I had my first appointment with the hepatologist at the University Clinic in Mainz at 10.30am today. I'd got myself all psyched up for this appointment & got there over 3/4 hour early, my list of questions in hand & my niece at my side (she went along with me as translator, which was just as well, as the consultant doesn't speak any English & my German isn't fluent).
After my rheumatologist told me last Monday that I definately had Hep C & knowing that I am registered with the health authority as being Hep C positive, I went for my first appointment expecting a genotype test & possibly arrangements to be made for an ultrasound +/or liver biopsy & lots of talk about treatment etc.
However, the specialist told me that I had only had the anti-body test done & that (as I already knew) doesn't confirm that I have a current, active Hep C infection. So, my appointment was a general examination, lots of general talk about Hep C (which I had already learnt from the internet) & a blood test for both PCR & genotyping.
Whilst this could end up being good news for me (if I don't have a current active infection) I'm fuming that I've spent the past 5 days being convinced that I'm definately HCV positive, my mind doing summersaults & getting myself all worked up & depressed with the 'hows', 'whys' & 'what ifs'.
I now have to wait 14 days before I get the results of my PCR & genotype tests. My next appointment is on Tuesday 24th September, when I will also have an ultrasound scan done. So for now I've been plunged back into that blackhole called the 'unknown' & am back to playing the waiting game ......... 14 days seems like an eternity!!!!
The consultant did tell me that they won't consider starting my treatment here, as I'm returning to the UK pretty soon. Apparently, anti-rheumatic drugs are not compatible with the Hep C therapy & neither are the steroids that I am currently taking. So, he said it's best to get registered back in the UK & get my rheumatologist & hepatologist to confer with each other as to the best way to treat me. Even if it turns out that I don't have a current active infection, I still have severely raised LFTs which needs addressing before I can commence any kind of treatment for my arthritis. As any person with RA will tell you, even without the added problem of raised LFTs (for whatever reason), a change of medication for arthritis is a big issue & can bring you down to your knees, both mentally & physically. So needless to say, I've got a bit of a rocky road ahead - the only question is how rocky will it be?
Anyway, I'm over in the UK for a few days next week, so I intend to get myself registered with a GP whilst I'm there, so that I can get the ball rolling straight away come the beginning of October. I assume that I'll be back to see my old rhematologist, whom at least I know I can talk to, so that's a consolation (of sorts!), but as for a hepatologist....???
One really positive thing that has come out of today is that I have managed to talk to both my sister & my niece a little bit more about things - not in terrific detail & certainly not pouring out my depression & feelings to them, but more about the practicalities of the situation & treatment etc, but at least the communication has started!!
Today has totally worn me out mentally. I feel like I've been on a mental rollercoaster ride & it's almost made me feel giddy! Just hope I don't get too low over the next 2 weeks - I'll need my mental strength to talk to my parents & daughters when I see them next week. Will write a post about how it all goes.
After my rheumatologist told me last Monday that I definately had Hep C & knowing that I am registered with the health authority as being Hep C positive, I went for my first appointment expecting a genotype test & possibly arrangements to be made for an ultrasound +/or liver biopsy & lots of talk about treatment etc.
However, the specialist told me that I had only had the anti-body test done & that (as I already knew) doesn't confirm that I have a current, active Hep C infection. So, my appointment was a general examination, lots of general talk about Hep C (which I had already learnt from the internet) & a blood test for both PCR & genotyping.
Whilst this could end up being good news for me (if I don't have a current active infection) I'm fuming that I've spent the past 5 days being convinced that I'm definately HCV positive, my mind doing summersaults & getting myself all worked up & depressed with the 'hows', 'whys' & 'what ifs'.
I now have to wait 14 days before I get the results of my PCR & genotype tests. My next appointment is on Tuesday 24th September, when I will also have an ultrasound scan done. So for now I've been plunged back into that blackhole called the 'unknown' & am back to playing the waiting game ......... 14 days seems like an eternity!!!!
The consultant did tell me that they won't consider starting my treatment here, as I'm returning to the UK pretty soon. Apparently, anti-rheumatic drugs are not compatible with the Hep C therapy & neither are the steroids that I am currently taking. So, he said it's best to get registered back in the UK & get my rheumatologist & hepatologist to confer with each other as to the best way to treat me. Even if it turns out that I don't have a current active infection, I still have severely raised LFTs which needs addressing before I can commence any kind of treatment for my arthritis. As any person with RA will tell you, even without the added problem of raised LFTs (for whatever reason), a change of medication for arthritis is a big issue & can bring you down to your knees, both mentally & physically. So needless to say, I've got a bit of a rocky road ahead - the only question is how rocky will it be?
Anyway, I'm over in the UK for a few days next week, so I intend to get myself registered with a GP whilst I'm there, so that I can get the ball rolling straight away come the beginning of October. I assume that I'll be back to see my old rhematologist, whom at least I know I can talk to, so that's a consolation (of sorts!), but as for a hepatologist....???
One really positive thing that has come out of today is that I have managed to talk to both my sister & my niece a little bit more about things - not in terrific detail & certainly not pouring out my depression & feelings to them, but more about the practicalities of the situation & treatment etc, but at least the communication has started!!
Today has totally worn me out mentally. I feel like I've been on a mental rollercoaster ride & it's almost made me feel giddy! Just hope I don't get too low over the next 2 weeks - I'll need my mental strength to talk to my parents & daughters when I see them next week. Will write a post about how it all goes.
posted by Maria | 2:01 PM
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