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!!