Wednesday, January 16, 2013

The luckiest girl in the world.

Almost a year has passed since I last blogged. As I'm sure you've all gathered now (and by "you all" I'm clearly assuming that anyone still checks in on this blog) I stop writing when life is going well. So you can probably also gather from that that life is going very well indeed.

I just feel so incredibly lucky to have this wonderful life I have now, thanks to organ donation; to my donor, to the hospitals and staff who saved me, to my family and friends who kept me going.

Six years on and life is magical. I am working in a job I love, I own a house and have to worry about things like the mortgage, council tax, and bills. I am edging ever closer to 30, an age which at one point I was convinced I'd never see. I am normal. Life is normal. Life is wonderful. And this year, life is about to become that little bit more special as I am going to become a mummy.

Several years ago, A and I embarked on a surrogacy journey which would prove to be quite a roller coaster. Surrogacy is essentially where some very special individual offers to carry your baby for you, and is done for those who cannot carry their own child for whatever reason. Mine was the risk it posed to these precious new lungs; it was ill-advisable and I knew I could not risk jeopardising this gift.

You can find out all about our surrogacy escapades on mine and Niki's (the incredible woman who is doing all this for us) joint blog:

Please remember to keep spreading the word about organ donation; there are so many people out there waiting to embark on this potential chapter in their life which is currently just out of their reach. People like Sam, like Kerry, who are still waiting for their new life to begin.

Click here to sign the organ donor register.

Tuesday, February 21, 2012

Jamie Whyte’s views (“Donating Organs could prove a costly decision”, Wednesday 15th February) sadden me. Whilst his misconceptions about organ donation are shocking, they are made slightly easier to understand after reading that he trusts his wife so little as to make sure his life insurance “pays out less if I die than the net present value of my likely future earnings” so as not to “put temptation in her way”. This lack of trust, even in those closest to him, perhaps goes a little way to explaining his views.

Mr Whyte, a senior fellow of the Cobden Centre, believes that signing the organ donor register “increases the chances that you will die”. He suggests that as a registered organ donor, doctors working to save your life will end care sooner, as the temptation of removing your organs will become too great. This shows a huge naivety about both the process and the premise of organ donation. He uses cold calculations – “If you are a donor, your death produces a net gain of three lives. If you are not, it delivers a net loss of one” – to support his absurd theory that the medical professionals attempting to save your life are really only after your organs.

When you are admitted to a hospital, having suffered great injury or severe illness, that hospital’s priority is you. No hospital wants to lose a patient – to put it in as cold and clinical a light as Mr Whyte does, it doesn’t look very good on their books to lose a patient, let alone all the moral, ethical and social reasons that people practise medicine. Medical professionals are there to treat their patients. There is no great conspiracy; they want to care for their patients, heal their patients, and enable their patients to return home.

I wonder if Mr Whyte knows that, statistically, he himself is more likely to need an organ transplant than to become a donor. Does he have a family? What if his wife or someone else he loved needed a transplant to save their life? I assume from his sentiments in this article that he would turn one down on moral grounds, and let them die. Three people die waiting for a transplant every single day, a figure which starkly contradicts the image he paints of a society where hospitals whip out people’s organs at the earliest possible opportunity.

People who become organ donors would have died regardless of whether they made that decision. The only difference is that in a moment of great tragedy, they have chosen to help others go on living. There is no greater gift, no greater legacy that someone can leave behind. I should know; I would have died in 2007 were it not for a generous stranger who I will never have the privilege of meeting.

I hope that Mr Whyte finds more trust and happiness in his life. I hope that City AM, who published such absurd views, also publish an article countering this opinionated piece with concrete facts. And I hope that people think properly about organ donation, look at the facts and discuss it with their families, before making a decision, perhaps one that could save nine lives after they have gone.

Thursday, June 02, 2011

My grandad was an extremely generous, humble and loving man. We had to say goodbye to him yesterday, and though it was very sad, it really was a celebration of a wonderful man who influenced many throughout his 95 years. The number of people there was particularly incredible for a man of his age, and showed, I think, how loved he was.

Grandad quite simply took pleasure in everything about life. He had by no means had the easiest of lives, one of the most difficult periods being when he was captured at war, and held in a prisoner of war camp for 3 years. In the reading given at the service yesterday, it said how incredible it was for someone to come through all of that and not have a shred of bitterness. I completely agree, but knowing my grandad, I am not surprised.

I loved listening to my grandad's stories. He would often talk about his life when he came home from the war, was reunited with my gran, and lived in a little caravan which he bought with all the money he had. He said those were some of the happiest years of his life, because he was reunited with my gran, and they were both safe and well, and able to start a family. Family meant more to grandad than anything else in the world.

My grandad never stopped being facinated in life, and all that it had to offer. He was still going to literature classes at the age of 90, and loved huge Everests of literature such as Pepy's Diaries and War and Peace. He was so knowledgeable; I remember phoning him when I was at university, and telling him about the book I was studying (Candide). He listened with great interest as I told him my thoughts on it all, before quoting the final line of the book, beautifully, and off by heart. He was so humble, that I never even knew till yesterday, that he had been awarded a BEM.

One of my favourite memories is sitting at a pub in Derbyshire with him and A, and he picked up the OAP menu saying "isn't that lovely that they give the old folk a special offer." He was about 87 at the time. One Christmas, we were at his house, arguing about who was number one at the time, and he interjected with "no it's actually the Spice Girls" which was, of course, correct.

The biggest thing that my grandad taught me is that you can be completely satisfied with your lot, and yet still push yourself to better yourself, to learn and achieve more, and to explore the world in greater detail. It seems like two very opposing points of view, but he managed to do them both. He wanted for nothing, except for his family to be happy and thrive, and I've lost count of the number of times I heard him say "I'm a lucky man". Truth be told, I think we were the lucky ones.

"I feel that I cannot vanish, since nothing vanishes in this world, but that I shall always exist and always have existed." - Leo Tolstoy
It's been a while...


And apparently I only blog on family birthdays now, as today my tiniest dot of a sister Abby turned 21 and is now a big grown-up. Sort of. Happy birthday boblet xx

So let's talk about me (well this is my blog after all...)

When last I wrote, I was still needing monthly bronchoscopies as that pesky lower lobe in my right lung was convinced that closing up in a sulk was the right answer. I had also been chasing my fundo op for some time. Quite a long time. Too long for my liking actually.

Anyway, the good news is I was fundoplicated (word? if not, it should be...) on 7th April (when they called to change the date I was ready to go a bit stabby, but luckily it was only to delay it by 24 hours) and it was ok. A and my mum came up with me on the day, and all seemed to be going fine, until the surgeon took a look at my stomach and noticed the scar from my MI op which I had at birth. Cue a slight panic as my scar is rather large, and they were immediately concerned that keyhole surgery would no longer be possible. I was told I'd probably need open surgery, an epidural, and a couple of nights in intensive care. You can imagine how well I took this and sulky my face became.

There was also a minor panic when they read my chart and realised I was a transplant patient going under a GA (random nurse reads "lung transplant" and sees "DANGER") but luckily I had a wonderful anesthetist who took one look at me and said "don't be daft, she's stronger and fitter than most of us!" Luckily for me, it all went very smoothly, the surgical team were excellent and I woke up relieved to discover that it had indeed been done via keyhole. Eating and drinking was very tricky at first - I could only really eat soup for the first week and even drinking liquids too quick caused a lot of pain - but I'm now pretty much back to a normal diet, except that I cannot eat quickly, and I cannot eat half as much as I used to be able to (neither of these are bad things).

The most exciting news of all is that my lung function has already improved. In fact, Harefield were so thrilled with my report that Dr C has taken me off the various nebulisers I'd had to go on to stablise things. Needless to say, I'm over the moon, and to anyone being "threatened" with this operation, yes it isn't very nice, yes it is a hassle, especially the lack of eating part afterwards, but I know many many people for whom it has worked wonders, and I appear to be one of them. Not nice in the short term, but worth it by far in the long term I hope.

So that's an update on me. I'm going to write another little blog now, which I think will autopost tomorrow. Bit like buses, my posts.

Tuesday, March 08, 2011

Today is the day my mum has been waiting and hoping for....I'm going to dedicate an entire blog to her.
Actually the reason today is so exciting for my dear mother is that she is celebrating the big 5 - 0! Anyone who has met her will know that that's very hard to believe, but it's true. So I would like to take the opportunity to write about the wonder that is my mum.

When people meet my mum for the first time, I think the main thing they are hit by is the sheer energy she brings with her. Apparently I'm quite like my mum, but I'd say you need to times everything by 200 - volume, passion, chattiness etc - and you're coming somewhere close. Meeting my mum for the first time can leave you feeling a little like you've been hit by a tornado, but there's no doubt that her enthusiastic and warm personality is completely infectious. She wrote in my blog once and her post received the highest number of comments my blog has ever recieved.

My mum is a huge inspiration to me. She is one of the strongest people I know, but unashamedly wears her heart on her sleeve. She taught me that being brave isn't about keeping a stiff upper lip; sometimes it's about weeping copiously about the sad times and then picking yourself up and moving forwards. She taught me that family and friends are pillars of strength that can give even the blackest situation some colour again.

As a child, my mum taught me that politeness, manners, and good behaviour are not an optional extra. Her capacity to love and care for my sisters and I in equal and abundant measure, especially throughout the turbulent health years, is exceptional. She's been there for me every single step of the way, physically and mentally, and has fought my corner fiercely when I've not had the energy to fight it myself.

My mum has shown me that if you want something, you should go after it. Nothing is unachievable with hard work, and you're never too old to start something new. My mum has had several different careers, and not so many years ago, she decided she wanted to be a teacher; she is now a headmistress and has just completed her MA.

My mum taught me that my CF doesn't mean I'm more unlucky than others or that I am allowed to wallow in self-pity, but that everyone has their own burden to bear, and you just have to get on with it. People say I'm great at making the most of life, but it's because of her that I'm able to do so.

I have learnt from my mum that you have to lead by example; if you believe in something, then you need to be the one to set about doing it. Don't wait for the world to change, go out and change the world. That even if some people don't believe it can be done, you can be the one to try and achieve it.

My mum has shown me how to seek joy in life; how to look for the positive, find the funny side, and enjoy the moment. She's shown me that a rich and fulfilled life isn't handed to you on a plate, but instead you have to grab it with both hands and make the most of it. I am biased, but I believe that she is truly one in a million, and I couldn't be luckier to have such a wonderful loving role model in my life.

Happy 50th Birthday Mummy, thank you for being you xxxxxxx

Thursday, February 24, 2011

Eep, a very neglected blog! In fact I only realised how long it's been since I posted when I got an email from a follower, checking everything was OK! So apologies for that folks.

As always, great big lapses in blogging means that life is going well, and far too fast. Health is fine at the moment; following my last bronch I was started on steroid nebulisers and they also discovered I had a chest infection (which explained why I felt so hideous afterwards). The combination of whacking that infection on the head plus these steroid nebulisers has been really positive and the best bit is, I had my monthly bronch on Tuesday and for the first time, the airways were open enough that they didn't have to do dialitation! I'm due in clinic in 4 weeks, but this is an excellent sign as it looks like said airways are getting bored of mucking around and starting to behave nicely.

Stomachtwistyop wise, I've had my outpatient appointment and I've had my pre-op assessment and I FINALLY have a date for the op; 6th April. Am a little frustrated to say the least, as this will be a grand total of 5 months after referral, and I know the surgeon who reviewed me put me forwards as urgent. But at least I have a date, the op will get done, and hopefully my right lung will be impecibly behaved afterwards.

The most exciting event in the last month is probably the fact that I somehow managed to win the Lifetime Achievement award at the Justgiving awards! It was a wonderful night, full of inspiring stories and fantastic people, and I was genuinely shocked to win. LLTGL were up for Best New Charity but were beaten by Shelterbox. We all had a fantastic evening and you can read more about it on the LLTGL blog here. Here's a few pics:

Work is great, exceptionally busy, but am currently on half term so am trying to catch up with myself. I am hoping next half term is slightly less frantic as I do feel like I'm chasing my own tail most of the time at the moment! What a nice thing to have to worry about though, being too busy. Hopefully won't leave it another month till the next update!

Wednesday, January 12, 2011

Wheezy Penguin: Revisited.

It's always tricky undergoing procedures when you're feeling perfectly well and you know that they'll make you feel rather crap. Yesterday was bronch number...actually, I'm not quite sure what number, but it was another one anyway.

Dr C was hoping that it would be a case of going in, taking a look at the naughty airway which keeps closing up and seeing that it's decided to behave and stay open, however unfortunately this was not the case, and when they got in there they saw that it was as inflammed and restricted as it has been every other time.

This means that I'm booked in for yet another bronch, stenting and cryo....freezing...thing next month as well. A tad frustrating, however Dr C is still confident that this is all down to my reflux, so bring on the fundo op is all I can say! In the meantime, he's stuck me on a steroid nebuliser. I didn't even know they existed, so you learn something every day.

Bit frustrated as I woke up feeling awful today - lots of pain and very wheezy and breathless. This meant a morning of sleeping and no work. Hmm. I don't like missing work, in fact I'm pretty much only ever off work if I'm actually in hospital. As you may have noticed over the years, I'm not a patient patient.

As I said at the beginning, it's tricky psychologically going into a procedure feeling fine, and coming out feeling rubbish, but I know that it's vital they keep stenting this airway open as I do not want my right lower lobe to suffer permanent damage. The team know what they're doing and the important thing I need to remember is it's all preventative; it's all about keeping me fit and well, rather than anything more sinister.

I have my appointment with the stomachtwistyman (as he shall henceforth be known) on Friday so hopefully will find out more about when the fundo op is then. Do you think asking for it to be sooner rather than later because my birthday is in March and I want to be able to eat Birthday cake counts as a medically relevant reason for urgency....?

Tuesday, January 04, 2011

Four years ago today, my life was saved by someone I never had the priviledge of meeting.

I didn't know them, I didn't know their family, they knew nothing about me.

Four years ago, life was very different. My lungs were functioning at just 16%. I was completely dependent on a variety of drugs to keep me alive, and wore oxygen 24 hours a day to support my fragile and exhausted lungs. I had a carer help me get out of bed and dress myself. I could not brush my own hair. I could not speak in full sentences. I was so breathless, I could not walk. I could not laugh.

Four years ago, someone, somewhere suffered a terrible tragedy. A family's world was turned upside-down, and in that moment, they made the decision to donate their loved one's organs.

Four years ago, after 22 months on the waiting list, I received the call that saved my life. Following the transplant, the doctors confirmed that without that call, I would not have lasted more than a couple of months. Because of that call, I have had four wonderful years of experiences, hopes, dreams, challenges, joys, sorrows, laughter, tears, birthdays, christmases, celebrations....of life.

The word thank you is not enough. The gratitude I feel is not enough. I ask you today to please keep that special family in your thoughts, because they are marking a very different kind of anniversary. I hope the knowledge of what they have done for me and the others saved that day brings them a little comfort. I cannot imagine how they are feeling.

I bang on and on about it, but it's because it is literally a matter of life and death. Organ Donarion saves lives, but apathy kills. One family, one decision, that's the only reason I'm here today. There are thousands of people in the position I was in four years ago, desperately hoping and waiting. People like Tor.

Please consider sharing this blog with anyone and everyone, and if you're reading this and have been motivated to sign up, you can do so here.

I remember my donor with each breath. Please, Live Life Then Give Life.