Kirstie: My New Lungs Documentary

Following on from love on the transplant list here's a documentary by gloustershire universitys Charlotte Miller Kirstie: My New Lungs  Please share and help spread awareness for Cyctic fibrosis and Organ Donation.

I really like this doc, I feel it shows me honestly. I hope you like it to.

The world is a little less sparkly - Emily Thackeray

The first time I met Emily was when her smiley face looked round my hospital room door. I was still struggling to do anything for myself and feeling like I would never gain full independence back. I croaked at her 'you never told me it was this hard' and with that knowing look shes said 'I know' the look ment more then anything to me it ment that someone in this whole place understood just how hard it was and suddenly I felt like maybe I could get through this. Emily had a very magical feeling about her, a understanding and a way to reach you when no one else could. She didn't enter my room because she had a cold and didn't want to give it to me but from the door It was like she was hugging my heart and instantly soothing my troubled soul.

From then on Emily and I became great friends. Although Emily had been through transplant and all the horrendous things that came with it she was just normal in a very extraordinary way. She was like me very chatty and we could talk about the most deepest things to the most girly, pink and sparkly things. We often wowed each other with our blondnes and constantly argued who was more of a drama queen in our black sense of humour to laugh over our health issues.

In true style Emily was there every week often more than once bringing sparkle back to my hospital room through out my chronic rejection. She would bring Sophia her little girl who had been born through surrogacy at only a few months old to cradle in my arms next to me on the bed, while she badgered me about what I'd eaten. She was a true mummy in every sense of the word, taken on the temporary role to mother me when I needed it. We talked about my decline and about maybe having a second transplant. She asked me how I felt if I stabilised where I was and was to well for transplant but to ill to live my life as I wanted. I said I'd be ok with that. The next week I could tell Em thought I was now very ill and in need of that second transplant. See Em being there was the most unselfish thing ever because she had chronic rejection to only she was stable at the time, but every time she saw my face it was a reminder that she might be going through the same very soon. But she continued to come. I even rang her to say my goodbyes when it seemed all else had failed. I can't remember the conversation Iv blocked it out because they were All to painful. When I got my second transplant she was still there making sure I recovered.

I text her a few weeks later to say thank you for being such a rock and that I loved her for being so amazing.

When Emily was there I knew she had rejection but I couldn't imagine her being ill like me, in denile I told myself she would be fine. She wasn't. Em started radiation therapy, but she did stabalise. Thats when she caught pneumonia i knew she was bad. I went and spent a whole day with her and sat and pampered her. I rubbed her feet as she feel asleep and I let her sleep. She needed it. Later I painted her face as a violinist played ave Maria and she closed her eyes taking in the music and relaxing. We filled our bellys that night with curry and I knew that it might be the last time I saw her but I refused to believe she would ever leave us. We talked of what was to come, that she knew she had a fight on her hands and she knew she would give it her all for Sophia. No questions about that she gave it everything.

Things did get better from there but it wasn't long till she was rushed back in and I hung on to the end of the phone while she text me telling me she was scared. She even managed a text whilst on ecmo. I told her I knew she could do it and I wished I was wish her to hold her hand. She text me the last message I would get from her that it was mega extensive but she would give it her all. She hung on until a new set of lungs came and she fought many complications but there were just to many. She passed away on the 28th December. My heart feels heavy and I ache to speak to my friend, there were things that only em knows and I was holding on to tell her when she was awake. Now I can't. My soul feels so sad that my friend is gone and it hurts to know Sophia will not see her again. Her family will keep Emily's memory alive for Sophia and I vow to keep her memory alive in live life give life the charity Emily co- founded and I am now a trustee for. At the moment I am on IVs and awaiting admission to Harefield I know being there will be extremly hard as It was the last place I saw her. All I can say for now is I am grateful to learn so much from my dear friend, she reminded me of who I am and to always stay true to that. She reminded me to always stay kind, to live life and to keep smiling. I have so many other things she taught me and cannot be more grateful for my extraordinary friend.










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Transplant troopers

So I have been very busy here's one of the projects iv been really busy with Transplant troopers calendar a vintage calendar featuring transplant recipients and those still waiting for transplant.

I'm one of the four girls organising the calendar, on the team is Victoria Glenn, Charlotte Davies and rachel Prosser.

Here is a sneaky peak of my month, which we have released. The final one is different form this and even more exciting so you will have to buy the calendar.





It's released in August. Our website is www.transplanttroopers.co.uk and our Facebook group https://www.facebook.com/transplanttroopers?ref=hl

I would like to give credit to

Matt Austin - photographer

Make up - kylie bosense

Hair - Jessica Littlewood

Venue - barnfield theatre

This photograph will be featuring in Devon life on the 13th march

I will be updating my blog in the next few days on a few other things iv been working on including, two more magazine articals, a photoshoot, my website, toastmasters and my new training schedule!



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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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Hospital survival packs, nominations here

A while back now I told you of my latest charity endeavour. Hospital survival packs. They are now ready to go out and I'm ready for nominations.

Firstly the idea of these packs is to brighten the dark boring day in hospital, to relax and pamper you when your not feeling your best.

So what do they include? Here's pictures of the women's and mens pack there will be 10 I'm all to give away.




The women's pack;
Cushion
Fleece blanket
Sleeping eye mask
Bomb cosmetics gift pack including- Love Soaked Dreams Soap Slice,
Crazy After Dark Bath Blaster, Hello Ducky Bath Creamer, Foam Alone Bath Blaster, Herbal High Body Lotion
A travel wash bag
Johnson's face wipes
Medicated lip balm
Dead Sea face mask
Court worlds lavender pillow most
Relaxing massage oil
2x batiste dry shampoo
3x mini tooth pastes
Tooth brush
Paint by numbers
Sketch pad
Drawing pencils
Crayola colouring pens and pencils
Note book
2x mosaic coaster kit
2x mini cross stitch
Decorate your own mug
Creat your own sock teddy
Mini game
Heroes chocolate collection
Lindt desert chocolate collection
Haribo super in
Haribo tang tastings
Amelia's chocolate
Chocolate coins
Walkers shortbreads




The mens pack
Cushion
Fleece blanket
Sleeping eye mask
Clinic mens skin supplies- shaving gel, scruff ing lotion, gel lotion, anti fatigue cooling eye gel, face scrub, post shave healer, wash bag
Johnson's face wipes
Medicated lip balm
Cotswolds lavender pillow most
Relaxing massage oil
3x mini tooth pastes
Tooth brush
Paint by numbers
Scrap foil
Airfix
Sketch pad
Drawing pencils
Crayola colouring pens and pencils
Note book
Decorate your own mug
Creat your own sock teddy
Mini game
Heroes chocolate collection
Lindt desert chocolate collection
Haribo super in
Haribo tang tastings
Amelia's chocolate
Chololate coins
Walkers shortbreads


Not all the items are shown in these pictures but most are.

So secondly nomination rules. If you think you or a loved one would like one of these packs then you can nominate yourself or them by commenting on this blog or private emailing me on kirstietancock@icloud.com I could like you to include your full name, your age (must be 17+) your illness/condition which causes you to spend a lot of time in hospital and if you could tell me a bit about yourself and your condition. Also please leave a email address so I can contact you if you have won.

You can have any condition/illness this is not specific for cf or transplant patients, the only stipulation Is that you spend a lot of time in hospital, these packs are created for people who are having a long admission or in and out of hospital. perhaps a rehabilitation from an accident or a life long condition.

Please share this blog, the more nominations I get the better so I can find somebody who truly needs a smile put on the face. The deadline for nominations is the 1st of December as I hope them to go out before Christmas.

Best wishes and thank you to all those who donates to this project, I'm so proud of it and looking forward to the smiles it will create.


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Here we go again!!!!(Stu's update)

Ok this is unfortunately not Kirstie sending you this message but her wonderful husband Stu. Kirstie has asked me to pass on what happened today so you guys are up to date.

Well I'll start from Friday morning as Kirstie has already covered Wednesday and Thursday so mine should be a happier blog with less tears ( except for my dad.)
Started off as a normal day really nothing to strange from the last few days wake up go pee, drink, talk, watch TV and play on iPads and phones.
Visitors of the day were me(Stu) Kirstie's mum, Chris,Caz,Luke and Logan (Kirstie's brother and his little family) and also Lee (Kirstie's older brother).

20:40fri
After that not alot when everyone left me and Kirstie just chilled out on her bed watching TV, when we had a knock on the door to which a face appeared. I hadn't seen this face for two years so just thought he was working tonight and he just wanted to pop in and say hello. I didn't even registrar that it was Rob ( TRANSPLANT CO-ORDINATOR) so I just said "hello" he must of thought "twat". Which I was, he then went on and said its very early but we may have some lungs for you. I got up and started walking around the room in complete shock looking into my wife's eyes and knowing that we were both thinking ' already! That's crazy we only sorted this yesterday and now we are here' all I wanted to do was hug the guy as all he does is bring me good news ( he was the one who said it was ago last time ) be went over it was very very early and there are still tests and obstacles to get through first.

Once Rob left we just looked and said ' ok let's do this' we took the phones out and called the parents we decided it was far to soon to let everyone know as we were so far off. Kirstie then had to go on bi-pap as breathing became difficult because of the situation and she was struggling her mum came over later in the night as she couldn't sleep and waited with us for any updates on what's happening she was worried about Kirstie as she was visibly struggling and in the early hours we had to get more pain relief so she could get some sleep.

7:00sat
Rob came back and said everything was looking good even our biggest worry which was the anti-bodies, remember Kirstie's were at 80% which really put the odds against her. There was just the final checks and it would be all go. More phone calls to family letting a few more people know as we were getting close.

8:30sat
Ok it's ago 'your going down at 9:15' this was it phones out iPads going Kirstie wanted people to know she couldn't keep it bottled up any longer it was happening and we didn't have long. Kirstie got worse during this time her breathing was awful and it was defiantly time to do this. I guess for her this was her first time waiting going through the stages and waiting to go down as last time she was on ECMO and didn't have a clue. I was so happy for her this could give us more time together to complete her goals and fulfil her dreams.

9:15sat
We start the walk down to theatre we get there take a few photos say good luck give Kirstie a kiss then let them take her through.

That's it my mind now thinks about her previous donor and there family and the two years they gave to Kirstie and what she did in that time you all know so I won't go into detail, Im just praying that they know what Kirstie did and that they got Kirstie here, she really did do the donor proud she was non-stop in her goal to get people to be organ donors enjoyed life to the full and finally she had a bond with them one that I know played on her mind. She didnt want to let these lungs go they gave her so much she had so much respect for what they gave her.

I was also thinking about the current donor praying that they didn't have to suffer and thinking about the pain there family must be in I really have no idea how they are dealing with such a tragedy. I was in pieces after Wednesday and I still had Kirstie in my arms for a few more weeks. I'm so sorry for their loss and all I can do is promise you Kirstie will give these lungs the same respect and love she gave to the last. And thank you everyday for the great gift that they have given, we will also never forgot the last ones also thanking them everyday as without them she would quite simply not be here. Thankyou

22:30

So here I am now putting all this down after spending 10mins with Kirstie this evening, she was sedated and will not be woken until tomorrow and we have been told the op went well.
it was a long day of waiting checking the time and trying to answer messages texts and calls that were coming through. I didn't realise how many people follow her and the amount of messages she gets daily I know she try's to talk to everyone as she well loves to talk to people and hear there journeys and help people through there tough times whether it be patients going through tough times or family's watching loved ones struggle she always does what she can to help and she always gets upset when she can't.
I have so much respect for what she does and how she battles she has honestly changed my life for the better. It makes you realise the important things in life and makes you wonder what others do and some people's lack of respect for life.

So that's it all up to date any questions just ask and I will try to answer until Kirstie's back up and running then she can have this back not really my thing but I have been told I have to do this or I would get a slap. Trust me she isn't afraid to hit me given the chance.

Thankyou again to the donors and their family's as without I wouldn't be doing this right now. I will never go a day without thinking about you and thanking you everyday for your gift not just to Kirstie but to me and the rest of Kirstie's family and friends we are all very very grateful
Xxxxxxx

Stu



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Location:Harefield

'We can't relist you'

So yesterday me, stu and my mum sat while my dr, nonnie told us that there was no way I was going to be put on the transplant list and that they were arranging palliative care. I had only a few weeks left to live. We were devastated, my mum and stu were in tears and I was just shocked. This was based on my reflux test still coming back positive. We rung loved ones in tears and watched as our world fell to pieces.

Today we had another test, this time the team came and told us that the test had come back ok and although i still had reflux, they were willing to put me back on the list and would be able to do a emergency op afterwards to sort out any reflux but I would have to be peg fed to stop any reflux damaging my new lungs. I still only have a few weeks window for transplant as I'm so ill and unfortunately I have extremely high anti bodies of 80% meaning the likely hood in getting a match is very slim and there is no way they can bridge me on ecmo this time. So once we miss the boat it is truly missed and there's no more tricks up our sleeves.

This means palliative care is still very important but we have a chance, a small window of hope. They repeatedly said if anyone can do it I can! Please keep praying for me and hoping that this small window is all we need. We have had some desperate and devastating times in the last 24hrs. I am now using bipap when needed and unable to walk anywhere. Just to visualise how far we are into the rabbit hole already.


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Sleepy girl

Radiation is exhausting! I feel very tired most if the time, I always thought it would be quit easy, I guess those who go through radiation are usually people with cancer and they also go through chemo so they don't really mention how bad radiation is because comparative to chemo it's a breeze to them. I have to say I hold my hat up to anyone who breezes through radiation and wish everyone an easy ride! To me it's exhausted me beyond belief and I am one tired sleepy girl. Part of my wonders whether I choose to sleep because when I am sleeping life's a little easier at the moment, my head doesn't pound, my body doesn't ache, the sickness is gone, my heart is calm and my breathing i can ignore and dream to a time when things were simpler. I guess I wonder whether I'm a little depressed, or whether it's just the treatment? I guess time will tell.

I'm missing my home now, but I know when I get back home things will be hard, it's a place that I realise more then anywhere that my lungs are so badly scarred now, because things are so much harder around your own home, there's stairs to climb, things to be done and you tend to move around alot more and then the breathlessness kicks in.

I try to not feel sorry for myself, but I am human, I can't help but sometimes think why me, why stu? I feel for him, my mum and everyone else around me. I feel like I'm a constant drain on them, in need of so much help and time. Last weekend my nan came and looked after me, that's never right, my nan is a strong amazing lady but she is getting old and deserves to be looked after now, I should be helping her. Instead all her time and effort is spent worrying about me and doing things to help me, my mum and stu.

I'm sorry to sound so down, I'm not really. I'm smiling, I'm still happy and I'm still loving life, but there are these moments, these rare moments when life is overwhelming and I'm filled with dread. I guess my blog could give you a clouded view of me sometimes, I write here when those moments come but mostly I still feel blessed and lucky. I'm lucky my family love me so much that there here to do so much for me and I guess I have to remember that must be a reflection on me some how, they must love me this much because I am a good person and a fun person. I just hope I can carry on being enough of a good, fun, loving person that they want to be round me forever and carry on making my life so amazing.


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Radiation therapy

So I went on weekend leave and now I'm back in hospital. I have started radiation therapy for chronic rejection. Yesterday I had a consultation with my dr and it was time to ask some questions, would I gain any lung function back? Unfortunately they don't think I will, I was extremely sad at this and although I'm not sure what my lung function is due to my collapsed lung know it was 36% when I came in and I have got significantly worse. I am very breathless on any exercise, walking around the hospital is ok as it's flat but any other kind of surface change, hill or stairs I'm gasping for breath. I use 02 when walking and I'm trying to keep myself fit and strong by doing squats, push ups, weights and lots of yoga stretches. It's hard work but I won't be beaten by this and the only way I can think to over come it is to battle through and remain strong and determined as ever.

My consultant said that what we were doing was trying to crack a egg with a hammer as it all we've got. I have to say it is extremely frustrating, my reply was 'but I did everything I could, I did everything right' you wonder why you? What did you do wrong? But the answer is nothing, it's one of those things and sometimes
no matter how hard you try luck just isn't on your side? It's a hard concept to get your head round because in so many ways I still feel like the luckiest girl in the world. Some where its like good luck and bad luck are fighting to get to me, one day one wins and I receive the greatest gift on earth, life, the next bad luck prevailed and gave me chronic rejection? I just don't know, it's the strange thoughts in my head that try to make sense out of life.

So once again, it's time to give up work and to concentrate on stabilising, hopefully once I'm stable I can go back or we will look at other options. I have received alot of support and I thank you all. Hoping my next blog will be some better news.

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Kate Hennessy - it's time we talked

When I met Kate Hennessy in September after my bike ride, I knew we shared a bond, knew things no one else knew. Not only did we both have cf, but we had both been on ecmo and received life saving transplants. At that point no one knew the rough path Kate still had ahead of her and I never knew she would become such a good friend. Kate's path post transplant was very traumatic, infections, surgery and countless days in hospital.
She finally started to get her life back, her smile came back and we all thought that her rough start was coming to an end. Then an infection struck her down within 24 hours she was back on 10 litres of 02 unable to tolerate a bipap and talking invasive ventilation.

I can't tell you how scared I was Tuesday morning as Kate's mum told me she wasn't likely to make the day, that she was being made comfortable and my friend who had already been through so much was going through it all again. I cried and cried that morning, knowing by the time I finished my shift, Kate would probably already be gone. I felt so helpless and scared.

Only Kate didn't die, she once again fought the odds and battled through. On Thursday I went up to clinic and walking into Kate's room, she was already off oxygen! I held her tight and cried so grateful to have her still here and recovering.

Kate's had a hard time post transplant, but I thank her donor everyday, their the reason she is still here, the reason I got to meet someone so amazing and so special. Not only did I meet Kate but her mum to and they are two of the most amazing people!

So I would like you to watch this video on Kate spreading awareness of organ donation and how important it is.

Kate Hennessy - it's time we talked

Please share this video and get people talking about organ donation.



Here is a link to there event Hen fest 2013 please feel free to donate.

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Elf award and rotary conference talk

So the other day I recieved a certificate through the post




It was a award from ELF, European lung foundation and hears the letter that went with it




'The annual elf award is presented to a group, or individual, who have made an exceptional contribution to lung health. By sharing your story as a nominated lung champion, you have helped to encourage thousands of people across the world to enjoy the benefits of exercise, despite their lung condition'
It was a great honour to be given this, I was nominated by live life then give life to be a lung champion due to all the fitness activities I do including my cycle tat I was training for and getting back to work teaching fitness pole dancing. I was chosen as a champion and featured on there site, when the award came through the post I was really surprised. It's nice to know that perhaps I'm making a difference, changing people's lives for the better. For me this award just encourages me to continue
😃
I'm also working on some other projects with elf on transplant and organ donation.
Hers the link to my feature on the site
http://www.wsd2012.european-lung-foundation.org/17529-kirstie-tancock.htm
Also on Sunday I drove down to Plymouth for the welsh rotary conference annual meeting I was invited to speak at. I had my usual speech prepared, read over it accounting my journey through transplant, but this time I added something. See when I appeared on John grovia show for bbc radio Devon about my bike ride, John who I had meet before when I was featured On The show side swiped me, infront of a live audience and on radio he asked me to read my letter I had wrote to stu for if I didn't make it. It was a emotional reading reducing me to tears. John apologised as he thought he might have gone to far, but if I was a presenter interviewing myself I would say he went just far enough. The room was howling with tears and the response from or was amazing.
So I read the letter in the appropriate part of accounting my journey, I cryed, but maintaining my composure, you know the blurry eyes and sniffling nose but you carry on. I only read a small part, as I think that is powerful enough and self preservation. It was all I could manage. But it had the affect I needed.
I've included it in a blog before but if you haven't seen it here it is
To My Dear Stuart,
As I sit here, I'm in hospital it’s the week before we go to harefield for our 3day appointment. I say ours, because it will determine how our lives will be lived from now. We know my health is at a stage where I have a 50% chance of surviving. In writing this in case things didn’t go to plan sweetie. I'm not here. This doesn’t make me sad for me, I'm sad for you because I love you and worry how you will cope now. I'm not going to tell you how to grieve, this is your part to do, You can grieve for me as you like, Iv got to say though I'm glad I'm not the one grieving. I couldn’t cope if it were you leaving me. I hope in time it will become easier, that you will always have a place in your heart for me but maybe one day you will have a space for someone else to? I hope you are happy in life and that you live it to the full for me, take chances, risks, do all the things you thought you couldn’t, go on holidays, spend time with friends and family. I know my nan will probably look after kia, because of your work, but if that changes please look after our little girl. She loves her daddy and would love to live with you if she can. If not then make sure you still see her, she would be very sad if she thought you didn’t love her anymore.
Just know I never wanted to leave you, I love you to the end of the earth, you have been my rock so far and I don’t doubt you were right up until the end. I want you to know being with you has been the happiest days of my life, I wish we could have got to the other side of transplant and enjoyed that time together to but I'm just glad you were in my life for as long as you have been.
I don’t know if this letter helps in anyway.
Love now and forever,
Kirstie
While I was there there a man who's name I cannot remember from the BMA was there talking about transplant statistics and the opt out system which Wales are changing to. All I'm going to say on opt out and opt in is there seem to be many pros and cons I'm not sure opt out would be affective for many reasons. So for now I'm going to sit on the fence.
The rotary club were very hospitable, I enjoyed a three course meal and was re enbursed for my travel cost on arrival. Usually for these things there's a very lengthy process. At the end I was represented with a gift.
The view from the hotel.




My gift, love my little welsh dragon.




How wonderful is this, the slate circles are coasters. While I was there I was made to feel like part of a big family and I'm really great full to them for being such amazing hosts, so conference organisers this is how you should treat you guest speaker in the future :-)
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