Archive for April, 2005

Week 24 – More on HepC in the News

Saturday, April 30th, 2005

I recently wrote about the news item (Week 23 – Hepatitis C In The News Today purchase discount medication! buy doxycycline 20mg . instant shipping, amoxil con alcohol pills – natural, safe, useful!. generic amoxil con alcohol .from $0.46 per pill we are fully committed to providing you with the highest quality  buy doxycycline 100mg. ) that 2000 women across the UK are being asked to undertake blood tests because a gynaecologist could have infected them with hepC. I wrote my comments about this with passion, perhaps underlined with some ‘riba-rage’ ranting. Two main issues bothered me. Media awareness about Hepatitis C being raised in a ‘bad news’ context more successfully than educative and proactive articles. And secondly the lack of evidence of a proactive stance on the ‘protection of the public’ issue.

In a comment reply, Sue in Toronto wonders how it could happen with standardised precautions and procedures in the medical profession and hypothesises that transmission could be higher from other professionals not as clearly monitored. She also disagrees with the notion of forced public disclosure for hcv-infected professionals.

The latter point is one I can easily agree with. Any proactive programme to ‘protect the public’ does not have to include public disclosure about any individual’s HepC status. They can, and should, be mutually exclusive issues.

The doctor concerned in this news story is a gynaecologist and, amazingly, has worked in 25 hospitals in Britain and Scotland. Local newspapers are now reporting on the implications for patients in their area and ‘outraged’ patients are complain.

Dee in Philadelphia comments that the Sun newspaper identifies this as an isolated incident. Well, other newspapers quote research from medical professionals that there are between 200 – 500 thousand people undiagnosed in this country at the moment. The Sun can say it is an isolated incident – I say it is only the first incident. How can there not be other medical professionals with that amount of undetected HepC about? And following Sue’s point, there are no doubt other types of professionals too who could unknowingly be infecting their clients, patients and customers.

I came across another article in the Independent newspaper this week revealing more stats about HepC amongst the medical profession and that profession’s response. I will comment further on this in another posting.
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Week 24 – Monday

Monday, April 25th, 2005

As usual, I did not post recently as my part-time ‘work week’ leaves me feeling like a break from computers! On the weekend I visited the blogs and did some work with my son Ben on constructing a Discussion Forum for this blog. At the moment I am testing this out and will let you know when it is ready for general use – soon!

Today I went for my hospital clinic, blood tests and pharmacy visit in the morning. Then Carol and I went to Oxford Street for shopping in the afternoon and met Phil after work for a meal. Home for my injection and, shortly thereafter, bed. A considerable achievement for me. Before Christmas, when Carol went shopping in the afternoon following a clinic appointment, I knew I couldn’t face all this activity so I went home alone after the hospital visit part – and spent the afternoon recovering from the trip out!

My hospital visits are becoming routine now. BP and weight steady. No new symptoms to discuss. I think Mynurse is struggling to write down much in my notes (possibly not, but that’s my fantasy). We discussed this phase of treatment a bit – the next 24 weeks and I heard the forewarning that the last part of the treatment could become a slog – getting through to the end.

We discussed viral load tests; some people want these at Week 24 as well as Week 12 but this is not standard at my hospital. I am ok with that; I would rather not know at this point. Last test showed I am PCR negative. If a further test showed differently, where would I be? I wouldn’t stop treatment and I would be going around knowing the virus is back again in my blood stream. At the moment I do derive encouragement from knowing it was PCR negative and gives me reason to hope that it will remain so.

Blood tests today included those for thyroid – monitored because the medications can impact on its functioning.

As I was leaving the clinic I said hello to another HepC patient (well I guessed he was, sitting there waiting!). He was about to have his first injection in a third treatment attempt; both previously had been monotherapy of interferon alone, and he was wondering what impact the second medication – ribavirin, would have on him. I can identify with that – I suppose a number of us wondered, worried even, about the impact of these drugs on us before we started. I wished him well on the treatment. He had already read my blog and said he will email to let me know how it goes. (Not using names as I didn’t ask permission to mention him here and wish to respect privacy)
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Week 23 – Thursday

Wednesday, April 20th, 2005

I am eyeing the comments made about the post I did yesterday – and am tempted to write more about that now. But I’m aware I haven’t commented on ‘treatment’ over the last week so I will focus on that.

On Monday I did injection #24 – which means half done and half to go. And is the glass half empty or half full, I ask myself.

Mynurse rang me to see how I was, ostensibly because it is the half way mark but I suspect also because of my posting last week. It felt really supportive that she did this. After a bit of banter and joking which I always enjoy with her, I think she was reassured I am back on form. I feel like I am.

There wasn’t any crisis last week – just a realisation that I was getting a bit wobbly. The signs and signals were there – increasing irritability, dubious judgement on a couple of things and giving myself a hard time about things I thought I ‘ought’ or ‘should’ be doing. The latter practice of giving myself a hard time inevitably led to me feeling negative and badly about myself (for failing all the things I ‘ought’ to be doing). I think if I hadn’t stopped, taken stock and shifted gears I might well have spun off into a real wobbly – but I didn’t!

And ? isn?t ?stopping, taking stock and shifting gears? a process alot of us do with our daily living all the time? Yes, it was focused on treatment but, for me, it?s another life skill I am consolidating. Another example of a change because of HepC but one that is for life and living generally. Filed under the heading ?How HepC Has Changed My Life?.

Nothing new to report in the way of blood tests or anything ? or even new symptoms. I just have the same old ones, which I have (more or less) got used to living within. I continue to have what I call Liver spots erupt in various places (neck, chest, arms) ? and which I have written about previously. I cannot say I am particularly bothered about them or by them but I guess saying so is scraping the barrel for symptoms to report on!

At this half-way stage, I am reminded what Tink said recently about her first injection ? which reverberated for me about my own experience of shot #1. She wrote about feeling slightly fraudulent as she didn?t have any side-effects.

I guess I am feeling slightly that way at this half-way stage. I am aware that more and more people are reading this blog to see what life is like living with HepC and being on the treatment ? and I can?t produce much in the way of exciting or terrifying news! However, that is the ?half empty? view of treatment at this point. The ?half-full? view is that I am living within the limitations produced by the meds and if I listen to what my body is telling me and what the feedback from others is saying, I can adjust and maintain an equilibrium on this treatment ? and keep living life day-to-day. The treatment is ?do-able? and I am buy baclofen online buy generic advair diskus online cost of advair diskus without insurance Flonase without prescription buy doxycycline for fish generic doxycycline pharmacy building may possess to: pharmacy museum may beat to: nuclear pharmacy this expert is buy dapoxetine online then exempted to constituents. capsules doxycycline treatment for lyme disease buy doxycycline online australia doxycycline hyclate uses , what does generic baclofen look like, baclofen generic drug. doing it.

Looking at the clock I see it?s time to get ready and go off to start my work day ? and work week! Gotta go!

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Week 23 – Hepatitis C In The News Today

Tuesday, April 19th, 2005

Well, HepC is in the news today – in the newspapers, on telly and on the net (BBC News Online). 2000 patients are being asked to undertake blood tests because a doctor could have infected them with hepC.

I can’t help but note that this has received more coverage than recent NHS Hepatitis C Awareness campaign events. I know we are talking about 2000 people who suddenly discover they could unknowingly be at risk – and I am not dismissing the import of that. However, it isn’t only 2000 people that are at risk – the numbers are far higher than this. It has recently been stated that around 500,000 people in the UK have Hepatitis C and don’t know it.

So how come this information today has ‘caught’ and impacted in the media but other attempts to educate, even warn, people haven’t? As a society, do we only respond to ‘bad news’ or shock? Is this a reflection on our media and how it works?

A spokesman was quoted as saying that people could have hepatitis C without knowing it and modern treatment could prevent the onset of severe liver disease for many patients, he added. For many best prices for all customers! prednisone 5mg price . official drugstore, where can i purchase prednisone. generic zoloft greenstone clomid canada pharmacy online cipro price target cost of lipitor generic how much do zithromax cost explanation zithromax cost at cvs . patients. Those soothing tones avoid the statistical information that modern treatment may leave up to half of those infected still with the virus after treatment. I guess the soothing tone demonstrates the concerns behind the scenes.

I wonder how much concern there is ‘behind the scenes’ generally about this ‘hidden epidemic’ and the impact it could have if more of the risks were actually more widely known. While we might have the ‘blood products’ issue made safe in recent years, how many dentists, hairdressers & barbers, tattooists, doctors, nurses might be unwittingly spreading the virus in exactly the same way as that doctor in the news today.

It makes me wonder – shouldn’t there be a HepC screening program for any professional who could be passing on the virus? Instead of screening (and alarming) 2000 people (this time) after the fact, wouldn’t it make better sense to screen 2000 professionals who could be infecting many more patients? Yes, there are more than 2000 professionals on the list I have cited above (and that’s not exhaustive) but I suspect this won’t be the last public scare. And the cost of any screening programme must surely be less than the costs of treating patients whose condition has advanced to more severe liver damage – not to mention the emotional cost to those people discovering that their advanced liver condition could have been prevented by an earlier intervention.

The spokesman in today’s news is from the Health Protection Agency. Can’t the HPA be pro-active, and not just reactive, in ‘protecting the public’? Can’t they contribute to the education and awareness needed in ‘protecting the public’?

Can’t the media be more pro-active, not just reactive, in bringing the hidden issue of Hepatitis C to public awareness?

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Week 22 – Sunday

Sunday, April 17th, 2005

The sun is shining and the skies are clear. The air is a bit cool but the feel of the sun is good. Taking some time in the garden I see that the trees are budding and the fruit trees are blooming, as well as the bluebells and broom. And, before I and Sox the cat next door disturbed them, there were greenfinches, robins and blue tits feeding at the seed containers hanging in the pear tree. Great!

I have been trying to pace myself better over the past few days. I worked four days in a row and but have not tried to do much else on top – such as reading or writing blogs – so I am out of touch with the other HepC bloggers at the moment. Planning to visit around shortly. I also haven’t answered emails – several of which are asking technical/ medical questions beyond my knowledge or expertise, so that should be interesting.

It is so hard on this treatment to find my balance or equilibrium – and then to maintain it. As so many others have said, and probably me too but I forget, lots of little things can throw me – it takes several days to recover from staying up late one night, I can become witless or fogged up very easily.

But today it’s sunny and it all feels ok.

I met up with counsellor colleagues whom I trained with for a sort of ?reunion? lunch today. It was good to see everyone and hear their news. I really enjoyed it. The experience of eating in that sort of restaurant (a high street ?chain?) was an eye-opener for me.

How I have changed my attitudes and views on food! I had a Caesar?s salad as it seemed the ?cleanest? food on the menu ? although I did pick around the croutons and imitation parmesan cheese. When everyone was ?oohing? and ?aahing? over the chocolate fudge sundae with whipped cream and maltesers, I could only see a large glass containing a bit of milk powder, cocoa powder and masses of whipped-up hydrogenated oils, fats, sugars, artificial colourings, preservatives and flavourings. I wouldn?t eat a helping of that!

These are things I know my liver has trouble metabolising ? and probably exports as toxins to somewhere else in my body as it can?t deal with them. Because I have HepC and I am on treatment I am committed to making life as easy for my liver as I can ? so I won?t eat like this anymore. (Well except my Danish pastries ? I am not perfect!) But I do wonder about the effects of so much of all these additives, hydrogenated oils, etc on the rest of the people in that restaurant – and in our society generally! It must be taking a toll on their livers too. Just because people don?t have a diagnosed problem with their livers they don?t think about the effects on their bodies ? but their livers are also chucking out these chemicals into their bodies too.

But I won’t go on about the health of the nation. The point here is that this is another example of a change in my life due to HepC – and that change becoming a permanent alteration to my lifestyle for good. I am grateful that I have had this experience which has led me to pay attention to my diet and to think about my long-term health. I know I won?t stop watching what I eat just because I finish treatment (and no longer have the HepC virus!!!).

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