tag:blogger.com,1999:blog-184880652024-03-16T07:08:10.829+00:00This is my life, and I choose to love it.My life on a plate! A place where I get to waffle on about anything and everything, and hopefully raise some awareness about Cystic Fibrosis and organ donation on the way.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.comBlogger374125tag:blogger.com,1999:blog-18488065.post-18901865023232688922013-01-16T18:57:00.000+00:002013-01-16T18:57:34.992+00:00The 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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: <b><a href="http://www.cheeseteamcakesjourney.blogspot.com/">www.cheeseteamcakesjourney.blogspot.com</a></b>.<br />
<br />
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 <a href="http://endofmytether-sammie.blogspot.co.uk/">Sam</a>, like <a href="http://kerryalexxx.blogspot.co.uk/">Kerry</a>, who are still waiting for their new life to begin.<br />
<br />
<b><a href="http://www.lltgl.org.uk/nhbsbt">Click here to sign the organ donor register</a></b>.<br />
<br />
<br />Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com57tag:blogger.com,1999:blog-18488065.post-53959017676423612372012-02-21T15:52:00.003+00:002012-02-21T15:57:27.246+00:00Jamie Whyte’s views (<a href="http://www.cityam.com/forum/donating-organs-could-prove-costly-decision">“Donating Organs could prove a costly decision”, Wednesday 15th February</a>) 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.<br /><br />Mr Whyte, a senior fellow of the <a href="http://www.cobdencentre.org/about/">Cobden Centre</a>, believes that signing the <a href="http://www.lltgl.org.uk/nhsbt">organ donor register </a>“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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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 <a href="http://www.lltgl.org.uk/nhsbt">one that could save nine lives after they have gone</a>.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com18tag:blogger.com,1999:blog-18488065.post-63224485145608265062011-06-02T18:34:00.006+00:002011-06-02T19:05:45.080+00:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOFrW6GHJhKw5LMjNTdnFSywo94jvDqILU5HF4TG98lZUDXxC2avIpW2O2VngoBtaI_qLCyRHcnCfUUgP4wULuObbEnAHybAaQ6u4R59vDcm8vnu_zZAYq04ye8Y8E9tNG0u-RlQ/s1600/Gdscan0020.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 140px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5613695673883945282" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOFrW6GHJhKw5LMjNTdnFSywo94jvDqILU5HF4TG98lZUDXxC2avIpW2O2VngoBtaI_qLCyRHcnCfUUgP4wULuObbEnAHybAaQ6u4R59vDcm8vnu_zZAYq04ye8Y8E9tNG0u-RlQ/s200/Gdscan0020.jpg" /></a><br />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.<br /><br /><br /><br /><p>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. </p><br /><br /><p>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. </p><br /><br /><p>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 <em>Pepy's Diaries</em> and <em>War and Peace</em>. 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 <a href="http://en.wikipedia.org/wiki/British_Empire_Medal">BEM</a>. </p><br /><br /><p>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. </p><br /><br /><p>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.<br /></p><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 134px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5613693149024975074" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikS0k8KMg7Rij-jhKv8mVxJarQYzehBPgZc9fasYp7dVzuuoVWlvjk3MVYr8Y9gCpwzZulwPQ42xLRrt0n0GVn-6EzFL-_QW6kk8N3ym0tQ76a295RuYRQytr8BebNLt-9Nr_DZg/s200/Grandad+at+wedding2.jpg" /><br /><em><strong>"I feel that I cannot vanish, since nothing vanishes in this world, but that I shall always exist and always have existed."</strong> - Leo Tolstoy</em>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com19tag:blogger.com,1999:blog-18488065.post-62943695532832720502011-06-02T18:33:00.000+00:002011-06-02T18:34:12.152+00:00It's been a while...<br /><br />Oops.<br /><br />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<br /><br />So let's talk about me (well this is my blog after all...)<br /><br />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.<br /><br />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.<br /><br />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).<br /><br />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.<br /><br />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.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com2tag:blogger.com,1999:blog-18488065.post-30610144076151394852011-03-08T05:42:00.000+00:002011-03-08T05:42:00.818+00:00Today is the day my mum has been waiting and hoping for....I'm going to dedicate an entire blog to her.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHEclugFLbpgjhk5AKaFGVbS1iq8gQAWW7w6aekkxo4ahP-A6UwYFvV9SFdf-gkcRMcxiEKj469yfh5ffyCij2iQYOFnA-P-OxD04C7JqZJXPNZ_L44AJPiasmgkhrK6nNJ2oMLA/s1600/Annie+and+Emily++cropped.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 151px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581375337934052930" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHEclugFLbpgjhk5AKaFGVbS1iq8gQAWW7w6aekkxo4ahP-A6UwYFvV9SFdf-gkcRMcxiEKj469yfh5ffyCij2iQYOFnA-P-OxD04C7JqZJXPNZ_L44AJPiasmgkhrK6nNJ2oMLA/s200/Annie+and+Emily++cropped.jpg" /></a> 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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPiO7FfYXvZ47SR4HFY7sJR8QQikmKHnpDXpkL5qBZlQlor39B-4mQdLa2sDex0hjf73np79owYO2HQFt6DlH4cFiohC0wc3-UynvSrAvAY-xbqLf6Y4xgNVFrjeJGVMRGwmIrxw/s1600/Mummy+and+girls.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 200px; DISPLAY: block; HEIGHT: 134px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581376982031012738" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPiO7FfYXvZ47SR4HFY7sJR8QQikmKHnpDXpkL5qBZlQlor39B-4mQdLa2sDex0hjf73np79owYO2HQFt6DlH4cFiohC0wc3-UynvSrAvAY-xbqLf6Y4xgNVFrjeJGVMRGwmIrxw/s200/Mummy+and+girls.jpg" /></a> <div><div></div>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 <a href="http://pinkandsmiley.blogspot.com/2007/01/due-to-star-of-this-blog-being.html">wrote in my blog once </a>and her post received the highest number of comments my blog has ever recieved. </div><div><div><br /><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 200px; DISPLAY: block; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581375594335377106" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgniPcTM7SJnru750SXMSAeLFixKDrDHu9QyjL991miMm2E_YAjxzSfNmv1QnSM953K4XZhO7DIBm99vMcC4afAyX8cL40TWl25QKBn7HiRKaPGXHzF7DfoTY8t8UCKDqIN0_0beQ/s200/05.JPG" /><br /><div>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. </div><div> </div><div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 122px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581392867796275650" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5b0ULW6fe55jFVFUOhymmt7a4b9-5nr0K1ELiHDQnb1Oc4qsoCRcyYRzKQ_eQAMSapft6ryQPo1eLRIJOj3ZhXHzacIe6FpL-vB3ym3l8vCrfWE5lAYyfcBNwxi5cCO8ijGJXKg/s200/Mummy+onmy+wedding.jpg" /><br />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.</div></div><div><br /><div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 200px; DISPLAY: block; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581384437100557314" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjXO3SViRy2ojNCEZwzdO0yvnA-VbvqKUzgSWaTmiAtf4zHTF5NjtSwtY7im1uhuKP9pGdqtUSb6rZTa9cZO3KJYMIj5qRJ3h1AIFrEBTcEYGFwG-tYNbR76GiOhcqH6M00IBhTQ/s200/Mummy+and+I+1.jpg" /><br />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. </div><br /><div></div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzy_6p__TABSgZoy8pTb8gB5mcLPW_lOe9uWvHEEfSNmmOTS9uyd3TTpoOj2eFo-IGEG5h1n7D81j7z60t_Qkd8yFwAulC2E3kGh42aN4zSGUNNU0iXUWAhVuVmlSwgtPfAVyjqw/s1600/Annie+MA.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 164px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581384165901299042" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzy_6p__TABSgZoy8pTb8gB5mcLPW_lOe9uWvHEEfSNmmOTS9uyd3TTpoOj2eFo-IGEG5h1n7D81j7z60t_Qkd8yFwAulC2E3kGh42aN4zSGUNNU0iXUWAhVuVmlSwgtPfAVyjqw/s200/Annie+MA.JPG" /></a>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.<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhisNAE4BggRVI2kG99ZpgQQoJHy5xxmwMiOK94WdRUTcq9O_k9W3bHEIoibterLb3Il7vatbgnoka9Rzq8fke5OLpQlHo4q3YOeTltOVugL8bGnovzOg-9d_mgvwnVtmSgURULyg/s1600/Annie+and+Emily+2.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 148px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581382555623939474" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhisNAE4BggRVI2kG99ZpgQQoJHy5xxmwMiOK94WdRUTcq9O_k9W3bHEIoibterLb3Il7vatbgnoka9Rzq8fke5OLpQlHo4q3YOeTltOVugL8bGnovzOg-9d_mgvwnVtmSgURULyg/s200/Annie+and+Emily+2.jpg" /></a> 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.<br /><div><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc4eIuL9ZhGvkecswe8pgAub-Y_m9fFJnAMRdSPLL_u5sewvkNIcPV1n2h9-W5aV01cCKtK64lCE_RSbleEgrS4_UN8yEibKoXdXxTMOoQxKzrxf_fz2VUgPLJarbAwd-jKkY4qg/s1600/Mummy+and+Emy.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 155px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581382622350293986" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc4eIuL9ZhGvkecswe8pgAub-Y_m9fFJnAMRdSPLL_u5sewvkNIcPV1n2h9-W5aV01cCKtK64lCE_RSbleEgrS4_UN8yEibKoXdXxTMOoQxKzrxf_fz2VUgPLJarbAwd-jKkY4qg/s200/Mummy+and+Emy.jpg" /></a><br /><div>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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8AIpxB6vpE14tsWngAKaaUvEDP4ew3oCARv9xoHvFKg0pZlINno57ds5YGAL7hA4ztR-LS03SM54TCKsJr11gYAIH45jAlKKft4hhyphenhyphenxDB7kGmyhymkNlbXBcup1dO_sZWS7wlMQ/s1600/Annie.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 200px; DISPLAY: block; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5581377969260639282" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8AIpxB6vpE14tsWngAKaaUvEDP4ew3oCARv9xoHvFKg0pZlINno57ds5YGAL7hA4ztR-LS03SM54TCKsJr11gYAIH45jAlKKft4hhyphenhyphenxDB7kGmyhymkNlbXBcup1dO_sZWS7wlMQ/s200/Annie.jpg" /></a> Happy 50th Birthday Mummy, thank you for being you xxxxxxx </div><div> </div></div></div></div></div></div>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com19tag:blogger.com,1999:blog-18488065.post-85130507131415206802011-02-24T16:25:00.008+00:002011-02-24T16:49:23.301+00:00Eep, 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.<br /><br />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.<br /><br /><br />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.<br /><br />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 <a href="http://livelifethengivelife.blogspot.com/2011/02/extraordinary-emily.html">here</a>. Here's a few pics:<br /><br /><br /><p><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 200px; DISPLAY: block; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5577298103234293506" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCRzACrqUZYxgeGCMU2KMs28nwvhB700qePeQvan_quGpbqUVLirJeTds7IoM6HX1fL814rNpEeA7_kW8D4xRY7J6osvxJ7j_ml9cD3GCejx8emZQDpKTwDyh9t75a2yOrYGMMvQ/s200/Emily+Lifetime+Achievement+.jpg" /><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 200px; DISPLAY: block; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5577298712703924082" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKKRJlg9sX53DMkCQ6r4QhVzP4U7iB4XM03HAQzUEARogL5oFHp8JsfGhymyspvPNk-pn7N19T7HDluCI7banqIUJGaBHV4n_Y41pcKGKiszS-on6ZXs7JEPyPvkv7p6kXEhcwJA/s200/Team+LLTGL.jpg" /></p><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 150px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5577297493246731730" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-W9ksHbozOKHsG8MUBTRafB1BHXY_YL5EzobaTeHrphyphenhyphenj0cxC8sgo96ceQ8bsQXJooqTox01cQpBVJMi4GBxGcwZ59x7kJRMUDg1DTBkJUYxD4z4tZF_3LDTY_bxvAwGx_n5iBw/s200/IMG_3705.jpg" /><br /><div>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! </div>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com2tag:blogger.com,1999:blog-18488065.post-6894214805931252532011-01-12T17:30:00.001+00:002011-01-12T17:44:50.540+00:00<em>Wheezy Penguin: Revisited.</em><br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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....?Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com9tag:blogger.com,1999:blog-18488065.post-66776302221406835102011-01-04T07:53:00.001+00:002011-01-04T07:54:56.736+00:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0UovHZ9Ri-7Uq_WqwZL_3GJ2aAoE_dWPUtikuzuwGaS8D7kFPnEzC9IdDuHh8g9TcqeQjkV9cW60sINmoJ61tGps9k7cP6tNtaAxgt4kCC8_gU_xckgvcioQ2pYQV-vL35YiEkg/s1600/Then+and+Now.jpg"><img id="BLOGGER_PHOTO_ID_5558235939264111538" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 134px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0UovHZ9Ri-7Uq_WqwZL_3GJ2aAoE_dWPUtikuzuwGaS8D7kFPnEzC9IdDuHh8g9TcqeQjkV9cW60sINmoJ61tGps9k7cP6tNtaAxgt4kCC8_gU_xckgvcioQ2pYQV-vL35YiEkg/s200/Then+and+Now.jpg" border="0" /></a><br /><p>Four years ago today, my life was saved by someone I never had the priviledge of meeting.<br /><br />I didn't know them, I didn't know their family, they knew nothing about me.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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 <a href="http://tor-pastthepointofnoreturn.blogspot.com/">Tor</a>.</p><br /><p>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 <a href="https://www.organdonation.nhs.uk/ukt/Consent.do?campaign=1160">here</a>. <br /><br />I remember my donor with each breath. Please, Live Life Then Give Life.</p><br /><p></p>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com4tag:blogger.com,1999:blog-18488065.post-42479586544163807852011-01-01T13:02:00.010+00:002011-01-01T14:04:14.560+00:001st January 2011.<br /><br /><br />I think I'll type that again. Just because I can. 1st January 2011.<br /><br /><br />There's nothing quite like a new year to remind you just how bloody lucky you are to still be here. I am sitting looking out of my window at quiet and sleepy stillness outside, relaxing after a busy night of partying, and thinking just how wonderful it is to be commencing a new year full of new hopes and opportunities.<br /><br /><br />Looking back on 2010, I'm unsure on how to summarise it. Technically it was a mixed bag, with huge sadnesses such as the loss of Jess, and a few turbulent health patches dotted throughout the year, however I can honestly say that my main memory is that it flew past far too quickly due to so much happy stuff being crammed in.<br /><br /><br />Things such as a wonderful trip to Mauritius, celebrating my 26th birthday 90s stylee, hours and hours of endless joy provided by my goddaughter and my niece, the glee showchoir, concerts, singing, partying, dancing, friends, family...these are the things that made 2010 great.<br /><br /><br />A few of my fave pictures from the last 12 months to finish. Wishing all my blog readers a happy and healthy 2011. What will the next 12 months bring? There will be highs and lows, tears and laughter, joys and sorrows, because that's what life is made up of. No-one knows for sure exactly what this year will bring, but I'm going to try my hardest to make the most out of every second.<br /><p><img id="BLOGGER_PHOTO_ID_5557213825988760162" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVA6wNqW7ihZG2ybRpilymJNVIgDf9Oud1LgOBviF_JjRGKTA4Jzldps490WICg6uYZhAT4eVw5uEqg2XB7HBfMRN2CzBtv6v674D9ZDtQBVCVS_4NdbaTOfS1_Za7o_EkF19SFQ/s200/Mauritius.jpg" border="0" /><br /><img id="BLOGGER_PHOTO_ID_5557214943922077058" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 146px; CURSOR: hand; HEIGHT: 200px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcUQTHrEN5le_EMlYAwNcL36ecIh0D8zsesxzSzhzj4PM7TYbdSk-_HWBK19u0O3hWGgU61U-mLkPpTWoGyGUWQv06pgOr6g-uiTVAW1gHDX-vPPsTtjXFMXLEIjpXnkQ61e9nbw/s200/bday+2010.bmp" border="0" /></p><p><img id="BLOGGER_PHOTO_ID_5557215894638340786" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 134px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdA5YgnIkOEElgxmBR1LxC4jzJH34yxCBwlTT6V6JKeBX6kdRxP0s6xNVl7X-Yl-R_U7mzFrQ4XnWouElWJmYdeEohOTl5oVovdup4-mHuH9mXY_6gvpZvb0mhnHrmPcnh9NM7GQ/s200/LLTGL+folk.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5557213827429947234" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1bO4jPF50am49GANj-a7lGazBPzie7ai9DJRheRMR6vuuH5l1sBxAp-_GqS7-xDQSRdeqoNBbIG1gVe8E2k0c-ruO57_vZn92izhnp4yipwstUU9xYluONz1DihoAFbnevQa6sQ/s200/Holly+and+Emily+-+Team+Jess.jpg" border="0" /> <img id="BLOGGER_PHOTO_ID_5557215897703100306" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmWSSiBcMLCgfwnbp7T3KF_0pGKxQlKpl8k04PISQQNR7KULAHev8RmUOvIFqek4NHMuP_bizc1pS5rOLgxxABZhwk4aU0xU3NokRlfogIzvK4itUOAIShn_XEzScfaG8TSl8PTQ/s200/ETCO+Speech+2010+4+sm.jpg" border="0" /><br /><img id="BLOGGER_PHOTO_ID_5557213306055838098" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 134px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWsdvrZ-yTbqNjezFWgR-YPZsioCn-TMTmSyL5UGVtd-HOdX31vYGoLG6dSC7Ojk9qFRdxzjDaK9k0PGebrT9fuiH5Nl47CpTe3ve5tl2-UiMxq2hpnaBQBRM472ucIUNkePUkoQ/s200/choir+2010.jpg" border="0" /> <img id="BLOGGER_PHOTO_ID_5557214942006518418" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh068kdIkDDcijhZbDkVW-PZv2wQeMQmPM5uMThoEdPhyo5Zz9c5ZpiG5gex1u6kxcWXNzEpGiKVKgg1tXnWd8cFrv-yxRzd1LuzoVK-tQeN4ITzn782tJWMxBbhm-jL7X5K4076g/s200/Lizzie+and+Em+Sept+2010.bmp" border="0" /><img id="BLOGGER_PHOTO_ID_5557214945981307442" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKldbLY1EnzulqCUWWAZcTr6FMA-6w2-tcB6SX1ghpiqacuC4z-lhl_s6gvTuk23jSSgbrUgQ-2_pVm3dPJRdNPBlL16dFrgXFt8r9Nh1c2h3k6dzUZZiQKlur_qpHepdcV7l3mA/s200/Anna+Claire+and+me.jpg" border="0" /><br /><img id="BLOGGER_PHOTO_ID_5557213836912421298" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 134px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeFZuBDTdeV8NjhQFf_Bvb1Lzkn0wOQKIPRo_WoaSFhOVIw0t8kVN7XL-rhyojkC1PVM5NHYZEzZnauARkn7rD31eV3ap6MYib_x5iA9RO4_pZfaIaMYubQljQOh5QFfK3_2hlQg/s200/sisters2.bmp" border="0" /> </p>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com2tag:blogger.com,1999:blog-18488065.post-82992346394448855232010-12-03T18:10:00.005+00:002010-12-03T18:18:57.699+00:00Wheezy Penguin update time!<br /><div></div><br /><div>Look at me being so restrained that I didn't immediately post I'M HOME AND MENDED this time after discharge. Instead, I've been very cautious and waited a full week to watch for any yo-yo type behaviour, but since I was discharged a week ago today I think I can now safely say I'M HOME AND MENDED.</div><br /><div>Well, pretty much mended. Basically, we are definitely on the right road now. Watching my lung function creep up steadily day by day has been a huge relief and joy. Not quite back to normal yet, but practically there. I've even been into work (don't tell me off, I only made it in 2 days before the snow scuppered that plan anyway....) and in fact Harefield are so happy that my follow up appointment I was due to have on Monday has been cancelled. WOOHOO! </div><div><br /> </div><div>It seems like the answer was a big fat whack of methylpred followed by a now 6 week long course of high dose oral pred. Whilst I am now thinking about food practically 24 hours a day (thanks steroids) they have done wonders, and I feel so much better. I had almost lost an entire litre of capacity so the difference is quite marked. I will confess I was rather scared at some points, particuarly when the phrase "we don't know what's wrong" was uttered (more than once) as I'd always rather know what I'm dealing with. </div><div></div><div></div><br /><div>Was it rejection? We still can't know for sure, because even though the steroids have worked, steroids can work for a number of things, so it may not have been that at all. I think Dr C is still putting it down to the reflux issue; since coming home I've raised the head of my bed quite significantly and that may be helping too (I'm not really sure) but at least I know the fundo op will sort that out in January. Plus, I won't be able to eat properly for about 6 weeks afterwards so at least I'll lose the 20 stone these steroids are going to make me put on...</div><div></div><br /><div>Huge thanks for all the lovely messsages people have sent me; I was really touched as even though it was a little blip, I was a nervous bunny for a while and the support was very much appreciated. </div><div></div><br /><div>I shall leave you with a picture of our back garden as it is at the moment; yes this snow is hugely disruptive but it is also undeniably beautiful. </div><br /><div></div><img id="BLOGGER_PHOTO_ID_5546521656892399954" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzDXXN_xU_Z4mGpHILP_ygwkOdMLMkxGk16gOSP-nQ5p_pOApaeWgHx8-H5MxE2NCdUBsC3onJt6iOUiCfR4vL579-fC15SN7yeiyoS1i4sTpfWDnYm03xeR5Fzv_jjbodYXzfJA/s200/Snow.jpg" border="0" />Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com5tag:blogger.com,1999:blog-18488065.post-66391359081767947072010-11-24T17:15:00.003+00:002010-11-24T18:02:34.872+00:00<strong>Wheezy penguin does the hokey cokey.</strong><br /><br /><em>In, out, in, out, you shake it all about...</em><br /><em></em><br />I managed a grand total of 4 days at home before being admitted. Again. To be fair to the team, they didn't have much of a choice, as my follow up lung function which should have shown a nice healthy jump due to a course of IVs bashing whatever infection was down there over the head, instead showed a further 10% drop. Bummer.<br /><br />I was brought in for another bronch and further biopsies. I had a busy day planned for Tuesday and did actually try to sweet-talk the doctors into the idea that putting off the bronch till Friday wouldn't do any harm, but funnily enough they weren't particularly receptive to the idea.<br /><br />I think I knew deep down I wasn't better; I was still wheezing, still needing to neb every couple of hours, still coughing and squeaking and huffing and puffing. I did however have a little sulk and cry on Monday because, let's face it, when the docs think they've treated and solved the problem and it turns out it wasn't what they thought....it's pretty scary.<br /><br />So the question is...what on earth is going on? I was hoping that bronch and biopsy no. 3 would give us the answer but it turns out we're still none the wiser. On the plus side, this means nothing nasty has shown up; no massive infection, no organising pneumonia, no rejection...but of course we still don't know what we're dealing with.<br /><br />But we do have a plan of action. I'm being stuck on nice high steroids (bring on the fat face) but the good news being they're in tablet form which means I can go home! Again.<br /><br />Definitely a victory, definitely a positive, but am going to be a little more cautious about celebrating the idea that the wheezy penguin saga is over this time. Please keep your fingers crossed that as well as giving me a huge round face and causing me to eat A out of house and home, this hefty dose of steroids will sort out whatever it is. Because I'd quite like my lungs to start behaving again now. Please. Am asking very nicely.<br /><br />**EDIT**<br />Serves me right for blogging so swiftly...doc just came in and the big guy at the top has instructed a slight change of plan. Instead of going straight home on oral steroids I'm going to be given 3 doses of IV methylprednisolone. This is the big nuclear bomb of steroids which aims to crunch any rejection into oblivion. Face will be fatter than I can even comprehend. Hmm.<br /><br />I will then go home on Friday (yay!) on a scarily high oral steroid dose, but that will reduce on a weekly basis. A slightly more severe path of treatment but do you know what? If this is the safest option and the most likely way of preserving my lovely lungs, then let's do it.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com3tag:blogger.com,1999:blog-18488065.post-78661011832240581522010-11-19T12:34:00.003+00:002010-11-19T12:58:13.986+00:00<strong>Wheezy Penguin saga: the sequel.</strong><br /><br />I was a tad premature at celebrating my release from hospital, as that weekend, due to raised temps, a drop in lung function and a lot of chest pain, I was re-admitted for IVs to treat a suspected chest infection. The infection was probably all related to the closed airway business, but it was important to get on top of it asap so it didn't cause any trouble.<br /><br />Clearly my body felt like I wasn't getting enough attention as it proceded to be the week of completely random and unnecessarily silly blood results. First my kidney function danced about in a naughty manner, but quickly returned to my usual "misbehaving but only enough to be kept on the naughty step" level. Then my potasium result came back sky high, causing everyone to move quite quickly to get me attached to a heart monitor (my mother did suggest that this may have been nothing to do with potassium, but simply to confine me to my room and stop me from causing trouble - how rude). They began to return to normal, I was de-wired, and then my ciclosporin level (immunos) jumped up so high I wasn't allowed to take any for 24 hours. That was hugely unsettling as you have it drummed into you as a transplant patient that you must never <strong>ever</strong> miss a dose. It's settled a bit now, but I'm on a much lower dose than I was on when I went in, still not sure why.<br /><br />I had my 2nd bronch on Tuesday where they did the dialitation thing (look at me using a real medical word) which sadly I believe was done using a balloon for the stretchification - no pixies involved. They also froze (?) the airway to stop it re-closing. Dr C says I will need another bronch next month and may need the procedure repeated. I felt fine when waking up, other than the fact they'd hit my tonsils and they were now so grossly enlarged that they looked like comedy ACME tonsils. Had a bit of trouble talking and swallowing for a few days but they're going down now.<br /><br />I was discharged on Wednesday (woohoo!) and IVs are due to come to an end on Monday, when I'll go back to clinic to hopefully hear that my lung function is back up and all shiny and nice again. Fingers crossed that that's the end of the Wheezy Penguin dramas so I can get back into the swing of normal life! I'll be referred for the fundoplication operation asap and by the sounds of things that will take place in January.<br /><br />On a completely different note, our new LLTGL T-shirts are here! Please <a href="http://www.lltgl.org.uk/t-shirts/">head over to our website</a> and consider buying and wearing one; help us spread the word about Organ Donation and save more lives. Thank you!Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com2tag:blogger.com,1999:blog-18488065.post-64565310912872906542010-11-04T15:16:00.003+00:002010-11-04T15:31:38.231+00:00Chapter 748: The story of a wheezy penguin.<br /><br />Well firstly, I had a lovely half term. A and I took the opportunity to get away and went to Derbyshire where we also visited my wonderful Grandad.<br /><br />I had been coughing a bit more all week but feeling fine, but suddenly over the weekend just gone I began feeling very wheezy and a bit breathless. By Sunday I was convinced something wasn't quite right and so rang the on-call doctor at Harefield to ask to come to clinic on the Monday. I thought I might be being too cautious but better safe than sorry.<br /><br />So on Monday I headed up to clinic to get checked out. My FEV1* had dropped significantly (although randomly my FVC** was actually slightly better than last time...) and as the day went on I was feeling more and more breathless and sounded like I was playing a tin whistle very badly. Therefore I wasn't really surprised when I was told I'd be admitted that afternoon for a bronchoscopy and biopsy the following morning to check for rejection and to see if they could discover what was going on.<br /><br />Most importantly, the bronch revealed no rejection (WOOHOO) but showed a lot of inflammation and narrowing, particularly on the right side. Dr C explained the reason I'm probably feeling so crappy is because the right lower lobe is very affected and that accounts for a very large portion of lung. I'm using nebs again to help ease the wheeze (ha, that rhymes) which just eases the symptoms, but we do have a gameplan.<br /><br />There is research to show that reflux can affect lung function and can cause a number of problems. A study done earlier this year showed that I do have bad reflux and I was warned I'd need a procedure called<em> fundoplication</em> at some point in the future. Dr C suspects that the cause of this pulmonary hissy fit is indeed the reflux, which probably means I'll need this op sooner rather than later. In the meantime, I'm going to go back in in the next week or so to have another bronch and to have my airways widened (no idea how they do this, have a lovely image of pixies running in and errecting scafolding but sadly I suspect the true method is nowhere near as charming) which will hopefully make me less squeaky.<br /><br />I have learnt from this admission that I have indeed turned into a complete and utter wuss. I didn't find out the results of the bronch for a little while and I really began to panic about how I was feeling and what it could mean. I think I need to man up a little again....I'm obviously out of practice being lucky enough to stay so well. Am going to try not to push myself too much whilst I'm still a wheezy penguin, and will update my blog once I know whether it will indeed be pixies performing my airwaystretchyopenyproceedure.<br /><br /><br /><em>*How fast you can blow the air out</em><br /><em>**Amount of air you can blow out of your lungs all together.</em>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com5tag:blogger.com,1999:blog-18488065.post-3584696078294432010-10-03T10:22:00.009+00:002010-10-03T10:44:17.585+00:00No apologies (I give up with those or I'll be apologising every time I post from now on!)<br /><br /><div><div><div>Quick recap of what's been going on.</div><div><br /></div><div>Health-wise: everything is really good. Whatever it was that caused me to be in and out of Harefield seems to have vanished *touches wood 20,000 times* and lungs are still wonderful and behaving beautifully. Big yay for them.<br /></div><div><br /></div><div>Work-wise: everything is fab; September seemed to arrive with a bang and I am (as usual) extremely busy but also (as usual) enjoying every minute. It's lovely to see all the kids again, the little ones shoot up over the summer, it's frightening!<br /></div><div><br /></div><div>Hydro Active: As always, I took part in the Hydro Active (now the Adidas challenge but to me it will always be the Hydro...) "Team Jess" as we were called this year was formed from a number of Jess' friends and supporters, and her wonderful mum Jackie. We were all dressed in pink and I was in my fairy dress which I have worn for the Hydro before. Holly had brought along some rather bright face and hair paint which I ended up absolutely covered in! I looked so special that on the bus on the way there, an elderly couple paused to take a picture. I am choosing to see that as a compliment.<br /><img id="BLOGGER_PHOTO_ID_5523766424772120562" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKMrywG_lm5lMNGfOJVI3FINuEeoQnh7b5GaLRRxfPLsJu3pryiDvYbIJrnq267M54P6lcnfeQUmhATw9gewmM_9LUaX9ao9a15QWTnDcGqCGN3ipUS8PpyWql4VkrCCR1mxTW9A/s200/Holly+and+Emily+Team+Jess.jpg" border="0" /> <img id="BLOGGER_PHOTO_ID_5523766906343882722" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPVVq2XxjgpvVRa-tahM54yXF19ZyhTOSssARMddREWiESgcrw_Mvty0gAJFa_ylVrUOhXV4PuoPl4998kv18NjVBgEs47hglV_LAKNbBcy5P8pD3ATx1hnwufo-gqqpMg_gtZQw/s200/Team+Jess.jpg" border="0" /></div><div><br /></div><div>It was a lovely atmosphere as usual but of course for Team Jess, it was achingly sad as we had all hoped that we would be doing this year's 5k along side the girl herself. Jackie was incredible; I have no words to describe how much admiration I have for that woman, suffice to say it's extremely evident where Jess got her dignity and strength from. We paced round the track in a sort of power-walking fashion, stopping to pose for pics at each Kilometre sign and Holly (the queen of multi-tasking) was tweeting for <a href="http://www.twitter.com/LLTGL">LLTGL</a> all the way round! </div><div><br /></div><div>As the finish line came into view, we all held hands and ran towards it, raising our arms as we crossed the line. On finishing I felt tears pricking my eyes and turned to see all Team Jess members were feeling very much the same emotion. We all hugged as the tears flowed, the joy of finishing, and the sadness of Jess' abscence. It was a very emotional moment but one I feel proud and priveledged to have been a part of. You can still sponsor Team Jess by <a href="http://www.justgiving.com/teamjess">clicking here</a>.<br /></div><div><br /></div><div></div><img id="BLOGGER_PHOTO_ID_5523766572915816802" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHCZSC11bsA67n76xiuISbP40BLbLGhOF6WQzoDb2MrZSVntTnFB_ZqSJfOQrolsL0g1yd_83C4dBStpe4YzXCrXkhIGnbTTY_I0EPTxWoKstwN3pTuHX3T5kUWnom2j3-75-wIg/s200/Team+Jess+and+medals.jpg" border="0" /> Last weekend, I was in Cardiff to give a talk at a very prestigious transplant event. There were 500 delegates there and so the pressure was on, but it went well and I received a standing ovation at the end. More details as to this talk coming soon on the <a href="http://www.lltgl.org.uk/news">LLTGL blog</a>, but here's a pic for now. </div><div><br /><div><img id="BLOGGER_PHOTO_ID_5523767296611509506" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlL4X65Ukmw2yHUF_XgSqiWbC9v3ATo6Cx6-N-5i9SDr5M0_sctKS9KjtaVy-Mjx_qNUuI2M1lHT5U7uy7hyphenhyphen5kHqDmx4fQ6rndRnvos0U0du8VABwJdP4cjllSyhpn-OMV65plqg/s200/ETCO+Speech+2010+sm.jpg" border="0" /></div></div></div><br /><p>I cannot believe we are already in October, and this month is going to be extremely busy, in fact I don't think I have a single free weekend. What an absolute joy to be able to say that - no big pauses needed to rest up and let my body recuperate. Pop over the <a href="http://tor-pastthepointofnoreturn.blogspot.com/">Tor's blog </a>to see what life used to be like for me. Fingers crossed her call comes very very soon.</p>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com0tag:blogger.com,1999:blog-18488065.post-34317947409008797932010-08-29T05:50:00.006+00:002010-08-29T06:08:40.623+00:00Shock horror, it's me, actually posting on my blog.<br /><br /><br /><br />Do I have an excuse? Not really. Maybe this blog is heading into retirement, I'm not sure. Anyway a catch up on what's been going on.<br /><br /><br />The end of term was manic, with dozens of concerts and shows, but I can't complain as I thrive off it and loved every minute, even though I was thoroughly shattered by the end.<br /><br /><br />The Summer holidays got off to a fantastic start when <a href="http://www.weejac.blogspot.com/">Jac </a>and her husband came down to stay. I was hugely over-excited at this and we'd been looking forward to it (and trying to get organised enough to arrange it) for a while. We had a lovely day and evening together, but unfortunately that night, my body decided to enter into one of my more random and weird poorly episodes and I started being very sick. Feeling really quite rough (and a little scared - I'm a complete wuss when it comes to being sick, in fact I'm probably braver when I have chest drains and things in) and unable to even keep a sip of water down, I phoned Harefield and went straight up there to get some introvenous anti-sickness.<br /><br /><br />The main problem with this kind of thing for transplant patients is that if you can't keep your immunosupressants down, it sends your levels too low so once I was in, Harefield wouldn't let me go as I needed to have my immunos via IV as well. A couple of days later, all seemed to have stablised so I was discharged....only to be readmitted 24 hours later as it started all over again.<br /><br /><br />It was a frustrating two weeks or so, but it seems (she says touching wood half a dozen times) that it has disappeared. The docs were baffled, and the only thing we've changed is to double up one of my drugs (omeprazole for those medically minded folk) so that might be what did it.<br /><br /><br />Medical rubbishyness aside, one of the highlights of the summer was the Glee workshop I ran mid-August. I had been dying to do one and knew there was a fairly high demand so decided to just go for it and it was a huge success. We had about 30 participants aged 11 to 25 who learnt songs in harmony with choreography and then performed them at the end of the day to family and friends. It was a rediculously busy day and I'm not sure I actually sat down but I loved every single minute of it and would definitely like to run another one.<br /><br /><img id="BLOGGER_PHOTO_ID_5510708458195139458" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSnnjLj_Zk_SDKyWm29G_unJ4FyMOS1WgcwQ8mMcnnfpMlZcMut2WxjSRup7n8XG1Jy9diodtmpO5CDLY-QrX15URzYmV59jrlWjBe8FyAsw_CZn1uUwgpGNhrIg7OYwU9d3nsBw/s200/rehearsal+small.jpg" border="0" /><em> Participants rehearsing around the piano.<br /></em><br /><br />So suddenly here we are at the end of the Summer holidays, and it feels like I haven't even made a dent in my to-do list. I am looking forward to starting back (a big perk of loving my job) but admittedly don't feel quite as rested as I'd hope to! My lungs, I am happy to report, are behaving exceptionally well and in fact on Thursday I achieved my highest Lung Function yet at Harefield (Woo!)<br /><br />Bring on September and a new term full of new excitement, and lots of new things that continue to prevent me from keeping this blog up to date. But do you know what? If life is getting in the way of finding time to sit down and write on here, I am certainly not complaining.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com3tag:blogger.com,1999:blog-18488065.post-31909483651184087582010-07-20T15:12:00.000+00:002010-07-20T18:03:42.105+00:00<u>The A - Z of me.</u><br /><br /><br /><em>Has it been done before or have I dreamt it up? Suspect I've read it on another blog but cannot find where....anyway, here's my very own personal A - Z.</em><br /><br /><strong>A is for</strong>... well, quite clearly A is for A. My A. That's all that needs to be said on the matter.<br /><strong>B is for</strong>... Blonde - both in hair colour and in the brain.<br /><strong>C is for</strong>... Choirs. I love them. I run one, sing in one, and help coach in others (mostly for children). The feeling you get from singing together in harmony is awesome.<br /><strong>D is for</strong>... Determinism. I'd like to think I have a fair amount of this. It could also be called stubbornness.<br /><strong>E is for</strong>...Excitable; I have a tendancy to become far too over excited and need to go for a lie down (sad but true).<br /><strong>F is for</strong>... Friends. I have some that are absolutely invaluable; I don't know where I'd be without them.<br /><strong>G is for</strong>... Glee. I wish people in my life would burst into song or know the harmonies automatically when I do.<br /><strong>H is for</strong>... Hope. I think it's pretty damn important to have hope in your life; when in a difficult situation I'm always craning my neck looking for the rainbow.<br /><strong>I is for</strong>... Imagination. I have a vivid one, which is not always a good thing.<br /><strong>J is for</strong>... Jewellery. I am a bit of a magpie and have a huge assortment of big sparkly necklaces, bracelets and earrings. I like sparkly stuff.<br /><strong>K is for</strong>... Kettle. OK cheating here as I'm trying to get to Tea. A strong hot cup of tea can work wonders in most situations. I probably drink too much of it but it's my only real caffine fix (not a big coke or coffee drinker)<br /><strong>L is for</strong>... Life. It's a wonderful wonderful thing.<br /><strong>M is for</strong>...Music. I come from a musical family and can't imagine a day without it. Music is food for the soul.<br /><strong>N is for</strong>... Nurture. My family are a big part of my life, always have been, always will be.<br /><strong>O is for</strong>... Optimism. I am an optimist, however with a good healthy dose of realism. I rather like Peter Ustinov's quote on it: "<em>I am an optimist, unrepentant and militant. After all, in order not to be a fool an optimist must know how sad a place the world can be. It is only the pessimist who finds this out anew every day</em>."<br /><strong>P is for</strong>... Pink. Because I love it.<br /><strong>Q is for</strong>... Quotes. Quotes about life, about love, about hope or motivation. I collect them for rainy days, as exemplified above.<br /><strong>R is for</strong>... Reading. I was brought up in a house piled high with books, with parents who would read us a variety of stories (with all the voices) from a very early age. I love getting lost in a good book, but am notorious for returning to my beloved old favourites.<br /><strong>S is for</strong>... Shoes. I love them, but am completely incapable of walking in heels in an attractive womanly way.<br /><strong>T is for</strong>...Teaching. I teach a variety of ages, and I absolutely love it. I find it extremely rewarding and each day is refreshingly different from the last.<br /><strong>U is for</strong>... University. My years at Bristol University were some of the most exciting and happiest in my life so far. That is despite my, by then, extremely poor health. University taught me a lot (mostly in the school of life), and gave me some wonderful friends.<br /><strong>V is for</strong>... Vitamins. CFers have to take vitamin supplements due to absorbtion problems, and along with my enzymes, I've been on these since I was born and always will be.<br /><strong>W is for</strong>... Waterworks (of the teary nature). I am not an attractive crier and unfortunately cry at the drop of a hat.<br /><strong>X is for</strong>...X-rays. On guestimation I've had around 200 X-rays in my lifetime so far. Probably more in fact.<br /><strong>Y is for</strong>... Youth. I still feel like I am in my teens, and that I could wander into a high school classroom, sit down in a lesson, and feel perfectly at home. This is despite the fact I teach this age-group...<br /><strong>Z is for</strong>... Zzz - I love my bed. I love curling up on it just to lie and read.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com4tag:blogger.com,1999:blog-18488065.post-87305564588907711402010-07-03T16:30:00.002+00:002010-07-03T16:47:36.645+00:00<div><strong>"Rich is excited about what the future might hold"</strong><br /><br />That's my mate Rich's facebook status at the moment.<br /><br />A couple of weeks ago, Rich was in the Brompton hospital where he had been living for the past two months. He was unable to do....well, anything really. He was using a bi-pap (non-invasive ventilator) pretty much all the time just to keep breathing, he was extremely ill, and his quality of life was poor to say the least.<br /><br />Rich got his call for his new lungs and new life in mid-june and so far, is recovering extremely well. His facebook status brought tears to my eyes as that's exactly the point; Rich is now able to contemplate the idea of a future. Of new and exciting possibilities. Of persuing dreams and ambitions. Of simply being around for family and friends. There's a chance, there's hope, there's more to come.<br /><br />Yesterday I logged onto facebook to read that <a href="http://donnamansell.com/">Donna Mansell</a> - an avid campaigner who was waiting for a new heart - had died. Donna leaves behind a grieving husband, and a seven year old daughter.<br /><br />This is the very real reason that we need to keep campaigning for more donors and for improvements to the transplant system in the UK. If it wasn't for my donor, the top of this blog would now read "1984 - 2007".<br /><br /><a href="http://www.organdonation.nhs.uk/ukt/campaigns/other_campaigns/detail.jsp?id=9">National Transplant Week</a> starts this Sunday and runs all week. Please take the opportunity to raise Organ Donation with someone who might have never even thought about it before. There are events happening across the country; you can join in in a thousand different ways, and make a difference.<br /><br />Let's give more people the chance to think about what the future might hold. The chance to contemplate careers, families, mortgages...all those things that most of us take for granted.<br /><br />Organ Donation saves lives; the lack of registered donors kills. Please, think about it, talk about it, <a href="https://www.organdonation.nhs.uk/ukt/Consent.do?campaign=1160">do something about it</a>.<br /><br />Thank you. </div><div> </div><div> </div><img id="BLOGGER_PHOTO_ID_5489722172744336994" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 200px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho418APwrL6PCbxASRaWB94Tk46z6pVYnuu8l08ynRE3ZNNRkVP-DWX1WT5apzXY7vsLl2ahyWRRUBe24cdVFN_WCX0sKxUvPLk2a8Cy0SLx5RsuUa0aPe8Nz6l1aLIEszq_a6Nw/s200/ntw2010lltgl.jpg" border="0" />Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com3tag:blogger.com,1999:blog-18488065.post-32658500641603483632010-06-15T17:34:00.003+00:002010-06-15T17:53:51.230+00:00I am feeling increasingly frustrated following comments and remarks surrounding <a href="http://www.dailymail.co.uk/health/article-1286540/Cystic-fibrosis-woman-28-dies-months-given-smokers-lungs.html">this story here</a> so I had to blog about it.<br /><br />The story is essentially an incredibly sad one; a young woman with end-stage CF got a double lung transplant, only sadly to pass away from pneumonia several months later. The thing that has wound me up is that everyone has hooked onto one thing; the lungs came from a smoker. <br /><br />The use of a smokers lungs is an entirely seperate story, and granted, still one up for discussion. But the fact that these lungs previously belonged to a smoker is not what caused her to die. Pneumonia is what caused her death; sadly a complication that anyone undergoing a transplant can suffer. I myself had pneumonia in the month after my transplant which is what caused me to plummet to such dangerously ill levels that the team thought I would not last the night. My lungs did not come from a smoker. <br /><br />According to her relatives, this lady would have refused lungs had she known that they came from a smoker. This is a completely personal preference. I personally would have accepted any lungs that the team declared good enough as I knew that it was my last shot and that people wait years and years without a single call. I trusted my team implicitly; surely have to when you get to this stage?<br /><br />Don't get me wrong, I have nothing against her family; I cannot even imagine the turmoil and grief they are going through having fought so hard and come so far, only for the transplant not to work. But I am frustrated by the Media, who have taken two issues and looped them together, to create a cause and affect when that is simply not the case. <br /><br />There are dozens of comments all over the internet along the lines of "how dare they [the hospital]" and "disgraceful! what poor care" (again the hospital) as well as "how disgusting, to be given a smokers lungs!" and these are really beginning to frustrate me. <br /><br />Firstly, and most obviously to me, the person who donated those lungs was, in fact, a person. They have loved ones, they have a family who is still grieving for them and who in a moment of generosity agreed that their organs could be used to try to help others. This person gave the gift of life; I don't think "how disgusting" is really a very tasteful response. <br /><br />All organs undergo extremely rigorous testing. The lungs would not have got through these tests if there was anything wrong with them which caused the team to doubt that they'd give the recipient an extremely good chance of survival. These criteria are so strict that many organs are deemed "non-viable" which is what results in a lot of the false alarms that people undergo. The medical team will have looked at the lungs on an independent basis; obviously the fact that the person was a smoker will have been taken into consideration but when you consider that 50% people waiting for lungs die before some come through, and that any potential donor having something like a chest infection could render the lungs non-viable, then what choice do medical teams have but to open all options and look at each set of lungs on a case by case basis?<br /><br />The very sad fact is that there are not enough donors. People waiting for lungs cannot wait indefinitely; there are no machines to prolong life whilst the perfect pair of lungs are found. Medical teams do now have to use organs which are described as "sub-optimal" - that is because there is such a dire shortage that at least this offers a chance of survival. <br /><br />The story is a tragically sad one, and my thoughts are with her family. They are also with the donors family, and with the teams around the country that every day have to make difficult decisions without a crystal ball to see how things will turn out. Transplants are not failproof, but they offer hope, and each and every one of us can raise awareness about them to increase the number of donors and therefore save more lives. Let's use this to do something positive; there are 10,000 people out there who desperately need us to. <br /><br /><em>PS- LLTGL Ambassador Victoria Tremlett has done a fabulous radio interview about this, which you can hear by clicking <a href="http://www.bbc.co.uk/iplayer/episode/p00881bz/Sadie_Nine_15_06_2010/">here </a>and forwarding to 1hr 13 mins in. Just listen to the desperation in her voice; we need more organ donors. Please keep spreading the word. Thank you x </em>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com7tag:blogger.com,1999:blog-18488065.post-27013166191745910362010-05-09T19:29:00.003+00:002010-05-09T19:48:48.390+00:00“A man's worth is no greater than the worth of his ambitions” - Marcus Aurelius<br /><br />“When ambition ends, happiness begins.” - Thomas Merton<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggewABIY7e2hxWiLVCPLdPzPdlNE-9Pma1QZTctj186TOg1T9Uv-ZiV9UaNWXdLBi-j0fWoPmw_fpXuR3NNfzcE3ZTg-w4XY-7eh_kLQqGbjZLfSnsow4m4x9b6MyMv1cEKsgsxQ/s1600/Ambition.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 168px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggewABIY7e2hxWiLVCPLdPzPdlNE-9Pma1QZTctj186TOg1T9Uv-ZiV9UaNWXdLBi-j0fWoPmw_fpXuR3NNfzcE3ZTg-w4XY-7eh_kLQqGbjZLfSnsow4m4x9b6MyMv1cEKsgsxQ/s200/Ambition.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5469359571805042594" /></a><br /><br /><br />I'd start with my usual apology about the lack of blogs recently, but I think everyone's sick and tired of that. Let's face it, life is busy, very busy, and my blogs are less frequent. <br /><br />So skipping that (sort of), onto my main reason for actually sitting down to write a blog. I've been thinking a lot about ambition recently. A rambly waffly blog about to follow.<br /><br />Ambition is a good thing. It drives people, it prevents people from becoming apathetic an pushes people through harder times and over obstacles. However I'm not always sure ambition is a good thing. Maybe it's possible to have too much ambition? <br /><br />I actually wouldn't label myself as ambitious; I'm very easily content and don't feel the need to constantly better myself. Maybe I'm not particularly driven or maybe this stems from years of having to re-adjust my goalposts as my health declined - I'm not sure - but I get quite comfortable and don't often strive for change in my own life (although in external issues I am passionate about it's an entirely different story but that's another blog...)<br /><br />Mind you, if I had no ambition at all, I wouldn't be where I am today; a graduate with a multi-faceted job and chairman of a charity, so maybe I am quite driven but only to a certain extent? <br /><br />There are two very oposing quotes at the beginning of this blog, both of which I find extremely interesting. The first suggests that only those who reach for the stars really sparkle, the second suggests that whilst you are constantly striving for more you will never be happy with what you have.<br /><br />Can both be true? Is there a middle ground? <br /><br />I do see a lot of truth in the latter, but I believe there can be a balance. I dp think ambition is a good thing, but measured and with a solid ability to enjoy what you have here and now. If we didn't aim for more, we'd never move forwards, but if you're constantly pushing to progress today will pass you by before you've even had time to appreciate it. <br /><br />I am very lucky in that I find it quite easy to adapt my goals and ambitions. This means I am quite easily pleased (anyone who knows me will know that this extends to things like a pink birthday card with googley eyes on it giving me joy for absolutely ages...) and also means that I can usually put something to the side when it is just too much of a struggle. I'm not saying this is a good or bad thing, but I know it's made my life easier over the years.<br /><br />As well as aiming high and striving to better ourselves, I think we should be able to look at how far we've come, what we can do right here, right now, and be able to enjoy that. There are so many things I don't make the most of right now because I'm thinking too much about next week, I'd like to pull a bit of that balance back I think. After all today is here now, and tomorrow is only a possibility. Make the most of both.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com6tag:blogger.com,1999:blog-18488065.post-67173214835639282872010-03-26T08:13:00.004+00:002010-03-26T08:30:30.875+00:00Apologies for being profoundly rubbish on the blogging front.<br /><br />As per usual, whenever I go silent, it's a good sign; it means life is so busy that I've inevitably triple booked myself and don't have time to update my blog. So yes, all is fine; I am well, I am very happy and I am extremely busy.<br /><br />March is always a busy month and my favourite month of the year; the weather is warming up, we're heading towards the end of the spring term, but predominantly because it's my birthday. I had a fantastic day and a wonderful celebration, dancing the night away with fabulous family and friends. Below is a picture to demonstrate the classy and stylish celebrations that were held (it was a 90s themed do, we didn't just inadvertently all decide to dress up as Spice Girls). <br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4uCuJSnfe9oRHPbK4MPQ-WAGDqRFTw6nhYbFRQFhEdP5BzDGL8pDMFT-pYbv6nRGeFEOLnZ1nFxCmvEyBtIlug0HG7nMM-04uehcvqSpQtvnaro-SY60qQH3HnR_N2ICM6Pw_tQ/s1600/Spice+Girls.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4uCuJSnfe9oRHPbK4MPQ-WAGDqRFTw6nhYbFRQFhEdP5BzDGL8pDMFT-pYbv6nRGeFEOLnZ1nFxCmvEyBtIlug0HG7nMM-04uehcvqSpQtvnaro-SY60qQH3HnR_N2ICM6Pw_tQ/s200/Spice+Girls.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5452856927985687026" /></a><br /><br />That's all of an update you're getting today I'm afraid, instead I'm going to list some blogs that I think you should check out when I'm being naughty and lax at writing:<br /><br /><a href="http://misswrite21.blogspot.com/">Lucy's Blog</a>.<br />Yes I'm a tad biased as Lucy is my sister, but she's a bloody amazing writer. Just take a look, particularly at <a href="http://misswrite21.blogspot.com/2010/03/atonement.html">this recent post </a>which I thought was particularly fab due to it's frankness and honesty.<br /><br /><a href="http://www.adamsappeal.blogspot.com">Nick's blog</a>.<br />Nick's son Adam has neuroblastoma. I have a connection with this family in the fact that I am Adam's music teacher, or was when he was well enough to be in school. The family are desperately trying to raise the money to get Adam to the US for life-saving treatment so please do pop over to <a href="http://www.adamsappeal.org">his appeal website </a>and read a bit about the family and the campaign as well.<br /><br /><a href="http://www.weejac.blogspot.com">Jac's blog</a>.<br />I just love her style of writing, and also the stories of Seb, her rather cute dog. Jac is a double lung transplant recipient like myself.<br /><br /><a href="http://www.lltglambassadors.blogspot.com">LLTGL Ambassador blog</a><br />Written by Tor and Rachy (both waiting for lungs), but earlier this month Rachy received her call and is so far doing very well. If you want to learn more about the wait for transplant, this blog is one for you.<br /><br /><a href="http://torixx.blogspot.com/">Tori's blog</a><br />Another lovely lady waiting for lungs; I love her honesty, her style (both in writing and in her fab clothes) and her ability to pull off bright red lipstick!<br /><br />The end of term is looming (and with it plenty of concerts) but then for the Easter Holidays, which I am extremely excited about as it will hopefully provide me with an opportunity to catch up with myself. Watch this space.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com2tag:blogger.com,1999:blog-18488065.post-19015246179918250112010-03-01T09:24:00.003+00:002010-03-01T09:42:46.862+00:00Just to reassure you, I haven't done any of the following:<br /><br />a) died<br />b) hit my head and suffered from amnesia<br />c) given up blogging<br />d) fallen down a hole somewhere (likely, but luckily untrue this time)<br />e) become a monk<br />f) run away to mexico to start a new life<br /><br />I have merely been busy. But found time to disappear off to a little piece of paradise for a week...<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg342fC_duCuRV0LdMHirTMPltjVtfvGnO4tdJM0JCJRXWYPY-MiOHj1wOBWabKyhzVluJB01x9NsQWP0kyXh3fdVNc81Qu1YxefoOzRX7YuuYL7eYgN5S5EEamEtY3yYUkTStVg/s1600-h/170220101017.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg342fC_duCuRV0LdMHirTMPltjVtfvGnO4tdJM0JCJRXWYPY-MiOHj1wOBWabKyhzVluJB01x9NsQWP0kyXh3fdVNc81Qu1YxefoOzRX7YuuYL7eYgN5S5EEamEtY3yYUkTStVg/s200/170220101017.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5443594468584536482" /></a><br /><em>Me swimming in paradise, aka Mauritius.</em><br /><br />It was beautiful, hot, relaxing and very much needed. And I feel very lucky and refreshed. <br /><br />Bit of musing because I need to really; apologies for this being a bit deep on a Monday morning but it's been stuck in my head and I really need to get over it, and, well, my blog is my therapist so hear goes.<br /><br />I've been thinking a lot about this dream coming to an end recently. Just to reassure, there is absolutely no reason for me to be contemplating this - my lungs are behaving exceptionally well - *touches wood half a dozen times* - and I am happy and healthy and very lucky.<br /><br />I think it's more that it has been triggered by several other things, one of which is reading the blog of this incredible young woman <a href="http://65redroses.livejournal.com/">here</a>. Eva is in the end stages of chronic rejection and desperately needs a re-transplant, fast. Please do pop over to her blog and leave her a message as she loves reading them. Advanced warning, she is very poorly and brutally honest. Every time I log onto it I hope hard that I read the message saying she's got her call. <br /><br />As well as this, my life seems to have structure and a future right now, and perhaps I am scared of following this path which has implications for not this year and possibly not next year but for some time after that. Maybe even after all this time, planning ahead is frightening as it feels almost like I am tempting fate.<br /><br />Maybe I just feel too lucky. I have been given so much, do I feel spoilt and demanding in wanting more? Am I afraid that my luck will run out? I don't think afraid is the right word actually, rather that the idea of it running out has been something I've been contemplating a lot more recently.<br /><br />No one is immortal. I guess the threat of rejection is something every transplant patient considers at some time. For some reason, I've got it into my head that because I've not had any so far *touches wood lots of times again* if/when I do, it'll be a biggie. Any logic to that at all? Nope, none whatsoever. I get cross at myself for thinking about it when a) I'm fine and b) it's all a bit self-indulgent. I think by blogging maybe this little black hole of musing might close up.<br /><br />Those of you who see me on a day-to-day basis know that there's nothing wrong and I'm not down or depressed. Merely a little thoughtful at present. And it's not really the kind of conversation you strike up with someone: "you know this whole transplant thing? Well I've been thinking about when it all comes to an end..." - way to ruin someone's day! But it is something I think about. Now and then. Don't dwell, but think. <br /><br />What's the answer? There isn't one. No-one knows when their dream will come to an end, it's not something that is only relevant to me, so the only answer is to keep on loving it and making the most of it whilst it shimmmers.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com8tag:blogger.com,1999:blog-18488065.post-5387771712476964722010-02-05T10:18:00.007+00:002010-02-05T10:50:45.273+00:00<em>“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” <br />- Thich Nhat Hanh, Vietnamese Monk.</em><br /><br />It's been a while. <br /><br />Sorry for the delay, for the break. January was a crappy month for the CF and Transplant community and it really has shaken me a bit. <br /><br />Jess' funeral was beautiful. Desperately sad but beautiful. I cannot write about it however both <a href="http://sarahmilne.blogspot.com/2010/01/time-to-say-goodbye.html">Sarah </a>and <a href="http://transplanttantrumsandtiaras.blogspot.com/2010/01/time-to-say-goodbye.html">Holly </a>wrote lovely accounts. Jess' family were incredible; the strength of the human spirit will never cease to amaze me.<br /><br />A friend emailed me today about something related to organ donation and mentioned that her thoughts and feelings about organ donation had also been deeply shaken. I emailed back with what was essentially a discussion in my own head and in doing so realised I was talking to myself more than anyone. So I thought I'd write it on here. The road to transplant is such a long and difficult journey, why do I still believe that fighting for it is what I should dedicate my efforts to? Because I do, I have to do it, I need to do it...I want to do it.<br /><br />When you are listed for a transplant, a million and one emotions fly through your head. There is a sense of fear, of apprehension, of acceptance of where your health now is, and of relief. Relief because you already knew by this point that you were extremely ill, and now someone is saying that there might be a way out...that there might be an answer. <br /><br />The offer of a transplant for many changes their status back from what is essentially terminal to "extremely ill but with a light at the end of the tunnel". <br /><br />When looking at a typical transplant patient (am thinking cardio-thoracic mainly here) they are hardly the ideal candidate for surgery. In fact, if it was any other kind of surgery being suggested I suspect they'd be laughed out of the hospital. At the end of 2006, I don't think my body could have been much further away from "optimum condition" to tolerate such a major operation. <br /><br />When I was taken down to theatre, my last words were "I'm so lucky". This wasn't because I was convinced that that was it, I was mended, but because I knew that either way, that part of my journey was over. Someone had tried to save me and hopefully it would work...and I had a chance. A door was opening. I felt relief; the fighting, the hanging on, all of that was for a reason, and now what would be would be.<br /><br />Tranplantation is not foolproof. It does not always work. We know that, as we sign up to go on the active list, we know that. But I remember thinking "at least there's now a chance". That's what I desperately needed, and that's what I was fighting for.<br /><br />When it does work...well, all you have to do is read my blog over the last three years to see what happens when it does. I still love watching people's faces when I tell them that I'm a double lung recipient. The shock says it all; how well I look, and how my CF past is a now just a shadow in the background.<br /><br />Transplants don't last forever. Sad but true. But do you know what? If it all ended tomorrow, I've already done a billion and one things I never thought I'd do, seen a billion and one things I never thought I'd see. I've experienced "normal" life...all thanks to one person, one decision...one family.<br /><br />For me, transplantation equals hope, a chance, a rainbow. It offers a hope that there are better things to come. Hope that you might step through the looking glass and experience a life you've not dared to dream about in case it should not materialise. And that dream alone is worth fighting for, especially as when it comes true, it's bigger, better and more colourful than you ever could have imagined.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNO2Qc2pK84Kp8wgOATHhSkSrpCDIjGy1spcZRy7VFGMuY0MN30sQ_TiRaaHPSSouffo6cmyjbFmYsYif-Maz4tHtLPnEcOZcV0wCl85p_3n58Mid1jRS2ttJw9kMkbf2wQdFqVg/s1600-h/Rainbow.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNO2Qc2pK84Kp8wgOATHhSkSrpCDIjGy1spcZRy7VFGMuY0MN30sQ_TiRaaHPSSouffo6cmyjbFmYsYif-Maz4tHtLPnEcOZcV0wCl85p_3n58Mid1jRS2ttJw9kMkbf2wQdFqVg/s200/Rainbow.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5434705978756647442" /></a><br /><br /><a href="http://www.lltgl.org.uk">www.lltgl.org.uk</a>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com9tag:blogger.com,1999:blog-18488065.post-76365657117935557602010-01-16T15:00:00.010+00:002010-01-16T16:05:55.251+00:00Jess.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2UM8QwRr5FcZqTs3V94jqx3CmqCyfYPZU0DSyJVkgJUp0zSqq0DaahlhqaRy8L1CPEdM1s-Eu82frpZnsK7FgCMsO9R0b81XdpIgpD0Ersrt0cbCrWC83c2OYS6el6W-VWnOUcA/s1600-h/hydro+Emily+and+Jess2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 139px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2UM8QwRr5FcZqTs3V94jqx3CmqCyfYPZU0DSyJVkgJUp0zSqq0DaahlhqaRy8L1CPEdM1s-Eu82frpZnsK7FgCMsO9R0b81XdpIgpD0Ersrt0cbCrWC83c2OYS6el6W-VWnOUcA/s200/hydro+Emily+and+Jess2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5427362895933542130" /></a><br />I've started rewording this blog now for the umpteenth time so I'm just going to write; I keep worrying as to whether I am saying the right thing or not. I need to just write.<br /><br />I am missing Jess very very badly at the moment. We texted back and forth most days and it hurts knowing she hasn't made it, that her glimmer of hope came too late. She should have made it, I think I am angry as well as sad, she should have had her call earlier. Four and a half years of clinging on is just not fair, and consequently, her body was just not strong enough.<br /><br />Instead of going on and on about the sadness and the ache which is currently making me feel quite blank and flat (this is my blog, I'm allowed to be selfish) I'm going to talk a bit about what I loved about Jess and more importantly, what she taught me.<br /><br />Jess was the strongest person I have ever met. Literally. When we went up to decorate her hospital room at Christmas, she was fighting so hard I have no idea how her body was doing it. Mentally, she never ever gave up either. She had a determination in her, a fire that made her so sure of her path and gave her such a focus. It inspired and motivated me to do more.<br /><br />Jess had a huge heart. She was in hospital having a rotten time when I put up some sort of sulky status about something completely mundane I was annoyed with and the text came through almost instantly "Are you ok? Thinking of you x" Typical Jess always thinking of others; a memory that several other people have conveyed to me in their messages for her condolence book (which, incidentally, if you'd like to contribute to is open to anyone - no matter whether you knew her or merely knew of her and were touched by her - email me for more info). When I was in hospital for IVs this November, I texted her one day saying I was sending her all my mendy vibes and she texted back saying "no please save some for you."<br /><br />She had a fantastic sense of humour. When <a href="http://transplanttantrumsandtiaras.blogspot.com/">Holly </a>and I went to film with her for Battlefront, we spent most of the time being gently reminded by the crew that this was supposed to portray the severity of life on the list. It was hard as Jess' nature was to laugh and smile, and we all kept giggling and gossiping. We did get the filming done in the end and Jess' contribution to Holly's Battlefront episode - her frank portrayal of life waiting for lungs - was a vital one.<br /><br />She reminded me what is important. Jess absolutely adored her family and her friends, and would tell people that they were special to her. When she decided to do something, she got on and did it, never mind whether it was practical, easy or virtually impossible. I think post-transplant, it is easy to loose some of that spontaneity, to forget to tell people regularly how much they mean to you. I intend to remember that.<br /><br />I am definitely struggling with survivor’s guilt. I know it’s not uncommon and I’ve felt it before when losing friends with CF, but it’s pretty full on at the moment. Why on earth am I so special that I got this magical chance? I know the answer of course; it’s because there is no rhyme or reason. Just because Jess gave and gave and gave and fought harder than was probably humanly possible...effort sadly does not guarantee who gets the winning hand. Our paths were so similar in so many ways; both pretty stubborn, both fairly high-profile fights, then she decided to do the Hydro Active... I felt like she was a younger version of me. Perhaps because of that, I had a naive subconscious belief that she had to make it through, because I did, so it was only logical. I hate that I was lucky and she was not. I told you, my blog, my ramblings. My thoughts are with her incredible family and those closest to her; I cannot imagine just what they are going through.<br /><br />Jess fought for what she believed in. She believed very strongly in organ donation, so instead of sitting around she got up and fought. And never ever stopped. Ever. That’s my biggest lesson; to live and laugh, to love those around me, and to fight for what I believe in. And to never, ever stop. <br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFH95jf8-AqNFNkohrZFk_XrMzlTSXI_u1bGjQsecmHKvdoFtli6wR1AKLub3zfotnnG4vIsPxyAk86rUmoKB9BFYAO1Z-kT7cdPtnCpM_iHoB-I-tsAtbUUblE9uffvM4Kk0FWg/s1600-h/hydro+B%26W.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 186px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFH95jf8-AqNFNkohrZFk_XrMzlTSXI_u1bGjQsecmHKvdoFtli6wR1AKLub3zfotnnG4vIsPxyAk86rUmoKB9BFYAO1Z-kT7cdPtnCpM_iHoB-I-tsAtbUUblE9uffvM4Kk0FWg/s200/hydro+B%26W.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5427363222770866354" /></a><br /><br /><a href="http://www.justgiving.com/jesswales">www.justgiving.com/jesswales</a><br /><br /><em>Images courtesy of <a href="http://www.hollycocker.com">Holly Cocker</a> - thank you Holly x</em>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com10tag:blogger.com,1999:blog-18488065.post-64155529615572234862010-01-14T14:53:00.007+00:002010-01-15T18:09:58.259+00:00I think most of you have heard the heartbreaking news about <a href="http://livelifethengivelife.blogspot.com/2010/01/our-jess.html">Jess</a>, but this blog isn't about that, as I can't write that blog just now. In fact I'm struggling to write anything coherently at the moment; my words seem to have escaped me, all words, my ability to type and to write. It'll come back, I'm sure it will. <br /><br />This blog has been triggered by a girl called Tori who is waiting for a double lung transplant. Her post that got me thinking is <a href="http://tori-x.livejournal.com/135269.html">here</a>. She actually keeps two blogs, the other one can be found <a href="http://torixx.blogspot.com/">here</a>.<br /><br />Reading her post about sharing her story publically got me thinking. Particularly this bit:<br /><br /><em>When I talk about my CF I try to emphasize all the positives, tell people what I'm still able to do and how although I might feel crappy now I'll be better in a few days. I decided to submit myself to Live Life to Give Life as a face for their media campaign and am now having to forget all the positives and focus on the hard stuff, otherwise am I a good person to motivate people to sign up to the organ donation register? </em><br /><br />I started reading back through my blog to see how I spoke about the struggle to keep going whilst waiting. I think <a href="http://pinkandsmiley.blogspot.com/2006_06_01_archive.html">this month </a>gives a fairly good mix. I think (and hope) I spoke honestly, with a mixture of good and bad, because I truly believe that you can give a balanced picture. The illest of ill people laugh and smile and have good times. And maybe by sharing your personality it makes the story even stronger? <br /><br />Life isn't black and white, therefore adding colour and texture to the picture you are trying to paint makes it more realistic...doesn't it? Then again, in order to highlight the urgency, it is important to focus on the severity. I know all too well that mask of "I'm fine" that people waiting for transplant painstakingly paint on. You have to, because if you start thinking about how hard life is all the time, it makes daily life pretty hard to face. But if you don't speak the truth about how hard life can get, can people really understand?<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ-LVMnpXL-MysgkVtRRCDCa2MIzjm0cmj2czNWvnPdVVdmb2RWtb-4FQ_JFaomUq8svGXyxSonUdUOVcPfk6wbwc5IvjGGd6ZgXqcu9W_7wpsrNtHxuXLe4rwHiOxh6nSFojjTA/s1600-h/Dancing+in+McCluskeys+cr.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 164px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ-LVMnpXL-MysgkVtRRCDCa2MIzjm0cmj2czNWvnPdVVdmb2RWtb-4FQ_JFaomUq8svGXyxSonUdUOVcPfk6wbwc5IvjGGd6ZgXqcu9W_7wpsrNtHxuXLe4rwHiOxh6nSFojjTA/s200/Dancing+in+McCluskeys+cr.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5427030002925990178" /></a><br /><em>Yes that's me in 2006 in a nightclub. With my oxygen on. Looking a tiny bit blue.</em><br /><br />I'm not attempting to answer questions here, I'm just very interested and grateful to Tori who gave me something else to think and blog about.<br /><br />Apologies for the scatty and poor writing; any ideas or opinions on this would be great. And do stop by and say hi to Tori on her blog as she continues to write about her life, her wait and her hope for transplant.<br /><br />My next blog will be about Jess. I just have to find the words.Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com2tag:blogger.com,1999:blog-18488065.post-46418945294372669742009-12-31T09:51:00.008+00:002009-12-31T10:24:44.751+00:00Firstly, Merry Christmas everyone! I hope everyone had a Christmas full of laughter, fun and merriment. <br /><br />I had a wonderful Christmas; our family have these traditions which we’ve done since I can remember and which are described beautifully by my sister <a href="http://misswrite21.blogspot.com/2009/12/christmas-is.html">here</a>. It’s very much a family affair, which I love, and which I feel Christmas should be. However this blog isn’t really going to be about me, it’s going to be about <a href="http://www.lltgl.org.uk/advocates/jessica_wales.php">Jess</a>.<br /><br />The week before Christmas, Jess was admitted to hospital through her local A&E. She was a poorly girl, and as we got closer to the 25th, it became apparent that she would not be well enough to return home for Christmas day. Following a long chat on the phone, <a href="http://sarahmilne.blogspot.com/">Sarah </a>and I decided that if she couldn’t go home for Christmas, Christmas would have to come to her. We contacted as many of her online friends as we could (in a short and hurried space of time) and donations came flooding in. People wanted to contribute to Jess’ Christmas day; I think the unspoken but shared emotion was that it could well be her last. <br /><br />I met Sarah, along with her girls Hope and Ellie, up at the hospital, with bags of beautiful decorations, luxury food items, and presents, all paid for by caring folk from the CF and Transplant communities. <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEdaWm3M6Aspbu8MSjSIVSfWlp6qolVg2F43uMvyrX9QIIDnHyay_MAesOMXsRl_0peiZVy7lGEjV3ZEW4ffmfpoh4vm57q4vmK8kbtXHwhCQ9RGAzwFql-x0J5ZUFHJsL_A_ssg/s1600-h/Jess+grotto1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 133px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEdaWm3M6Aspbu8MSjSIVSfWlp6qolVg2F43uMvyrX9QIIDnHyay_MAesOMXsRl_0peiZVy7lGEjV3ZEW4ffmfpoh4vm57q4vmK8kbtXHwhCQ9RGAzwFql-x0J5ZUFHJsL_A_ssg/s200/Jess+grotto1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5421342023989946498" /></a> <em>Jess' pink purple sparkly Christmas tree</em><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4IgA0ojKXKGlzpofzcQdtvmvdWw73cPjTifCbsqfCCXLsogKeY2hYWZRDnvQyn7k5IwJxw-VxA9_BXQcxrJV6EcLEc61bc77SAJW-VwDpUswDO5uSsZ2SrMYDVbsqf_fVBD-_6A/s1600-h/Jess+grotto2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 133px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4IgA0ojKXKGlzpofzcQdtvmvdWw73cPjTifCbsqfCCXLsogKeY2hYWZRDnvQyn7k5IwJxw-VxA9_BXQcxrJV6EcLEc61bc77SAJW-VwDpUswDO5uSsZ2SrMYDVbsqf_fVBD-_6A/s200/Jess+grotto2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5421342172746946578" /></a> <em>Fairy lights and Christmas nibbles.</em><br /><br />There’s a little video that you can view <a href="http://www.facebook.com/?filter=app_2392950137#/video/video.php?v=218117258497&subj=501563497">here </a> (if you are a facebook user) of us decorating the room.<br /><br />Jess really was a very poorly girl, and a few days after Christmas, I got a phone call from her mum saying she had taken a turn for the worse. Four and a half years of waiting and her body was running out of steam; we were out of time. <br /><br />That night, something incredible happened. Somewhere out there, a family suffered the unthinkable and lost someone they loved. And at that moment, in that time of grief, they decided to consent to their loved ones organs being donated. Jess was called, and the transplant went ahead. I suspect if it hadn’t, I would have been making some very hard phone calls to our mutual friends over the next day or so.<br /><br />As I have mentioned before, I am not religious. I do not believe in prayer (although I very much appreciate why people do it; feeling helpless is pretty horrible), but I do believe in the power of people. I think it is incredible that so many people have shown so much love and caring for Jess, and have fought for her and along side her all this way. I think it is magical that people at such a horrific time of grief can be big enough to think of others and to hope that through their personal tragedy, some good may emerge. I think it is astounding that Jess has managed to fight this hard, for so long, and survive the impossible. I think people are amazing. <br /><br />It is very early days for Jess, and she still has a long way to go, but there is a shared feeling of relief all round. She now has a chance, the chance that she’d desperately hoped for and clung on to. All thanks to someone quite ordinary, who never met her, who chose to do something amazing and signed the <a href="https://www.organdonation.nhs.uk/ukt/Consent.do?campaign=1160">Organ Donor Register</a>.<br /><br />Wishing you all a happy and healthy 2010, with one final quote which I look to again and again and will continue to aim towards next year: <br /><br /><strong>"be the change you want to see in the world."</strong>Tinypoppethttp://www.blogger.com/profile/18264261421802702883noreply@blogger.com3