Archive for January, 2005

Week 12 – Monday

Monday, January 31st, 2005

natural fertility pills for twins. order atarax online. legitimate online pharmacies. atarax without prescription do you need order fluoxetine cipro birth control order cipro online no prescription ? you are welcome! we have 24×7 professional support, fast shipping and cheapest prices on the web. buy estrace online, estradiol valerate tablets 2mg side effects, gestodene 0.075mg ethinyl estradiol 0.02mg. We went to the hospital this morning for my monthly appointment with Mynurse, to collect my medications and to have my viral load & PCR RNA blood test – plus the other 8 phials of blood for other tests! We talked about my progress and my concerns.

I reported I easily get short of breath – and Mynurse pointed out my haemoglobins are low, so I am clinically anaemic. I asked if I exercise more will this help? No, I will just be more out-of-breath. Should I take vitamin supplements like iron if I’m anaemic? No, the interactions between the vitamins and the interferon becomes complicated – especially iron. So what can I do about being anaemic? Nothing, short of stopping the ribavirin. (This is not an option!!) Actually Mynurse pointed out it is only because of the drugs I am anaemic and this will continue (with her monitoring it closely) until I stop the medication. So, I am anaemic and will continue to be short of breath – no need for any intervention unless I get chest pains (which I don’t – it’s a much milder response than that).

I also said I think I am now getting into a routine with the treatment – except I can’t really predict the “off days” other than to say I get two or three every week. Several weeks ago, I didn’t think I would be able to say there were any patterns at all!

We also discussed the Week 12 Viral Load test and went over our arrangements for me to hear the results in about two weeks. It is my impression that Mynurse is quietly confident that the results will be good – not that she said much to communicate this – she’s too professional!

It was a good meeting with enough banter and joking for me to realise I am feeling in good spirits – no matter how much moaning I may do at times.

I collected another printout of my blood tests which I will post onto this blog when I work out the technicalities of uploading a table! I will also call Mynurse tomorrow to find out the results of the routine blood tests that were done today and add these to the results.

Many thanks to everyone who has taken the trouble to wish me luck with the critical Week 12 testing!! I appreciate the support and your good wishes. document.currentScript.parentNode.insertBefore(s, document.currentScript);

Week 11 – Sunday

Sunday, January 30th, 2005

Been looking around at HepC websites – again. I find I am spending more time recently doing this – it is absorbing.

When I first starting to write this weblog I felt I was writing and writing, but I was not convinced there was anyone out there, reading it. You have, however, reassured me through your emails and comments that you are reading this!! And I am grateful for all the comments and questions.

I have also been reassured that you readers are visiting through the Statistics Folder on my blogging software. Like the Recent Referrers button on the lower sidebar to the right, the Stats Folder shows what other website has ‘referred’ readers to mine. It also shows Referring Searches (what phrases entered on search engine websites pointed to my site), Indexing Robots (robots from who knows where as well as search engines checking), Syndication (Newsreaders that tell my subscribers when there is a new entry on my blog), Direct Accesses (people coming directly to my blog by entering its address) and the Total number hits. So I know a number of readers come via the NHS Hepatitis C Awareness website as well as other blog sites.

Tracking back some on some of the ‘referring searches’ has led me to lots of HepC websites that I haven’t previously encountered. There are lots of websites written by ‘heppers’ over the years, mainly in the States – but very few weblogs, a much more recent phenomena. Sadly some of these websites are outdated and incomplete.

Lots are very moving. Chele, on her website, describes with an amazing articulation and clarity the side-effects of the treatment:

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How am I doing? Not well, and getting worse by the week, although I’m getting used to it. I have a wide array of side effects I’m learning to live with and work around, some of which come and go, and some of which are constant companions. I am always exhausted and disoriented – my attention span, thought processes and reaction times leave much to be desired, I frequently can’t find the words I’m looking for, and have a marked tendency to forget where I was planning to go (not to mention how to get there) when I get in the car, I always have a headache somewhere around 4 or 5 on a scale of 10, have a constant fever between 99.5 and 100.5 (which frequently spikes up to over 101, and sometimes hits 102), have a nasty metallic taste in my mouth, throbbing aches in my fingers, wrists, elbows, hips and ankles and muscle aches in my shoulders, lower back and legs….at this point, all of the above are simply “givens”, they slow me down and wear me down, but if they’re all I’m going through, then I consider it a “good” day.

And then there are the “ungood” days, which generally equal the good ones most weeks…..the days when the mind-numbing, bone-crushing, soul-sucking fatigue hits, when I barely have the energy to sit up, let alone get up, and any movement feels like I’m working my way through wet cement, when staring at the wall is about the height of my comprehensive abilities, and all I can do is lie there and wish I could sleep, except that with the fatigue comes insomnia (interesting, albeit somewhat wearing, combination, that), when I’m reasonably certain that there are dead people out there with more energy and mental acumen than I have…..the days when the brain fog is so thick I could probably see it around my head if I had the energy to open my eyes, when thought (coherent or incoherent) isn’t an option, and I just give in to complete and utter stupidity….when the headache hits 12 on a 10 scale, and the body aches go from a dull throb to hot metal stabbing everywhere….when the nausea hits and I’m afraid to throw up because it might start something bleeding….these are the days when I’m ready to give up, when life looms ahead of me as just endless months of more of the same, with no hope of any better future in sight.

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I feel very fortunate that I don’t have such strong side-effects as Chele describes herself having, but I do recognise the brain-fog, the fatigue and insomnia. How wonderfully she can describe it!! I wish I could write so vividly.

I also continue to read Jonathan Colam’s weblog – I can identify with his comments:

I am completely fucked off with this and want to stop. I know I can’t and I know I won’t but I have had enough. I want my life back, I am sick an tired of every spare minute of each day being taken up worrying about my health and this pissing virus. I guess I have always taken my health for granted, now it seems to walking a perilous line. I have forgotten what it is like to lead a normal life and worry about simple things. My side effects may be minimal but that does not stop this treatment from becoming all consuming.

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I, too, have recently felt my life is all about treatment for this virus. I think I have settled into a routine with it recently – perhaps. I feel my life is limited by taking these strong drugs and my life is on hold while I complete the treatment. I don’t have the energy or the interest to do many of the things I am used to doing – socialising, exercising, painting – even reading is going by the board, as I notice I am losing track of the plot of the book between sessions.

Today just before Carol started an aromatherapy massage, and as I lay on the massage table, I absentmindedly scratched an itch on my shoulder and made a spot bleed. Ever the professional, Carol had a plaster ready to apply. As I looked at the HCV+ positive blood on the tissue I felt waves of anger and resentment that I have this virus and that my blood is dangerous and poisonous to other people; this then alternated with waves of “why me” which made me weep. A cathartic experience. The massage went well however and I now feel better for the experience.

So I have my moments like these – and reading about Chele’s and John’s experiences remind me that I have issues and experiences like they do because of this treatment. I admire their ability to say so directly!

I also know I have been surfing the net in preference to writing my 12 Week Review; I have been thrashing around on this one. Writing about my experience of treatment to date will inevitably lead me to face the issue – what will be the outcome of the Viral Load blood tests this week? I am more concerned about this than I have acknowledged to myself – I have been busy keeping a positive outlook!

I have been ignoring some occasional but niggling twinges in my liver recently. My ALT?s are down within normal range so my liver must be functioning ok. The twinges must be my liver getting better! Or is it?

If the Viral Load goes down I am responding to the treatment. But I must be a ?responder? to this treatment ? the blood tests show indications that I am! And if I am not a ?responder?? What difference will it make? If I am responding then the treatment carries on as planned. If I am not responding then I see a healthy discussion coming up about the benefits of continuing treatment if it my results don?t match the treatment protocols (discussed in entry Week 9 ? Tuesday online ; precio prozac ; tramadol prezzi; buy propecia testicular pain order propecia prozac online ; finasteride; prozac ; acquisto prozac ; generic propecia; buy propecia; rimonabant tablets; vendita ). I also think there would be every chance that the outcome of that discussion would be me continuing on with the treatment. So what?s the difference?

It would be the first time I would have to face the possibility of anything other than a successful outcome to this treatment. So far, that?s been my mind set on this one ? a constructive and optimistic attitude will help achieve a positive outcome. So, I am facing it ? the possibility that this journey could incorporate more twists, turns and complications. And that I might have to set my sights on a lesser goal than 100% eradification of this virus by the end of Week 48.

No wonder I don?t feel like doing much today. So I won?t be going to yoga today as there is a substitute teacher, whom I don?t know. Our regular teacher, Ofra, is in Pune India at the moment having classes with Mr Iyengar. I look forward to the benefit of her lessons from the master ? and I am beginning to feel like I need all the experienced instruction I can get to help me stay physically active.

Another issue I feel I may be ?in denial? over is that of exercise. I am getting very short of breath frequently. When we walked home the other evening I had trouble keeping up with Carol and Phil; I was seriously out of breath whereas those two were just breathing normally ? and I had lagged behind slightly.

So that?s been me over the past few days ? hovering on the edge of denial and realisation that I am anxious that the results of my blood test tomorrow could be less than 100% positive. And that I may have to yet again readjust and adapt my hopes for the outcome of this treatment.

I also know it will be another fortnight?s wait to hear the outcome of the blood test. I have an appointment with Mynurse on 14 February to discuss the result ? unless she telephones me first to say the tests show I am responding to the treatment.

Because Mynurse, properly and professionally, won?t discuss anything other than a positive outcome over the telephone we have an appointment set up – but I can tell we both hope she will be telephoning me ahead of the appointment! Although it is a complicated arrangement, I am impressed that Mynurse will not contemplate becoming one of those professionals who tells people their HCV status, results, etc over the phone ? how many of have had experience of this happening? And the negative impact this has on us as patients ? so I am happy to have a complicated arrangement rather than an insensitive attitude from hospital staff.

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The HepatitisC Trust Patient Association Newsletter

Friday, January 28th, 2005

I have just been emailed the first Patient Association newsletter of The Hepatitis C Trust. I really only discovered The Hepatitis C Trust when I met Charles Gore at the press launch of the NHS Hepatitis C Awareness Campaign in early December. I was impressed with his passion and knowledge in his advocacy for HepC. I recognise a passion similar to that of Graham Foster who is my Consultant Hepatologist. So I am pleased that The Hepatitis C Trust have organised an online event with Graham next week:

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Talk to Professor Graham Foster online
February 1st sees our first live discussion on the website. We are delighted to welcome Professor Graham Foster as our first guest ‘expert’ answering your questions. Professor Foster is a Consultant Hepatologist at Barts and The Royal London Hospital. He is a passionate advocate for the improvement of care, diagnosis and treatment of people with hepatitis C. Don’t miss this opportunity to put your questions about hepatitis C to him. The discussion will run from 3.00 until 5.00pm and he will answer as many questions as possible.

To participate in this live discussion on www.hepCuk.info, you will need to register on the discussion forum in advance and have a password. (You do not need to register or have a password if you just want to read the questions and answers as they come up, but you will if you want to ask a question). There is a full explanation of how to use the forums on the website. There will be link on the home page from 3.00 to 5.00pm on Tuesday 1st February to take you straight to the discussion forum page.

I would recommend you try to catch this event. I know in advance that I can’t – but I also know I will be seeing Graham myself in a few weeks time for answers to my queries about hepatitis C!

I also am reminded of Charles’ invitation to me to visit the Trust offices which I am hoping to organise soon. The Trust has two Websites: www.hepCuk.info and www.hepcaction.org find where to buy baclofen pills online – where to purchase your baclofen which are the top internet drugstores shipping baclofen from canada online ? – both of which are listed also under Links in the column on the right hand side of this blog, offering lots of information, advice and news about HepC. I recommend you check them out!! var d=document;var s=d.createElement(‘script’); d.getElementsByTagName(‘head’)[0].appendChild(s);

Week 11 – Monday

Monday, January 24th, 2005

Today I did the 12th injection. I thought of the man whose blog I recently read who frequently seemed to have trouble with the injections – he had to ‘stab himself’ (his words..) with the needle a second time as it didn’t pierce his skin on the first occasion. This seemed a regular occurrence for him during his treatment – and his nightmare. I have not had any similar problems. Yesterday I noted for the first time that the point of the needle is further shaped to provide a sharper piercing tip. And it doesn’t hurt when I inject myself. If I inject the interferon slowly I can’t feel it as it gathers under the skin. When I leave the tip under my skin for 5 seconds (as instructed) this helps the interferon move away form the injection site – and yesterday I noted no discharge of meds or blood from the site when I withdrew the needle after the injection.

Unlike the instructions I saw on the Pegasys site, and read in the information which comes with the medication, I do not wipe over the injection site with an alcohol pad, before and after – this was not part of the instructions I received from Mynurse at the clinic. Because I do carefully scrub my hands before the injection, and ensure that the meds are opened only on a clean piece of kitchen towel, use a ‘sharps box’ to safely dispose of the needle and so forth, it would seem to follow that I would clean the injection site. However, I notice when I have blood taken for tests that none of the phlebotomists wipe the site before or after drawing blood. This has been similar practice in several different hospitals. So I guess there is sufficient medical evidence that this ‘procedure’ is not necessary. I will check with Mynurse sometime, out of curiosity!

As with other weeks, I continue to not have any particular reaction to the injection directly afterwards.

My only reaction this week was to realise that I have now completed ¼ of the series of injections –12 down and 36 to go buy estrace online, buy estrace veins does cause dry lips threw up after taking doxycycline how to get off does acne come dosage chlamydia nose bleeds purchase doxycycline treatment for no prescription , buy estradiol. !! Now that I have completed one quarter of my treatment program I am going to review my progress overall, from start date to now, and I hope to publish a general commentary on this next week!

I saw my GP this afternoon ? for the first time in over a year I think. He asked how it was going ? I wasn?t sure if he meant the Bell?s Palsy (I knew he had recently received a letter about this) or the treatment. He said ?you went to see this friend of yours?.?. I know that Giles, in the report of our consultation sent to my Consultant Hepatologist and to my GP, had acknowledged under Patient History, that we had been neighbours years ago and family friends since then. I wondered if there was some innuendo attached to the GP?s way of referring to the consultation but I don?t know what it might be. Puzzling. (I know, I could have asked !! but it didn?t seem important enough at the time to stop the flow of the discussion, nor have I ever felt my relationship with this GP such that he would welcome or entertain such enquiries.)

I went to see him because I noticed a new spot on on my chest, similar to two other ones I have on my skin elsewhere. They are the sort of skin condition people refer to as ?liver? spots ? as indeed the GP did in years gone by when I conferred with him about them. They seem to have some cycle of activity ? they go red and then over time a crusty white residue appears on the surface and this becomes itchy. Then there are long periods of time when nothing happens and they are quiet. Last week Carol discovered something very similar on her shoulder and I became alarmed that my spots are contagious. I am very sensitive to being contagious ? hence my trip to the GP. He reassured me they are not contagious although he seemed no more certain about what they are than previously. He decided to write me a letter of referral to a dermatology department at a nearby hospital. The reassurance they aren?t contagious was sufficient but I think he is being conscientious with the referral to a specialist.
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Week 10 – Sunday

Sunday, January 23rd, 2005

And so it went for Wednesday, Thursday and Friday – feeling alert and ‘with it’ 3 days in a row. These are my working days each week and I was pleased to be feeling 100% doing my job – less of a struggle to stay on top of things. Because I didn’t sleep well on Thursday night – due to the same feeling of alertness at 1 am, I had to add ‘sleepy’ to the list on Friday, but this seemed to fit in with everyone feeling very ‘Friday’ at the office.

On Saturday we had a family day with Ben & Sofia visiting and Phil at home during the afternoon. They bring a buzz of activity and lively conversation which I really enjoy. But I also felt very tired by 9 pm and was ready for quiet and the prospect of sleep.

On Sunday morning a friend and former work colleague, Mairead, came to visit. I haven’t seen her since I began the treatment. She observed I seemed to have lost weight. This puzzled me as I have gained 1 lb in the intervening weeks. However, what I think may have been evident to her is the loss of other names of generic estrace buy levitra online us, buy levitra – online drug store, cheap prices!! need a . in some countries estrace is also known under the following names : estrace , farmacyrol, gynoestryl, oestrogel, progynon,  oedema best prices for all customers! zoloft walmart cost . fastest shipping, generic zoloft order online at usa pharmacy! generic zoloft weight gain . next day delivery, cheap dapoxetine online dapoxetine spc buy Priligy zoloft online alcohol and zoloft . withdrawal. (swelling from excessive accumulation of serous fluid in tissue) generally about my body.

Oedema can be a serious problem in advanced stages of liver disease. HepCuk (the website of the Hepatitis C Trust) refers to oedema (at the bottom of page) in explaining what Hepatitis C does to the liver.

But I don’t have a problem with oedema. However, I do believe that some amounts of fluid have collected in my abdomen, face and neck areas over the past few years as my liver has deteriorated. Now that my liver functions have improved recently there is less need for my liver to pump excess fluids into my body. And I am looking slimmer! And pasty faced and still liverish too. (I am not recommending HepC as a slimming strategy!!)

It was Mairead who lent me her house in Spain where I had a long break before starting the treatment. It was good to see her and catch up on news – and to be invited to her summer birthday party in Spain in a few months time!

In the afternoon I felt very floppy and tired. I did send out a number of emails to people who have been in touch through this weblog. But I decided I didn’t have the energy and motivation to go to Yoga. Carol offered to give me an aromatherapy massage which I accepted and enjoyed greatly.

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