Another week gone and no news yet. Given the dramatic move up the waiting list (as of last week) I'm back to feeling a little jumpy each time the phone rings. I think the difference now is that I don't really feel like there's too much more to get organised at work to ensure they can carry on without any problems, so I just feel more calm and ready.
I had some interesting conversations with friends last night at my housemate Nick's 30th birthday. Mostly I've been concentrating on what's going to happen to me when I get the phonecall, but I've been asked by lots of people how I feel about where the organ must be coming from.
To be honest I don't tend to really think about it very much, as it is just too bizarre to think that someone else has to die in order for me to have this operation. I guess my general outlook on life is very much that these things just happen, at random, and that the fact that transplants are happening at all are an indication of people's generosity and willingness to help others.
I think that recent discussion has been very interesting about how Britons are so poor at donating organs in comparison to other European countries. I think it is probably more about a certain British reserve about talking about death, and also a natural desire to leave families alone when they are with loved ones who are dying. I think most people have no idea how easy it is to get on the register though. Literally you can go to the donation website and fill in a very short form, then just ensure you tell your family. If you haven't, then please do it now. I hope, like me, you feel it would be good to know that even out of the worst event there could be the amazing silver lining of helping other people live.
Maybe the next blog update might be more interesting - here's hoping.
Sunday, November 30, 2008
Monday, November 24, 2008
Moving on up.
I have just returned from a meeting with my consultant at Kings College Hospital, and I'm pleased to say that apparently in the past 2 weeks I've moved up from 12th on the blood-type-A list to 6th! Practically speaking I'm 3rd in line for my size of liver, so really the call could come at any time now.
A good thing too, as my health is gradually deteriorating. I'm at the point now where the itching is waking me up in the night, I find it hard to get to sleep before about 2am, and I am in desperate need of sleep in the mid-afternoon. Its all caused by mild encephalitis - brain inflammation caused, in this case, by the high level of unfiltered chemicals in my bloodstream. Essentially my liver is no longer able to break down and filter these substances as it should as it is getting scarred and also blocked up with bile acids.
Still, despite all that I'm still getting to work pretty much every day, and keeping up some sort of social life. I'm no longer doing any class-teaching so its more of a desk-job at school but its great to still be able to be helpful and contribute something useful. At the weekend I went down to Oxford to visit Sarah, my dance partner. She's currently competing on the university team while I'm not able to dance myself. We had a bit of a practice and a good catch up.
On Sunday I spent most of the day with my brother and sister-in-law Charles and Kathy, and my gorgeous 2-year old nephew Patrick. Here's a few recent photos of the general fun that Patrick and I have been having!
A good thing too, as my health is gradually deteriorating. I'm at the point now where the itching is waking me up in the night, I find it hard to get to sleep before about 2am, and I am in desperate need of sleep in the mid-afternoon. Its all caused by mild encephalitis - brain inflammation caused, in this case, by the high level of unfiltered chemicals in my bloodstream. Essentially my liver is no longer able to break down and filter these substances as it should as it is getting scarred and also blocked up with bile acids.
Still, despite all that I'm still getting to work pretty much every day, and keeping up some sort of social life. I'm no longer doing any class-teaching so its more of a desk-job at school but its great to still be able to be helpful and contribute something useful. At the weekend I went down to Oxford to visit Sarah, my dance partner. She's currently competing on the university team while I'm not able to dance myself. We had a bit of a practice and a good catch up.
On Sunday I spent most of the day with my brother and sister-in-law Charles and Kathy, and my gorgeous 2-year old nephew Patrick. Here's a few recent photos of the general fun that Patrick and I have been having!
Anyway, thanks to everyone who's been asking after me and reading this. I'll try and post a bit more frequently, and don't worry I'll definitely post on here as soon as I get the call!
Tuesday, November 11, 2008
It's a bug's life...
I've just had two days off work with some sort of strange fluey-ish/stomachy bug thing. Its remarkably similar to something I had about a month ago so I'm wondering whether it might not even be a bug but just a bout of 'liveryness'. Either way, not very pleasant, and I spent most of the time in bed or suffering from squiffy innards (to put it politely).
The timing of these things is particularly irritating. Both this one and the last time round seemed to start on a Monday, and lasted 2 or 3 days, which manages to knock out the majority of my school teaching which is mostly timetabled early in the week. I still have to set cover-work for the classes, of course, and I keep feeling guilty that the poor little buggers aren't getting much of a good deal. Fortunately I've now told most of them why I've been off a fair bit, but that still doesn't make it much better, nor for my poor colleagues who are having to cover the lessons.
I also feel a bit giulty for Nick and Sarah, my flatmates, who are doing a truly wonderful job of putting up with me sitting about looking sorry for myself and failing to help them with housework while I waft back and forwards from bed. I've made a large vat of turkey soup today though which I shall hope to use to make some amends!
Frankly the whole thing is a bit tiresome, and serves to underscore yet again just how much I want to get on with the damned transplant. At one point yesterday I even managed to get a bit excited when the next year's list of amateur latin dancesport national ranking competitions was published. With a bit of luck I'll make at least 3 of them toward the end of next year once I'm better. And that is the thought I shall be sticking with - focus on positives!
The timing of these things is particularly irritating. Both this one and the last time round seemed to start on a Monday, and lasted 2 or 3 days, which manages to knock out the majority of my school teaching which is mostly timetabled early in the week. I still have to set cover-work for the classes, of course, and I keep feeling guilty that the poor little buggers aren't getting much of a good deal. Fortunately I've now told most of them why I've been off a fair bit, but that still doesn't make it much better, nor for my poor colleagues who are having to cover the lessons.
I also feel a bit giulty for Nick and Sarah, my flatmates, who are doing a truly wonderful job of putting up with me sitting about looking sorry for myself and failing to help them with housework while I waft back and forwards from bed. I've made a large vat of turkey soup today though which I shall hope to use to make some amends!
Frankly the whole thing is a bit tiresome, and serves to underscore yet again just how much I want to get on with the damned transplant. At one point yesterday I even managed to get a bit excited when the next year's list of amateur latin dancesport national ranking competitions was published. With a bit of luck I'll make at least 3 of them toward the end of next year once I'm better. And that is the thought I shall be sticking with - focus on positives!
Wednesday, November 05, 2008
Waiting list update
I've just had some really interesting insight in to the state of the waiting list. Apparently I am currently number 12 on the blood-type A waiting list. In the past week and a half at Kings they have not had any 'A' livers available - they do come completely at random so its impossible to extrapolate from that.
To complicate things significantly they would not necessarily treat all 11 people above me before getting to me. Fortunately I am one of the most straightforward transplants they have waiting in my blood group due to my relative good health and fitness. Many of the patients above me are waiting for multiple organ transplants (e.g. both kidneys and liver), at least 5 are very heavy (requiring larger livers), and some have other complicating health conditions which would mean a much smaller portion of livers would be suitable for them. It is therefore quite possible that in many cases they would jump over many of those waiting before me.
So, a very uncertain picture, but I do feel more comfortable having a better idea of what is going on in their decision-making process.
In the meantime I am getting on a little better at work now. I am starting the process of handing over some of my classes to a supply teacher right now, as frankly my energy levels are not very good at the moment and I would imagine are unlikely to improve hugely. The kids have received the reasons why in their stride, with several of them speculating quietly whether I might in fact just be an alcoholic (not maliciously, they just can't resist being amusingly cheeky)! Generally they've been very nice about it, and seem to appreciate the fact that the school is managing the situation carefully.
So, a more positive picture, and I'm glad to understand the whole thing better. I'm going to have a meeting with a counsellor on Friday to make sure that I don't have any more falling-apart days like Monday, and to stay positively focused on keeping well, staying fit, and just being calmly ready.
And finally some great breaking news research that is highly relevant to me:
http://www.medscape.com/viewarticle/582920
To complicate things significantly they would not necessarily treat all 11 people above me before getting to me. Fortunately I am one of the most straightforward transplants they have waiting in my blood group due to my relative good health and fitness. Many of the patients above me are waiting for multiple organ transplants (e.g. both kidneys and liver), at least 5 are very heavy (requiring larger livers), and some have other complicating health conditions which would mean a much smaller portion of livers would be suitable for them. It is therefore quite possible that in many cases they would jump over many of those waiting before me.
So, a very uncertain picture, but I do feel more comfortable having a better idea of what is going on in their decision-making process.
In the meantime I am getting on a little better at work now. I am starting the process of handing over some of my classes to a supply teacher right now, as frankly my energy levels are not very good at the moment and I would imagine are unlikely to improve hugely. The kids have received the reasons why in their stride, with several of them speculating quietly whether I might in fact just be an alcoholic (not maliciously, they just can't resist being amusingly cheeky)! Generally they've been very nice about it, and seem to appreciate the fact that the school is managing the situation carefully.
So, a more positive picture, and I'm glad to understand the whole thing better. I'm going to have a meeting with a counsellor on Friday to make sure that I don't have any more falling-apart days like Monday, and to stay positively focused on keeping well, staying fit, and just being calmly ready.
And finally some great breaking news research that is highly relevant to me:
http://www.medscape.com/viewarticle/582920
Monday, November 03, 2008
Being feeble
Two blog posts in two days is a bit keen perhaps but today was a bit notable. Well, actually it was a bit crap. First day back at work and I was a bit of a mess. I can't really figure out why but I got ridiculously anxious about the whole thing, and went around in a bit of a daze. I was staring at the wall one minute, then feel stupidly upset the next. After 2 double lessons (6th form only luckily) I just decided that I really wasn't up to the slightly greater challenge of my GCSE class in the afternoon and went off to my dad's instead. After moping on the sofa there for an hour or so I went back home and fell asleep for 2.5 hours, and have been an immobile lump on the sofa all evening.
I feel really feeble about it though, and rather angry at myself. I might well have weeks or even months to go yet and I really can't go around being weak and wimpy the whole time. Everyone at work is being incredibly kind and understanding, and they have a teacher in from tomorrow who will mostly be doing cover but is ready to take over my lessons at a moments notice if I'm called up. Its brilliant planning really, and I'm so damned lucky to be in such a supportive environment. The last thing I want to do is to lose my backbone at this point and let my colleagues and kids down while there is still plenty of work that I'm perfectly capable of doing.
Anyway, I'm hoping that I'm going to wake up tomorrow feeling less feeble, and just get on with it. If I throw myself in to work then hopefully it'll take my mind of the whole malarky. I just need to stop jumping every time a phone goes!
I feel really feeble about it though, and rather angry at myself. I might well have weeks or even months to go yet and I really can't go around being weak and wimpy the whole time. Everyone at work is being incredibly kind and understanding, and they have a teacher in from tomorrow who will mostly be doing cover but is ready to take over my lessons at a moments notice if I'm called up. Its brilliant planning really, and I'm so damned lucky to be in such a supportive environment. The last thing I want to do is to lose my backbone at this point and let my colleagues and kids down while there is still plenty of work that I'm perfectly capable of doing.
Anyway, I'm hoping that I'm going to wake up tomorrow feeling less feeble, and just get on with it. If I throw myself in to work then hopefully it'll take my mind of the whole malarky. I just need to stop jumping every time a phone goes!
Sunday, November 02, 2008
One week down
Its a very odd process, this waiting. I get a little jumpy every time the phone goes, or every time I think my phone may have been out of hearing range, or just every time I think about the call! I must have dreamt every bizarre combination of events surrounding this bloody phonecall each night so far, but in the end I still don't know if I'm hours, days, weeks or even months away.
Its definitely time though. My eyes will start glowing if they go any more yellow, and the itching is getting increasingly severe - I actually wake up with aching fingers some times as I've been scratching so hard during my sleep.
Really its quite amazing that I was so well for the last 3 years since I was diagnosed and had my first blip. The consultant tells me that from my medical imaging (MRI, X-Ray, CT etc.) my liver looks among the worst of all his patients, and yet I've been among the healthiest. Considering that I've been able to do so much dancing, and move back in to full time teaching work as well, it's quite remarkable and I consider myself incredibly lucky.
Over summer I started showing signs of increasing bilirubin (the yellow jaundice pigment) and then right at the tail end of August I suddenly had severe pain and was admitted to the Royal Free Hospital (London's other major liver unit) where they dsicovered that a stent (tube) that had been placed in my bile duct 3 years ago had slipped and was impacting on my duodenum. After some morphine, a minor operation and a week in hospital I recovered but it definitely hastened the decline.
Rather scarily my consultant at Kings had to apologise that they should have apparently removed this stent after only one year in place, and I was all ready to transfer my care to the Royal Free. Fortunately though I was pointed to the survival statistics for liver transplants at all the UK centres and they are almost twice as good at Kings than the Royal Free, so I'm staying with treatment there. (if you're interested the data was at http://www.rcseng.ac.uk/surgical_research_units/docs/Liver%20Transplant%20Audit%20Report%202007.pdf - useful stuff from p22 onwards).
So here I am sitting and waiting for the call! Fortunately the second day I went back for my arterial blood gas test wasn't anything like as painful (they got it first go!) though I still have big bruises and aching all up my forearms from the first one.
I'm back to work tomorrow morning and not really looking forward to it - hard to concentrate on teaching when you know you're about to be whisked off for a major operation. Everyone of my friends and family have been so incredibly supportive, as has everyone who has already contacted me from work.
I just really, really, hope the call comes soon...
Its definitely time though. My eyes will start glowing if they go any more yellow, and the itching is getting increasingly severe - I actually wake up with aching fingers some times as I've been scratching so hard during my sleep.
Really its quite amazing that I was so well for the last 3 years since I was diagnosed and had my first blip. The consultant tells me that from my medical imaging (MRI, X-Ray, CT etc.) my liver looks among the worst of all his patients, and yet I've been among the healthiest. Considering that I've been able to do so much dancing, and move back in to full time teaching work as well, it's quite remarkable and I consider myself incredibly lucky.
Over summer I started showing signs of increasing bilirubin (the yellow jaundice pigment) and then right at the tail end of August I suddenly had severe pain and was admitted to the Royal Free Hospital (London's other major liver unit) where they dsicovered that a stent (tube) that had been placed in my bile duct 3 years ago had slipped and was impacting on my duodenum. After some morphine, a minor operation and a week in hospital I recovered but it definitely hastened the decline.
Rather scarily my consultant at Kings had to apologise that they should have apparently removed this stent after only one year in place, and I was all ready to transfer my care to the Royal Free. Fortunately though I was pointed to the survival statistics for liver transplants at all the UK centres and they are almost twice as good at Kings than the Royal Free, so I'm staying with treatment there. (if you're interested the data was at http://www.rcseng.ac.uk/surgical_research_units/docs/Liver%20Transplant%20Audit%20Report%202007.pdf - useful stuff from p22 onwards).
So here I am sitting and waiting for the call! Fortunately the second day I went back for my arterial blood gas test wasn't anything like as painful (they got it first go!) though I still have big bruises and aching all up my forearms from the first one.
I'm back to work tomorrow morning and not really looking forward to it - hard to concentrate on teaching when you know you're about to be whisked off for a major operation. Everyone of my friends and family have been so incredibly supportive, as has everyone who has already contacted me from work.
I just really, really, hope the call comes soon...
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