Why no posts recently?
I, along with many other ex users, did not escape completely "scott free" from my using career. During the course of it I contracted the Hepatitis C virus, although around the time that I got clean the term was not even known. This was because they were just about inventing the test at this time to recognise the virus. Up until this time there existed Hepatitis A, Hepatitis B and what they called "Non A, non B Hepatitis" which included Hepatitis C but of course also some other varities as well.
Around 1991 I first heard of hepatitis C as a consequence of my professional work. In fact I read a magazine article and recognised the symptoms and consequently went and had the test which proved positive. At the time most doctors had next to no knowledge of the condition and what information that there was available presented a picture of a "killer disease" which was lumped together with HIV as something that was almost invariably fatal.
My first meetings with the consultants did not go well. I had obviously done a lot of research on the subject beforehand - particularly on the treatment options, the side effects of treatment and it's efficacy. I found that the information that I was being given was less than honest and worse than that I left feeling that I was being treated as a guinea pig. I was being told that I would have to go to another hospital some 60 miles away 3 times a week (there goes my professional career) and that I had to have a liver biopsy - the risks of this were never even mentioned - and that I would be put on Interferon.
The possible side affects of Interferon were never raised. At this point I left and never went back to see that particular consultant. All the information that I was getting at the time pointed to the fact that there was a lot of research going on, particularly into combination therapies, and that with time treatment was going to improve.
It is perhaps worth pointing out that at this point I had never missed a days work, that I was very little inconvenienced and my perspective was that at that time the treatment seemed worse than the disease! I continued working full time and, apart from the odd liver function test, I never went near a doctor until 2003 when I had moved to a different part of the country. This time the doctors were a bit more open with me and yes, the treatment had moved on and combination therapies were now on offer which seemed to offer much better outcomes.
My only problem was that I had just landed a Senior Managers job so I really didn't want to get involved with such a "heavy duty" treatment at that time!
I duly went ahead and worked full time in a a very stressful post for a couple of years. I coped OK but the job was very political, the team was very dysfunctional and the pressure started to tell. I finally quit for a variety of reasons - the Hep C formed only a very small part of it - around 9 months back. Since then I have been more or less self employed as a consultant.
However I found myself somewhat lacking in energy, perjaps lacking some concentration - in general just not what I used to be. But then I told myself, I am 61 years old so I am bound to be slowing down a bit.
Around a month back I was going away for a few days, I thought before hand that I was fighting off a cold - nothing too much to worry about. On arriving at our destination (I was accompanied by my wife) I more or less collapsed and spent the next three days flat on my back in the motel room unable to eat, without sufficient energy to move more than a few feet and sleeping around 18 hours a day.
On the 4th day my wife ended up calling a Doctor who promptly ordered me into hospital.
There then followed another three days of "Doctor knows best" - it was fairly obvious to me that the symptoms that I was experienced were related to my liver - but of course I was only the patient so nobody was going to listen to me. Similarly when I told them that they wouldn't be able to get bloods out of my arms they had to know better (nobody has managed to get a straight forward blood sample out of my arms in 25 plus years - when you inject yourself with drugs every few hours for many years you tend to make a mess of your veins. I certainly did - but then the most junior nurses seem to have that "medical arrogance" that discounts my 40 years worth of experience of finding veins in my arms and we have to have a very painful 15 minutes before they come to believe what I say is true!)
Finally I discharged myself - after promising to ensure that I continued treatment back in my home town. After all my wife was stuck 300 miles from home, as was I, and the rest of my life was going to the dogs while they dreampt up mre and more tests to subject me too. I have no problem with the tests - but as the hospital I was in was not in a position to provide any treatment whereas my local one can do both the tests and provide treatment I preferred to go home.
Since arriving home the majority of my symptoms have vanished. I now believe that I did catch some sort of "opportunistic virus" which hit my weakened liver and which I have now fought off. It has never the less been a salutory reminder for me and I am stil pursuing my treatment options.
I have been left unable to do very much for the past month - I have been unable to stay out of bed for more than about 4 hours at a strtch - hence the lack of posts. I am now however slowly regaining my strength. It has become evident to me that at least part of my "grumpiness" has been related to the state of my liver.
It has also become evident to me that although I still care about all the topics that I write about here I cannot afford to get too worked up and stressed about them as, in my present state, the resultant stress will be likely to have health consequences for me. In short "the "grumpy old addict" needs to lighten up a bit for his own sake.
I shall miss "self richeous anger" - it's been a lifelong friend, but it is a luxury that I can no longer afford.
Around 1991 I first heard of hepatitis C as a consequence of my professional work. In fact I read a magazine article and recognised the symptoms and consequently went and had the test which proved positive. At the time most doctors had next to no knowledge of the condition and what information that there was available presented a picture of a "killer disease" which was lumped together with HIV as something that was almost invariably fatal.
My first meetings with the consultants did not go well. I had obviously done a lot of research on the subject beforehand - particularly on the treatment options, the side effects of treatment and it's efficacy. I found that the information that I was being given was less than honest and worse than that I left feeling that I was being treated as a guinea pig. I was being told that I would have to go to another hospital some 60 miles away 3 times a week (there goes my professional career) and that I had to have a liver biopsy - the risks of this were never even mentioned - and that I would be put on Interferon.
The possible side affects of Interferon were never raised. At this point I left and never went back to see that particular consultant. All the information that I was getting at the time pointed to the fact that there was a lot of research going on, particularly into combination therapies, and that with time treatment was going to improve.
It is perhaps worth pointing out that at this point I had never missed a days work, that I was very little inconvenienced and my perspective was that at that time the treatment seemed worse than the disease! I continued working full time and, apart from the odd liver function test, I never went near a doctor until 2003 when I had moved to a different part of the country. This time the doctors were a bit more open with me and yes, the treatment had moved on and combination therapies were now on offer which seemed to offer much better outcomes.
My only problem was that I had just landed a Senior Managers job so I really didn't want to get involved with such a "heavy duty" treatment at that time!
I duly went ahead and worked full time in a a very stressful post for a couple of years. I coped OK but the job was very political, the team was very dysfunctional and the pressure started to tell. I finally quit for a variety of reasons - the Hep C formed only a very small part of it - around 9 months back. Since then I have been more or less self employed as a consultant.
However I found myself somewhat lacking in energy, perjaps lacking some concentration - in general just not what I used to be. But then I told myself, I am 61 years old so I am bound to be slowing down a bit.
Around a month back I was going away for a few days, I thought before hand that I was fighting off a cold - nothing too much to worry about. On arriving at our destination (I was accompanied by my wife) I more or less collapsed and spent the next three days flat on my back in the motel room unable to eat, without sufficient energy to move more than a few feet and sleeping around 18 hours a day.
On the 4th day my wife ended up calling a Doctor who promptly ordered me into hospital.
There then followed another three days of "Doctor knows best" - it was fairly obvious to me that the symptoms that I was experienced were related to my liver - but of course I was only the patient so nobody was going to listen to me. Similarly when I told them that they wouldn't be able to get bloods out of my arms they had to know better (nobody has managed to get a straight forward blood sample out of my arms in 25 plus years - when you inject yourself with drugs every few hours for many years you tend to make a mess of your veins. I certainly did - but then the most junior nurses seem to have that "medical arrogance" that discounts my 40 years worth of experience of finding veins in my arms and we have to have a very painful 15 minutes before they come to believe what I say is true!)
Finally I discharged myself - after promising to ensure that I continued treatment back in my home town. After all my wife was stuck 300 miles from home, as was I, and the rest of my life was going to the dogs while they dreampt up mre and more tests to subject me too. I have no problem with the tests - but as the hospital I was in was not in a position to provide any treatment whereas my local one can do both the tests and provide treatment I preferred to go home.
Since arriving home the majority of my symptoms have vanished. I now believe that I did catch some sort of "opportunistic virus" which hit my weakened liver and which I have now fought off. It has never the less been a salutory reminder for me and I am stil pursuing my treatment options.
I have been left unable to do very much for the past month - I have been unable to stay out of bed for more than about 4 hours at a strtch - hence the lack of posts. I am now however slowly regaining my strength. It has become evident to me that at least part of my "grumpiness" has been related to the state of my liver.
It has also become evident to me that although I still care about all the topics that I write about here I cannot afford to get too worked up and stressed about them as, in my present state, the resultant stress will be likely to have health consequences for me. In short "the "grumpy old addict" needs to lighten up a bit for his own sake.
I shall miss "self richeous anger" - it's been a lifelong friend, but it is a luxury that I can no longer afford.
Labels: Hepatitis C, NHS
posted by anaddict @ 3:32 PM
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