Saturday, 29 December 2012

Oh what a lovely Christmas and here's to a happy hopeful new year

My Christmas, well what can I say. I started work at next over Christmas and it has been great, hard, crazed but great. I loved the buzz of being busy and not having time to over think silly things. I worked hard and it was repaid with A perm position of up to 20hr a week. I feel less stressed about people not turning up to pole lessons already and I'm enjoying teaching.

My Christmas Day, well it was everything that to me Christmas is meant to be, that life is meant to be about. Family. I spent the day with my nan, grandad, stu, mum and her partner ash. I had a roaring laugh, helped mum out with the dinner, played games and felt the joy of giving them all presents which I had thought long an chard about. The joy of there faces lightning up. That to me is the best, but I was of course royally spoilt and I am very grateful, but my Christmas would have just been as good just for being with my family.

I can't tell you when the last time I really had such a nice Christmas, it really just felt special.

Which brings me on to a special family and a special person who will always have a place in my heart, soul and mind. My donor and there family. I hope my donor had a splendid Christmas wherever they are up above, shining on us all. I also hope my donors family were able to have a great Christmas, knowing there loved one isn't far. I once again cannot say how grateful I am my donor signed the register and there family also choose this decision with out them I would not have seen this or the last Christmas and all I can do is wish them love peace and happiness with every fibre of my being.

I now look toward the future, a future of opportunity, fun and not wasting one second. I have so many plans for my life and I am now going to take hold and live them. I hope to start my career in presenting in 2013, to have a proper holiday, in fact to have a few, to not forget or neglect my beautiful family and my gorgeous husband for where ever 2013 year takes me and I hope that that is far, I will be taking them with me.

I wish you all a happy new year, I wish that all your wishes and dreams come true and I wish 2013 will be the year my friend Kerry thorpe gets her call because she will not last much longer without it. Xx

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Wednesday, 19 December 2012

Harefield, fundo operation, Neil and thought for Kerry


I have been rather quiet everywhere, on Facebook, twitter and even here. I have needed some breathing space time to just be me. I have to say I think it's worked, I feel so much better inside myself. I have thought about my life inside and out. I started to think about what I actually wanted and what was stopping me, in conclusion I decided I didn't want to live this life where I'm struggling for money, bored out my brains. I came up with a ultimate career goal and smaller ones that will help me get there. I decided I love teaching pole and love pole but as a main career it's to stressful, people cancelling on you all the time, never knowing what your income is from one week to another, it was zapping all the fun out of it.

Thinking about what sort of lifestyle I want, what makes me happy and what I enjoy, I decided I would like to be a presenter, I think my background in media has prepared me for the highs and lows. I have contacts in this industry and thinking about all the different aspects of presenting there's not many areas I don't like. I mostly love public interest stories and journalism side. So to get to my main career goal I have lots of little goals, first being, get a part time job on top of pole to supplement my low wage, well done that, I start of Friday with a temporary contract with next in women's wear, which I'm looking forward to. Next goal, a portfolio and show real, both of these I'm organising. Then there's also contacting all my contacts which iv done and had some feed back from. I know this is going to happen over night but I know I can do it.

So other things I've been up to, Iv been up to London for Harefield check up where everything's all well, I was prescribed a drug for nerve pain that's been agony, but good to say that's all sorted. I also had a appointment at st Mary's for a operation I need, I have had bad reflux for years, before transplant and now after, so they have decided to do a fundoplication, basically wrapping the opening of my stomach with flesh from the stomach, by pulling it up and around.

This is a very common operation post transplant. It's done through key whole and is a minor op. unfortunately mine may not be so minor, it turns out that due to various stomach ops I have had micolium isleus and appendix, I may have a lot of scar tissue, they think this because of all the blockages I get that the scar tissue may be one of the reasons. If they can't do it through key whole they will make a scar from the bottom of my sternum to my belly button. A substantial scar. I was devastated to be honest, I take pride in my body and my looks, I don't think there's anything wrong with that, I have near 40 scars now, I get over them each time a new one appears but for some reason the idea of this one really upsets me. I hope that it doesn't come to this. It's strange though my transplant scar never bothered me.

While I was up there I took the time to catch up with friends and saw Neil who's doing amazingly and on the last day I said goodbye had the best smile on his face. Transplant is no easy journey but when you get to where your going its amazing.


This is a picture of the scrap book I made Neil, it's one of the hardest and best presents iv ever done for anyone, following his journey from his call to when he gets home, leaving him space to put other stuff in. There's spaces for firsts, first Christmas, golf game post transplant.

All my Christmas decs are up and I've been baking. Feeling festive.

I'de also like to leave you with one last thought, while your wishing
for those pair of jeans for Christmas, or new straighteners. My friend Kerry thorpe is wishing to make it to Christmas, she is wishing for her call to come. Without that call we don't know how long Kerry will survive, so when your making your lists for Santa please make sure you fill out the organ donor form and get all your family to, when your making your Christmas wishes, make one for Kerry. She is now suffering regular respiratory arrests, I went through many of these and I cannot express how scary they are because you are literally staring death in the face.

Stay strong Kerry we are all thinking about you xxx


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Wednesday, 28 November 2012

Tummy bug, birthday, Neil's transplant

Well I have a few little updates. Just over a week now iv suffered from a stomach bug, it has been hideous, I have such a sensitive tummy anyway that it's really messed things up in there. I had some extremely high temps, faintness, sickness, diarrhoea , extremely bad stomach pain and general aches and pains. Im so glad to say the bug itself has now cleared up but Im still really weak and suffering badly from faintness, iv been to the doctors a few times this week having bloods done and they have taken really good care of me. Each time though iv had to be laid down and my legs elevated as I was so pale and faint. I'm just trying to build up my strength, resting but trying to do a bit more each day until my body gets used to it again.

My white cell count has dropped even more due to this bug, it was already low, at the moment there keeping a close eye but any lower and I have to go into hospital and have all my medication changed to get it back up. Having your white cell count to low means I'm to immune systems suppressed and if I were to catch anything else I would be extremely vulnerable.

With being so ill I've had a lot of panic attacks, this feeling of weakness has taken me back and has scared me a lot. It's not like me to have panic attacks.

It was Stuart's birthday yesterday and we did venture out for a couple of hours but that really took it out of me for today and we came back after finding out my white cell was low as I didn't want to risk being In crowds. We had a great day chilling out together and even that's a rarity these days with Stuart's work. So we thoroughly enjoyed just being together, well I certainly did. I love my hubby very much and find myself missing him all to often with the hours he works, hopefully that will get better soon! Stu was 28 yesterday and I found a grey eyebrow a few days ago :-D he he age doesn't scare me I find it encouraging, every year he's older I am to and therefore we are a year older together.


Today I had a text message at 2am, I didn't open it till 5am when I saw it there, it was from one of my greatest and best friends Neil. A guy I call bro. He has cf and he finally got his call last night! He pushed me around when I was in a wheel chair and I tried to do the same for him after my transplant when he got sicker, he was to stubborn and walked even though he was struggling. Neil was so sick recently he was in itu and I have to say I truly thought we were going to lose him. I don't know how I would have coped with that. Neil is now in surgery, today is the first day of the rest of his life. I hope my bro just gets the chance to live his life and do all the things he wants to, something he's never really been able to do. I'm so grateful to the person who gave him that chance, who signed the register and gave the greatest gift you can give, I'm grate full to there family for what they have done in such a tragic time and wish them all the love and strength in this horrible time. Thank you for saving my brothers life. Neil still has a long road ahead, so please with him a smooth recover and that he is home by Christmas with his little brothers and sisters so he can enjoy his favourite time of the year.


Im going down to Harefield Friday with a present for another friend who's had a extremely rough time and hope to see Neil. If I'm given the all clear from infection control as I would hate to jeopardise either of there recoveries.


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Wednesday, 14 November 2012

Mulling things over.

I haven't really got the words to blog at the moment, a lot has gone on and at the same time not alot too. My mind is ticking over and I have nothing interesting to say. I don't want to leave my blog empty and people wondering where I am, so I just thought I would say I'm here, I'm thinking, contemplating, being indecisive and mulling over things. Something is not right, something has got to change in the world of Kirstie...I'm just not sure what, until I do and until my mind is clearer I may not have anything interesting or thought provoking to say.


Monday, 5 November 2012

Where did the sparkle go?

This goes back to the days before I had a blog, I have many notes like this, updates I would write On My Facebook. I wrote this before I was listed, when my life was slipping away form me, it was just before I asked to be assessed for transplant. In a bad place, desperately clinging on to a life that had already decided I did not belong.

21/12/10

When Your ill its quite easy to lose sight of everything you've become consumed in self pity, anger and most defiantly jealousy. These things slip in so quietly you dont even know there there until your a miserable bitch and you feel like a drain on those you love.

Iv lost my sparkle, Its most defently gone. I dont know when, but i miss it so. I had a brief re encounter with it the other week when stu took me out to dinner and it was great, i felt happy shiney and like people were seeing me for me instead of the sick ill person iv become.

How do i get it back? Well i really don't know, my first awnser to anyone else would be to get rid of what ever has made you lose your sparkle, but i have no escape from my situation, Im trapped in my body which is sucking all my sparkle away. What makes me so angry about my situation is i try and try to make myself better, do all my treatment, religiously. But there is no escape, they only minimise symptons slightly im still really ill and its not making me better. God damn it. Jelousy comes in watching others running around having so much fun, the snow to me has been like a weight around my chest, i cant go anywhere do andything, Im stuck. Im stuck most of the time anyway as i feel to ill to go anywhere but now im truley stuck. The jealousy is there all the time with everything, im the smallest of gestures and how people take them for granted, say walking your dog, cleaning your home. I simply cannot do these things, i do them with the upmost effort and struggle. There is my jelousy. Its so ugly, I dont wish to take things away form people, but i cannot help the jelousy creep in. Lastly self pity, I hate that most. I hate that i pity myself, i pity the situation im in that is all i can say on that one.

I need to try and bring back the positivity, the light that i felt i used to shine, I will. It will come. I just dont know how yet.

I finish this, note not wanting to sound sad, I feel positive and happy, Iv written it down, its gone from my head so i can stop dwelling and move on to making it happen.

I have to say I didn't feel like this the whole time I was listed, but there were so many shadows where I was it was easy to fall In to one and get lost. Some say the sparkle was still there, I guess it was just so hard to see In
the shadows. I certainly didn't feel like a shining light.


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Thursday, 1 November 2012

A guest blog from Mel the director of 'love on the transplant list'

This is a blog Mel the director and producer of 'love on the transplant list' wrote for the BBC which she gave me permission to use. Me and Mel got very close whilst filming, she came into our lives to film the documentary but she will remain a great friend of mine and Stuart's and our families. I'm happy to say we also attended her wedding in August so as she was such a huge part of our special day it was great to be part of hers and her husband Sams.

At Special Edition Films, we got in touch with Kirstie after seeing her blog 2ndchance@life to approach her about making the documentary for BBC Three about her experience.

As the producer, Kirstie made it very clear to me from the start that she wanted people to see what it was really like to be on the transplant waiting list.

She hoped that by showing the reality of her situation it would encourage more to sign up to the donor list.

In May 2011, when I first met her at home in East Devon, Kirstie had seriously bad, end stage lung disease where a transplant was her only chance of survival.

Kirstie was already on the transplant waiting list and had been told that she only had six months to live.

The documentary starts with Kirstie and her fiancé Stuart three weeks before their wedding day and although Kirstie was living at home at the time, she was on oxygen machines 24 hours a day to help her breathe, confined to a wheelchair and having constant IV's and pain medication.

She was barely able to stand for a couple of minutes let alone plan a wedding.

Our whole crew consisted of an assistant producer and me - during the ten weeks of filming, this amazing young couple battled everything to live their life to the full.

We followed Kirstie being hospitalised and fighting for her life two days before her wedding, even checking herself out of hospital early to make it down the aisle.

A couple of weeks after the wedding you'll see how Kirstie was still so thrilled to finally be married before the sudden shock of having to be taken by air ambulance to the transplant hospital in London, knowing that if she didn't get there right then, she would never survive the journey.

It was an extremely emotional time in this couple's life that as a filmmaker I couldn't help but be affected by.

Each time I filmed with Kirstie I was acutely aware that this could be the last time I would ever see her alive again.

Watching Stu talk about how it felt to be in a situation where the person you love is dying and there is nothing you can do to save them, is something I'll never forget.

Kirstie's husband Stuart waits for news

Filming with Kirstie and her family when they were going through such a painful and highly emotional time put me in an unusual situation but I was very privileged to be able to follow their journey and they were extremely supportive.

Her drive and determination made it much easier to talk openly about difficult issues such as death and living with illness.

Choosing the music for the film was always going to be an extremely important element for me to help add a layer of emotion and try to reflect what everyone was feeling.

Throughout filming, I was constantly listening to albums and almost creating a soundtrack in my head as I saw the events unfold in front of me.

In the edit I found that if a track made me completely re-live the moment then that was the right one to use.

I quite often wouldn't listen out for relevant lyrics but literally watched through footage with headphones permanently attached and when a track had absolutely the right feel to it I would play it back and realise that actually the lyrics added to the scene.

Some of the tracks used in the film were personal to Kirstie and Stu, in particular the Take That track which was played as Kirstie walked down the aisle and I'm Coming Home by Diddy Dirty Money feat. Skylar Grey which Stu played to Kirstie when he was finally able to take her home from the hospital.





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Tuesday, 30 October 2012

Guest blog Transplant from my best-friends perspective

I’m Julie, Kirsties best friend. She has asked me to write a bit for this blog about her transplant journey from my point of view….

22nd May 2010, I wont forget this day, I spent the day with Kirstie at the beach. I got horrifically sunburnt, so that’s one reason I wont for get it, But another is that this was the day that Kirstie and I really talked about transplant, the realistic prospect of it, the process, the outcome (good and bad) and how we both felt about it. Up until then, I knew it was a possibility, but that was it. I also thought before this talk , and I guess after it too, that transplant would be a long way off. One year later it was becoming a reality, very quickly. I was scared.

Nothing can prepare you for seeing your best friend stop doing everything they love, everything you love doing together…including managing to eat a whole rack of ribs and garlic bread EACH!! (Kirstie you know what I’m talking about!!) But it was happening. We still had fun and a laugh, messing around with hair extensions, me trying to push Kirstie around Tesco in Maud, before she got to ill to do that. I was scared to the pit of my stomach seeing Kirstie when she was really ill, hardly being able to walk to the toilet, just 3 meters from her bed. Although I never saw her at her sickest in Harefield.

One of the best thing about mine and Kirstie's friendship is we may not manage to see each other for weeks, unlike we used to a couple of years ago, but when we do it’s always the same, we chat, we laugh and it never changes. We used to talk on the phone every night for at least and hour.

I do have a regret from when Kirstie was really unwell, and it’s that I didn’t see her enough. Although I knew what was happening, and it was totally apparent when I saw her, I don’t think I wanted to admit it to myself. It did hit me one day though, I was cooking tea with my boyfriend and suddenly burst into tears… I didn’t want to lose my best friend. I am a strong believer in gut instinct, my gut instinct was telling me that I wouldn’t lose her. BUT I wasn’t there for her enough, through my own fear. If I could go back, I would change that.

I was texting Kirstie as she was airlifted to Harefield. I remember asking her what was happening, she told me not to worry. I remember reading this, I was in my car in a bit of traffic. That text comforted me for all of a couple of minutes, until my logical mind caught up with me and slapped me round the face DON’T BELIEVE HER, SHES QUITE OBVIOUSLY NOT OK!!!

That was pretty much all I heard from Kirstie for weeks. I sent her lots of texts telling her how much I loved her etc…I knew in my head what was happening but it didn’t seem real.
It was a waiting game.

keeping in touch with Kerrie, Kirstie's sister, by text, by phone, to keep up to date, this was hard. A number of times I had tears streaming down my face, not sure if Kerrie could tell or not really.

Waiting to hear what was happening, knowing what Kirstie was sedated most of the time, was so hard. 180 miles away from her, normally Kirstie would tell me how it was, she wasn’t there to do it this time. Kerrie would tell me what she knew, and what the outlook was, and how long they thought Kirstie had.

Kerrie told me about the doctors talking about ECMO, it sounded horrific, BUT… a life line, to bide some time. I didn’t know all the details, or the risks, but it was obvious there would be some. As long as it gave Kirstie more time, and a rest, which undoubtedly she needed, I tried to stay positive. All this time I kept my gut instinct in mind. Not knowing was very hard, but also maybe made it easier from my point of view. I couldn’t imagine what Stu and Kirstie's family were going through.

There were the calls that came for lungs, but they weren’t any good. I’d get a call from Kerrie to say they had lungs, then another to say they were no good. Tears. Waiting. More tears.

Then on Monday July 11th at about 7:30am, Kerrie called. They had lungs. This felt different, I carried on smiling after this phone call, even though they didn't know if it was going ahead yet. About 15 minutes later, Kerrie called back. I was waiting for the call. The feeling was amazing. WOW. I cried, with total happiness. Then I had a reality check, someone died for this to happen, I felt an immense amount of sadness.

I waited all day to hear how the op went. I work in a children's nursery so I was very busy all day, so it did help to keep my mind off it all. Kerrie let me know it all went well, there was still a long way to go, but Kirstie had done it.

The next few weeks were filled with waiting, I saw pictures Kirstie's Mum was putting up of Kirstie online. I felt of proud of her for making such an effort. I had no idea what was really involved in getting better. Me and Kirstie had sort of discussed it, but to be honest I don’t think she even really knew 100%, can anyone? So that’s why you have to stay positive, everyone says that, but you really do. Look forward, think about all the good things to come. I kept thinking about how me and Kirstie would be able to have our BBQs again, take Kia for walks, go shopping. I couldn’t wait.

A few weeks later, I was on lunch and work, my phone went, Kirstie's name flashed up. I was so excited to hear her voice, we talked for quite a while, and said as soon as she was home I would go and see her. This phone call was the best I have ever had. Hearing her voice after everything. I had tears in my eyes. So happy. Its moments like this that make you realise, like I said before, that you have to stay positive. Be honest with yourself, but be positive.
Kirstie's journey has been a very hard one, but I know that she needed everyone around her, Stu, her family, friends.

I thank Kirstie's donor and their family everyday. Through their devastating loss and sadness, they created so much good and happiness. So brave.


I will be posting my director mels blog on filming the documentry in the next few days and also write about the friendship we formed.


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Sunday, 21 October 2012

Did you know, I never used to want a transplant


Blog request from Clive Hayward 'did you ever think of say no to transplant?'

I hear a lot of CF people telling me they don't want a transplant, it's not for them, or they wouldn't have one if it came down to it. You know I actually never wanted a transplant.

I always knew that with cf you could have a transplant, I don't know how I first knew it, but it's just one of those things you grow up knowing, like I grew up knowing people with cf didn't live as long as other people. Then one day my mum told me my friend Debbie was going on the transplant list. I was only 10. I know I have written about Debbie in the past and have probably told you all similar things in a round about way, but I'm going to go into the whole decision to have a transplant a bit more.

See Debbie got her new lungs, but it was to late, she didn't make it. She was 16 & I was 10. That was my first loss to cf and it was a big one, it was in the days of cf holidays, we mixed in clinic, ran around and played together, she looked after me and I adored her. I thought she was basically the best thing since sliced bread. Well it turned out she was a whole lot more amazing than slice bread could ever fantasise about being. Losing Debbie I instantly decided I didn't want transplant, I can't really see my reasoning, transplant was a ray of hope but to me all I could see was death and false hope. I was scared of it and all it ment, I was scared of my own mortality and by some how rejecting transplant and life embracing my mortality it didn't get the better of me and I was over coming my fear of it. Little bit messed up I know.

I also knew it wasn't forever, I was a real smart kid at 10, I don't know how I even knew these things. But I knew I didn't want to go through the getting iller process and then get well to only get ill all again.

I would quite matter of a fact tell my friends that I was going to get ill and need a transplant and I wasn't going to have one, it wasn't what I wanted. Do you know I even told Stuart I was never having a transplant.

I always said that by the time I'm that sick, I would be ready to die anyway. I was very dramatic in a calm nonchalant way. My embrace of death, it doesn't seem so brave and heroic as it did back then.

Then one day my doctor brought up transplant in clinic, he said that all my lung function was transplant criteria. The tears came blurring into my eye. I can't remember it all now, Just the convosation with my mum on the way out the hospital, as I stopped 5 times to catch my breath and sit down. I told her I wasn't ready to discuss it with anyone yet and would do so when the time seemed right. I told stu and I can't remember that convocation either, it's like this boulder had hit me and everything went blurred, but suddenly my mind wasn't screaming no any more.

It was a whole year from it being brought up until I actually decided I had had enough and actually yes I desperately wanted a transplant. It was me who asked to be referred then.

What changed? It became real and suddenly my life had just started to become all i had wanted it to be, I didn't want to go out in a blaze, like I had seemed to think I would. I hadn't lived long enough to change the world, do all the things I wanted to do. I hadn't even lived yet. Suddenly embracing death wasn't brave at all, i needed to be braver and learn to fight. I think Stuart saved my life, I had lots to live for before, but he just gave me that one thing I needed to fight for. I know it sounds cheesy but I guess love made me fight that little bit more.

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Tuesday, 16 October 2012

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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Saturday, 13 October 2012

ITU and all the nitty gritty

I asked a question, what sort of blog would you like to see, here's one of the replies I hope this blog helps.
@Princess_Ellie2: @KirstieTancock bit general but how to cope after itu and being sedated for days and the after effects x

Thinking about my time in itu is very hard, it a horrible place to be, people have asked me how you cope with it especially a prolonged stay, there aren't any specific coping mechanisms but when I think about how I coped, well to be honest I'm not even sure sometimes. Itu felt like a big consuming black whole, I felt like even though I had had my transplant my life had ended and all I and left was this all consuming place, now I know many of you are sitting there and thinking that's not encouraging, or inspiring, it's terrifying but I guess when u think how I'm doing now, you realise that there is a light at the end of the tunnel.

Firstly some of the things I didn't expect, Ecmo. I didn't know what Ecmo was, I didn't know how it would feel, I didn't know what dying would be like? Ecmo, is a machine that takes your blood out re-oxygenates it, it also takes the carbon dioxide out and your blood is pumped back in. Its a heart and lung machine. To me, it was terrifying, but I want to look at why it was so terrifying, I was dying, on the verge of life and death, my lungs were bleeding constantly, there was so much blood i was suffocating on it thro my ventilator and my body swelled up to three times it's actual size, I was very sick, but at the same time, I don't imagine dying any way was going to be any less terrifying. This machine as awful as it sound was a miracle machine, it keep me alive when all other options were exhausted and I made a full recovery after it. When I was on Ecmo, I was in and out of consciousness, people have asked me if your always asleep on it, the answer is no, I know many people who were able to be fully awake, although I know that's not a pleasant experience either. I felt more piece full when I was asleep.

Tracheostomy I didn't ever think I'd have a tracki, it's a tube through you neck to your wind pipe that they can ventilate you through, it's easier to do suction through this then a Ventilator through your mouth. To do this they take the ventilator off, change the stent in the tracki and put a tube into the tracki with suction, it's a horrible sensation, I refused suction one whole day ending in a bronch which set me back, a tracki isn't pleasant but it saves going through so much more if you really need one. I couldn't talk with my tracki until I had a voicenator on it. My vocal cord were really weak and also my new lungs were still weak so I couldn't talk very well to begin with. When my tracki was taken out, I was left with a whole, yep, all the way through, it has to heal from the inside out, you have it covered with a dressing and clean it out when changing the dressing, I thought it was weird and quite cool. If your dressings not on you can't speak as the air misses you vocal cords.

Depression, I wasn't prepared to feel depressed. To feel like I couldn't do it anymore, like I had now forgotten how to go on, to live. I was so used to dying, to find the will and drive to keep going was hard. I felt despair, like I wasn't suppose to survive. Like we had gone against the will of god. I know it sounds extreme but there's no logic in itu, when you had been what I had been through, it felt like god had abandoned me. I'm not very religious, in terms of I don't follow a church, but I believe in god, I believe In Heaven, maybe not hell though. I also felt like someone had died for me, we all know that's not true my donor was unfortunately already dead, they were simply giving life after their death, in itu that isn't clear anymore. It all lead to a deep depression, I didn't want to watch tv, I didn't want to do rehab, I wasn't even sure I really wanted my transplant that I had now had. These things are all normal, there not there forever, you will see the light on the other side, life does go on after itu.

Hallucinations, I was never warned out about these, not properly. They were confusing and felt more real than the real, I have done a small blog on these on there own. But to recap, I didn't see the fluffy bunny running around the room like some, I saw the devil, god, mermaids in gel fish bowels telling me it was time to breathe as I was dropped form the sky, my family fighting and arguing. None of these were pleasant, they were distressing and scary.

The thinks that helped me, we'll they say its important to have a strong support network around you and I can't emphasise how important that is, because on those day you don't want to get up and do rehab you need your family to tell you, you have to now. When you need a human touch, you need someone's hand, not just anyone, but someone you know loves you, someone you can trust, because for me everyone around me seemed like an enemy. When you feel like you can't do it anymore, you need them to tell you you can, but also sometimes you need someone to tell you to man up and actually you don't have a choice, you were there, you had that choice now it's gone. Now it's time to live, to do your donor justice. Sometimes just sometimes, you need that Stern talking to. That's why family are so important. They fetch, carry, encourage, tell you off, rub your aching body.

you've got to keep your eye on the prize, so to speak, why are you doing this? Why did you want a transplant? maybe you didn't but have been in itu for a different reason? What will you do when you are well? what will you do with the rest of your life? And again it's hard to remember when your in itu, that's why you need your support system, your cheering squad.

Speak up, now you may not literally be able to speak, I couldn't for a while, but if something doesn't feel right you have to let them know someway, most of the time you think it's all normal and that your bugging people but things like hallucinations arn't right and people can help. You don't feel like you, You feel extremely anxious, there all things that can be helped and suffering inside your self is painful.

Recovery after itu, well the recover after itu mentally can be a long one, I talked to a phycologist on itu and on the ward but once I went home, I felt I was ok. I was suddenly on the high that was life, but then these memory's keep coming in, for me, talk, talk, talk, don't stop talking it through with people, discuss events with your family, go over how things happened, there's all these blank spaces to fill and if you don't fill them with how things actually happened you tend to rely on horrible hallucinations and incorrect memory's things that are probably a lot worse than the real event. Every now and then I still recall things 15month later and I have to ask people, did that actually happen?

So my advice is based on my own experiences. I had a very tough time in itu, is it like that for everyone? No. There are those people who are out of itu in a couple of days, it's still hard but much smoother. Not everyone has hallucinations, depression, tracheostomies. If your reading this with the thought that this is what you will go through, then try not to worry, your experience may be completely different and if you have gone through something similar and not sure how to go on from there, well I guess this shows that you can get through it, you can live a normal life. There is life after itu.


- Posted using BlogPress from my iPad

Wednesday, 10 October 2012

Life's to busy to be blogging

Well I haven't been a good blogger, but that's what happens when life is happening. So things you've missed;

The tummy blockage
A couple of weeks ago I had the most horrendous time with my stomach, people with cf can get a lot of blockages, I have had my fair few, when they do happen it comes on very quickly. Literally I was ok went to bed and woke up in agony and started vomiting. A lot of time has passed for me to go into detail of everything that went on. Basically I was put on a surgical ward over the weekend where nothing but pain relief was given. I spent that time in a haze on morphine telling them what I needed and refusing all the treatment they wanted to give me that was wrong for my illness. As soon as Monday came I mustered up the strength I had and made my way to culm ward where my consultant would be. I stared at him and said 'I have a blockage, I'm on mere, I don't feel safe' he then went and got me transferred to culm, at that point I was really ill. I couldn't keep the medication they were trying to give me and I started vomiting up stuff from beyond the stomach, I'm really not going to elaborate on that. I was drip feed the medication, which I continued to vomit, but eventually some got through and the next day things were working. I was allowed home.

Unfortunately, the blockage had been so bad and I had been left for so long before it was treated, as soon as I got home I started vomiting again and was admitted back in. This happened several times, allowed home absolutely fine after 12hours of being fine and I came back in extremely poorly.

It was decided I needed to see the gastro specialist, my bowel wasn't sick whatever that ment, but it was confused over what it was suppose to do now and I would have to stay on some very high dose laxatives for quite a while. Which I still am. But things are better, although still not back to normal.

The birthday
It was my birthday on the 29th of September, I was spoilt rotten, I had my hair done, I got some new clothes and a ipad from myhubby :-) I literally had a amazing day, with any milestone I can only think about my donor and how without them none of it would be possible. I'm just literally so great full and I'm really trying to live my life 'well' to me that means
making a difference, helping others and enjoying it for myself as we'll.



The haul, I'm a lucky girl :-)




Birthday girl shiney hair new clothes :-)

The holiday
We were suppose to go on holiday this past week, but unfortunately due to being so sick with my tummy, we decided to do the wise grown up thing and wait till we know I'm 100% so I'm still waiting to have a nice length break away and really feeling some sun time would be good, even if I do have to hang in the shade due to my drugs. Instead we went Alton towers, stayed in the hotel, went to splash landings, ate an incredible amount, been to the cinema, ate out loads and been to London to see Russell Howard and good news being filmed. It was good to see him when I'm not in a wheelchair. I had a pic with him.

Then



Now


Wow I look so much healthier!




I'm now back to work as of today after just getting back from London.

Work
Well I've now started teaching group again and really enjoying it, i put some adverts in the other day and expect to be really bizy from it. I'm also starting another job, I decided I wanted another job along side teaching pole for severally reasons, my job is a evening job and I have far to much time in the day, I hate being bored. I felt I needed something else in my life, also we are hoping to buy a house next year, none of this will be possible unless I'm earning a steady wage and we need to save more for a deposit, so another job will really help as being self employed although I earns he money, getting a mortgage with it can be really hard especially when you've had 1year off and miss that years accounts.

The job is working with severely disabled adults as a community and centre enabler. I've got the job and done a trial day there, I really enjoyed it and I'm just waiting for my crb check to come through so I can start. I'm very excited.

So that's it for now, there's not much else to say. I will try to be a better blogger from now but well life's to good and I'm enjoying it a lot, so please excuse me if I get wrapped up in life.

Tuesday, 25 September 2012

Kirstie's Big Breathe Bike ride

 (an article iv wrote for a magazine but didn't have a chance to writer a separate blog so hope you like it)


As I look behind me at the long line of cyclists, I’m ready to push off, this is no race. Were all hoping to just get there.

Iv done this trip before, many times, but the most memorable was when I was taken by air ambulance. I have cystic fibrosis, a genetic that affect all the main organs especially the lungs, just over a year ago from our starting point Exeter Hospital I was give a choice, with end stage cystic fibrosis and being on the lung transplant waiting list, I could stay in Exeter and spend the last few days of my life with my family and husband I had married only 2 weeks earlier, or I could be airlifted to Harefield hospital in London to undergo life support, I was also told that the likely hood of a donor becoming available in that time was very small. Looking to my mum I said, ‘we havn’t got much choice then’ within 30minutes I was in the air ambulance and being flown to Harefield.

Were off, cycling down the road, it feels amazing, the sun shining on me and I think of them, I say my thanks and smile to the sky. My donor is always with me, I think of them constantly and there family.

With us on the ride is Dave, his sister passed away at 23 and donated, knowing him, I know the pain that family have gone through, how hard donation can be but also extremely up lifting. I know my donor family are proud of what there loved one gave and I can’t help but feel grateful everyday.

I arrived at Harefield in the helicopter, everything was unknown, I didn’t know if I had come to die, or what being keep alive would be like, I had to false calls in the first 2 days, then my body decided to give up, it was time to go on a device called Ecmo, which takes over the work of your heart and lungs, but I was just to far gone, I had to be ventilated. I was in and out of a consciousness, mostly sedated so my body could rest. When I was a wake, the pain and discomfort I felt was unimaginable, I couldn’t speak due to the ventilator but I was trying to force the words from my body, trying to communicate, this was to much, switch it off. Ecmo is an amazing machine, it kept me alive but it was certainly the hardest thing Iv ever had to do.



Cycling up the black downs, now these are tough, some of the steepest hills you’ll ever cycle, I would do this every day for the rest of my life, Ecmo, I'm not sure I could do that all again.
On top of the clouds, K ing forget bolt & MO

5days on Ecmo, 5 days of torture, I was nearing the last few hours of my life, doctors worked frantically to get me into surgery, so I'm told, I was completely unconscious.

I woke up still ventilated through a trackiostomy and I didn’t believe I had, had a transplant, little did I know the journey was just beginning and my road to recovery would be hard. Learning to walk and talk, I knew what I had to do but my muscles had vanished and lifting my phone seemed the hardest thind to do, if I lifted my head from the pillow it would drop back down.

I was soon to be reminded, I had made a promise. If I got my transplant, a year later I would cycle with my cf consultant from Exeter to Harefield hospital 180 miles. He was a frequent cyclist and at the time I never thought id live to have to see it through.

Thoughts of dread filled my brain as I wondered how I would ever walk again, the anger at that stupid promise I had made, did they not know I was going to be in a wheel chair for the rest of my life. I was to weak surely to ever even dream of it? I thought they had wasted the lungs on someone who was going to die anyway.



As I open up my legs, changing gears as It gets easier, I'm moving my legs faster as I start to over take each of my group, I hate hills, but here, here on the flats, this is my time. I whizz past to make up my time lost, this is when I feel free, I open my lungs and take that long slow breath, Its so sweet and perfect.

Rehab in hospital was tough, I really never thought I would see the end, but then 4 ½ weeks after my transplant, 6 weeks in hospital, I had done it, I had learnt to walk again, I had done stairs,I still had a long way to rebuild my muscles and my new lungs but I would do my cycle!

And yes as I pulled through them gates on the last day, the crowd cheering me through, my consultant one side, my husband the other, my team of CF doctors and nurses, friends and family. We had done it. As I look back on this achievement, from Exeter to Harefield being transplanted and then again cycling the distance, each an achievement in its self, I find myself being more proud of the team of people surrounding me, I own these people my life, they did there up most to keep me alive, my medical staff and my family but now they join me on this next part of my adventure and go above and beyond the call of duty.





 





Don’t tell them yet but, I'm going to do it again next year ;-)

You can still sponsor us here http://uk.virginmoneygiving.com/team/kirstiesbigbreathbikeride





Will be blogging on my current situation soon


Tuesday, 28 August 2012

Fancy playing catch up :-/

Well Its been a while since my last blog, my laptop has died on me, last time I had started IVs and was feeling pretty bad, I have to say its taken me a long while to get back to feeling 100% and I'm not even there yet. The iv's worked much slower than usual and I am now on a oral course of Cipro since finishing them. Although I'm not coughing and seem really well, I'm most affected after a bizy day or very hard cardiovascular exercise such as cycling. As you can imagine with my cycle ride looming this isn't good. on the 7th of September we head off, I feel under trained and nervous. I know what ever happens I will complete this, but It may be slower than I like.

I'm also hosting a event supporting the ride on the 1st September at the Turks head lodge so If you are from honiton, Exeter or anywhere near by please come along, Its a gig with Ian bruce and Ian wright, There two Scottish folk singers. Tickets on the door at £7 and starts at 8:00pm. That's this Saturday coming guys.

Also that same day I'm going to be on live with John Grovier on BBC Radio Devon at approx 10:45 talking about the bike ride, organ donation and the gig With the two Ian's. So listen out!!!

Several things have happened in the my life and I've started to take steps to make a few things happen, I'm now back teaching group lessons at the Turks head lodge, every Thursday. So far improving my income and also giving me a huge amount of enjoyment, I'm hoping to get that up to two lessons back to back by the end of September. I also have a few other venues in line in different places which I'm hoping to start up in. I've also decided that although I teach alot, it all evening work and most of the time I am extremely bored in the day, So I wrote a C.V and started to send it out, I have applied to work with disabled people enabling them to carry out activities that they wouldn't usually be able to do with out the help of someone, Wether its due to physical disability's or learning. I'm going for an informal chat tomorrow. I'm so excited, I have wanted to work with disabled people for a very long time, hopefully giving them the support to lead what may be perceived as a 'normal life' and achieving there goals.

I'm also hoping to start a course soon, I have yet to find the right one, but I'm very eager and excited. I would like to increase my sowing machine skills, learn to pattern make form my own designs and dress make. I have a pretty technical brain when it comes to making things and also a very creative imagination, I think these with just a few more skills and a bit more knowledge I would like to create my own dresses. Its not something that I will be up and doing next week, It will require studying and practise, But I'm really willing to put the time in.

Iv also had a fair bit of fun over the last week, I had my friend Elly come to stay, she hadn't seen me with new lungs, the last time I saw her was my wedding. Elly also has CF and we stayed away for a while due to me being susceptible to infection, but then it got tooo long and before you know it, it had been over a year!!! We decided to go out on Thursday night and have a dance. Me and Elly are both keen dancers, we went to the R&B club and danced the night away, I wish I had worn flats. My feet were killing in the end!! But it was soo much fun.

Then Friday me and Stu headed to Cornwall Portlevan for our good friend Mel's Wedding, Mel was the director for my documentary and we became very close. Me and Stu camped for the weekend putting the tent up in the dark. I had such a amazing time! Meeting lots of amazing people. The venue for the wedding and weekend of fun was an Eco friendly, laid back farm. With its own camp sight. The place has given my ideas to run a pole weekend there! But anyway, the wedding was amazing and It was very strange as pretty much all the guests had watched the doc, being Mel's friends they obviously watch her work. Well having people know so much about you and also one of the editors who spent hours looking at footage of ourselves and probably know far to much about us!! Well like I said strange, but they were all very lovely and complimentary.

So The next 2 weeks I'm hoping to train extremely hard and gain my fitness to cycle the 180 miles. But please please please if you haven't already sponsor me, every pound helps and goes to some very deserving charities.  http://uk.virginmoneygiving.com/team/kirstiesbigbreathbikeride Thank you all so much for your support!

Also those who read about my friends Kim who had her Transplant she is home! She has done extremly well and Im very proud of her, Im also thankful for her donor giving her the gift of life and finally the medical staff at Exeter Hospital and harefield hospital.

Sunday, 5 August 2012

Poorly lungs

Feeling paper thin, weak and tired. My stomach twists and turns. Every fibre of my body feels exhausted, my limbs have become heavy. I curl up, I close my eyes, hoping when I open them again the sickness will be gone and the room will have stopped spinning. I don't remember Meropenum and tobramycn making me feel like this before?

I started IV's for my chest infection, My lungs don't feel any better, constantly coughing, I go from coughing up loads to unable to cough up anything, not because its not there but just because I can't, I can't move the flem, I can't feel where it is, The still foreign feeling of these lungs are there, Its strange as we seem to work so well together, but as soon as they are not well, I feel so un used to them.

Its not getting any better, the sickness, the infection, my body feels so weak, all energy sources feel depleted, despite eating lots the last few days. I cannot eat today, I cannot think of food, just the thought brings my stomach into twists and turns, begging me not to lay food on top of it.

Pain, there are pains, pains in the bottom of my lungs, scar tissue in the lining of my lungs from the operation that's been irritated by the infection, as I take a breath in the sharp knife intrudes deeper.

Reading this you would think it was a pre transplant blog, but its not. I hate feeling like this, I hate writing about it, complaining about it, but well, I still get ill, I just hope this won't last much longer and I will be back to enjoying my life. But for now, I'm going to curl up and watch the Olympics, Inspiration for when I feel better.

Sunday, 29 July 2012

Yearly clinic

So my annual review, One year on being back at hearfeild and seeing all the staff and telling them its been one year and this time last year I was only just coming on to E ward, 'no way' was the response. The sunny weather that has finally arrived really takes me back when your there, It was sweltering when I was in and all i did was have hot flushes and sweat.

I had bloods, Ecg, fitness test, lung function and xray.

 I have now had a chest infection for 3weeks, at first my lung function wasn't affected, It started to be affected over a week ago and I started Cipro oral antibiotics, but needless to say it didn't really help, I had 2 ashma attack while cycling, coughing continuous amounts and sleeping loads. I knew my year review wasn't going to be as successful as I would like. The fitness test, well I still kicked ass, they were extremely impressed and said I was above average of a normal person, that my lungs were very good and they were surprised at how smooth my lines were, indicating that the lungs were working at a normal capacity and didn't seem transplanted at all. Which is fantastic. They said my fitness level was well beyond average transplant patient. I'm so happy as I have worked hard. They did how ever stop me Earlie, they said they didn't want me to push myself due to the infection, I was so annoyed, I wanted to bust some records. They did however say I could repeat next time at which my result would be even better.

My lung function was down, a tad, but I knew that, I thought my consultant would want me in, i instantly got in there with 'I want home ivs' and she went 'ok' surprised and yay. It feels like they are suddenly aware that I know my body now and trust me. relief.

Kidneys are functioning very well, which is great.

Diabetes, Well my h1bc result is only slightly raised but very good as I'm diabetic and even better as I have been reducing my insulin for a while, at the same time altering my diet and exercising to make sure my sugars are stable, All my home readings have been below 10 which is great. I'm getting somewhere for the hard to manage diabetes that was having hissy fits all the time, to correcting it, Ill never be with out it, if i eat crap then my sugars are high, but as long as i eat like i have then it will remain good.

Everything else was pretty good, I need to reduce my tac slightly and will start home IV next week, I also need my sinus's looked at as they are highly infected and causing the infection in my lungs.

To see what else went on, on my day at clinic, please look at my last blog, Kimberly kneil's new lungs.

Tuesday, 17 July 2012

2nd Chance Ball 14th july

So Saturday The Ball, Wow. It was such hard work, but totally worth it, I'm so happy with the out come and everyone who came seemed to enjoy the night. I thought I would never run a ball again but have decided 2014 I will do the next one!! It was such a learning curve, but I have really learnt alot and believe next time we can make it even more profitable. We have currently collected in £3000 but have more to come in, I'm really chuffed with this and think its a nice amount.


I made a slide which was shown at the ball, so here's it is Slide please share and hopefully raise more awareness for organ donation.

Here are a few links for the entertainment we used which i highly recommend http://soundcloud.com/honeysol The band Honey Sol Simple on fire!
http://www.ozzyd.co.uk/index.php The magician absolutely amazing!
http://www.kudosphotography.co.uk/ Photo booth

Lastly some pics



Me and my best friend (photo booth)

Me and Stu (photo booth)

Transplant patients form harefield, left to right Charlotte davies dbl lung CF, Sarah double lung, me, Sophie clarke double lung cf, Hannah Kellaher heart, dave Double lund copd.

A big thank you to my mum, who was my one and only right hand lady, without her i couldn't have done any of it, She is such a huge support in all areas of my life and a devoted mother to all 4 of us.

Thursday, 12 July 2012

My Lung trasnplant anniversary

Yesterday was a simple day, I went for lunch with Stu, Mum, Nan and my sister, We raised a glass to my donor and talked about this time last year.

Me and Stu went and watched a film together.

Then at 8:45 we all gathered on sidmouth beach with lanterns, There were my two best Friends, Julie and Emily, My Mum and Nan, Stuarts Parents, Stu (obviously) and my niece and nephew (my sister couldn't make it due to looking after her youngest) We all sat on the pebbles and wrote a message of thanks to my donor, Mine was simple,

Thank you for the chance to breathe,
to live,
to love,
to spend this extra time with my Friends and family.

My donor knows how I feel I am sure, I feel forever grateful and words cannot describe how I feel about them. It endless.

I read out the letter from there mother, which some of my close family had had the chance to read while others hadn't, my nan was taken away with the depth and detail in the letter and said she could not imagine how brave that women was to write such a beautiful thing, my mother often describes her as an extremely understanding and intelligent women. I think they know how much this letter means to me, I cherish it and keep it in a special box with all my other transplant stuff, but that is the most important. Reading the letter out loud you think I would cry, but no theres something about it that is so soothing and comforting, its has so many happy moments that I can only smile and also laugh in parts. I know my donor had a brilliant sense of humour, I can feel it lifting of the pages with the details about them.

We all said what our messages were and then we played a couple of special songs.

Then the hilarity came, we tried to light the lanterns, and then when we did to let them float in to the sky, this ended up in us spread across the beach chasing our lanterns as they went across the ground and tried to make there way to the sea. There was lots of laughing and screaming when we would finally get one to take off, It wasn't as planned, but to me it was so much more, the comical genius of our situation I pretty sure if my donor was watching would have been in hysterics. We managed to set 3 lanterns out on the wind and over the sea, at which I sat back and just felt great happiness wash over me. Content.





I was also on the tv yesterday heres the link ITV westcountry

Tuesday, 10 July 2012

Hullucinations and ecmo

I thought today I would tell you about some of the hallucinations whilst on Ecmo. I have been thinking a lot about my time on there a year ago now. Things that were real seem unreal and things that weren't seem more real.

To me ECMO was not just a tube in my neck and groin, ventilation was not a tube in my mouth or neck. I was in a huge fish bowl, it was gel like water, the nurses and doctors were mermaids. They would come into my fish bowl and one day they told me I had to come out and when I did I couldn’t rest anymore, I had to wake and breathe. If I would still breathe I could still get a transplant. Suddenly I was dropped from the fish bowl and I had to breathe. This was when I was being taken off the sedation and the ventilator was taken out in real like. I remember trying to breath but feeling like I was drowning, like the water form the fish bowl had seeped into my lungs this gel like stuff and I was suffocating. But I carried on, drowning but trying to breath, panicking and the doctors saying in a serene and echoed voice just breath, breath and the voice's were getting higher and higher, in what sounded like a song.

Another hallucination, I remember lots and lots of blood, I was sat bolt up right and there was blood fighting out my tracki, everyone was panicking, saying if I carried on bleeding I would die soon, there was to much blood everywhere, so I was moved, other patients were just staring at me and I looked at the pleading them to stop it as if they could. This was just a hallucination, but to me I swear there was blood everywhere, but at no time did I bleed out that profusely, although there was blood filling my tracki.

I had so many more hallucinations after transplant it was hard to know if were real or not. What was real and what wasn't. Some times the real seemed more unreal and the hallucinations more plausible, despite there ludicrously. For a long time I didn't know what ECMO was until my family explained it wasn't a fish bowl. The vulnerability when you’re that sick and the weakness of your own mind, understanding the simplest of things if impossible. I remember my family telling me the news of the world had shut down and I couldn't understand why they were telling me this and what significance it had to me, Had they printed something bad about me and about transplant? Stupid I know.

After transplant, I couldn't bare to watch TV for a while, I just wanted to stare into space, but as soon as I did, I was watching the news the whole time, waiting to see if they would talk about a car accident, someone being knocked on he head and never waking. I Was waiting to find out about my Angel, desperate to fit all the pieces together, if what to me was a very confusing and broken story. I understood nothing of what had and was happening to me and I myself was a distant ghost of myself.

Tomorrow, was the day I received the gift of life, where I had to learn to relive, to breathe, to understand, to grow.

It wasn't the easiest of journeys, but now, now I have to say I would never have expected my life to be as amazing as it is.

I've also been thinking about my friends on the transplant list, will they get there calls? Its so hard being friends with other CFers, its the most amazing thing being able to connect with people who understand you but when you are watching them die Its so scary and hard. I have broken my heart over many friends who didn't make it, but I wouldn't stop being friends with such amazing people, there lives and friendships mean so much to me. I just pray that there calls come and we can stop this happening, needless death, because others just don't think about organ donation. My wish for this week, for everyone to just think about it, to make there decision, let your family know, whatever it may be. I hope others get this opportunity I was so lucky to be given.


www.lltgl.org.uk/nhsbt to sign up

Monday, 9 July 2012

National transplant week

Today is the start of national transplant week. This time last year, I was on ECMO, I had had my tracki fitted today as I was struggling badly, i was begging to come off of the machinery the fight just seemed to much finally I wanted to just die. Its also my friends birthday who passed away when I was 10 from an unsuccessful transplant, This is the day I think Debbie came to tell me to keep going, to give me hope and let me know I would be ok. I don't know if it was the medication, a hallucination but well someone was there, someone no one could see and for me I want to believe it was her. I'm so glad I held on, Life could not be any better.

My family were all wondering If I would make it, but there was another family and It was becoming clear there loved one wasn't. I'm thinking of them today. I know this is a significant day for them, in other reasons and I want them to know, I'm thinking about them every second of the day and of my Angel. My thanks to them is beyond measure.

I drew a picture of them the other day, I'm so proud of it, I feel Iv really caught them in the drawing, I was wondering whether to send them a copy. Its in my memory book of poems and drawings, some of my most personal stuff that not many get to see.



This week my plans, are ball organisation tomorrow, then Wednesday, the day I received my transplant my actual anniversary I will be going for meal with family, then in the evening we are going to sidmouth beach where we are letting off lanterns for my donor, were also playing a special song for them. My family have each bought a lantern to let off and I'm looking forward to showing my thanks.
Thursday and Friday will be organisation central for the ball and finally the grand finale of national transplant week My Ball The 2nd chance ball! So named after this blog.

Every day this week there will be a blog so please come back and have a read. On the week that my life was saved.

to sign up go to www.lltgl.org.uk/nhsbt


Me with my #passiton temp tattoe for national tx week x

Saturday, 7 July 2012

Something on my mind (none transplant or CF related)

I feel so angry today, so hurt and wounded. This is going to be somewhat of a cryptic blog but it’s about my feeling from past events.

I feel angry, angry at the person who created this situation, who wounded my family. The deceit and damage it done, I wish we could all forget and move on. Its not something we dwell on but every now and then, the damage becomes apparent.

I want to scream at them, I wish I could hurt them so badly, in ways I guess people wouldn't think me capable. The destruction is devastating and something that I wonder if it will ever heal.

I’m ok, I can forget, I can escape, but I guess it wasn't me it mainly affected. But today it feels like the pain is piercing me through the heart again. As I was reminded of the hurt, when I realised someone else was still in pain over it all.

Sometimes wounds just don't heal; they close up and are ripped open ever now and then.
I don't know why I have reacted like this, the reminder of the pain was days ago and usually I’m very unaffected by them, cold and almost distant to the fact, its like I forgotten and it all happened to someone else, I guess maybe I thought things had changed and others had moved finally moved on. I just wish I could take there pain away but I can't and that’s the hardest thing.

Tuesday, 3 July 2012

Pinnacle

Pinnacle
11 days and counting to the ball, only 8 days to my one year transplant anniversary. I believe tomorrow would have been the day I was air lifted to harefield (days blurred a bit). It feels like everything I have been working toward for he last year has reached its pinnacle. I was working toward health, fitness, healthy mind and soul. Have I achieved this. YES. I am on my way to becoming the person I vision my self as. I feel healthy I feel fit. I feel like I have used this last year well, to discover me and my new body, to get answers about things that otherwise would have followed me forever. When I woke up from transplant, I didn't set myself these goals, I just hoped to make it through a day at a time, I never believed I could have done this. That I could survive this horrendous thing and still come out whole, well I didn't, I'm not ashamed to say it I got shattered into tiny pieces, my mind felt like it was fragmented and I didn't know who I was. When I thought I was back together this whole recovery threw other mental obstacles in my way, But now I guess I feel stronger than I ever could.

THE BALL
Well, Its ball central here! oh dear didn't mean the innuendo. I have been going crazy the last week, organising, finalising, selling I have to say this is actually the bit I enjoy right now, everything coming together, pieces are falling into place. If things were going wrong I would be a sleepless mess. But its not. I'm getting there!! I can't wait now, but at the same time I'm still trying to sell tickets, so I want time to slow down so I can sell more. I have until Monday to get my final numbers in, I would just like to sell 10more tickets then ill be happy. 10 more I can do it I'm sure.

Thursday, 21 June 2012

Disney Paris our wedding anniversary

So again its a catch up by photos, Well Saturday was mine and stuart wedding anniversary and we jetted of to disney paris, a four star hotel, lots and lots of great food, the first time in ages I'v just allowed myself to eat what i want and when I want. It was totally indulgence, We spent 3 days in the disney parks and the evenings in disney villiage. Here are a few snap shots of our first holiday post transplant.

Waiting for the plane

On the coach to our hotel

With Mickey








Me with jennifer a friend who works over in disney


I love scarey rides, but apparently I dont look like i do lol.











Us posing before we go into the wildwest dinner and show amazing!!

I had sucha great time, it feels like everything I have been waiting for is coming together, Im not so worried now about post transplant complications and first year problems, everything is settling down, physically, mentally. Im where I want to be, Im on target. The ball is looming and life just seems good. Im also planning my next holiday to the elysium in cyprus where we were booked to get married, im hoping to go in september for my birthday.





Friday, 8 June 2012

Disney Paris

Well I had clinic on Thursday, previously I was told to wait and see about a holiday and that I possibly couldn't go until September as I'm sure most of you know, me and Stu didn't really get a honey moon, so to speak. We spend a few nights in Cornwall and it was a very grand hotel but dying on your 'honey moon' isn't much fun. So we were hoping to do away for a 2 week break on our first wedding anniversary. Which is next week 16th of June. I decided to see if we could go away for 4 days to Paris or Spain. I was desperate to get away and would just love to go anywhere for a short amount of time. I got the go ahead. We have just booked Disney Paris for 3 days!! I'm so excited I can't believe it, I can't even begin to tell everyone how excited I am, I went into the travel agents today and it just came out to expensive for us £1700+ but I got on the Internet tonight and have sorted out a deal that's less than half that!!! Still the most expensive 3 days of my life but for once when you've got to do something you've just got to do it and we have. I feel so highly emotional and grateful, I'm living and enjoying my life doing the things I've wanted to do, Holidays were such a big part of what I wanted to be able to do post TX, Just to enjoy every second and soak up all that life has to offer. I'm so grateful I feel like I could burst. So on the 16th we fly to paris and stay at the best disney hotel and go to the disney parks!

I'm going to leave it there, a short but sweet post.

Tuesday, 29 May 2012

Lazy blogging a good catch up

Ok so this is what I call lazey blogging. I have done so much so im goin to upload a load of photos that basicly tell you what I'v been doing. :-)

 
I started my training for my charity bike ride, I havn't really riden a bike properly in years and never done alot of miles. But i felt like I was taking to it really quickly.

I had a root canal, I have perfect teeth, healthy teeth, but due to my bronch things got chipped, a tooth feel out and I got an abcess, hence the root canal, I must have gums of steel because non of it was painful not event he injection.



We held a bake sale to support the ball and raised £180 it was the best set up yet, Me, my Mum and Nan The  three muskateers.


I went to a pole and acro/hand balancing work shop with Bendy Kate from got to dance! It was fab Im now regularly practicing and seeing as I wouldnt do much there I have improved alot!





I went to devpn county show and loved it heres an alpaca teddy, soooo soft, last year I was in a wheel chair and reaching what I call the end, as well as preparing for my wedding, I can't belive how things have changed, last year I said when I had new lungs I would hold a LLTGL stall there, It was a bit to much this year, but hopefully next year.

Heres the biggest iced bun I have ever seen, I LOVE iced buns, cinamon, fruit, cherry any as long as theres heeps of icing and a cherry on the top, there was one on this one, I ate it tho, whoops


I kept the cycling up I cycled all the way to sidmouth and back via ottery and fairmile 25miles in one day. my second week of training I cycled 100miles in one week!!



My Hand balancing got good!

I have been cycling, weight training and hand balancing at every oppertunity, My goal A. to be in the best physical shape i can be in B. to have a very toned body. I feel my hard work is getting there.


Flexibility training as well!!




I went out on a night out witht the girls, I had sucha  good time, I don't go out very often pubbing/barring (i certainly dont go clubbing) I got all glammed up and had a great time, I may have been home by 12 but thats the way I like it.




The Handbalancing kept improving!! At a family BBQ a few days ago.


So This  week I have already cycled 50miles, Im only in my 3rd week of training, Im going to a medical seminar tommorrow to talk about CF and Transplant. Then at the weekend my friend Hannah is coming to stay, she had a heart transplant and we met in clinic after talking for ages. Im soo excited. Then next week the annual check up with harefield.