Experienced a low point last night. My young son said how terrified he is of catching Hepatitis C, es[pecially somehow from me touching food and things. I did my best to reassure him, but the perception, late at night, was very much there.
I'm doing my best to insulate myself at home, especially with teeth cleaning and shaving etc. However, food preparation is a new dimension.
When this is all over I will probably get them tested if only to reassure them.
Saturday, 29 September 2007
Thursday, 27 September 2007
Day 130 (27th September 2007)
The last few days have been intensive, work related. I was away at a conference in the Midlands in the early part of the week and have been extremely busy at other conferences since.
I have had little time to think about my Heptatitis C treatment, although I am remembering to take the two lots of tablets each day and the weekly Interferon injection. I have to much more economical with stairs and walking - I stand on Underground escalators now all the way up instead of walking up.
I keep going at work (which I enjoy very much) but then seem to want to crumble when I get home - but there is always plenty to do at home too - the ferrying, my share of the household chores (which is not these days a very equal share).
I am more irritable at home and have to keep this in check. I am looking for a gap when I can just take sick leave from work and lie down for about two days to catch up on sleep etc.
Otherwise still tired a lot of the time, hating the thought of the injections more and more, want to get rid of the hacking cough which I can just about keep under control when I need to, and shake off the enervating, draining tiredness.
On the positive side, though, I sleep well, any itching is localised to just to one side of my groin area, I can eat whatever I want (that'll have to stop quickly at the end of treatment), I can taste the food and have no metallic after-taste. I am also coping at work. It's like being in a never-never land right now!
I have had little time to think about my Heptatitis C treatment, although I am remembering to take the two lots of tablets each day and the weekly Interferon injection. I have to much more economical with stairs and walking - I stand on Underground escalators now all the way up instead of walking up.
I keep going at work (which I enjoy very much) but then seem to want to crumble when I get home - but there is always plenty to do at home too - the ferrying, my share of the household chores (which is not these days a very equal share).
I am more irritable at home and have to keep this in check. I am looking for a gap when I can just take sick leave from work and lie down for about two days to catch up on sleep etc.
Otherwise still tired a lot of the time, hating the thought of the injections more and more, want to get rid of the hacking cough which I can just about keep under control when I need to, and shake off the enervating, draining tiredness.
On the positive side, though, I sleep well, any itching is localised to just to one side of my groin area, I can eat whatever I want (that'll have to stop quickly at the end of treatment), I can taste the food and have no metallic after-taste. I am also coping at work. It's like being in a never-never land right now!
Thursday, 20 September 2007
Day 123 (20th September '07) Jon's Hepatitis C Treatment
Work in particular has been tough this week, indirectly as a result of the Hepatitis C treatment. The fundamental issue is that I was late for some freelance work - whereas normally I would have worked most of the night to sort it out, I found I could not. After about 1pm a hammer blow hits me and I either fall asleep or have to go to sleep. Of course, the work was late as I find it much more difficult to plan ahead now - I always have but the treatment seems to be accentuating everything.
Otherwise, nothing much to report. The cough is still there, the draining tiredness - which comes on when I walk up stairs and escalators now is still there, and the irritability is very much still there - unfortunately it comes out more in the home situation.
Otherwise, nothing much to report. The cough is still there, the draining tiredness - which comes on when I walk up stairs and escalators now is still there, and the irritability is very much still there - unfortunately it comes out more in the home situation.
Tuesday, 18 September 2007
Day 119 (16th September '07) Jon's Hepatitis C Treatment
After the relief (but trepidation) of the major drop in the viral count after three months, things are back on the flat and somewhat predictable track.
If I could have changed anything it would have been to have my injection on a Tuesday night rather than a Thursday. As it is the Thursday dose hits me on the Saturday and Sunday - I would rather have shared that out between home and work!
If I could have changed anything it would have been to have my injection on a Tuesday night rather than a Thursday. As it is the Thursday dose hits me on the Saturday and Sunday - I would rather have shared that out between home and work!
Thursday, 13 September 2007
Day 116 (13th September '07) Jon's Hepatitis C Treatment
Went to the hospital and the doctor said "do you want the goods news or the good news?"
I had been full of trepidation and when I got to the hospital early had thought of going to the hospital pharmacy to see if they had prepared a monthly prescription for me. But it's like exam results - at the same time I both did and didn't want to know, so I avoided the pharmacy.
Showing me the results of the quantitive tests, I found I had gone down from 12,947,713 iu/ml in a sample taken on 3 November 2006, and that it is now just 11,011 iu/ml. A significant drop and continuation of the treatment for another seven months.
Excellent news, but coming out of the hospital I became more perplexed. My June 2005 biopsy has said my viral load was 230,000 copies/ml.
Useful help came from the web site: www.hcvadvocate.org/hepatitis/factshhets_pdf/VIRALLOAD.pdf
That does the conversion between the previously used measure of copies/ml, and the new standard of International Units. Mine was a HCV RNA test, but there seem to be two types of HCV RNA test - one converts at 1 iu/ml = 5.2 copies/ml; and the other at 3.8 copies/ml. Therefore the 230,000 copies/ml would convert at either 8,740,000 iu/ml (if I have had the Cx HCV RNA test); or 11,960,000 (if I have had the Versant HCV RNA 3.0 test).
I will have to check during my next hospital visit next month for which type of test I actually I had.
Am very relieved - especially because I knew I would have asked for a second quantitative viral load test and was steeling myself quietly to activate Plan B to seek out a patient advocate at the excellent London-based Hepatitis C Trust which helps with appeals.
Am also daunted - in particular the family has to put up with my mood swings for another seven months. There's still a long way to go, so as before I plan to take things forward one day at a time - one foot after the other. It's the only way.
----
On a sad note, I was upset about Anita Roddick's death earlier this week. She had certainly inspired me and she was geared up to really help the Hepatitis C Trust and campaign on its behalf.
I had been full of trepidation and when I got to the hospital early had thought of going to the hospital pharmacy to see if they had prepared a monthly prescription for me. But it's like exam results - at the same time I both did and didn't want to know, so I avoided the pharmacy.
Showing me the results of the quantitive tests, I found I had gone down from 12,947,713 iu/ml in a sample taken on 3 November 2006, and that it is now just 11,011 iu/ml. A significant drop and continuation of the treatment for another seven months.
Excellent news, but coming out of the hospital I became more perplexed. My June 2005 biopsy has said my viral load was 230,000 copies/ml.
Useful help came from the web site: www.hcvadvocate.org/hepatitis/factshhets_pdf/VIRALLOAD.pdf
That does the conversion between the previously used measure of copies/ml, and the new standard of International Units. Mine was a HCV RNA test, but there seem to be two types of HCV RNA test - one converts at 1 iu/ml = 5.2 copies/ml; and the other at 3.8 copies/ml. Therefore the 230,000 copies/ml would convert at either 8,740,000 iu/ml (if I have had the Cx HCV RNA test); or 11,960,000 (if I have had the Versant HCV RNA 3.0 test).
I will have to check during my next hospital visit next month for which type of test I actually I had.
Am very relieved - especially because I knew I would have asked for a second quantitative viral load test and was steeling myself quietly to activate Plan B to seek out a patient advocate at the excellent London-based Hepatitis C Trust which helps with appeals.
Am also daunted - in particular the family has to put up with my mood swings for another seven months. There's still a long way to go, so as before I plan to take things forward one day at a time - one foot after the other. It's the only way.
----
On a sad note, I was upset about Anita Roddick's death earlier this week. She had certainly inspired me and she was geared up to really help the Hepatitis C Trust and campaign on its behalf.
Monday, 10 September 2007
Day 113 (10th September '07) Jon's Hepatitis C Treatment
I am now a third of the way through my treatment still waiting patiently in a sort of never-never land for my hospital appointment on Wednesday morning (12th Sept) when I'll get the viral load results - hopefully showing a double logarithmic decrease in quantity.
To recap on the side effects of the treatment so far:
* It has accentuated certain characteristics I've always had, so that the irritations I have always felt (usually over relatively minor things - I'm more sanguine about big things) are in real danger of turning into rage.
* I am a lot more argumentative at home (although not at work).
* I am a shadow of my former self when it comes to energy - as I keep saying in this blog, doing anything starts to suck the energy right out of me, although I do not have this anywhere near as severe as some people I have met undergoing treatment.
* I get occasional aches and pains in the abdomen and kidney areas but they haven't lasted
* I get very thirsty
* I go to the loo (ie: bathroom) much more and have to get up about three times a night for this.
* I think my reaction times have slowed so I have to drive more carefully.
* I get a bit of brain fog - not remembering names etc - but as far as I can remember I always have had - so I'm not sure about the treatment's impact on this
* I now get an itching, occasionally severe, localised around the groin area
On the positive front:
* I sleep well most nights (apart from having to get up to go to the loo!)
* I am still working effectively -my boss is happy with my work
* I've lost a stone in weight - from 12.5 stone to 11.5 stone
* I am eating well - I just listen to my body which tells me what it wants
I'll add ion the things I've forgotten in a future posting.
In the meantime I'll report back on Wednesday!
To recap on the side effects of the treatment so far:
* It has accentuated certain characteristics I've always had, so that the irritations I have always felt (usually over relatively minor things - I'm more sanguine about big things) are in real danger of turning into rage.
* I am a lot more argumentative at home (although not at work).
* I am a shadow of my former self when it comes to energy - as I keep saying in this blog, doing anything starts to suck the energy right out of me, although I do not have this anywhere near as severe as some people I have met undergoing treatment.
* I get occasional aches and pains in the abdomen and kidney areas but they haven't lasted
* I get very thirsty
* I go to the loo (ie: bathroom) much more and have to get up about three times a night for this.
* I think my reaction times have slowed so I have to drive more carefully.
* I get a bit of brain fog - not remembering names etc - but as far as I can remember I always have had - so I'm not sure about the treatment's impact on this
* I now get an itching, occasionally severe, localised around the groin area
On the positive front:
* I sleep well most nights (apart from having to get up to go to the loo!)
* I am still working effectively -my boss is happy with my work
* I've lost a stone in weight - from 12.5 stone to 11.5 stone
* I am eating well - I just listen to my body which tells me what it wants
I'll add ion the things I've forgotten in a future posting.
In the meantime I'll report back on Wednesday!
Friday, 7 September 2007
Day 110 (7th Sept '07) Jon's Hepatitis C Treatment
Plunged into work - in some ways it's easier when I'm at work. I don't think about the Heptatitis C, and as long as I stay away from controversy (to avoid the rage bubbling over), and as long as I single-task (I find dealing with the unexpected and trying to multitask much more difficult since starting the treatment) things seem to work OK.
I still get a bit irritable at home and am trying to rein that in.
Otherwise, as before I sleep well, no aches or pains, but get tired when I walk uphill - I feel the energy just drain away. I've recently begun to get a bit of "glue eye" in the morning - not much but just enough to struggle for a few seconds to open my eyes. But then at least I am sleeping without any problems.
Must dash to work now...
I still get a bit irritable at home and am trying to rein that in.
Otherwise, as before I sleep well, no aches or pains, but get tired when I walk uphill - I feel the energy just drain away. I've recently begun to get a bit of "glue eye" in the morning - not much but just enough to struggle for a few seconds to open my eyes. But then at least I am sleeping without any problems.
Must dash to work now...
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