement.

I also woke thinking this man was basically a liar or at least a distorter or manipulator of the truth, and on that basis alone I should proceed with a change of consultant. Whether any of his conclusions about how we are to proceed with my health care are correct or not, I need to be able to trust my consultant. I also need to be able to speak to my consultant and be sure they will listen and allow me to fully ask questions. I need a consultant who does not make misleading, untrue and damaging remarks on my file which may possibly have negative consequences for me when I seek the services of other professionals like the neurologist, with the health issues he himself is dismissing as unrelated to HCV or TX. (I have now read the letter in full and have a copy in my possession).

I had blood tests done after my appointment and I go back 6 February for the results. In the meantime today I have rang the hospital for permission to view my notes, which hopefully I will see before I go back for the blood test results. I had to fill out a form and pay £10, if I want copies of anything I can have up to 40 and after that have to pay 25p a copy to a maximum cost of £40.

So the slow and cautious process begins to seek out better health care. I will stay with my current GP until the second opinion has been processed and I will not even initiate that until I have had the blood test results and read my notes.

There are other factors that may delay proceeding immediately for a change of consultant, eg if he agrees to a biopsy next time I see him. I do not want any more factors concerning my health care to become confused due to the disruption of changing consultants at a crucial stage in care such as biopsy. I would ask now though, in the light of patients being able to choose which hospital they attend, that the biopsy be carried out at another hospital where I am informed the biopsy is ultrasound guided.

For sure I would not consider undergoing treatment again under this consultants care, and how I proceed with regards to treatment would be dependent upon a biopsy and the results of this. I am not foolish enough to put myself through the treatment ordeal again if damage to liver remains mild and if there is hope on the horizon of new and better treatments becoming available in the not too distant future. I would, as my consultant advised, be sensible enough to wait a while for these newer treatments, if this proved to be the case. My consultant does at least still maintain that I had a particularly severe reaction to the treatment.

I have been to see my semi locum GP who I get on well with, if I overlook the incident of the referral to the acupuncturist the other week and, who knows, that may not have been entirely her fault. It's just that this is the GP who has indicated her support when I am ready to change consultants.

I asked to see the copy of the letter Dr Blahblah wrote, I cannot keep information in my head anymore, I need to see it written down and have time to digest it, she shows me the letter on screen and I get a better look at it. I tell her I am very angry by the contents and do not agree with the comments he has made about me and I will be complaining.

I also ask her to write to Blahblah and ask for clarification as to where I stand with the antimalarial issue as once again I am confused as to whether I can take these new Malarone, I think they are called, or not. Let Dr Blahblah put his pen where his mouth is, this is the only way to pin him down.

Later I return to the surgery and get a copy of the letter Dr Blahblah wrote which is more damaging I feel than I had initially thought. I am certainly unhappy about his comments and will not settle until I have done all I can to have this letter removed from my records or at least amended.

I will tell you what was in the letter in my next post as it is a bit lengthy and I have a lot to say about it. I conclude that my consultant is a very slippery character indeed.

In the meantime I am improving leaps and bounds in the physical sense, by that I mean I have managed to have a 45min - 1 hour brisk walk daily for the last 10 days. I am still having periods of bleak depression, anxiety following the least bit of stress, pressure or frustration and finding it difficult to concentrate for any period of time. It has taken me ages to get this post in order and to realise I needed to seperate the letter from this part of the tale, I have cried when Tesco did not have the wheat free, yeast free bread in stock that they had informed me on the phone they had, (I did laugh at the absurdity of this later), and I ended up having an anxiety attack yesterday after trying to deal with trade unions, CAB and employment welfare. I am on notice of possible redundancy which will be confirmed on Friday. I feel frustrated that I am unable to get back to work despite the threat of redundancy and I feel powerless.

It has been 6 months since I had my 2 shots of interferon, I am certainly in a worse state than I was before I started this treatment thing. I seem to have been caught up in a whirlwind of disaster. Anyway despite all this and the strange depression I am still able to endeavour to be upbeat, cheerful and laugh a lot, if that makes sense. It's the anxiety and the left side weakness that messes me up and for that reason I am considering having another attempt at antidepressants. I need to give this careful thought, I do not want to set myself back again due tot he bad reaction I have had to these in the past, yet I do not wish to stagnate here any longer.

Enough. Peace and good will to all readers especially those with or affected by the virus and those currently on treatment. I wish you all health and rapid recovery. To those of you contemplating treatment, please do not be put off by my experience, put it into context by considering the many success stories out there on the world wide web.


Blogger Paul said...

Brought it all back, Poppy. I think the fact that Dr Blahblah comes from Pontypridd explains a lot. It came out in the time limited appointment that he knew Tom Jones (the singer) who is also from Pontypridd. He was going to tell us of certain information that he claimed to possess that TJ was “headed for borstal” till fame caught him first but we managed to direct the valuable time back to the matter in hand.
The ingratiating smile was weird.
“We`ve got a right one here”, DR B seemed to be saying.
It made me realise how difficult it must be for women to be dismissed by men and in particular, medical men as hysterical neurotics.
This is quite a burden for a woman to carry – all because she does not possess a penis.

The consultant stated absolutely and quite categorically that hepc has no symptoms. He said this twice. When I challenged him on this he said,
“The hepc virus only attacks the liver nothing else”.
I said “Yes but the liver controls hundreds, probably thousands of chemical metabolic tasks. If these are being interfered with surely they will affect the whole body”
Ah well, says the suddenly humble man from the valleys, “There you have it”.

Unbelievable. But a great day out and meeting Miss Poppy was a delight.

Paul and Sarah.

2:07 PM  
Blogger jane1962 said...

Well done, MissPoppy, I have a)feeling you may have got further forward than it seems to you just now....it takes a lot of courage to make changes ( i.e. thinking about chaging consultants, beginning procedures to have your medical records amended etc.)Especially when you are feeling so rough...take it one step at a time and in "bitesized" chunks and you will get there. Then you can name and shame the arsehole so the rest of us can avoid him....no symtoms indeed!!! Good luck, and remember the Hep C Trust has an advocacy dept. which may well be able to take some weight off your shoulders, have you been in touch with them? May be worth sending a copy of your bog to Adam Green, their solicitor, for his opinion on your treatment. Best wishes, Jane 1962

6:59 PM  
Blogger misspoppy said...

Hi Paul
It was just great to meet you and Sarah too that day, what a blessing, your presence really did help me enormously. I don't think I will ever be quite so afraid of my consultant again, you guys broke the spell.
The plot thickens with my consultant as my surgery have just received his reply regarding the anti malarials, he recommends I take antibiotics as the malarone, (he was suggesting I take), are toxic to the liver!!
Now that just says it all, I have been bloody right to question what he says! Yes as you say, Unbelievable!
I hope you and Sarah are enjoying your much deserved posh hotel break:)

Hi Jane 1962
Thanks for your very encouraging words of support:)
I am feeling pretty good right now, recovery is such a slow and subtle process, it tends to creep up on you before you recognise the progress. I appear to have made a lot of headway this last couple of weeks:)
I think the above bit of info about the anti malarials just clinches it now Jane. I will be taking my time, (also dealing with possible redundancy issues right now), but there will be a definate shift now towards making those changes.
The advocacy service at the Hep C Trust has been mentioned to me before on the forum. It sounds like a very useful resource, thankyou, and I will check this out.
Perhaps the solicitor is an idea for the future, there is certainly much to consider and a reality check of what is acceptable would be useful.
Thanks again and best wishes to you too.
Miss Poppy

1:46 AM  
Blogger hepatitisc said...

Saludos desde españa ! os presento mi Blog de hapatitis C, http://blog.ayuda-hepatitis-c.es

siento no hablar ingles ! salud

12:59 PM  

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