It’s been a little while since my last post, mainly because I was completely wiped out by a fluey type cold thing for a week or so. Chronic liver disease + a cold = HELL. Considering I feel like I have flu most of the time anyway, an extra dollop of flu type symptoms and a cough and cold really aren’t a nice combination. But I’m only really left with the cough and cold now so I can deal with that. Oh and I can’t seem to get out if bed before 12pm at the moment – I’m blaming this on two things; sleep reversal and being extra exhausted due to my body having to work even harder than usual because of the winter bug I had.
In other news, I’ve been getting REALLY excited about Christmas and because it’s December now it’s completely fine to talk about it and sing Christmas songs and talk about it some more. The run up to Christmas is always my favourite time of year. I love the cold weather, pretty lights everywhere, FOOD EVERYWHERE, Christmas themed hot beverages, being cosy and spending loads of time with the most important people. Plus, my niece and nephew are on a 24/7 hype because they’re so excited and that’s always amusing.
This time last year I was coming to the end of a three month trip in Toronto, Canada. Anyone who knows me will know how much I love Toronto. I spent six months there as a student in 2009 and was dying to go back ever since, so last year after saving up for ages, I booked my flights, found a little room to rent and jetted off to spend three months there. I had the best time! I wasn’t a student, I wasn’t working, I was just living and exploring. Taking dance classes, meeting new friends (who I miss terribly) and catching up with old friends (who I also miss terribly).
The city at this time of year is just perfect. Canadians are so friendly and helpful anyway but at Christmas time they’re even more so. It’s like everyone and everything comes with an extra helping of ‘holiday cheer’ it’s great! The weather is bitter but it’s a nice kind of bitter, it’s crisp and fresh and there’s usually light (or heavy) dusting of snow on the ground which makes everything look so pretty – that’s how winter is supposed to be! Oh and there are like, a hundred more types of Christmas themed beverages to choose from!
At the end of my trip when I was nearly out of money, I spent a lot of my time just wondering the city on my own, going from coffee shop to coffee shop and book store to book store, it was perfect!
Okay so anyway, let’s get back on track! Today I had my December appointment with the hepatology team at Derriford. I saw a different doctor than usual but I’ve seen her before and she was completely up to date with what’s been going on with me, so the first thing she asked about was the bout of cholangitis (infection in my liver) that had been discovered at my last appointment. I told her that as soon as I started taking the antibiotics that were prescribed for it I noticed a difference in my jaundice levels straight away; the whites of my eyes actually nearly looked white again, as did my skin! I felt much better physically too, I just didn’t feel as lousy as I had been feeling previously. She was pleased to hear that the antibiotics made a difference but I then went in to tell her that after I finished the course of antibiotics I came down with a cold and felt extra cruddy with it and since then I’ve had a weird, sicky stomach feeling on and off with a slight temperature on top of all my usual symptoms (including the yellow coming back with a vengeance). The doctor said that she was a bit concerned with how jaundice I looked today and by the sounds of how I’ve been feeling since finishing the last lot of antibiotics, she thinks there might be another infection lurking. She explained that once you have a cholangitis attack you are more likely to keep getting them. This is something I cannot afford to keep having, especially whilst I’m on the transplant waiting list because if I get my call and I’ve got an infection I won’t be able to have the transplant…NOT GOOD! I’m definitely not up for having to wait even longer. When a liver becomes available for me I want to be in tip top condition so I can have it. I WANT THAT ORGAN ASAP!
So the outcome of this is more antibiotics. I’ve been given a weeks course of a high dose and then a lower dose to keep taking afterwards continuously to hopefully keep any infection from returning. The doctors will keep adjusting this according to what my liver is up to. So if an infection comes back they’ll up the dose again. By the sounds of it this is going to be an ongoing thing now until I get my new liver. I’m sure I will learn more about it over the next couple of months because I’m a bit unsure about the ins and outs of it all at the moment, so for now I’m just doing as I’m told and adding these new pills to my current luxurious cocktail.
That was the most eventful part of the appointment really. The latest scan of my tired ol’ bile ducts shows no significant changes which is good news! They’re obviously still battered and blocked, that’s not going to change anytime soon, but there’s nothing new or ‘worrying’ there to suggest cancer or anything else morbid like that. There were talks of maybe doing an ERCP (a procedure to unblock bile ducts) but the doctors think it would be more harmful than beneficial to me so it’s probably unlikely that I’ll have that done. This is good because I’ve managed to get away without ever having to have an ERCP so far and I’d quite like to keep it that way thank you!
I was thinking this would be my last hospital appointment of 2013 but of course that isn’t the case, of course they want to see me again in three weeks! Oh we’ll, it’s better to be safe than sorry eh? And let’s face it – what’s one more hospital visit to add to the seven hundred we’ve already had this year? So we’ll go back down to see the lovely Derriford team on the 23rd December. My Dad joked around and said we’d only go if they’ll provide mince pies. I’d rather have a whiskey but that’s obviously completely out of the question. I expect what I will get is another generous helping of antibiotics…’TIS THE SEASON!