The England trip

D-day finally came around on Monday last week (18th September). The day to take my stuff over to England.

Having spent the entire weekend before that doing nothing but packing, my niece & I got the hire van at 2pm that afternoon & drove it the few miles to where I live (ooops! sorry, that´s wrong, coz I don´t live there anymore!!). It took just under 2 hours to get the van packed but before we had finished, my landlady arrived with the new tenant. The flat was checked over & all keys (except one) handed over, all forms signed in blood & then they left. My niece & I just had time for a quick shower & change before setting off on the long drive, Hochheim to Telford.

We left Hochheim at 6pm. The ferry crossing from Calais to Dover was booked for 02.10am & we had to be there at least half an hour early. My niece started off behind the wheel & although she tends to drive a bit(?) fast sometimes, did an excellent job of getting us to Calais for 00.45am. However, when we arrived at the docks, we somehow managed to get into the freigh check-in & ended up having the van checked for 'live' illegal imports. Once we finally got through all the freight security & passport checks, we had to find our way to the tourist check-in, which is easier said than done when you´re starting to get tired. The nursery rhyme "round & round in circles, like a teddy bear" comes to mind when I think of it - lol. Anyway, we found our way to the tourist check-in by pure chance. The guy checking the passports there, took one look at me, then looked at my passport, then repeated the procedure a couple of times. then got out of his little cabin to take a better look at me, scratching his head a little, before seemingly reluctantly, giving me my passport back. My photo in my passport shows me with long hair & now I have it shaved very short, so I joked & asked him if the new haircut had fooled him - he just grunted at me, obviously not amused (as the Queen would probably say).

The ferry crossing was pretty uneventful & I was really chuffed with myself for driving from Dover to Telford without a map & not getting us lost once! Needless to say we were shattered when we got to my parents house in Telford at 07.30am, but stayed awake & just went to bed early that Tuesday night, having unloaded all my junk.

My Wednesday was mainly spent unpacking, but the evening was nice. It was my dads birthday, so we had family over for drinks, which was a good laugh as my dad got drunk & always manages to make a fool of himself when he´s had a brandy too many!

Thursday came round way too soon. We had to leave at 6.30pm to get to Dover for the return ferry. My mum sent us packing with full bellies & a full coolbag (not that we ate much of the food though). The return trip was totally smooth - we made good time & never got lost once - which, if you knew us, you´d believe is a minor miracle!! We handed the van back in good time & got back home for 1pm - I was totally impressed, I can tell you.

After a good long, hot shower, I went to bed at 8pm that Friday night & (believe it or not) slept right through till 11.50am on the Saturday morning, waking up feeling really drained & unwell. Obviously, the hectic 4 day trip really took it out of me & was no more than should have been expected really. I certainly won´t be doing a trip like that again if I can help it!!

The one thing I had aimed to do during those couple of days, is talk to my parents & daughters about my hepatitis, but, I´m ashamed to say, I lost my resolve & didn´t do it. I know I´m going to have to talk to them about it when I get back over there, but that´s something I only intend to worry about when the time comes coz I still feel too ashamed of it to dwell on it too much & almost feel like I´m living in a dream at the moment, & when I wake up, they´ll be no such thing as Hep C in my life - if only!!

It was terrific being back in Telford. Even as we neared my mums street when we arrived, I felt a lovely warm feeling inside, like I was going back to where I really belong. Coming back here to Germany was totally the opposite. I felt like I was really doing something dreadfully wrong & now I´m back here, I feel like an unwanted spare part. Don´t get me wrong, my family are taking really good care of me - it´s Germany in general where I feel I don´t belong.

So now I´m thinking "Just roll on 8th October & get me back home!" That´s going to be another drive over, this time with my car, but at least it´s only going to be a one-way trip!

I´ve got many challenges ahead of me when I get back to England, just one of which is getting my health issues sorted out. I´ve also got to find a job, get my German car re-registered (that´s assuming the old banger will pass an MOT - I can dream!) & get myself a flat (& all the stuff that goes with it). There´s also enjoyable stuff to do, like getting round to seeing all the friends whom I haven´t seen for absolutely ages & ages - we´ve all got alot of catching up to do! Plenty of stuff to hopefully keep me focused & positive.

Still, I´ve always said I enjoy a challenge, & if that isn´t a challenge, then what is, eh?

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The official diagnosis

So it´s official. I´m definately Hep C positive!

I had my 2nd appointment with the hepatologist today. I spent well over 3 hours at the hospital, most of it in the waiting room, as per usual! I had an ultrasound scan which apparently can determine signs of liver cirrhosis. My ultrasound results were fine. They even checked my kidneys, gallbladder, spleen, pancreas & stomach! Liver damage can cause an enlarged spleen, the doctor explained to me, but mine, he said, looked fine. He offered no explanation as to why they checked all the other organs too though, but just told me that everything looked ok. As far as a liver biopsy goes, they won´t do one for me here in Germany coz I´ll be back in England by the time the results come back & (of course) they´ll be in German. So, I have to get myself referred to a hepatologist in England asap & get my first biopsy done there.

I can´t say I was surprised at the results of my blood tests. I kind of knew that I was positive. I´ve been suffering symptoms which could be directly caused by the hepatitis for quite a few years now: the unexplained sweats (is it or is it not the menopause???), aches & pains (investigated & found not to be arthritic in origin), forgetfulness (I used to say I was pre-maturely senile - lol), & lack of co-ordination (which I always put down to my arthritis).

I had reckoned on being told I was positive, & being advised that treatment should be started asap so that I could get back on the straight & narrow with my rheumatic medication. I was told that the 2 treatments counteract with each other, & that I can´t have Interferon & take anti-rheumatic medication at the same time, even if it is just steroids, which I am currently taking. So, thought I (quite wrongly, as it happens), the doctor would suggest that I get my hepatitis treated asap, taking into consideration that I have symptoms, haven´t yet started the menopause & am 'only' 41.

What I didn´t expect, was what I got told...... that my raised Liver Function Test (LFT) results are slowly returning back to normal & that it is likely that my medication did cause my raised LFTs in the first place. Therefore, I need to get put onto a suitable anti-rheumatic medication that won´t upset my liver any more & have quarterly blood tests & 3-yearly liver biopsies to monitor the progress of the hepatitis.

What am I supposed to think of all this? I really don´t know! Part of me is relieved that it must be a good sign if the doctor thinks my raised LFTs are a result of my medication & not the hepatitis, right? But I´m worried about leaving the treatment too long. I´ve spent most of today in a kind of little bubble, where I´m physically present, but mentally elsewhere. But what have I been thinking these past few hours? I honestly can´t tell you!! I feel like I´m suffering with concussion & can´t think straight - & that scares me in itself.

Now I´m back to playing the waiting game again - waiting until I get back to England on 8th October, get an appointment with my GP & get referred, not only to a hepatologist, but a rheumatologist aswell.

As long as I can remember, we have always joked in our family, that things are never straight forward for you if you are one of us - how true that it is in this instance, eh? I feel very pesimistic & sorry for myself at the moment & while I know that´s bad, I just can´t help myself. But hey, tomorrow´s another day & maybe in the morning, my glass will be half full instead of half empty!!

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.

A face to a name....

I didn't really want to make a special posting to put this photo on here, but that's what it seems to be doing.

This photo is me, it's a few months old now & I change my hairstyle like alot of women change their underwear so I must say I don't look exactly like that now, but it's one of the best I've got for the time being & better than no photo at all - or is it????

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?