Well the start date was 27th March 2008 and I duely turned up at the hospital 15 minutes early for my midday appointment. I was meeting with the registrar who was going to run through the ins and outs of treatment and then oversee the first injection. I hadnt seen the consultant since my first meeting back at the beginning of february so I also had a long list of questions. The formalitites took almost an hour and once the baseline bloods had been taken I was ready to have my first shot of interferon at about 1.40 pm. One of the nurses offered to do the sub-cutenous injection and being a bit of a wimp, who was I to refuse. Thinking back, it probably would have been better if I had done it myself. The injection didnt hurt and I think I could have done with the practice at self-administation. I really am dreading having to do it next week. I have visions of me wildly stabbing away at my stomach whilst looking in the other direction....a recipe for disaster me thinks! All quite ironic really, but thats another story.
I had taken 2 paracetamol about an hour before the injection so really wasn't sure what to expect. The nurses kept me at the hospital for an hour after the injection to check for any anaphylactic reaction. All went fine and they set me free just after 2.30 pm. The afternoon was uneventful, did some shopping on the way home and then got out into the garden and planted some veg....a kinda 2 fingered statement to the pesky virus. Felt fine until about 7.00 pm by which time the dreaded flu like symptoms had started. Two more paracematol, followed by a little diner and my first 3 riba pills and all felt well again. I got an early night and was in bed by about 10 ish. Must have dropped off quite quickly but woke up an hour later with more intense flu like symptons....this was real "man flu". I honestly felt so shit I thought I was going to die! Looked at the clock and worked out the 6 hour period between paracetamol hadnt passed. Shit! I tried for all of 20 minutes to rough it out and get back to sleep. Gave up, took 2 more paracetamol and within 1/2 hour had fallen back to sleep. All in all, the rest of the night was fairly uneventful. Woke up a few times and had a few sweats, but nothing too bad.
Next morning I didnt feel too bad at all. Had breakfast which included a yoghurt smootie and 3 more riba (those on tx will understand this!). Took 2 paracetamol mid morning as a precaution but dont think I really needed them. A couple more single doses during the afternoon and evening and that was it. Since then there have been no interferon sides.
To date side effects from the riba have only included a bit of echma between fingers and the start of what is probably going to be the dreaded riba cough....oh, there is the flatulance which I assume is related to either the riba or yoghurt!
For the last 24 hours I have been waiting for the second stage of the interferon injection to kick in. For those reading this that are not accustom to treatment, the interferon that I am using (Peagsys) has been formulated to produce two distinct peaks during the week. The first occurs a few hours after the injection, the second is supposed to kick in around 72 - 90 hours after the injection. I am now at about 93 hours and nothing has happened yet. Is it going to happen? Am I going to be lucky with my sides? Who knows....I'm certainly not counting any chickens yet (only ribas...... 1992 to go!). In a strange way I want to feel something to give me the ressurance that something is actually happening inside my body. At the moment everything seems too quiet and easy....and that worries me a bit. Are the meds doing anything? Time will tell but at the moment I am just living hour by hour, day by day.
Monday, 31 March 2008
Introduction
Like many others suffering from the Hepatitis C Virus (HCV), I have started this blog to track my progress along the long and windy road of treatment. I think there are 3 main reasons for this. Firstly, to allow me to monitor any changes that occur during treatment. The HCV treatment is not particularly nice and there are many not so nice side effects. This blog will allow me to track these side effects and hopefully identify any patterns. I think this will be useful from both a medical and personal point of view. Secondly, it will allow friends and family to follow my tratment journey. Of course you cant beat face to face talking but sometimes that is either not possible or can be slightly awkward. Thirdly, it will give me a place to let of steam. The side effects of treatment are both physical and emotional and I am sure I will feel the need to rant and whine! Anyway, about my journey.................
In many ways it has been both a long and short journey to reach this point in time. It is likely that I have been infected with HCV for over 20 years....thats the long part. Over those 20 years a lot has happened in my life, a mixture of life events that have been both happy and sad. Not wanting to bore people from the start, I wont go into these now but do intend to touch on some of these events during my blog. Looking back with hindsight and the knowledge of HCV I now have, I feel a lot of the sadder moments can be linked directly to the Hep C virus. Unfortunately, at the time I didnt know this.
The shorter part of the journey is that from diagnosis (dx) to treatment (tx). Hats off to my local PCT who managed to push me through the system in less than 10 weeks. I've heard stories of people waiting more than 10 weeks for their first appointment. I received the first suspicion that I may have chronic HCV on January 21st 2008, two days before my birthday! The results from the standard antibody test had come back positive and there was around an 80% chance that I would still be actively infected.
Over the course of the next 10 weeks I had an ultrasound scan, an initial meeting with my specialist consultant, an MRI scan, a Liver Biopsy and started treatment on March 27th 2008. All these test threw up a mixed bag of results but all in all I have to be happy with them and the subsequent treatment prognosis. The extent of liver damage is probably the worst result....Stage 5 borderline cirrhosis which in a nut shell means my liver has taken a bit of a battering. This has a slight negative impact on the chances of successful treatment but even so I should still have around a 50:50 chance. Add a good dollup of positive attitude and shear determination and compliance to the medication and I reckon the chances have got to be in my favour. At one stage, prior to the MRI scan, a cancer marker (AFP) test showed elevated levels and for a few weeks I was in the horrible position of having to consider the possibility that I may have liver cancer. Thanksfully, the MRI scan came back clear and now the borderline cirrhosis diagnosis seems a little easier to swallow and accept.
I say I have around a 50:50 chance of getting what they call SVR (sustained viral response), which to all intents and purposes equates to a cure. The chances depend upon the type of Hep C virus I have. Unfortunately, due to an initial cock-up, I still dont know my type (genotype). Types 1, 2 and 3 are most common in northern europe so I am assuming that I have one of those. Type 1 is the hardest to cure but this is what I basing my above chances on (i.e. 50:50). If I am fortunate enough to have Type 2 then my chances of SVR increase to around 80%. In other words, it is a lot easier to treat. Type 3 is also supposed to be easier to treat but I have seen quite a few Type 3 relaspsers and am not convinced.
Having Type 2 is a double whammy....not only is it easier to treat but the treatment length is shorter, typically lasting for 24 weeks. Treatment for Type 1 lasts a standard length of 48 weeks with the possibility of extending to 72 weeks if the virus shows signs of resistance.
The short of it is that at the moment I do not know which genotype I have, but treatment has been started on the assumption that I am genotype 1. At this stage this basically boils down the the dosage of medication. I will be starting on maximum dosage. Whilst this is going to increase the chances of any side effect (sx), it does mean that I will be hitting the virus as hard as possible in the first few weeks. I understand that this is a fairly critical stage in treatment.
Anyway, thats a brief introduction to this journey I have just begun......
In many ways it has been both a long and short journey to reach this point in time. It is likely that I have been infected with HCV for over 20 years....thats the long part. Over those 20 years a lot has happened in my life, a mixture of life events that have been both happy and sad. Not wanting to bore people from the start, I wont go into these now but do intend to touch on some of these events during my blog. Looking back with hindsight and the knowledge of HCV I now have, I feel a lot of the sadder moments can be linked directly to the Hep C virus. Unfortunately, at the time I didnt know this.
The shorter part of the journey is that from diagnosis (dx) to treatment (tx). Hats off to my local PCT who managed to push me through the system in less than 10 weeks. I've heard stories of people waiting more than 10 weeks for their first appointment. I received the first suspicion that I may have chronic HCV on January 21st 2008, two days before my birthday! The results from the standard antibody test had come back positive and there was around an 80% chance that I would still be actively infected.
Over the course of the next 10 weeks I had an ultrasound scan, an initial meeting with my specialist consultant, an MRI scan, a Liver Biopsy and started treatment on March 27th 2008. All these test threw up a mixed bag of results but all in all I have to be happy with them and the subsequent treatment prognosis. The extent of liver damage is probably the worst result....Stage 5 borderline cirrhosis which in a nut shell means my liver has taken a bit of a battering. This has a slight negative impact on the chances of successful treatment but even so I should still have around a 50:50 chance. Add a good dollup of positive attitude and shear determination and compliance to the medication and I reckon the chances have got to be in my favour. At one stage, prior to the MRI scan, a cancer marker (AFP) test showed elevated levels and for a few weeks I was in the horrible position of having to consider the possibility that I may have liver cancer. Thanksfully, the MRI scan came back clear and now the borderline cirrhosis diagnosis seems a little easier to swallow and accept.
I say I have around a 50:50 chance of getting what they call SVR (sustained viral response), which to all intents and purposes equates to a cure. The chances depend upon the type of Hep C virus I have. Unfortunately, due to an initial cock-up, I still dont know my type (genotype). Types 1, 2 and 3 are most common in northern europe so I am assuming that I have one of those. Type 1 is the hardest to cure but this is what I basing my above chances on (i.e. 50:50). If I am fortunate enough to have Type 2 then my chances of SVR increase to around 80%. In other words, it is a lot easier to treat. Type 3 is also supposed to be easier to treat but I have seen quite a few Type 3 relaspsers and am not convinced.
Having Type 2 is a double whammy....not only is it easier to treat but the treatment length is shorter, typically lasting for 24 weeks. Treatment for Type 1 lasts a standard length of 48 weeks with the possibility of extending to 72 weeks if the virus shows signs of resistance.
The short of it is that at the moment I do not know which genotype I have, but treatment has been started on the assumption that I am genotype 1. At this stage this basically boils down the the dosage of medication. I will be starting on maximum dosage. Whilst this is going to increase the chances of any side effect (sx), it does mean that I will be hitting the virus as hard as possible in the first few weeks. I understand that this is a fairly critical stage in treatment.
Anyway, thats a brief introduction to this journey I have just begun......
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