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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

Friday, February 10, 2006

ABOUT TURN

On Monday I went back to the hospital to get my blood test results. My consultant tells me he is concerned as my viral load has increased from 612,000 to over 4 million and my ALT's increased from 55 to 162 since September 05. He drew a little graph to illustrate the upward trend, which was quite unnecessary, and explained that if this trend continued then he would have to consider putting me back on treatment!!

Once again the impact of what he said sent my mind spinning. It is getting difficult to keep up with him, I was just beginning to resign myself to waiting for the new treatments to become available a few years further down the line. He said he would like to check my bloods again in May and if there was no improvement he would consider treating me with Pegasys interferon manufactured by Roche, rather than the Viraferon Peg manufactured by Schering-Plough, which I was on before, as there is a slight difference between the two and there is a possibility I could tolerate the Pegasys better.

He said he still didn't think I would be able to tolerate treatment but said he had a couple of tricks he could try. He didn't elaborate much about this except to say he could give me something to take for 2 weeks preceding treatment and I suspect he was talking about anti anxiety drugs. I found it difficult to follow all he was saying as I was in shock that he was actually talking about treatment again after all he has said before. This is a major about turn and I was not prepared for it, I am so puzzled I wonder if he has read my blog or if he got wind I was to view my records the next day. Whatever, I feel I have not fully recovered from the problems triggered the last time I had treatment, so I don't even want to think about this until I am stronger.

I attended the hospital again the next day to read through my records, they made difficult reading. In the notes about my first day on treatment my nurse had written that I had been aggressive. I found this very upsetting because when I read the term aggressive, to me, it conjures up an act of a violent nature and this was not a true description of how I was on that day at all. I was nervous, anxious and afraid and I would describe my state after my dealing with my nurse as distressed, agitated and affronted. I have recorded the events of that day in an earlier post 1st Injection which I had written in August 05. How I wish now that I had been well enough to write a letter of complaint about her attitude that day, I am appalled that she could record such an unbalanced account of that day's events.

Apart from the letter my consultant wrote which I have detailed in my last post entitled 'My consultants letter', I found a more recent letter, the one he had written after my visit in January 06 when I was accompanied by Overcomer and his wife Sarah. It was scathing, again he labours on and on about nothing in particular, but makes a large statement about how my appointment took up a full 30 minutes, that I brought along 2 friends, one of whom had hepatitis C and that he had no doubt that on my next appointment I would take up just as much time!

His whole manner in the letter was, in my opinion, a subtle attack on me and I felt he was building a damaging picture, I was a time waster, I turned up to see him with a couple of junkies sort of thing. No offence to Overcomer in his Armani sweater and Sarah who are beautiful, well presented and upstanding people, but of course those reading his letter will be left to conjure up their own images from his inferences. I wonder what he will say about this last appointment when in order not to be alone with him, as I no longer trust him, I took my friend Janet. My friend Janet knew who my consultant was as she is friends with the judge who lives 2 houses away from Dr Blahblah and she let him know this as we left.


I am hurt at how these damaging remarks can so easily be added to a file that is going to follow you around fro the rest of your life. When I worked in children's homes we were trained to be sensitive as to what and how we recorded incidents on the young person's file as the young person would have that file for life and would read it as an adult. So we were sensitive that we didn't fill it with negative comments that may haunt the person in later life, which we so easily could have done considering the behaviour of some of the damaged young people we worked with. I cannot understand why those with access and power to influence the opinions of other professionals can so casually write in such a way as to denigrate the patient. Do they answer to no-one?

I have given a lot of thought to all of this, I have asked for copies of all items in my medical records and paid £50 for the privilege. I can see I have got a lot of work ahead of me if I wish to challenge these damaging remarks. I know now that my intuition regarding these people has been correct, but for the sake of my mental health I am going to have to let go of this for a while. I will have the copy file posted out to me in the next 40 days or so and there is no immediate urgency to deal with these issues. I now know that my intuition regarding these people has been correct all along and I am finally clear that Blahblah is no longer making a positive contribution to my wellness and I am well rid of my nurse.

I spoke to my semi locum GP Dr Z about how I felt that what I have been through in the last 6 months has actually been a nervous breakdown. I feel I have been so traumatised by what happened to me early on in my treatment and the subsequent appalling care I have received since treatment was withdrawn, has triggered and exacerbated underlying anxiety disorders. She didn't disagree. I still feel there was no real support for me and that I have had to struggle with this alone and work it all out for myself. Apparently this lone, unassisted struggle is not unusual for those unfortunate to suffer with mental health issues.

I have been faced with work issues too recently when I received notice that along with the rest of the team on my project, we are on risk of redundancy in March due to a cut in funding which means 2 out of 8 of us will get the chop. To cut a long story short we will all have to undergo an interview to determine who goes, my interview is Tuesday. I am still off work sick and when I was faced with this challenge I had a marked flare up of left side symptoms and depression, this has helped me accept and realise that at least some of what I have been experiencing must be due to nervous exhaustion.

In my search for some answers as to what has been going on for me I searched out an old friend who is a herbalist, I used to work for her many years ago dispensing the herbal medicines she prescribed to clients. I sent her a sample of my hair to run some tests on and these are the results she sent me. I thought some readers might find what she has to say of interest. The test is highly individualised but some of you with the virus may recognise similarities where many of us share common ground. This is what she had to say.

'....Here is an overview of your Test Results.
I have given you the list of your food allergies from the main test:. These are:
Milk - high
wheat - moderate
yeast -high
coffee - moderate
soya - moderate
Basically it is best to avoid these where possible.

Your basic vitality is a little below par, and you have a good deal of nervous stress and tension, and your sympathetic nervous system is both tense and exhausted, so it is difficult for you to relax, and you are feeling almost constantly anxious and depleted. This is both emotional and physiological since you do not have reserves of nervous energy to call upon.

There was a slight reading on Malaria and Malaria toxins, both of which I broadcast to clear, as this seemed the most sensible way to proceed with these to clear them from your body tissues.
The hepatitis was only at a mild level, but had affected your liver and liver function quite extensively. The medicine supports your liver cells to overcome this and to regenerate themselves.Obviously this will take some time to achieve and some of the ingredients in the current 12 drop prescription will carry on in future medicines.
Your gall bladder is congested and your fat metabolism disordered, in turn affecting your production of various steroid hormones. The medicine works to normalise this process whilst not exhausting your liver's present capacity.

As a result of your liver's deficient functioning you are low on naturally produced anti-inflammatory hormones and have developed something akin almost to an auto-immune inflammation of connective tissue, muscles and joints. It is part of a disordered immune response, with its origination in your spleen, and is a process whereby you cannot always fight off infections yet at the same time are generating inflammatory responses to your own connective tissues.Your body will start to overcome this, but I do not think it will be a consistent process and I think you will still have times when you feel quite arthritic, and times when you are virtually free of it. In other words it will an very up-and-down process with occasional flare-ups until your body is reliably producing the anti-inflammatory hormones it requires.Taking anti-inflammatory medications or herbs may bring some symptomatic relief, but would only be masking and not healing the condition.This sporadic inflammation of connective tissue is also from time to time affecting the schwann cells of your nervous system and I think this is where some of your peculiar sensory symptoms are coming from, and why they seem to affect you for a time, and then disappear for seemingly no reason whatsoever. There is no evidence on this test that it is the beginning of MS. It is just not the right clinical picture. This is a disordered immune response and transitory inflammatory process, not a demyelinating degeneration.
You have a very slight anaemia, sub-clinically lowered thyroid and parathyroid function, and both your oestrogen and progesterone are slightly lowered. The effect of these lowered readings is a decrease in bone density which in the longer term would go on to cause some osteoporosis.
Your blood sugar is easily dropping low, and this again would give you odd sensory sensations and brain fag.
The net effect of these metabolic dysfunctions is an overload on your kidneys which in turn will also make you feel spaced out and unwell. Again you will be experiencing times when your head is quite clear only to be followed by times of muzzy headedness.
All this makes your bloodstream, your portal circulation and your lymph sluggish and congested, so you will feel tired and lethargic.
All in all, these problems will mimic so many disorders that you will wonder if you have anything from rheumatoid arthritis to any number of CNS disorders with circulatory deficiency.
It will take some time to normalise and restore your immune reserves and response and clean and normalise your body tissues. The 12 drop medicine starts to address this and to normalise these metabolic processes.
Could you also get a 200 i.u. Vit E and take it twice a day with food.
In my opinion, all you can do is slowly turn this around by keeping on supporting and normalising your liver and your metabolism. The test results show that this can be done but it will take time.
I hope this is helpful....'

This is my plan of action for the next few weeks, Tuesday interview, (my last hurdle) and Thursday Thailand. Yes I am going to KohPhangan and I am going to stay in a bungalow on the beach and just totally relax for 4 weeks. My partner's brothers and their wives are already there, I may have mentioned them before, one is teaching diving on Koh Samui and we will stay close to them the first week and the other brother and his wife are teaching yoga and diving on Koh Phangnan and we will stay by them in a more remote location the remainder of our time.

Sending all of you in Hep C land my good wishes for rapid recovery.

Sawadee ka.

1 Comments:

Blogger Ron Metcalfe said...

Hi Poppy

I was beginning to wonder if a truce had broken out between you and your consultant. Too soon to tell but will watch with hope and interest that you can move forward comfortably and happily at some point soon.

Four weeks in a bungalow in Thailand sounds wonderful – I’m envious just thinking about it. I hope you find it a restful and restorative time – you deserve it.

And good luck for Tuesday and hope it brings the outcome you want.

Wishing you well
Ron

6:43 PM  

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