Break in the glass moment.

 So here we are 7 months on and the pandemic has altered people lives in both enormous and small ways. 

My experience of how the lockdown started was a bit surreal, I was sent home from work at the beginning of March and told to work from home, and from there things just seem to have escalated quickly, then things started to look a little brighter, I even made it back into work for 5 days before I was told to go and work from home again and now cases in the UK seem to be soaring once again, I've heard that colleagues have become ill with Covid some more than others. 

I like to think that there have been some positives to emerge from all of this, have we changed into a kinder more caring society? Has kindness rubbed off on people? More people (perfect strangers) seem to say hello in the street, work emails and meetings always start with something personal, and show care for the recipient or meeting attendee. There appears at least at face value to be plenty of support on offer for those who need it, we would appear to have become a more caring society. 

Still, I miss normal life. I miss going to work, my colleagues, the random conversations that only happen in the admin kitchen, I miss been able to pick up my nephews from school, I miss meeting friends after work. I miss celebrating birthdays and occasions, so many have passed by already this year with no real celebration. 

Most of all, I miss doing spontaneous things; going for a coffee, to the pub, to the coast overnight just because we feel like it. 

I hope with my entirety that this will all have been a sacrifice worth making to ensure that we can return to life as we knew it, to some kind of life as it was. Currently it feels a little like we're all just waiting for that 'break in the glass' moment. 

Until next time

Shez xx

Shielding to be paused on August 1st

A observation I have discovered during my time shielding... only other shielding people fully understand shielding people.
I've heard countless comments such as, "well, It's for your own good", "at least you won't catch it!", "you get to stay at home and don't have to go to work"

Well, here's some news... most people who are shielding would much rather be at work, would much rather be able to do their own shopping instead of burdening others with the responsibility. It's not like we're at home but we can just pop out if we feel like it! We CANNOT leave home.. Just put the shoes on and think about that for a minute, think about the effect that may have on someone's mental health.

Needless to say I was over the moon when "our Boris" announced that shielding would be paused from August the 1st in England.
That's not to say I am in any kind of rush to go anywhere in particular (except to the pub for a pint) *joking*, but knowing that that freedom of choice is now once again in my control or will be very soon, lifts an unbelievably heavy weight from my shoulders.

I've counted this morning the number of books that I have read since been told I have to shield and it's rocking in at a staggering 14!! I've thoroughly enjoyed reading every single one and find myself actually missing the characters... Hmmm what was I saying about the pub and a pint lol..

So today is our wedding anniversary... Three years ago we said "I do" infront of our family and dearest friends.. It's been a very quick three years and only feels like yesterday. But I wouldn't change Mr Tingle for the world, he's most definitely my absolute rock, and he knows when to give me the kick up the butt and motivation I need if I'm having a day when I feel like the whole world is against me. He works so hard and he truly is my world.

So what will I be doing with my new found freedom come Aug 1st ..... I will be trying to slowly build back the confidence to go a shop, to interact with other people, to hug and squeeze my family whom I have missed seeing so very much,  to feel 'normal' again, what ever 'normal' is.
Will I be taking precautions? of course I will. The virus hasn't disappeared just because shielding is paused! In fact I don't think that Covid-19 in its entirety will disappear for a very long time. 

But for now... To those of you reading this who are shielding enjoy your new found freedom albeit safely... to everyone else, stay safe, follow the new rules, they're there for a reason!

Shez xxx

Common sense and perspective!

Hi all,
I hope this blog finds you well..

So it would appear that we may have to live with Covid-19 for months to come if not years. So instead of feeling like everything is useless we need to learn to live with this fact - Covid-19 isn't going to just disappear.

I've seen and read some absolutely crazy stuff on social media of late. Such as drinking loads of hot water will somehow kill the virus, that you can catch covid-19 through food! Covid-19 is associated, like the flu, with drops of infection, but by all means but your food in the microwave if you so wish.  Also immune boosting foods such as cider vinegar, ginger etc whilst they are not going to harm you, they're not going to cure you.. they're for a stronger immunity not a cure.

I haven't been out in almost 11 weeks now. I think I must have read around 8 books and watched numerous programmes on netflix. one of which I really enjoyed called Anne with an e, a period drama about a feisty young girl fighting to fit in once she is adopted.

Trying to gain some perspective on on the whole debacle is hard. I mean I was so pleased when the government said that us who are shielding can now go for a walk but that doesn't mean it's easy just to throw on a pair of trainers and take myself off for a walk, there has been so much in the media stating how dangerous the outside world is at the moment for me that despite what the government maybe saying, it still feels too soon! And by all accounts Wales are now advising the shielded to shield until mid- Aug!

What's best for people individually is going to differ, how long it takes individual people to feel safe is going to differ. As for me, I will continue to shield until the end of June as per the current guidelines and then I will decide (using my common sense) for myself what's right for me and for my own mental health and sanity. Please don't assume by that that I mean I will be rushing off to any shops or busy places like I said I will engage my common sense, but perhaps a walk out in the open somewhere would be nice.

I'm going to leave it there for now, nothing much more to say other than stay safe, use your common sense and oh yeah wash your hands frequently - with soap - just average soap will do it's a virus after all so antibacterial won't make any difference.


Much love
Shez xx

Fear of loosing ones independence and Covid-19 musings...

Morning/afternoon/evening inmates dependant upon when you're reading this.

I'm going to be honest this whole lock down, mustn't leave my house is really starting to get to me now. I don't even know what week I'm on? end of week 7 I think or maybe it's 8. If anyone knows please do let me know.   I do suspect though that for the vulnerable group the remaining "5 weeks" will be increased further all so that "healthy" people can go on and get along with their normal daily lives again. Now I know that must sound extraordinarily selfish I mean why shouldn't healthy folk go and get on with their lives? BUT everytime I hear the news or read something it's like us vulnerable, shielding folk have been forgotten about, or that it doesn't matter that we're currently isolated and unable just to go out. Food and other things are delivered, taken inside and washed before they're put away, you can stand at your front door and have a long distance chat with family who have dropped off your essential shopping but that's where it ends. I haven't been out of the house properly for over 50 days and this strict isolation is proving to be mentally tough but you know what's harder watching members of our society who are actively choosing to go and socialise with whoever they choose... a neighbour, oh lets have a street party, or a picnic in the park or I know perform a conga!! I mean seriously! From the bottom of my heart I sincerely hope that these individuals won't be relying on our NHS over the coming weeks all because they couldn't adhere to the rules.
The vulnerable people are not just the elderly, it's everyone with a serious underlying health condition young or old, people like me who would just like to rejoin life.


I refer to  the fear of losing ones independence in the title of this blog or developing an unconscious desire to be taken care of by others, at it's core I suppose I mean it's a fear of losing that ability to manage your day to day life, losing control of the emotional and social parts of your life. I've been there before when my life was on hold waiting for a transplant, no energy to leave the house, was lucky if most days I had the energy to get dressed.
Now I'm not for one minute saying that I'm back there, I'm currently healthy and can sit in my garden (although maybe not today, I think today I would perhaps wake up in Kansas or OZ.)  But the principal is the same, it's just such a big ask of anyone young or old, healthy or ill to give up that freedom and to confined themselves to doing not very much at all. And whilst none of this is anyone persons fault, the continued selfish behaviours we currently hear about are really starting to grate on me. I'm quite sure I'm not alone in those feelings either.

So aside from working (from home) what have I been up to? In truth, not much. I did sand and paint a bench in the garden which I enjoyed doing, oh and had my daily visits from Bob the street cat. I'm about to start reading my 6th book since lockdown began, this one is entitled The Beekeeper of Aleppo, I love a true story they're by far my favourite reads.

I've stopped watching the news, aside from the daily briefing, but to be honest even that is starting to get on my nerves, I mean who even are some of the people that appear on there?

I will be watching and listening intently to what Boris has to say this evening, but to be honest, I think it's going to be baby steps, it has to be!

So until there is more to say or I feel like rambling on again I'm going to say bye for now. Take care! Stay safe! Stay home! and for goodness sake just do as you're asked!

Shez xxx

When the reality of Covid-19 hits home!

So almost at the end of week 5 now, and well, nothing much has changed. Last couple of weeks have been a bit harder as its been what would normally have been the Easter Holidays from work, and as I'm not able to go into work to help out there hasn't been an awful lot for me to do. I'm hoping that I can get busy again next week (I need the distraction.)

So last week my Dads wife was taken to hospital very unwell, suffering with confusion as a result of a really high temperature.. My dad called me, heartbroken because he couldn't go with her and take care of her as a husband should. Needless to say, she was assessed, told she had in fact had Covid-19, told 'she was over the worst and sent home to rest with a course of antibiotics. 

After speaking with her today on the phone, it seemed to me that she is is still very poorly, her cough sounded awful, she was so out of breath she could hardly talk and can only manage a couple of steps at a time, I and my sister have both asked her to seek further medical advice, which I hope with all of my heart she does. It got me thinking about how I used to feel and perhaps sound pre-transplant, when my lung function was a mere 13%, when I was at my lowest ebb, and still, I don't ever remember sounding that poorly, poorly yes, but not that poorly. I mean I could be wrong (It's been known), it was after all almost 9 years ago now, but I dunno something just doesn't feel right, she is just so breathless.
That then takes me on t the considerable amount of worry I now have for my dad, who is also a very vulnerable person, and possibly the world's worst patient too (stubborn and cant see when he needs help.) He is apparently sleeping alot and I dunno I just hope he seeks advice should he feel he needs to.

I hate been in this position where I just cannot jump in my car and go check that everyone is ok. It goes against every instinct that I have!

Im going to leave you this piece of writing from my sister..

Please everyone, stay at home, stay safe, that lovely beauty spot thats more than 10 mins from your home, that you need to use your car to get to? When all is said and done, is it or would it be worth it? The parks, the walks, the beeches, they'll all still be there and better still so will you be, if you just do the right thing and stay at home.

*By my Sister*
I am not one to get involved in political debate, I never have been. But in this instance I feel the need to share my opinion.
When this all started everyone was complacent! It's just the Flu, I heard a few times!
When it ramped up (as many of us suspected) people looked to the government for a solution. People praised Boris for doing a great job. People looked at hm for answers.
Now that the death toll has reached that awful point of being over 10,000 people are starting to get angry. Why didn't the government act fast enough? Why is the NHS so stretched? Why is there a shortage of PPE? Heads need to roll! People need to take the blame! It's natural... when we're scared, insecure... we need someone to blame!
Now this isn't the first time illnesses have spread.. Spanish Flu, Ebola, the Plague etc... dating back years and years! For many years people have known how vulnerable we are to illness, how fast things can spread.
Yet people think Boris is responsible,
Every single government that's been elected. Evey primininster, every health secretary... everyone knew our NHS would, at some point, be at breaking point. Everyone knew PPE was an absolute necessity and we should have had it ready in huge supply. We have front line workers dying in the line of duty.
But before we place the blame everywhere else,,, we need to take a look at ourselves. Yes our NHS severely lacks funding! But, day in day out the health system is abused... obesity is rife because people fill their kids with junk food instead of cooking at home, mental health issues are rife because the media and social media tell our kids they need to look a certain way, Our A&E departments are crammed with people that don't need to be there!Notice how quiet they are now, so many people, all of a sudden can manage their own ailments at home.
No prime minister would envy being in Boris' position, No one can say they would have handled it differently... Why? Because we would still have a shortage of PPE, we would still have idiots that think its ok to have parties and BBQ's on the beech during lockdown!!
Collective responsibility is what is needed!!
Be the change you want to see.

Don't like the spread, use your head and stay at home!!

Take care guys!!

xxx

Please stay home. I don't want Covid -19!!

Morning, afternoon or evening inmates, depending when you're reading this... that is if you're reading it at all.

"Only when normal things are not normal anymore, do we realise how special normal things are."

Almost the end of week 3! It's definitely the small things I miss, the really silly things, the freedom to go to the shop, to go for a walk (ok, that doesn't happen often) but it's when you can't, that's when you realise just how important these little, seemingly,insignificant things are.  Being able to call round to my mums for a cup of tea and a chat which almost always ends up in us putting the world to rights!

I've heard and read some very unsettling things in the media this week. I try not to pay too much attention because, sometimes it's difficult to distinguish between real and fake news particularly on social media, but, when you read that people unlikely to survive Covid-19 won't be offered life support (or a ventilator) and are been asked to sign a DNR (do not resuscitate) that statement alone fills me with dread. That's because potentially and I stress potentially, I'd be one of those people who would fall into that category if I were to fall that seriously ill. Now I'm not silly enough to think that it's that clear cut, but to put it bluntly that's the reality..
I suppose if I really sit and think about it... no...I don't understand it, not at all. I know that I didn't get this far, to only get this far! So please when your thinking about just popping round next door, I mean it can't hurt can it? or just popping to that park, or beauty spot, or beech, I mean what harm could it do right? You are potentially taking someones chance at life away from them, that's the harm, that's the risk... Put the shoes on, imagine that someone is someone you love, someone you couldn't live without!
Equally as bad, imagine someone you love circums to this god awful virus and your not there, you can't even be there to say goodbye at their funeral (if you call it one of those, with no one there to say goodbye.) I don't think I could ever come to terms with that.

So please, just do as you're being asked to do, after all, it's gotta be easier than the alternative.

Take care, much love! xxx

When a picture really does speak a thousand words!

So here we are, end of week two of isolation. If I'm honest the days of this week have just seemed to merge into one, everyday being much the same. I did manage to sit in my garden for an hour yesterday though which was lovely. (It is very isolated and I was alone.)

The current times are incredibly tough in different ways for different people. An online friend of mine yesterday, however, opened my eyes to the fact that despite what is currently taking precedence in the news and absolutely rightly so, there are still people dealing with their own current heartbreaking situations. I'm not going to discuss the situation as it's not my story to tell, but it just goes to prove that right now despite not being able to go and see someone, people still need you, they just need to know you're still there, so pick up the phone, video call your friends and family, sometimes seeing a face is all you need.

So what have I done this week outside of my designated working hours? I've started to read a book called Malala - it's about the girl who campaigned for girls rights to education and subsequently got shot, it's a very good read so far!

I've made choc chip cookies.. mmm.. and homemade Pasties.

I also had some company from Bob our partially adopted street cat, I say partially as he comes and goes when he pleases, sometimes stays for a sleep, sometimes doesn't.

Oh and drink... I've had copious amounts of prosecco and Brandy with Baileys! (Not together or on the same night!) but it would seem that drinking on a school night doesn't really matter when you can't go to school!

OOPS!!

I'm going to leave you with this last image... When a picture really does speak a thousand words. Thank you to every single person in our NHS.

Pause and reflect.

One week of self isolation completed with many more to go... I'm not going to say staying in the house is easy by any means but I suppose when I think back to 2011 and the time directly after my transplant whilst in ICU and other hospital wards I was self isolating then, couldn't be in busy public places or use public transport, that lasted around 3 months too so I'm figuring I've got this!

I've missed the hussle and bussle of school life this week, my colleagues and just the general feeling of being a part of something.

But throughout the week whilst working from home I've taken moments in my day to just stop, pause and reflect.

The sun is still shining, the birds are still singing, and there's hope, there's always hope.

If you are self isolating for whatever reason then keep going, it's difficult but you've got this. Use this opportunity to do other things that you wouldn't ordinarily have the time to do, read the book, listen to the music, learn to play the instrument that's been sat in your room for almost a decade, untouched because you simply don't have the time.

Pen a letter to a friend, forget emails and other technology, go back to old fashioned pen and paper.


The above is how I'm using my time when not completing work tasks.

Stay safe, and above all listen to the advice from the government and medical professionals, because like it or not, they kinda know what they're talking about.


"Dum spiro spero" - Whilst I breathe I hope.

My own thoughts on Covid-19

I used the word Covid-19, because in all honesty I'm tired of hearing the words Coronavirus, or should I say I'm tired of hearing all the 'media hype.' That's not to say I don't think the current epidemic is serious, but more that I prefer to listen to the science not the media.

I keep hearing conversations or seeing comments about how people don't think hand washing will make a difference, or how it doesn't matter if people gather in crowds, comments such as 'well, if I get it big deal, it's only a virus, it's only a flu!'

WRONG!

To be fair for the majority of people in the UK if and when they do get Covid-19 it will be quite undramatic and they will recover relatively quickly and unscathed. However, that then brings me to think of the small minority I think it's roughly 5% of the population in the UK for whom that simple, unscathed scenario won't be the case.

I am part of the small 5%, my mum is part of the small 5%.

This was me in August 2011, recovering from a Double Lung Transplant. A second chance at life, the ultimate gift!
ICU or the Intensive Care Unit is not anywhere I would wish anyone to be and is certainly not somewhere I wish to be again any time soon. But you see, this is potentially and I must stress the word potentially where members of the small 5% minority could end up amid this virus outbreak.

So please if I decline an invitation in the very near future, don't take it the wrong way, if you visit me and I insist you wash / sanitise your hands, please don't take offence, if you're full of cold (albeit just a common cold), please keep a safe distance from me... I'm not being ignorant, I'm not being silly or OTT, my immune system simply cannot handle it like yours would.

I won't be partaking in the mass hysteria of panic buying or stockpiling- it's unnecessary! I will be, however, taking small but necessary measures to protect myself. If any of my work colleagues are reading this I would like to thank you for your support and understanding.

So here are my three pieces of advice (which guess what, mirror the advice of the scientists, and our NHS whom I trust wholeheartedly..

1) Wash your hands with soap and water... (I'd question anyone who doesn't already do this, but perhaps for now, do it a little more often.

2) Avoid over crowed, public spaces and where possible public transport.

3) If you do develop a temperature, or a dry unproductive cough then say home until your symptoms subside.   

Life's just wonderful.

I haven't written a blog for such a long time and I can only put that down to having nothing to report. Nothing health wise that is anyway.

I had a wonderful Christmas and New Year spent with loved ones and friends and my Donor was never far from my thoughts not that she or her family ever are. I turned 30 on boxing day... An age most people dread reaching, but not me. Turning 30 was a huge milestone and one I was proud to reach.
I started a new job in November. I'm still finding my way a little as I've not got quite as much responsibility as I'm used to so tend to feel that I'm at a loose end sometimes.. Perhaps now I have full health I'm just craving more challenges and career progression so 'watch this space' lol as they say.

My other project that I started to talk about in my last blog is coming on nicely. I just now need a website and short video. It's all about my fundraising and about raising awarness about Organ Donation. It's all going under the label Living the Impossible dream - Organ Donation the ultimate gift. I have a fantastic logo thanks to a friend whom I've known since school.
Mark and I are also busy saving every penny towards a deposit for a house hopefully we will have it soon.
Lol we have also decided to do the BUPA Great North Run in September. This will be my first official fundraiser using my new logo. I said I'd never do the run again but it's for such a good cause, it's for the transplant unit at the Freeman hospital in Newcastle where I had my transplant. Hoping to finish in under 3 hours this year.

Will leave you with some photos.
Love & best wishes
Shez xxx

A long overdue update

It's been a while since I last blogged, I guess when things are going well you think that people may not be as interested in reading about what's going on in your life no gritty or gory details. My last clinic appointment went well. Lung function stable despite the tracheal stenosis still evident. I've also apparently reached the pinnacle point where I no longer require an xray at each clinic visit. I do still struggle some days with the stenosis but the option of surgery is not really a road I wish to go down right now. 

I had a wonderful Christmas & new year, it was left to me & Mark to cook Christmas dinner for everyone (9 people) and it went without a hitch and I didn't poison anyone lol. My mum cooked for us on boxing day for my birthday which was lovely I just wanted to mark the occasion quietly so it was nice. Big 30 this year which, to be honest was an age I was beginning to think I may not see & I have no doubt that without my donor I wouldn't have. 

So what's happened so far this year? Well I'm currently trying to organise my best friends hen night at the end of June and we're also going away in June and I'm super excited. I haven't been on Holiday since my transplant and there is a big group of us who are going so it should be awesome. It's definitely a welcome break, this time last year Mark was very poorly in hospital with encephalitis a virus that attacks the brain, doctors told us he may never remember who we are or even be the same person anymore but thankfully he made a full recovery although it took almost 3 months. It was very worrying its strange how if you're ill you can deal with that but when it's someone you love its really hard as you you would give anything for them just to get well. 

I'm currently trying to establish the "Breathe easy Sport & Dance Foundation" with a hope of inspiring a generation to look after their health regardless of their situation. If anyone would like to design me a logo I'd very much appreciate it. I'm also considering the BUPA Great North Run again or Great North Crawl as I so aptly named it last year then who knows London 2014 hmm maybe slightly ambitious but who knows.

I think that's all for now. I'm keeping busy and busy at work also. Hope everyone who reads this long overdue update is well. Good luck to two ladies who I went to school with who are taking part in two charity events Sarah is taking part in a half marathon for a children's hospice and Kelli is jumping out of a plane for cancer research. Best of luck to you both. And a huge Happy Birthday to Rachel who was 29 years young yesterday. 

www.organdonation.nhs.uk sign it and change someone's life. 

One year on and half a marathon!

Well who would have thought it. Just 13 months after my lifesaving surgery I completed the BUPA Great North Run in a time of 3:45:36. Now to the average person that time would seem quite long, however, i'm not your average participant and I was chuffed that I managed to finish in under the 4 hour mark. It was a great day, the atmosphere was fabulous and there were lots of people doing it in fancy dress, even a guy running the whole race backwards. The red arrows that flew accross at the start were amazing and we even got to stop and chat to Denise Lewis for 10mins although unfortunatly by the time we reached the half way point they had finished the live interviews so it didnt get aired but was still nice to meet her.
My story was covered by the BBC during the coverage of the race and I hope it got the point accross about how important organ donation is and what a difference it can really make & also about how important it is to raise awarness of both Organ Donation & Cystic Fibrosis.

I thought about my Donor for the entire 13.2 miles, because of course without them & their family, this would have remained an impossible dream and non of it would have been possible. It was literally the hardest thing both physically & mentally that I've ever done. Every mile was grueling and at points I felt like just sitting down and giving up but the thought of my donor kept me going. The last 1/2 mile was the hardest I had excruciating cramp in my calfs and I don't mean pins & needles lol and I had serious D.O.M.S (delayed onset muscle soreness) for two days afterwards. But crossing the finish line and the feeling of achievment made it all worth while.

There are a few people I need to thank my boyfriend Mark Tingle for coming along and giving me your support spending his whole day trecking back from the start line to South Sheilds and not even getting chance to have a beer because the Metro line was so busy and for literally holding me up after I crossed the finish line it was great to see you as I crossed the finish line and I love you lots. Matthew McArdle for completing the race with me and getting me past each grueling mile and sacrificing a PB time lol. Everyone who's supported me and sponsored me, I'm not yet sure of my final fundraising amount but after an initial look it's looking that it may hit the £1,000 mark and most of all a huge thank you to my Donor and her family without whom, non of this would have been possible.

Its still not too late to donate at www.justgiving.com/living-the-impossible-dream.

All thats left to do now is think about what I can do next year, but for now I'm going to recover from this event!

All in the role of a dice

 

This blog has stemmed from a friend of mine getting the go ahead for her double lung transplant. Jess has been greatly in need for far too long and was in desperate need of that life saving call.

10 months ago I received what was to be a call that didn’t just save my life it transformed it completely, I can do things that I could never do before and I will always be grateful and in debt to my donor and her family.

That night whilst anxiously waiting at the Freeman Hospital for news as to whether my transplant would go ahead or whether I would be going home again I was sat on the bed gowned up and ready to go looking at face book and I’d had a reply to my status about been prepped for theatre etc . It was Jess who had replied, she said she was also at the freeman on the other ward. Turned out we had both been called, now I always knew that there were two people called at any one time for a transplant, just incase there was a problem such as raised infection markers or you were running a fever in which case you’d be deemed unsuitable at that point.

Thing was when I realised it was Jess it added into the already massive mix of emotions, we were from the same CF unit, she was desperate as was I, but she is also so much younger than I am and I know they say you can suffer from survivors guilt after your transplant but guilt set in as soon as Jess had told me that she was running a temperature so had been sent home, I began to think that she in fact should have been having her transplant that night.

It prayed on my mind right up until Kirsty my transplant coordinator came in and told me it was all systems go then the whole “ok I'm about to go have a double lung transplant” apprehension kicked in.

It wasn’t until I’d fully recovered in ITU and was moved to a normal ward and caught up with the outside world or should I say world of face book that it again began to weigh heavy on my mind, I constantly kept up to date with Jess and how she was doing and prayed that she would get her call and soon.

I think (not sure) that shortly after all of this Jess had another false call. I felt completely discouraged and sad for Jess and thought it really is like the “role of a dice” anyone little thing and your whole future is left hanging in the balance.

So I cannot describe the elation, the relief that I felt for Jess when on Monday she finally received that call and got the go ahead. It was third time lucky for Jess just as it was for me. I hear that Jess is doing really well and is now breathing for herself and is smiley and trying to talk. It’s amazing, the team at the freeman hospital are fabulous and she’s in the best hands!

So this blog is for Jess, you got there lovely lady welcome to the rest of your life... Thinking of and thanking your donor and their family.

Perhaps now I can put aside those feelings of guilt that I had for Jess.

Thinking of you Hun and wishing you a smooth, speedy recovery, but remember slow and steady wins the race.



Haven’t signed the Organ Donor Register? Why not?

Manchester 10K FOR lltgl

Well I did it, managed to complete it in 1:47:23 and ever mile or Kilometre was hard work but I just focused on the end and had never been so releived when we hit the 1km to go sign. I managed to raise just short of £200 for LLTGL and to say im only 9 months post double lung transplant I think its quite an achievement. I'd like to thank my bestie Leanne Baldwin for doing it with me and Rachael Dennis for staying in Manchester and watching us cross the finish line all in all was a great day.

I've now re-commenced trainning as I'm taking part in the BUPA Great North Run on Sept 16th. This one is 13.2 miles and I'm aiming for a time of 3hours 10. I didn't give my self a time to aim for in the recent 10k as i thought perhaps it would be too much pressure, but i'm really hoping to complete the GNR in the time thats been set.
It's quite a grueling trainning schedual, well I think it is. but perhaps thats because during the run up to transplant I wasn't physically able to take part in regular exercise so its taken 9 long months to build up my fitness & staminia and it's only now that i'm starting to feel a real difference.

My fundraising target for the GNR is £500 and i'm almost there but I would love to smash through this target and raise as much money for the CF Trust as I can and also as much awarness as I can. So if you have a spare £1 or even just a 50p then please visit www.justgiving.com/living-the-impossible-dream

I spoke to a journalist from the Times paper on Monday. He wanted my views on the emotional and practicle side of recieving lungs from a donor who smoked. I told him that I remembered been concerned that I was giving up my own lungs which were damaged beyond repair for another pair that may also be damaged due to smoking, however, I also remembered what It was like to be ready to go to theatre and then be told that the lungs were not suitable and then been sent home to again wait for the phone to ring. So on the night when I was told that the lungs were good but they were from a smoker I had to weigh it up... what if this is my only chance, what if i say no thankyou i'll wait and that call never comes and then it hit me the realisation of it all, because in actual fact when you cant breathe you cant do anything, put a straw in your mouth, hold your nose & breathe.. Hard right? well thats what everyday was like for me so when it came down to it, it was a no brainer any lungs had to be better than my lungs and I completely trusted my surgeon and TX team. Nine months on and i've already completed 10k and I'll complete the GNR too, I've returned to teaching PE and Dance and I can Breathe there's no better feeling, so should lungs be used for transplant even though they've come from a donor who smoked? Of course they should!!

The psychological impact of Transplantation.

Its strange how, the doctors and transplant coordinators, even the surgeons can answer all the questions you have regarding your transplant, but the one thing that you could never be prepared for is the Psychological impact of Transplantation.

I’ve read a few blogs recently and I could relate to most of the points they were making. You go from been happy and content with the fact that you can maintain your ability to just breathe to all of a sudden feeling like a small person in a very big world which is whizzing past you at an absurdly  fast pace and you don’t know where you fit in anymore, how do you find the missing piece of the puzzle. You have to get to know yourself all over again.

If you’re like me then you’d have worked right up until it was almost impossible to do so, my job at the time meant that it became impossible to do so fairly early as having bad lungs impacted quite severely on my ability to teach PE and dance effectively and to a good standard. I’ve recently gone back to work, well I’ve gone back as a supply teacher, but if I’m honest that’s not through choice. I’d much rather have permanent post where I can put down some roots and establish a familiar routine with colleagues. I’ve had several interviews now since transplant and every time I get told I haven’t got the position because someone else had more “recent” experience. I don’t know how I’m supposed to fix that, I’ve taken up voluntary positions in schools to try and gain more recent classroom experience but that doesn’t seem to be working. You can’t help but begin to think that the minute you mention why you have an employment gap that they immediately see red and use your lack of recent experience as an excuse.

On a more positive note my training for the Manchester 10K and the BUPA Great North Run is going well. I managed 7K in 1hour 27mins today. I could just do with the tracheal stenosis that I have been sorted out permanently as it’s really quite restricting.  

I should say thanks to Matthew my Personal Trainer who has put together a gruelling cardio workout and is working hard to help me to be fit enough and strong enough to complete these two challenges.  Anyone who’s interested in 1:1 personal training sessions should check out his website or email him. www.nuphysiofit.co.uk   info@nuphysiofit.co.uk  I feel I’ve come a long way since I was first referred to him when I was listed for Transplant.

That’s about all for now. Please feel free to visit my just giving site and help me to make a difference by sponsoring me as much or as little as you can. www.justgiving.com/living-the-impossible-dream

Thanks xxx

Living the impossible dream

If someone would have said to me 7 months ago that I’d be planning to and entering the biggest half marathon in the country I’d have laughed at them and said don't be so ridiculous I can't even walk to my car.



But now 7 months post Transplant I find myself training to complete the BUPA Great North Run. I chose the Great North Run because it takes place on September 16th in Newcastle and I will be 13 months post transplant by the time the run takes place. So it all ties in together quite nicely.



I’ve also registered to complete the Manchester 10K as a warm up to the big one. That takes place on May 20th and I will be completing this for Live Life Then Give Life which is a charity that promotes Organ Donation and supports people who are facing and going through the prospect of transplantation.



Training for such an event isn’t by any means easy new lungs or not. I have to remember that my fitness levels are absurdly low and I’ve not walked for long distances for over 2 years let alone run (I’m not even sure I can remember how to run).

I managed to walk 4.3 miles on Monday in 1 ½ hours and it involved some quite sharp inclines. I’ve also been attending the gym and working with the Personal Trainer whom I was referred to pre Transplant. Matthew introduced me to a programme of fitness which included lots of cardio; I was introduced to boxing lol and also worked on core muscle strength. So his task now is to get me fit enough to get through the Great North Run I’m not promising to run the whole distance but I am promising to finish, I’m not going to set myself a ‘time’ target as I think that may be a little too much pressure, I’d realistically like to finish within the 4-6 hour time bracket but we shall see.



I’ve set up my just giving page which is www.justgiving.com/living-the-impossible-dream and I’m hoping to raise as much money as I can for the Cystic Fibrosis Trust.

So please visit my just giving page and help me to make a difference to those with Cystic Fibrosis by living the impossible dream

xxxx

When thank you will never really be enough.

I’ve been thinking for some time now that I should write a letter of thanks to my donor’s family. However, I’ve been struggling with what exactly to say. How do you honestly thank someone for saving your life, I mean is ‘thank you’ ever really ever enough, too little words in exchange for my life back, it just doesn’t sit well does it, but ‘thank you’ is all that I have. Then I got to thinking about what if they don’t want to hear it, maybe they would prefer to know nothing about me and my life, I have to remember of course that although I'm almost 6 months post transplant and absolutely, undoubtedly, loving living life, my life. My donor’s family are still grieving for their loss; they have just spent their first Christmas without their loved one.


Below you will find the letter that I have decided to write & send, some may think it insensitive to share such a personal and private letter, but I do hope not. I hope it helps people to see both sides of the transplant process and that without the kindness and shear unselfishness of people like my brave donor and their families then people like me simply may not still be here. I also hope that it may help others who like me just didn’t know where to begin when writing the hardest letter I’ve ever had to write.


Dear my donor’s family,


I must have written this letter to you over 100 times in my head, but when it comes to putting words on paper I’ve struggled. That’s not because I don’t know what to say, it’s because I don’t know how to say it. How can the word’s thank you ever really be enough, so please, bear with me whilst I write the hardest letter I’ve ever had to write.


My name is Sharee, I’m 28 years of age and I was born with the genetically inherited disease Cystic Fibrosis (CF). I had a relatively healthy childhood & adolescence all things considered, but growing up I always knew what the eventual outcome of my disease would mean, either, I would need a transplant or I would die young. I never particularly found either of the two eventual outcomes easy to deal with, but nevertheless, I put them to the back of my mind and never allowed C.F to rule or define who I was. I finished school with 9 good GCSE’s and 3 good A Level’s. I went on to university to study Health & Sport and graduated with Honours. I then went on to teach Dance & PE in various Primary & Secondary schools. Ever since I can remember, dance has been a huge passion of mine, it was never just a job or something I did, it was a huge part of who I was, that is until the CF decided to make the decisions. In 2010 I was hit by the realisation that I was no longer in control, CF was attacking my lungs and I was powerless to stop it. I don’t think I will ever forget the day when my specialist told me that my lungs were failing me. I can still hear her words as clear as day “Sharee we’ve looked at your x-ray and your rate of decline and we think it’s about time you were assessed for a double lung transplant”. Everything, every word she said after that was like a movie on mute, I could see the picture but hear no sound, except that of my own heart thumping in my ears. I was devastated, I knew the statistics, it could take days, months, years even to find a match and I could die waiting. But I’d come so far and wasn’t ready to die yet even though at 27 years of age I was been told in no uncertain terms that without a transplant I would die. I was staring my own mortality in the face and I have never been or felt so helpless and scared.


I waited 7 months and 27 days with two false alarms during that time. Then on the 10th of August 2011 my life was to change forever, I received the phone call which didn’t just save my life, it gave me my life back. I’d got used to living ‘half a life’, I was merely existing not living, I was reliant on supplementary oxygen, endless intravenous antibiotics and instead of planning a future, I was making notes about my funeral and writing letters to loved ones and friends just incase I didn’t make it.


The operation wasn’t without its complications. I should have been a TV star; I can never do anything without a little added ‘drama’. I spent four weeks in intensive care fully ventilated and was unconscious for the first week. Now home and doing very well. My lung function has gone from a mere 19% to 60% and I can breathe, I can laugh again without the fear of ending up in a fit of coughing which would leave me gasping for air. I saw my 28th birthday and next year I will stand at the side of my best friend as she gets married, we’ve been friends since nursery school and this is a day I feared I’d never be around to see, you see I’ve always seen her as a sister rather than just a best friend and I will also get to continue to watch her two beautiful children grow up. I get to make plans for a future with my amazing boyfriend who I have been with for 5 years and my family and I can return to work doing what I absolutely love to do. I have also applied to take part in the Great North Run this year in memory of Christine and to raise awareness of Organ Donation and to raise funds for the Cystic Fibrosis trust.


So you see, thank you won’t ever be enough, but it’s all that I have. Please know that I remember & think of Christine with every breath and myself and my family are eternally grateful for hers and for your bravery, your decision and for giving me the greatest gift of all, the gift of life. She will always be my hero.


Eternally Grateful


Sharee x


P.s I would love to hear back from you, to know more about the wonderful lady who saved my life, but I completely understand if this is not something you wish to do and will not think bad of any decision you make. I hope my letter has helped you to see the good in your wonderful decision to agree to organ donation.


Again from the bottom of my heart


Thank you.

Life Post Transplant

I’d like to be able to write that life post transplant has been amazing with no further complications, but that would be a lie. I have had post transplant complications but then almost everyone who has a transplant gets some kind of complication whether it is signs of rejection or something else.

My complications haven’t been that of rejection but narrowing of the upper airways which their putting down to the way my trachi scar has healed. I had a small procedure a couple of weeks ago where they dilated the airways, however I was told it may happen again, which it has, so the airways will now need a stent putting in place to permanently keep them from closing again.
I’m also currently on my CF ward due to having a low white blood cell count, apparently it’s the anti-rejection drugs which are more than likely to be the cause of this. So my CF team are liaising with the Transplant team in Newcastle and hopefully this will be resolved over the next day or so.


On the brighter side, life post transplant is pretty cool, I can take in more air than ever before and to see the SATS monitor say 97-99% is pretty awesome, I used to be lucky to see 92% or on a really good day 94%. I have bundles more energy and no longer struggle with the daily day to day tasks like cooking, cleaning, shopping etc. I’ve also got to the point where I’m considering returning to work after Christmas, but I don’t really know what I want to do. I would love to go back to teaching dance and PE, perhaps on supply like I was pre-transplant or maybe something totally new. Making a decision such as that I’m finding quite difficult, you see its like I had got used to living this ‘half a life’ where I was reliant on others and couldn’t work and didn’t often make too many plans in advance I just lived each day, but now this huge door of opportunity is open once again, but I just don’t know what to do with it, where do you start? You spend all your time waiting for that second chance I just want to make sure I get it right and do my donor and their family justice.


Mark and I are making plans to go on holiday next year with the rest of the family which I’m really looking forward to, will be just what we all need.

I want to end this blog by wishing Victoria Tremlett http://www.facebook.com/#!/groups/368773527723/ a trouble free, speedy recovery. Victoria waited 4 years 3 months for that life saving call and it came just in the nick of time. Welcome to the rest of your life Victoria.



Taken whilst in ITU...
What a difference
11 weeks make.












Through the eyes of a parent

Through the eyes of a parent

I said on my last blog that it was to be continued. I think the next most logical step to take is to publish my ‘mum’s log’ this contains information about what happened whilst I was unconscious and on life support but from a mothers perspective.

“Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith.”

Once again I found myself in the hospital chapel today praying for a safe recovery for Sharee and of course the strength to believe that she will make it.
I’ve got the impression over the last few days that staff don’t want to build my hopes but that is exactly what I need to hear ‘a little hope.’

The last few days have been the worst days of my life...

Tuesday we got the call to come to the Freeman in Newcastle and given the go ahead for the transplant, things were looking good, lungs a good match and in good condition, I was shaking so much, nerves and excitement about Sharee getting her new lungs at last.

7:30am Sharee was taken down to theatre they said the operation would take 6-8 hours approx. 8 ½ hours passed and I phoned Katie the transplant coordinator to ask if she could find out how things were going. She came to find me at around 8:30pm 11 hours after Sharee had gone to theatre, took me into a room and told me there had been complications, the donor lungs had been too big, the surgeon had to trim them to size, the condition of Sharee’s lungs was dreadful and secretions from them had leaked into the chest cavity. All of this had put huge strain on Sharee’s heart and it would not start beating, they had to crash it and put her on by-pass to rest the heart with the probability of leaving her chest open all night in theatre in case of blood clots because of bleeds. They decided, however, to close her chest at around 10pm and she was taken to I.C.U This news knocked me for six, I was so frightened and found it very hard to cope with. I wanted them to tell me that Sharee was going to pull through all of this, but they couldn’t their words were... “Critical and the next few hours are crucial.” No one can imagine how I felt at that moment.
I was allowed in to see her for 10 mins and it broke my heart to see her wired up with tubes, machinery etc, I was expecting it but it terrified me.

The next day Thursday the 11^th, I was allowed to see Sharee and was told I could come and go when I pleased because of the circumstances. Things weren’t looking very good, there was mention of going back into theatre because of suspected blood clots, Sharee was been pumped full of drugs to steady her heart rate, try stem the blood loss, she was needing blood transfusions and then started to bleed inside the lungs, which they thought needed to be looked at in surgery. I was hoping and praying it would not come to that they had already said that her body had suffered a great amount of trauma.

Sharee’s dad and sister arrived to see her, staff were reluctant to let both of them into visit as rules say 2 to a bed to reduce risk of infection, but again they let them both in just once to see her because of circumstance. Over the course of the day Sharee’s heart rate seemed to steady and the bleeding slowed down which was very good news I was then told that her condition was stable ‘a good sign’.

Today 12^th of August: - things have been much the same, I arrived at the unit to find another large machine had been rolled in, Sharee’s oxygen levels had fallen very low overnight and once again they suspected blood clots to be the cause.

The machine was to enable a camera to be put down to her lungs to see what was going on. It didn’t show much so again that was good.
At the end of today when I left the unit Sharee was been given an infusion to help her pass urine, with all the fluids going in not much was coming out. I was told that fluid retention can put a strain on the heart and lungs, therefore, if the infusion doesn’t work then dialysis maybe given. I'm really hoping that when I go up there in the morning they have some good news for me.

Saturday 13^th August
Sharee had a good day today; the dialysis wasn’t required which was good news. Her blood pressure was a little unstable so a few new drugs were introduced and the drug that keeps her unconscious was reduced and the pain relief increased to compensate for this. Staff were quite amazed at the fact that Sharee was moving about so much and opening her eyes considering the amount of pain relief was enough to put a rather large man out for the count, but that’s my Sharee fighting already.  So all in all, a good day. Darren came up to Newcastle for the second time which was nice; it’s so lonely been alone up here, Sam is coming tomorrow. Hopefully they are starting to wean Sharee off of some of the drugs tomorrow. The surgeon said today “we are now beginning the steps forwards instead of backwards” nobody can even begin to know how it felt to hear those words...

After seeing Sharee open her eyes and move her arms around yesterday to the sound of my voice, I was quite downhearted today to see her heavily sedated, her temp was high again 39.2 and the bleed from her right lung had increased again. They didn’t seem overly concerned about this, or if they were they were not letting me know. They answer all my questions with “yes were quite happy with the way things are” I'm sure they are happy that things are stable but it feels to me that its one step forward  and two steps back and it’s hard to get my head around. I suppose been a mum I want to see things happen faster but I know they won’t because of the trauma she’s been through. Let’s hope tomorrow brings good news...

Not a good day today, Sharee still has a high temp and her x-ray wasn’t quite as good as yesterday so another broncoscopy was arranged for 12 lunchtime.  I went for a walk and returned later .They found lots of inflammation on her left lung and sent off lots of samples to check for infection I was also told she had a bit of a seizure and because of the irregular heartbeat they had to shock her heart twice to give it back a normal rhythm. This worked for a while but the monitor which I'm constantly watching began to show irregularity again, I had to leave the unit and get some air to clear my head. I’ve got to have faith that the doc’s and nurses know what they are doing; I'm just so desperate to see improvements. There are signs that Sharee is trying to fight i.e. every 20 breaths that the ventilator gives her, she is breathing 10-15 breaths herself and when I said goodnight her eyes opened. I looked at the radio wishing it was a CD player so I could perhaps play some of her favourite songs like Avril Lavigne then the DJ said “coming up we have Avril Lavigne ‘Complicated’” what a song title, what a coincidence of thought.

Wednesday 17^th August

Today when I arrived at the unit I was told the plan was to put a tracheotomy in Sharee as she wasn’t tolerating the mouth tubes, Sharee was semi awake and trying to mime something to us. We understood she wanted her teeth brushing, but couldn’t quite get what else she was trying to say and she found this very frustrating and got quite upset about it.

I returned to the unit around 5pm as instructed by the staff and was amazed to see Sharee sat up, completely off her sedation and wide awake. She tried miming again and eventually we understood what she was trying to say and why she was so upset that I didn’t understand. She wanted to know if she had actually had the transplant, I was elated when I finally answered Yes you have had your transplant. Sharee looked up to the ceiling and mimed the words ‘thank god’. She’s asked many questions tonight a sure sign she is back and ready to fight, what a good day!

Thursday 18^th August

One week and one day since Sharee had her transplant, I think I'm going to bring ‘mums log’ to an end. Writing things down has helped me put my thoughts in order but more importantly it’s a window for Sharee to look through and see the events of the week in which she slept after surgery, a week that I can truthfully say has been the worst of my life, I’ve prayed, I’ve cried, I’ve hoped and when I get the time I'm going to have a nervous breakdown.

Sharee is bit by bit, day by day getting stronger and more determined, I can now see her fighting spirit showing through, it’s the sign I’ve been waiting for because now I know that Sharee will fight her way back to full fitness and nothing less will be good enough for her. I think I will sleep well tonight! Xxx

Call number 3 The call that’s literally ‘saved my life’!!

The call that’s literally ‘saved my life’!!

Before I start to write this I would like to dedicate it to someone whom I never got the chance to meet, why? Because they were too busy saving my life... this is for a friend, an angel it’s for my hero without whom I wouldn’t be here... My Donor.

I'm having a little trouble putting into words how I feel; the 10^th of August was so dramatic, we had been at the football match Leeds United V Bradford City at Elland road by we I mean Mark, Jack and I. Leeds had won, it had been a good game, I struggled breathlessly back to the car afterwards sat down puffing on the inhaler when the phone went, it was 10pm on a Tuesday evening and my gut was telling me it wasn’t a social call. I was right it was the transplant  coordinator telling me they had some good lungs and I needed to move quickly, well that’s when the drama started, I couldn’t move quickly I was stuck in traffic and had no idea where I was. The transplant coordinator told me to stay where I was she was going to send a police escort for me as we’d managed to give her a rough Idea of our location and of course the car details. . Time was passing quickly and there was no sight of any police so I and Mark made the decision to set off the traffic was clearing and we needed to move.  The coordinator rang back so I told her of our decision and she said to ring back when I was 10 mins from home, so that’s what I did. But I assumed she meant Mark’s home, nope wrong again so after a hard cya later (mark couldn’t come as he had to look after Jack) off I zoomed home luckily it took only 10 mins but my gosh I pulled up and there was a first response car and ambulance all with the flashing blue lights going, peeping neighbours and me sat there thinking my days talk about drama...

After a few checks o2 levels etc, off we went in the ambulance, blue lights all the way... I had always said I never wanted all that fuss teach me for going to midweek football. So it was just me & my mum all the way to Newcastle it took us about 2 hours maybe a little less.

Once we arrived things happened very quickly, x-ray was done, blood was taken and I was told the lungs look very good on paper and as long as the retrieval team are happy I would be going to theatre.

About half an hour after this the coordinator came dashing in and her exact words were “so Sharee, do you fancy some new lungs?”  I think I nodded that’s all I could do I couldn’t breathe, couldn’t get any words out, I had the excited/scared feeling running through me.

Then it all hit me like a freight train at 100 MPH. This was it my life in someone else’s hands, the hands of a surgeon who we shall call MR TOC, I didn’t know him, I was just another case to him, another number. What would I do if it all went drastically wrong? My mum was up here dealing with it alone, sat waiting for over 10 hours for the ordeal to be over. How do you truly put those feelings into words, imagine that was someone you loved, your family, your child could you describe it? Deal with it? I wanted to sit and cry I was that scared but I couldn’t afford to fall apart now, id got so far and I had to be strong for my mum so I grit my teeth and off I went to theatre. The last thing I did was look the anaesthetist in the eyes and I said to him please I'm begging you don’t let me die.

To be continued....