The Diagnosis
As I said in my introduction, I was diagnosed with Hepatitis C just last Monday (4th Sept 06). In addition to Hep C, I also have rheumatoid arthritis (for the past 15 years) & it was through my monthly blood tests to monitor my liver function against my rheumatic medication that I came to be diagnosed.
In June this year, my Liver Function Tests (LFTs) suddenly hit the roof & my rheumatologist thought this was a result of either one of the three medications that I was taking. One by one, I stopped taking all my rheumatic medication & was put on steriods as an emergency measure & was having weekly blood tests. At first, my LFTs started returning to normal, but after a couple of weeks, they started yo-yoing up & down. I had an ultrasound scan to check the state of my liver (which looked ok at the time) but my doctor found 2 large gallstones. He then thought that they might be causing my problem, but as he's a rheumatologist & not a GI specialist, he phoned a consultant for advice. The consultant said that there is no way my gallstones could be causing my extremely elevated LFTs, but that I should be checked for hepatitis - both auto-immune & 'C'.
This blood test was taken on 31st August 06 & on the following Monday (4th Sept 06) my rheumatologist phoned me on my mobile while I was out shopping & gave me the news, telling me to go & see him first thing the following day. I was in Aldi when he phoned me & I didn't really take in the enormity of what I'd been told straight away. I finished my shopping, got home, put my shopping away & made a cup of tea. It was only then that I realised what I had been told. As an ex-nurse, I knew a little about Hep C, but had never come across it before, either professionally or personally. I must have just sat there on the sofa, staring into space for ages, my mind whirling, trying to remember what I had learnt about Hep C in my nurse training but couldn't seem to remember much at all. I suddenly felt a desperate need to find out what I could about it, so on went the PC & Google came in very handy! I read about the causes, symptoms, transmission, treatment, side effects of treatment etc & took it all in my 'mental' stride that evening, thinking "well, I've got RA, so what's Hep C on top of that?"
When I went to see my rheumatologist the following morning, he had already arranged for me to see a consultant & told me that the lab had notified the health authority of the result as Hep C is a notifiable disease. I think it was hearing that information that pushed me over the edge into confusion, anger, depression & self-disgust. I went straight on the internet when I got home & read more & more about it, reading & re-reading everything I could find & that's when I found the Hep C Forum, which has been not only a help, but also a relief. To know that I'm not alone & that I've got access to sympathetic, compassionate people who really want to help, is invaluable.
I've spent the past 5 days in a kind of 'bubble', not knowing what to think, & definately not knowing who I should tell. I got extremely upset whilst at my niece's house (whom I'm very close to) the other day, but couldn't bring myself to talk to her about it. Instead, I gave her a couple of website addresses & told her that I NEEDED her to look it up for herself. Her husband is a physiotherapist & whilst he has no knowledge of such medical things, I find him easier to talk to - though I can't figure out why! Yesterday I talked to them both (individually) a little more about it but am concerned that they may not see it as being as potentially serious as what it really is - especially with regards to potential transmission, as I've not reached menopause yet.
Today I told my sister, which I, although self-conscious & embarassed, didn't find as difficult as I expected (I wonder if that's because she asked more 'matter-of-fact' questions, rather than emotional ones???
I'm off to England on Monday next week (18th Sept) for a few days & will be staying with my parents (whom I'll be living with temporarily when I move over permenantly) & know that I'll have to tell them, but am absolutely dreading approaching the subject & don't know how they're going to react or how I'm going to cope with that particular hurdle! As for my daughters, they don't know yet either & that's tearing me apart too - should I tell them? (I suppose I should); how should I tell them? ; how will they react? etc etc.....
Right now, I'm staying in my little mental bubble, waiting for Tuesday (not far away now) when I go to see the consultant. I'm trying to prepare myself for the appointment with a list of questions to ask, but what I really need most right now is some self-esteem.
More will follow once I've seen the consultant.
P.S Before I go, I just want to add something about symptoms. For at least 4-5 years now, I've been joking about going "prematurely senile", forgetting things & always needing to put reminders on my mobile phone, even for the smallest of things. In this time, I've also thought I was starting a premature menopause, with those dreaded hot & cold flushes & even spoke to a couple of doctors about it who all said that I was way too young & not to be so silly! Also, over the past 9 months or so, I've been suffering alot of pain in one hip & my lower back, not necessarily related to activity. My rheumatologist did an ultrasound of my hip & when he didn't find anything, sent me for an x-ray, which showed only showed slight arthritic changes in the other hip! I'm also getting headaches & neck pain quite alot these past couple of weeks - that might just be due to the mental stress I've managed to put myself under, but who knows?? Suddenly, all these unexplained problems have a probable cause, which although I'm horrified with, I also feel kind of relieved that all these things might not be coming out of my imagination after all - if you know what I mean?
In June this year, my Liver Function Tests (LFTs) suddenly hit the roof & my rheumatologist thought this was a result of either one of the three medications that I was taking. One by one, I stopped taking all my rheumatic medication & was put on steriods as an emergency measure & was having weekly blood tests. At first, my LFTs started returning to normal, but after a couple of weeks, they started yo-yoing up & down. I had an ultrasound scan to check the state of my liver (which looked ok at the time) but my doctor found 2 large gallstones. He then thought that they might be causing my problem, but as he's a rheumatologist & not a GI specialist, he phoned a consultant for advice. The consultant said that there is no way my gallstones could be causing my extremely elevated LFTs, but that I should be checked for hepatitis - both auto-immune & 'C'.
This blood test was taken on 31st August 06 & on the following Monday (4th Sept 06) my rheumatologist phoned me on my mobile while I was out shopping & gave me the news, telling me to go & see him first thing the following day. I was in Aldi when he phoned me & I didn't really take in the enormity of what I'd been told straight away. I finished my shopping, got home, put my shopping away & made a cup of tea. It was only then that I realised what I had been told. As an ex-nurse, I knew a little about Hep C, but had never come across it before, either professionally or personally. I must have just sat there on the sofa, staring into space for ages, my mind whirling, trying to remember what I had learnt about Hep C in my nurse training but couldn't seem to remember much at all. I suddenly felt a desperate need to find out what I could about it, so on went the PC & Google came in very handy! I read about the causes, symptoms, transmission, treatment, side effects of treatment etc & took it all in my 'mental' stride that evening, thinking "well, I've got RA, so what's Hep C on top of that?"
When I went to see my rheumatologist the following morning, he had already arranged for me to see a consultant & told me that the lab had notified the health authority of the result as Hep C is a notifiable disease. I think it was hearing that information that pushed me over the edge into confusion, anger, depression & self-disgust. I went straight on the internet when I got home & read more & more about it, reading & re-reading everything I could find & that's when I found the Hep C Forum, which has been not only a help, but also a relief. To know that I'm not alone & that I've got access to sympathetic, compassionate people who really want to help, is invaluable.
I've spent the past 5 days in a kind of 'bubble', not knowing what to think, & definately not knowing who I should tell. I got extremely upset whilst at my niece's house (whom I'm very close to) the other day, but couldn't bring myself to talk to her about it. Instead, I gave her a couple of website addresses & told her that I NEEDED her to look it up for herself. Her husband is a physiotherapist & whilst he has no knowledge of such medical things, I find him easier to talk to - though I can't figure out why! Yesterday I talked to them both (individually) a little more about it but am concerned that they may not see it as being as potentially serious as what it really is - especially with regards to potential transmission, as I've not reached menopause yet.
Today I told my sister, which I, although self-conscious & embarassed, didn't find as difficult as I expected (I wonder if that's because she asked more 'matter-of-fact' questions, rather than emotional ones???
I'm off to England on Monday next week (18th Sept) for a few days & will be staying with my parents (whom I'll be living with temporarily when I move over permenantly) & know that I'll have to tell them, but am absolutely dreading approaching the subject & don't know how they're going to react or how I'm going to cope with that particular hurdle! As for my daughters, they don't know yet either & that's tearing me apart too - should I tell them? (I suppose I should); how should I tell them? ; how will they react? etc etc.....
Right now, I'm staying in my little mental bubble, waiting for Tuesday (not far away now) when I go to see the consultant. I'm trying to prepare myself for the appointment with a list of questions to ask, but what I really need most right now is some self-esteem.
More will follow once I've seen the consultant.
P.S Before I go, I just want to add something about symptoms. For at least 4-5 years now, I've been joking about going "prematurely senile", forgetting things & always needing to put reminders on my mobile phone, even for the smallest of things. In this time, I've also thought I was starting a premature menopause, with those dreaded hot & cold flushes & even spoke to a couple of doctors about it who all said that I was way too young & not to be so silly! Also, over the past 9 months or so, I've been suffering alot of pain in one hip & my lower back, not necessarily related to activity. My rheumatologist did an ultrasound of my hip & when he didn't find anything, sent me for an x-ray, which showed only showed slight arthritic changes in the other hip! I'm also getting headaches & neck pain quite alot these past couple of weeks - that might just be due to the mental stress I've managed to put myself under, but who knows?? Suddenly, all these unexplained problems have a probable cause, which although I'm horrified with, I also feel kind of relieved that all these things might not be coming out of my imagination after all - if you know what I mean?
posted by Maria | 4:06 PM
3 Comments:
Good to see another blog!
Good luck with telling your family about it. I am sure they will support you but like many, may not understand what you are going through.
Take care,
Hi Maria - just to let you know I found your blog - a fascinating start.
I find my blog very therapeutic, and it has certainly helped me to make many links with other bloggers and realise that experiences are often shared and not just me being weird!
Keep it up!
Nick
Maria - Here is another thing we have in common - my daughter's real name (the one I call Bridezilla) is Naomi!
Keep blogging, as Nick said, it's very theraputic, even if no one reads what you write, I find it helps to write it.
uncertain
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