I feel like a lost soul today. I know its is probably just the drugs but its a horrible feeling. A mixture of depression and hopelessness and a general feeling of "what the feck". Its the first time since being diagnosed that I have actually considered there is a chance that things may go pear shaped and, if things do go pear shaped then I dont have time on my side. This is a big reality check. Not wanting to sound over dramatic but its kinda scary to question your own mortality....and questioning it is what I'm doing a lot of. I'm scared for my kids, especially my youngest daughter who seems especially close to me at the moment. The eldest is a little more mature but I still worry for her. I havent told them about the hep....how the hell do i explain something like that to an 11 and 14 yr old? I think they can sense something isn't right and several times over the last week or so they have asked if I am ill. Maybe I should say something but I dont know where to start. They are both at important stages of their lives and the last thing I want to do is burden them with extra worries or baggage.
I really need to try and rationalise my thoughts and put the whole situation into perspective. It would be easy to just crawl into a hole and feel sorry for myself but I cant allow myself to do that. The house is a total tip at the moment which probably doesnt help. The problem is when I try and do any housework I just end up wandering aimlessly about not knowing what I should be doing...quite amusing really. Well, my task for today is to just bloody well get it sorted. I'm gonna scrape every ounce of energy I have and get the house looking spick and span before my youngest turns up this afternoon. Surely given the chance, positivity will always win?
Tuesday, 22 April 2008
Monday, 21 April 2008
A Mixed Bag
Well the last week or so has been a bit of a mixed bag of news and events. No significant sides from the meds apart from a degree of fatigue, general lethargy and a overall feeling that my body is becoming saturated with these chemicals. The riba rash was becoming a bit of a problem but a visit to the GP resulted in steroid cream, anti-histamines and a general moisturiser. I've used the steroid cream once and then just the moisturiser...seems to have done the job.
On tuesday, I found out my genotype at long last....Genotype 3. In many aspects this has got to be good news; certainly a lot better than the geontype 1 I had been preparing myself for. Firstly if all goes to plan the treatment length will be only 24 weeks...worst case scenario is that I dont obtain UND by week 4 and then I'm 99% sure my consultant will increase treatment length to 48 weeks. Secondly, genotype 3 is often reported to be easier to treat than genotype 1. I have my doubts here and believe this is an oversimplification. Genotype 3 is certainly easier to treat if you get the magical UND by week 4. If you dont and have borderline cirrhosis like myself then you may as weel be looking at a genotype 1. I guess there is little point worrying about all this at the moment; just have to wait for the 4 week PCR.
My blood chemistry is the other critical aspect at the moment. I've just had a long conversation with my consultant before he jets off to Milan (43rd EASL conference) and he has left me in no doubt as to the precarious position I'm now in. I have begged and begged for rescue drugs but unfortunately these have not been forthcoming yet. I think he will eventually prescribe them but he would rather try a slight dosage reduction first. A point I vehemently disagree with.
The bloods of most concern are my haemoglobin and neutrophils. My haemoglobin levels have dropped to 9.5 but despite these low values I feel surprisingly OK. A little bit faigued by the afternoon and down-right knackered by mid evening but still living a fairly normal life. I have few other side effects from the anemia (no high pulse rate or palpitations) so neither myself or my consultant are too worried. He has recommended that I drop my riba dosage to 600 mg/day to which I replied "bollox". I have voluntarily reduced to 1000 mg but am not going to drop further until my haemoglobin drops below 8.5; at which stage I will lower only to 800 mg. Of more concern are my neutrophils levels which have dropped to 0.75. This is getting close to the danger zone but more worrying is the fact that they have got so low in only 3 weeks. Another week or so and they could be down below 0.4.
In the absence of being given rescue drugs I am going to have to play a fairly dangerous balancing act here. I think I may get my bloods drawn a day early this week so that I have the results before I have to do my next interferon injection. At least then, any action I take will be an educated risk. My consultant has recommended that if my neuts stay above 0.7 then to take the full 180 mcg interferon injection. If they fall to between 0.5 and 0.7 then to cut my interferon dose to 135 mcg and if they have fallen to below 0.5 then to skip an injection. I dont think I have much choice but to push these limits a bit lower. In fact I think I will inject the full amount; the only exception being if I fall below 0.4 and then I will really have to think about things long and hard.
My 4 week PCR blood will also be taken this week and the results are going to be critical. My consultant is totally on the ball and understands the importance of these results both in future treatment management and the possible use of rescue drugs. He says we can have the results with 10 days....now I assume that will be 10 working days!
Well, no apologise for the boredom level or lack of humour in the above. Decisions made in the next few days regarding dosage and tx management may have a profound effect on my future and chances of SVR..... and thats all I thinking about at the moment.
On tuesday, I found out my genotype at long last....Genotype 3. In many aspects this has got to be good news; certainly a lot better than the geontype 1 I had been preparing myself for. Firstly if all goes to plan the treatment length will be only 24 weeks...worst case scenario is that I dont obtain UND by week 4 and then I'm 99% sure my consultant will increase treatment length to 48 weeks. Secondly, genotype 3 is often reported to be easier to treat than genotype 1. I have my doubts here and believe this is an oversimplification. Genotype 3 is certainly easier to treat if you get the magical UND by week 4. If you dont and have borderline cirrhosis like myself then you may as weel be looking at a genotype 1. I guess there is little point worrying about all this at the moment; just have to wait for the 4 week PCR.
My blood chemistry is the other critical aspect at the moment. I've just had a long conversation with my consultant before he jets off to Milan (43rd EASL conference) and he has left me in no doubt as to the precarious position I'm now in. I have begged and begged for rescue drugs but unfortunately these have not been forthcoming yet. I think he will eventually prescribe them but he would rather try a slight dosage reduction first. A point I vehemently disagree with.
The bloods of most concern are my haemoglobin and neutrophils. My haemoglobin levels have dropped to 9.5 but despite these low values I feel surprisingly OK. A little bit faigued by the afternoon and down-right knackered by mid evening but still living a fairly normal life. I have few other side effects from the anemia (no high pulse rate or palpitations) so neither myself or my consultant are too worried. He has recommended that I drop my riba dosage to 600 mg/day to which I replied "bollox". I have voluntarily reduced to 1000 mg but am not going to drop further until my haemoglobin drops below 8.5; at which stage I will lower only to 800 mg. Of more concern are my neutrophils levels which have dropped to 0.75. This is getting close to the danger zone but more worrying is the fact that they have got so low in only 3 weeks. Another week or so and they could be down below 0.4.
In the absence of being given rescue drugs I am going to have to play a fairly dangerous balancing act here. I think I may get my bloods drawn a day early this week so that I have the results before I have to do my next interferon injection. At least then, any action I take will be an educated risk. My consultant has recommended that if my neuts stay above 0.7 then to take the full 180 mcg interferon injection. If they fall to between 0.5 and 0.7 then to cut my interferon dose to 135 mcg and if they have fallen to below 0.5 then to skip an injection. I dont think I have much choice but to push these limits a bit lower. In fact I think I will inject the full amount; the only exception being if I fall below 0.4 and then I will really have to think about things long and hard.
My 4 week PCR blood will also be taken this week and the results are going to be critical. My consultant is totally on the ball and understands the importance of these results both in future treatment management and the possible use of rescue drugs. He says we can have the results with 10 days....now I assume that will be 10 working days!
Well, no apologise for the boredom level or lack of humour in the above. Decisions made in the next few days regarding dosage and tx management may have a profound effect on my future and chances of SVR..... and thats all I thinking about at the moment.
Saturday, 12 April 2008
Injection #3
Same old routine this week. No major side effect to speak of up to the 3rd shot. Had the weekly bloods taken on thursday lunchtime after which I took injection #3. Seemed a bit more of a psychological batle to stab myself this week but with a bit of gentle persuation I got on with it. Have started on the other side of my stomach now and it just didnt feel as intuitive injecting there. The rash from the first injection came up like a gorilla's love bite but the rash on the second site doesnt seem quite so big. Rash number 3 is just starting to appear (2 days post injection) and looks like its going to be the same size as #2.
Again, didnt get any noticeable sides after the last injection....maybe slightly cold and shivery but nothing that warrented any intervention. Sides seem a little more noticeable today but I think that may all be in my head. Got my week 2 blood results back yesterday and my haemoglobin is still dropping fast. Its got me really worried and I think it is this that is accentuating any minor sides I may have.....hands are bloody itchy though but again is probably stress related and hopefully the mind will win this battle.
Emotionally I also seem to be all over the shop. My biggest fear is that my so called treatment team, who seem as good as bloody useless at the moment, will ask me to reduce my medication dose. That would be terrible at such an early stage.
Anyway my bloods to date
----------------27/3/8 (baseline)-------3/4/8 (week 1)-------10/4/8 (week 2)
ALT-------------104-------------------87---------------------79
Bilirubin---------14--------------------29---------------------27
Neuts------------2.41-----------------1.39--------------------1.11
RBC-------------4.04-----------------3.88--------------------3.35
Hgb--------------13.6----------------12.1---------------------10.7
WBC-------------5.17-----------------4.09--------------------4.36
Plates------------130-----------------112---------------------138
Again, didnt get any noticeable sides after the last injection....maybe slightly cold and shivery but nothing that warrented any intervention. Sides seem a little more noticeable today but I think that may all be in my head. Got my week 2 blood results back yesterday and my haemoglobin is still dropping fast. Its got me really worried and I think it is this that is accentuating any minor sides I may have.....hands are bloody itchy though but again is probably stress related and hopefully the mind will win this battle.
Emotionally I also seem to be all over the shop. My biggest fear is that my so called treatment team, who seem as good as bloody useless at the moment, will ask me to reduce my medication dose. That would be terrible at such an early stage.
Anyway my bloods to date
----------------27/3/8 (baseline)-------3/4/8 (week 1)-------10/4/8 (week 2)
ALT-------------104-------------------87---------------------79
Bilirubin---------14--------------------29---------------------27
Neuts------------2.41-----------------1.39--------------------1.11
RBC-------------4.04-----------------3.88--------------------3.35
Hgb--------------13.6----------------12.1---------------------10.7
WBC-------------5.17-----------------4.09--------------------4.36
Plates------------130-----------------112---------------------138
Monday, 7 April 2008
Injection #2
Injection day #2 came and went last thursday and brought no unexpected surprises. I had decided on two things before I took the injection. Firstly I was going to do the injection early on in the afternoon, just after lunch. Most people I think tend to take their shot later in the evening and then head off to bed to sleep throught the dreaded fluey sides....lets just say I'm keen to get on with this virus slaying! Secondly, I was going to do the injection without pre-dosing with paracetamol and only take them if and when the sides became intolerable. This may seem like a crazy approach but not having been effected by the second peak in week 1 I was confident I wouldnt suffer too much and I was keen to see what the "baseline" effects of the interferon injection would be with no paracetamol in my system. Sure enough there were no physical sides at all.
I am the first to admit that to date I appear to have been extremely lucky and at the moment fall within the 20% of people that show minimal or no sides. Fingers crossed that I fall into the 50% of people that clear the virus.....on that note I still havent got my genotype result back.
The minimal sides to date have been mainly mental, although I do feel a degree of fatigue especially later in the afternoon. Before tx I was preparing the veg plot and could spend a 4 hour session just digging. Last friday I managed 40 minutes of digging and was knackered.....and those spuds really need to go in! My thought pattern seems to be all over the shop at the moment and this makes structured rational thinking quite hard at time. I guess this is the ineviteable fogginess which to be honest, I have suffered from to varying extents for years. Just seems to be more intense at the moment but that may just be psychological. It doesnt help that work commitments, which require a degree of cerebal dexterity, are mounting up. I've managed 3 hours today so thats a start. Affected by a small wave (well, at the time felt more like a tsunami) of depression/sadness at the end of last week. Not sure if it was tx related or just the overall realisation that I'm pretty much on my own during this tx journey. I have told friends and family and I know I have their full support. But I also know that a lot of skeletons and ghosts are going to be brought to the surface during tx and that still scares the hell out of me.....dont get me going on that now though!
Blood wise, most things are doing what I would have expected. Red and white blood cells, platelets and neutrophils have all dropped more than I would have liked but its impossible to know at this stage if this is going to be a problem. The liver enzyme ALT is dropping which shows that the on-going attack on my liver is slowing. Hopefully this means those buggers are having a tough time. Bilirubin has shot up which is a bit of a concern but probably related to the increased destruction of red blood cells as a result of the ribavirin.
Mainly for my reference but also for others starting tx and wanting to compare my important bloods were
----------------27/3/8 (baseline)-------3/4/8 (week 1)
ALT-------------104-------------------87
Bilirubin---------14--------------------29....ouch!
Neuts------------2.41-----------------1.39
RBC-------------4.04-----------------3.88
Hgb--------------13.6----------------12.1
WBC-------------5.17-----------------4.09
Plates------------130-----------------112
I am the first to admit that to date I appear to have been extremely lucky and at the moment fall within the 20% of people that show minimal or no sides. Fingers crossed that I fall into the 50% of people that clear the virus.....on that note I still havent got my genotype result back.
The minimal sides to date have been mainly mental, although I do feel a degree of fatigue especially later in the afternoon. Before tx I was preparing the veg plot and could spend a 4 hour session just digging. Last friday I managed 40 minutes of digging and was knackered.....and those spuds really need to go in! My thought pattern seems to be all over the shop at the moment and this makes structured rational thinking quite hard at time. I guess this is the ineviteable fogginess which to be honest, I have suffered from to varying extents for years. Just seems to be more intense at the moment but that may just be psychological. It doesnt help that work commitments, which require a degree of cerebal dexterity, are mounting up. I've managed 3 hours today so thats a start. Affected by a small wave (well, at the time felt more like a tsunami) of depression/sadness at the end of last week. Not sure if it was tx related or just the overall realisation that I'm pretty much on my own during this tx journey. I have told friends and family and I know I have their full support. But I also know that a lot of skeletons and ghosts are going to be brought to the surface during tx and that still scares the hell out of me.....dont get me going on that now though!
Blood wise, most things are doing what I would have expected. Red and white blood cells, platelets and neutrophils have all dropped more than I would have liked but its impossible to know at this stage if this is going to be a problem. The liver enzyme ALT is dropping which shows that the on-going attack on my liver is slowing. Hopefully this means those buggers are having a tough time. Bilirubin has shot up which is a bit of a concern but probably related to the increased destruction of red blood cells as a result of the ribavirin.
Mainly for my reference but also for others starting tx and wanting to compare my important bloods were
----------------27/3/8 (baseline)-------3/4/8 (week 1)
ALT-------------104-------------------87
Bilirubin---------14--------------------29....ouch!
Neuts------------2.41-----------------1.39
RBC-------------4.04-----------------3.88
Hgb--------------13.6----------------12.1
WBC-------------5.17-----------------4.09
Plates------------130-----------------112
Friday, 4 April 2008
The Rest of Week 1
Well, as I write this, I have already entered week 2 so true to my usual self, I am already falling behind and becoming disorganised...I promise I'll try harder, honest. The second half of week 1 has been surprisingly free of sides. Not what I had expected at all. The second phase of the interferon never really materialised and apart from a slight cough, the ribas dont seem to be doing much - from a sides point of view that is, lets hope its putting an almighty big spanner in the viral replication works. The eczema (notice this week I can spell it - thats something I apologise for, my spelling is cr&p) has subsided and I havent been bothering to put anything on it.
The health service appears to be playing hot potatoe with me and I feel I am being passed backwards and forwards between consultant and GP with neither really wanting to take responsibility for my treatment. A little bit worrying when you consider the potential dangers involved but I'm hoping I have amassed enough knowledge to be able to self monitor myself. I have no real problems with this approach, in fact it puts me in the driving seat which I think could be of benefit down the line.
I had an appointment with my GP on tuesday and I've got to admit I must have bored the pants off him - 40 minutes of boring! The said hot potatoe had been thrown firmly towards my GP and the consultants were expecting him to monitor me and only report back to them if there was a problem. Unfortunately, there are no standard guidelines to tell GPs how to monitor interferon and ribavirin treatment so he doesnt have a clue what is really expected. I thought it wise to bring him up to speed! I had hoped that I may have succeeded but no such luck. Turned up for my weekly blood test on Thursday and the request forms authorised by him were all wrong. No Full blood count, no LFT but a "gold ticket" PCR form. Thank you very much - I'll have that for a later date. It was a joke; in the end I had to tell the phlebotomist what tests I wanted. Will be heading up to the medical centre in an hour or so to see if the results are back. They're going to be interesting because of the lack of sides, I'm sure they've given me syringes of water and a tub of smarties.
Well, not a lot to add to the rest of week 1. As I said, its been fairly uneventful. I really should have made more of an effort on the work front but there is always next week. Probably not the best attitude when you're running your own business but there have been more important things on my mind. I also blame the lack of work on a small group of nomadic friends I have made. For anyone that stumbles across this who has been diagnosed with HCV or for those it effects in other ways can I recommend a superb UK based support forum. No medical experts so medical advice should always be checked out but full of lovely warm supporting people who are at various points along the long and windy road of HCV treatment.
http://hepcforum.co.uk/phpBB3/index.php
The health service appears to be playing hot potatoe with me and I feel I am being passed backwards and forwards between consultant and GP with neither really wanting to take responsibility for my treatment. A little bit worrying when you consider the potential dangers involved but I'm hoping I have amassed enough knowledge to be able to self monitor myself. I have no real problems with this approach, in fact it puts me in the driving seat which I think could be of benefit down the line.
I had an appointment with my GP on tuesday and I've got to admit I must have bored the pants off him - 40 minutes of boring! The said hot potatoe had been thrown firmly towards my GP and the consultants were expecting him to monitor me and only report back to them if there was a problem. Unfortunately, there are no standard guidelines to tell GPs how to monitor interferon and ribavirin treatment so he doesnt have a clue what is really expected. I thought it wise to bring him up to speed! I had hoped that I may have succeeded but no such luck. Turned up for my weekly blood test on Thursday and the request forms authorised by him were all wrong. No Full blood count, no LFT but a "gold ticket" PCR form. Thank you very much - I'll have that for a later date. It was a joke; in the end I had to tell the phlebotomist what tests I wanted. Will be heading up to the medical centre in an hour or so to see if the results are back. They're going to be interesting because of the lack of sides, I'm sure they've given me syringes of water and a tub of smarties.
Well, not a lot to add to the rest of week 1. As I said, its been fairly uneventful. I really should have made more of an effort on the work front but there is always next week. Probably not the best attitude when you're running your own business but there have been more important things on my mind. I also blame the lack of work on a small group of nomadic friends I have made. For anyone that stumbles across this who has been diagnosed with HCV or for those it effects in other ways can I recommend a superb UK based support forum. No medical experts so medical advice should always be checked out but full of lovely warm supporting people who are at various points along the long and windy road of HCV treatment.
http://hepcforum.co.uk/phpBB3/index.php
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