Check me out, I’ve made a start on the questions! There are quite a few (I don’t mind, I’m finding it really interesting to try and answer them!) so this may be several instalments.
What job are you doing at the moment, you talk about it but never really said what it is?
I’m a teacher. Sort of. I started last year when I was asked to start up a school choir at a local school, and it was a massive success which threw me into singing, music and education. I now teach at several different schools, doing some music and some vocal coaching. I absolutely adore it; with kids you never have a dull day. I also find it vaguely amusing that my job relies heavily on my lungs and breathing. I work part time (well, I try to work part time) as I have lots of LLTGL stuff to do as well.
When you were a student in Bristol where were your favourite places to party?
I wasn’t really that much of a party person! I think because by the time I was in second year my lung function was in the 30% range, I didn’t go out for wild nights very much. I did however love evolution (was that it’s name?!) where the DJ would play Sit Down and all the Bristol Uni students would sit on the floor leaving the UWE students standing (healthy rivalry. Honest.) Our favourite hang-out was a little dingy old mans pub which had a beer garden and patio heaters. And cheap drinks.
OK... how about what's the achievement in your life you are proudest of? And what's the one thing you want to do next more than anything else goal wise?
I think my proudest achievement is probably LLTGL. Em and I invested so much blood sweat and tears into it from the beginning, and to see it flourishing with such a fantastic team is a very proud moment indeed. Aims and goals? To carry LLTGL on to an even bigger and better future, but mostly, to squeeze every little drop of joy out of life and take everything it has to offer. And drink it up all thirstily and get my money's worth ;)
What's your favourite book ever?
My Family and Other Animals. It’s a wonderful, wonderful book that I’ve loved for many years, and return to reread whenever I’m at a loss of what else to pick up or if I’m feeling down. Close second is Life Among the Savages. Read both, they’re fantastic, and both very funny. I also love Morrie in his own words: a very very different kind of book but one I found very valuable when ill and asking myself big questions about life and death.
What is your lung function post tx?
Shockingly I am not sure of the exact percentage. It’s around 80% I believe, slightly lower that many because of the scarring caused by the infections post transplant and the fact that I have no working diaphragm.
How do you feel about having children post tx? Is it a complete no-no for you? I am listed for transplant, and its the one thing that scares me, the thought of not being able to have kids, and what any potential future husband will say about it...would be interested in your view, thoughts or feelings.
This is a very difficult question for me to answer as it’s very personal. Firstly, having children post transplant is not a definite no, I know post transplant CFers who have gone on to have children and who are still around. However there are risks, very similarly to having kids with CF really.
I’ve always had quite strong feelings about bringing children into the world when your own world is not very stable. Pregnancy and then looking after a child put huge strains on your body, ones that could cause harm to you, and potentially the baby. It’s a difficult question, at this time I feel that’s all I can say. But for the person who asked it, it’s not a no-no, and don’t forget there are other options, such as adoption and surrogacy. Try not to dwell on it as there’s every chance bringing up a child be a possibility for you. Somehow.
Before your transplant you seemed as positive and upbeat as you are now (I'm a complete stranger and I was sad/worried for you-but hopeful!). With everything that your CF came with, what did you do or what made you keep so up beat and positive?
Interesting question! I think it was people. I wrote this blog about optimism and genetics when I was very poorly. My fab family and other people I was surrounded by wouldn’t let me get down, or they wouldn’t let me wallow anyway (everyone is allowed a good cry every now and then). People were what kept me going. People close to me, people I’d never met, people who just wanted to make contact, people who had known me for years and kept the “me” part going under all the illness. I think my belief that people have the power to be as happy or as unhappy as they want to be helped; not always, obviously, but a great deal of positivity is about perspective. You can focus on the good or focus on the bad. That doesn’t mean life is that damn simple, but it means you have some control over where you focus your energies. I have always been lucky to have a lot of good going on in my life, but I pride myself on the fact I worked hard to keep the good times going, and to stay focused on them and committed to enjoying each day, just in case it’s my last.
What was your honest expecations in terms of a) actually getting a transplant and b) life after it if it did come?
My expectations of getting a transplant definitely changed along the way. At one point I was absolutely positive I would (I just knew it – that was quite early on) and at one point I knew I wasn’t going to be one of the lucky ones (that was the night I was dying and the family had to come and say goodbye.) The (as it turned out incorrect) realisation that it would never happen for me was really just one of huge sadness and disappointment, but on a scale that you can’t imagine. I wasn’t angry, just very sad. As for life afterwards...I didn’t really let myself dream about it. I figured if it got to the end and I’d imagined all the possibilities and then they never materialised, I’d be even more upset...even more upset about dying than just upset then, god knows where that logic came in! It was part of my “focus on the now” mentality, to try and keep me enjoying the good things that life had to offer at that moment. About 8 months after my transplant, my mum and I were talking about the difference and she said that she still couldn’t quite believe it. She knew we were going for transplant as it would keep me alive but she never imagined in a million years just what a transformation it would bring. My hopes of life post transplant were teency in comparison to the life I’m privileged enough to lead at the moment.
Those are the first few, will work on the rest. I promise :)
A short trip to ITU
2 weeks ago