Archive for May, 2005

Week 28 – Saturday

Saturday, May 28th, 2005

We have now been back from holiday for a few days. There was the usual experience of ‘slotting’ back into the schedules and routine of everyday life – household jobs, work and ‘catching up’ on things (contacting the roofer to arrange revised dates for repairs, the garage where my car was serviced while we were away, etc). Suddenly life seemed to have speeded up again. So today, as the first day with no commitments, I have been lazing about and can’t say I have done much really.

Just worked out the numbers (again). On Monday I will be doing injection #30. With 18 remaining to Week 48.

As I read the Forum and begin to catch up on the blogs I am feeling both very fortunate and somewhat boring at this stage of treatment. I have moved away from that heightened sense of awareness and anxiety about side-effects that I initially had at the beginning, accepted (for the most part) the limitations of living ‘inside’ treatment and feel generally ‘well enough’ to get on with everyday life in a limited sort of way.

The sides I experience (riba-hum, riba-rage, trouble sleeping, occasional days of fatigue, etc) are now all familiar and I employ my usual strategies for coping. And for the most part they work well. I feel fortunate not to have the severe effects others describe of headaches, rashes or pains. So I am feeling this blog doesn’t make very interesting reading at times.

On the other hand, this is my experience of the treatment and adds to the general ‘knowledge base’ of Hepatitis C treatment we are developing through our blogs.

I am interested in the idea I read on the Forum about various stages of tx and I guess this stage (getting on with everyday life in a limited sort of way) is one I will be better able to articulate with some hindsight.

It’s funny. While I am writing that I don’t have much of interest to say about treatment in this blog right now, I am aware that I have missed blogging and the blogging community while I was on my break. I couldn’t resist checking the Forum several times, enjoying the lively debates and discussions taking place and seeing how people were doing.

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Greetings From Spain

Tuesday, May 17th, 2005

Have been checking the Forum to see how its going. I am delighted to see new members continue to join and the feedback suggests people are finding it a useful and positive place to exchange views and information. Muy bueno.

I have realised how I exhausted and depleted I was feeling before this break – it has taken a week before I feel we are beginning to relax and unwind. Enjoying the sun, the light and laid-back pace. And seeing family for gatherings, meals and visits.

I.ve noticed how it has taken me awhile to acclimatize to the different weather, change in meal times (we are often eating lunch at 3 or 4 pm, dinner at 9 or 10 pm) and going to bed later. My body ´thermostat´ had difficulty at first catching up with whether I was feeling too hot or cool, etc. but this has now settled. I also took 2 paracetomol before bed last night and slept more soundly. I usually do at home but thought I would take a break from routine. Useful lesson – the paracetomol does help settle the riba hum at night. Did my injection last evening with no problems. But I can´t recall just now what number this is.

Of course I have been enjoying the Spanish equivalent of Danish pastries – el caracola, with coffee in the morning sunshine. And now that I´ve read the discussion about coffee on the Forum I have sometimes even had two in one day as they make such good coffee everywhere here.

Will be catching up on emails and making comments on the Forum when I return.

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Week 26 – Off To The Sun

Tuesday, May 10th, 2005

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Bags are packed, house tidied for Phil and the friends coming to stay, lists up how to use washing machine, when to water plants, etc. Just about time to go out the door so this will be brief.

Feeling exhausted now but looking forward to arriving and relaxing again in about 8 hours from now.

Met up with Jonathan yesterday while I was up in town finishing some last minute shopping. It was good to meet, and as he says, interesting to talk to someone you’ve not met before although we already know each other online. I think I was a bit ‘running on at the mouth’ when we met – as I sometimes do when I am feeling tired but he seemed to cope.

Planning to look in on the blog and forum while I’m away – after I’ve had a rest and a break.

Did injection 27 last evening – seemed to have got out of sync with my injection site pattern (left abdomen, right abdomen, right thigh, left thigh) either missing one step in the sequence or using one site twice – not sure. But not bothered.

Thanks for your thoughts and your good wishes for my holiday. Catch up with you all when I’m back. And, as ever, I wish you well in your journeys.

Week 25 – Thursday

Thursday, May 5th, 2005

I woke again at 5 am – seems to be a bit of a pattern developing? I took 2 paracetomol and breathed in some valerian on a tissue and this helped send me back to sleep for a bit.

Overall, I feel I am getting tired, and depleted, in the same way everyone does in the run-up to a holiday break. It is the last working week before we’re off to Spain. Having said that, just spoke to our cousin there who says they are expecting a drizzly weekend. We are of course assuming this will have changed by the time we get there! As usual we are leaving our son Phil and friends capably running the household in our absence.

Pleased that the Forum is taking off – I was guessing there was a need for a place to share and discuss issues on HepC, as well as reading the blogs. Sure enough questions and topics are already being explored. I think its an advantage that so many people who write blogs are closely involved in the discussions. New readers asking questions have a chance then to weigh up the replies based on their ‘acquaintance’ with people through their blogs. To a great extent this avoids the ‘downside’ of getting information on the internet in forums – you really don’t know anything about the source of the advice. Of course, people need to make up their own minds (and take medical advice where relevant) about the issues but it is useful to know the information that others can pass on before making decisions or choices.

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HepC in the News Part 3

Wednesday, May 4th, 2005

Last week, Tuesday 26 April, Jeremy Laurence who writes a regular Health column in The Independent wrote a short piece about hepC which I found astounding on a number of different levels.

Although a bit longish, I reproduce it here so the full flavour of the piece can be seen:

It was a small scare with no one dead – so far. But it raised one of those intriguing questions about the balance of good and harm in health that remains endlessly fascinating. A gynaecologist infected with hepatitis C was thought to have passed the virus to a patient triggering an alert that led to 2000 women being offered tests last week. He had worked at 25 hospitals throughout England and Scotland for 23 years.

It caused hardly a ripple in the national media. But there was one puzzle about the case. A test for hepatitis C has existed since 1991. It is used to screen all blood donations for the virus. So why wasn’t it used on the gynaecologist, and for all other doctors involved in surgery where just a simple scratch or pin-prick could lead to transmission?

Well, routine testing of health workers has never been introduced because there is no vaccination against the infection.

Under new guidance, students intending to take up surgery will be screened. But the decision not to test existing health workers has divided the medial establishment. Public health specialists have argued that testing is necessary to protect patients. But surgeons have protested that routine testing would lead to a serious loss to the surgical workforce. One in 200 surgeons is thought to be infected and, once identified as a carrier of hepatitis C their career is over.

The official view, though not explicitly stated, is that the harm to patient care caused by the loss of surgeons from the workforce outweighs the harm caused by rare cases of viral transmission.

Five to 10 patients a year are estimated to contract hepatitis C from healthcare workers, and there is a tacit acceptance that this is the price we must pay to keep the NHS running. I think it is a reasonable balance, but I suspect many won’t. In case it is any comfort to those who don’t, the risk of dying as a result of hepatitis C is about equivalent to the risk of being killed by lightning.

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From the article we can see that
* One in 200 surgeons are infected with the HepC virus; according to the Royal College of Surgeons website there are just under 50,000 surgeons in the country (my quick reccie shows a host of titles & types of surgeons so probably also includes Veterinary Surgeons).
* Based on these figures, there are currently about 250 surgeons infected with HepC performing operations every day.
* Surgeons take the view that if they are identified their career is over.
* The official view, though not explicitly stated, is that the harm to patient care caused by the loss of surgeons from the workforce outweighs the harm caused by rare cases of viral transmission
* Routine testing of health workers has never been introduced because there is no vaccination against the infection.
* Five to 10 patients a year are estimated to contract hepatitis C from healthcare workers, and there is a tacit acceptance that this is the price we must pay to keep the NHS running.
* The risk of dying as a result of hepatitis C is about equivalent to the risk of being killed by lightning

It leads me to wonder about a number of issues here:
* What information & statistics are being collected and what is being done with it?
* The ‘one in 200’ statistic must be based on data collected to form such an explicit ratio. So, data and information about HepC infection amongst the medical profession must exist. How much other such information is currently being collected and stored about other professionals? What is being done with it – and about it?
* Is it really sensible to decide not to screen health care professionals (or any other professionals as well) because no vaccine exists? We screen for cancer but there is no vaccine.
* Is it true that a surgeon’s career is over if they are identified having hepC? The gynaecologist mentioned in the first paragraph continues to work we are told (presumably on the same salary) on other duties but away from direct patient contact. Is the surgeons career really over if they are removed from risky activities such as operations? Don’t surgeons also teach, manage, do research, and other knowledge-related activities? Aren’t these careers?
* Does the threat of a shortage of surgeons mean that group are in a strong bargaining position for their preferences and views to hold sway in the debate about the balance of good and harm in health?
* Is that behind the ‘official view, not explicitly stated’, that the loss of surgeons from the workforce outweighs the harm caused by rare cases of viral transmission?

The General Medical Council tells us it is a doctor’s duty (amongst others) to
? make the care of your patient your first concern;
? recognise the limits of your professional competence;
? make sure that your personal beliefs do not prejudice your patients’ care;
? act quickly to protect patients from risk if you have good reason to believe that you or a colleague may not be fit to practise;
? avoid abusing your position as a doctor; and
? work with colleagues in the ways that best serve patients’ interests.

I cannot see how this commitment squares with that stance on protecting one’s career in medicine. Do they really plan to allow 5 or 10 people a year to contract a chronic disease as a result of this stance?

The risk of death from HepC may be similar to the chances of being hit by lightning, but the suffering caused by the disease and the treatment, as well as the cost of ‘late diagnoses’ is considerably significant – especially to those affected.

I am bemused by all this. I cannot find it in me to quietly accept that this is the way it is and should be.

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