Monday, 10 February 2014

6 month

Today 6 months ago I received my second double lung transplant. My gratitude to both of my donors is un explainable.


I am so sorry for the family's loss, I hope that in there hearts they can find some peace from such a huge grief. I know that grief doesn't fade or lessen but I hope that maybe through this donation they can find some comfort. With every breath I am thankful for this gift, the gift of life that both my donors have given me. I live every second with the purpose to live it to the full.

For now that is all I can say, I'm planning to write to my second donors family soon.





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Thursday, 23 January 2014

Clinic = amazing


Today I had clinic at harefield, I'm 5 months and 13 days post second double lung transplant. Me and stu turned up bright and early and got to spend most of the day with my friend Emily assin, her baby Sophia and sister Abbey. Emily and Sophia visited regularly when I was in rejection and Sophia would cuddle up with me while Emily made sure I was fed, watered, pain free and calm. So as you can tell already these visits were very special to me. Emily is 7 years post transplant and had her baby through surrogacy. Sophia is 8 months now.




Me and Emily.


Me and baby Sophia!

Clinic started with blood, an achievement in its self, my veins are now accessible and bleeding well after a well earned break. Yep 4 1/2 months free of un planned hospital admissions, iv only been in for a couple of days for planned bronchs! This feels amazing to me!

Then lung function, my fvc = total capacity = 88% and my fev1 = amount I can blow out in the first second showing how well your lungs are working = 96% so I can blow out 96% of 88% in the first second = 100% amazing!

I them had a 6 month exercise test, walking for 6 minutes I covered 570meters the most my physio had personally ever seen! Which again is amazing!

Also over the last month or so my blood sugars have been playing up first my insulin need went up dramatically, I tried incredibly hard to tackle this, which resulted in a fair few hypos and now after going back to the gym and trying to cut down my carbohydrate intake iv been off insulin for two days and still managed to have a hypo. Obviously a hypo isn't good but it's really something that I'm off insulin I now just have to get the right amount of carbs in to keep my blood sugar stable. So that's pretty.......amazing.

The only slight issue is my white cell count is to low and so are my neutrophils. I have stopped a medication and will have to keep an eye.

I'm really enjoying life and feeling like things are going in the right direction. I'm so happy and thankful it's positively sickly ;-) I'm now on my agents website and waiting for the work to come in, which will hopefully result in being able to leave my job at next and focus full time on public speaking, tv presenting and get back to teaching pole (once my garage is converted in to a studio).

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Monday, 13 January 2014

My house

Well I thought I'de post pictures of my home from when we got.













12ft fern trees being chopped down

















































Spare room no1






Dum spiro spero = while I breathe I hope







We have completely redecorated the house, the bedrooms, living room and hall are nearly complete now. Next we plan on converting the garage into a pole and hoop studio, re tile the bathroom and eventually get a new kitchen.

I'm so happy in our home, being able to make it mine from top to bottom is a something iv wanted to do for a long time.



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Thursday, 9 January 2014

Getting signed with an agent

So approximately a year ago I decided I would like to get into tv presenting. Something that probably sounded very far fetched at the time. I even questioned myself. Was it asking to much to have all I have and wish for the dream career? Would it be simply to unobtainable with my health constraints! It's certainly a hard career to get into anyway let alone after having a double lung transplant, cystic fibrosis, diebeties, osteopenia and juvenile chorionic arthritis. These were all my thoughts before I had faced chronic rejection and had a second double lung transplant.

I did a piece with itv west-country which I presented myself, then shortly after my health started to decline.

With my second transplant my confidence was knocked and all idea of tv presenting seemed impossible. The on dec 30th 2013 myself and Katie gammon appeared on itv daybreak http://youtu.be/MUFAZMawqwk and with that the presenting dream was reignited and conversation in the green room led to what I hope will be my big chance! I was put in touch with a agent.

This agent represents many of the great tv presenters and faces I aspire to. Most of all Katie piper. Katie piper was burned by acid a attack and left disfigured and gravely injured. She proves to me that even through great adversity people can still achieve careers within media, that may seem beyond our grasps. Does a world of glamour and pretty people have room for chronic illness and disease?

So I have been in contact with the agent, who I'm being signed with. Firstly to start doing more public speaking, but paid work unlike all my public speaking so far. This means things like corporate events. After time it will lead to more media appearances and progressing to TV presenting. They also work at book deals, which the past month I have been thinking a lot about writing my story down properly, not as a blog but a novel. I feel like I've hit the jackpot and I'm extremely excited to start my career.

I'm also doing some work experience with itv West Country which has been on the back burner for some time now. It's in Paignton zoo filming a baby oragutan. I'm looking for lots of opportunities like this to get experience in tv. Just shadowing tv journalism, radio and presenters as this is the only way I can get my experience up and improve on my knowledge of the media world. I hope to specialise in health presenting and journalism drawing light to other people's illnesses and helping them with there campaigning just like so many have done for me.

Im aware iv been given a unique window of opportunity, it may shut at any time, but while it's open I'm going to make the most of it, does TV and media have a place for someone like me? Will my health become an obstacle? As I have been telling everyone if I fail because I didn't try, I don't deserve it, if I try and fail then it was never ment to be.

Monday, 6 January 2014

When do you get back to work

Something iv been thinking about is when do you go back to work post transplant? Especially double lung transplant?

Well my first transplant is as keen to get back to work, but then I went Back to fitness pole dancing 3 months post transplant it was at my leisure, I could choose when and how often I taught. I enjoyed it and it was enough to keep me occupied, but not stress me out and over work. I think they were both important because I was still recovering mentally and physically after the trauma of ecmo and transplant. I'm happy I did that.

This time I was forced back to work as I wasn't entitled to incapacity/esa benefit and with being homeless because our rented house was full of mould (not good for lung transplant, especially newly transplanted lungs) we had to put our dream, buying a house, into fast forward. Living with my nan and then in my mums annex when she was able to move into her house as she had just bought and was renovating. Therefore I had to go back to work to be able to afford rent and bills. So exactly 3 months post this transplant, despite being heavily depressed and anxious which I was seeing the phycologist for, I went back to work.

Let me explain a little about my mind set at the time, I was anxious because as you may know I'm still at high risk of chronic rejection, I was trying to get over another dance with death, saying goodbye to my family and friends, grieving for my donor whilst feeling forever grateful to them and dealing with the confusion that I had said goodbye to the lungs that had saved my life although my connection with my first donor is always in my heart. I didn't know if I'd recover or how well I'de recover. My doctor suggested I didn't go back to work yet for medical and mental recovery, feeling maybe. The last two years had caught up with me.

I didn't want to go back, getting out of bed on some days was hard, I was still extremely physically tired and having various other recovering issues i went back and It was hard at first I'm not going to lie. Sometimes I wish I had had 6 months to recover but being back at work gave my Mind other things to think about and then buying our home and being busy with that to, there wasn't time to think and that was just what I needed.

So I guess when people ask me, when should I return to work? It's different for everyone but most important thing is when is right for you and in my opinion whether you go back to work or not having something to keep your mind from Everything can be really good, but remember all our thoughts and fears have to be dealt with in the end. The phycologist gave me a specific time and day I could think about it all deal with as much of it then and then lock it away till the next week so I could function as a human being and be happy.

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Thursday, 2 January 2014

A years review

Here's an article I wrote for the express and echo.

http://www.exeterexpressandecho.co.uk/Kirsite-Tancock-year-review/story-20383633-detail/story.html

AT THE start of this year, I would never have thought it would turn out the way it did.

I set aside my goals for the year. Put together 10 charity hospital packs to go to chronically ill people, buy a house and concentrate on my career and what I wanted to do now I had settled in to life with new lungs. I was working part time at Next, teaching fitness pole dancing and in the best shape of my life.

But things didn’t go to plan, my life did a 360 and I was back at square one.

After a belated honeymoon, I came back to England knowing my health was declining. I was admitted to hospital and diagnosed with chronic rejection.

Nothing could have prepared me for the fight I would have to face and the pain I would endure.

Back on oxygen and non invasive ventilators, I knew time was running out quickly.

By the end of July I was told my only option, a second double lung transplant, was not a possibility. Around me my world was falling apart and I tried to act dignified in the face of my death, knowing my family would be the ones left with the pain of it in the end.

I grieved for the dreams I would never live – my house, my career – but asked my mum and husband Stuart to finish one of my goals for me, the hospital packs, while I tried to do as much as I could in and out of my exhausted haze.

In the corridors of the hospital conversations were being had, phone calls made – my team still working very hard to give me another chance.

The next day I was told I would go back on the list but with little time left and high antibodies the chances seemed impossible. The following day they were proved otherwise – I had a set of lungs. I went down to surgery the next day and received my second double lung transplant.

I could never have imagined these events at the beginning of the year, but even though my life took an unexpected turn still my dreams and goals are coming true.

Recovering well, I bought my first house with my husband Stu, we have renovated and decorated and now have a home; a place to live, love and to enjoy our lives together.

I received an award from the Express and Echo for hero of the year showing me that my campaigning is being recognised and hopefully making a difference. I finished the hospital packs and they were sent out to 10 deserving people.

I was able to give them a small piece of happiness in their dark times and I’m truly humbled that I could do that.

One of them was a great friend and fellow advocate for the charity I work for, he had supported me through my rejection as he was also in rejection.

Sadly, he passed away before he received the pack. In my life this is a common occurrence, saying goodbye to friends too young to die, who have suffered greatly in their lives.

So although my life continues and I am truly blessed, this year has shown me that my campaigning is still vitally important as although I was lucky still my friends are dying around me.

I look forward into the new year, hoping 2014 may bring a dramatic difference to people waiting on the transplant list. I’m starting to make new goals and hoping that 2014 will be the year I can make my way into a career that fulfils my ambition and lust for life.

All thanks to a stranger I will never know, a person I can never thank. But I send my thanks up to heaven for them and for my first donor.



Read more: http://www.exeterexpressandecho.co.uk/Kirsite-Tancock-year-review/story-20383633-detail/story.html#ixzz2pHK3cl9m

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Friday, 20 December 2013

Hospital packs and a update

Iv already written this blog so annoyed it's not here anymore!


The hospital packs I made were sent out last Friday. Iv had lots of feed back from the recipients so here's a few picks and comments from the winners.



























The above pics are from Robyn Toseland here's what she said about he packs.

Today the postman delivered the most wonderful gift, & I am completely & utterly overwhelmed!

The lovely Kirstie Tancock has cystic fibrosis, & recently had her second double lung transplant. She is absolutely amazing, & even though she is still recovering from her most recent lung transplant - she continues to do all that she can to put a smile on the faces of others suffering chronic illnesses.

Whilst I was recently in hospital, Kirstie asked people to nominate those who may benefit from a 'hospital survival pack', which she has spent months putting together with help from local businesses. Little did I know that the lovely Angie Bruns, nominated me for one!

At the end of last month, I was discharged after 17 days in hospital, & came home to find a message from Kirstie to say that I had been nominated for a survival pack, & that I had won one!

I was so shocked & couldn't believe it - & didn't actually believe it until it arrived today! I'm completely overwhelmed & feel so incredibly lucky! I opened the box with tear filled eyes! I literally can't believe that someone felt I was worthy of such a wonderful gift! I really don't feel that I deserve it, but I am truly forever grateful! I have the biggest smile on my face today, & can't stop looking at my wonderful goodies! I'm currently wrapped in my gorgeously pink & fluffy blanket, & am absolutely loving every single thing! Even better, is that there are loads of pink things - which is totally amazing! There's lots of chocolate too, which always makes everything better!

I find it really hard to understand why someone thinks I'm worthy of something so lovely - something which will provide a little light, during the darkness on super poorly days! I can never understand why people sometimes say that I'm "brave", "amazing" an "inspiration", because in all honestly, I feel that I haven't handled my health issues in a way that I should have - there are times where I just didn't know what to do with myself, or how to move forward. Crying into my pillow, thinking that it's all so unfair! I have my dark days, & sometimes wonder "why me?", but then I think, why not me!? I'm not anyone special, & my poorliness can't be helped. It will be, what it will be! It would be so easy to be angry with my body, but I actually think it's pretty incredible for getting me through two life-threatening events - a massive bilateral pulmonary embolism with substantial right heart impairment in 2008, & then in 2011, a retroperitoneal haemorrhage in which I lost six pints of blood. It is unfortunate that I continue to suffer the consequences following the damage that the blood clots did to my body & my heart - but I'm still counting my blessings! It's times like this that I realise how lucky I am, & how truly privileged I am to have so many wonderful people in my life! Feeling very special right now - I'm so grateful to you, Angie, for nominating me! I really do believe that "only in the darkness, can you see the stars!"

I literally can't thank you enough, Kirstie. Your kindness, compassion & determination to help others, is completely inspiring! I'm so overwhelmed & truly touched that you felt I was worthy of something so wonderful! A million pink thank you's to you, & to everyone that helped you put the amazing 'hospital survival pack' together. You've made me the happiest girlie! Your amazing survival packs will totally make poorly days a little happier! I'm now ready for anything that my health may throw at me, & can inject a little pink into every hospital stay! During my recent hospital admission, the nurses called me "pinky" & "pink princess", so everything in the pack lives up to my hospital nickname perfectly!




This is Gemma fearing with all her goodies.

Sadly one of the recipients didn't receive there pack. My friend Gerard who helped me thro chronic rejection and radiation passed away. He was a great friend and a fellow advocate at live life then give life. I couldn't help hi the way he helped me and I hoped the pack would help make him more comfortable in his last few weeks but it wasn't ment to be. I'm thinking of his family at this time and hoping he is breathing easy.


These packs have given some very ill people a small bit of happiness and I'm humbled that I could give that to them. The message of these packs is not only to make them feel happier in hospital, to bring them some luxuries and comfort. It was to let them know that in there darkest moment people are sending them love, thinking of them and hoping they get better. To let them know they are not alone.


I hope to do these packs again next year towards the end of the year. £1100 was raised for these packs, thank you to those amazing people who donated money and others who bought and sent items for them. Without you this wouldn't have been possible and I know that some of those people donated when I was extremely ill and I can tell you it kept me occupied in that time and made me happy knowing I was helping others. So from the bottom of my heart and from all those who received a pack thank you.

A little update on myself, I'm back at work in the admin department and doing over time on the shop floor. It was hard at first but iv settled in and feel happy now although at first I felt overwhelmed and not ready. Most evenings me and Stuart have been decorating our new house that we bought! My dream come true. We have ripped out carpets, painted and worked hard and now our house is our home. I feel so comfortable here, happy and relaxed. It's like it was ment to be my home. Were still doing stuff but have now moved in. It should be ready for Christmas. Here's a picture of the living room.





Also in November I won pride of Exeter hero of the year award here's a video of what winning ment to me.

http://www.exeterexpressandecho.co.uk/VIDEO-winning-means-Pride-Exeter-award-winners/story-20086591-detail/story.html





And finally a few photos I had done for some modelling back in October
































Oh and a artical in the daily mail and daily star on me and Katie gammon.

http://www.dailymail.co.uk/health/article-2525174/Best-friends-dying-lung-disease-receive-life-saving-transplants-DAY.html


I will be blogging again soon x
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