Friday 17 October 2014

Full house

My life has moved on. I feel like I have begun the greatest chapter of my life. My health is the best it has been, there will always be something but to me it's nothing. It's just life. Every night I curl up in my bed there is more life in this body then there ever has been. More life in this house...

My husband, my little Kia (best friend and pup) and my nephew.

My nephew Charlie (15) now lives with us. I have always tried to take a active role as auntie in my many nieces and nephews lives as much as possible. Although that wasn't possible for so long. Now I feel I may have all the time in the world to give. It was such a big decision for us as a family but ultimately a great decision.

I love having him here and helping him through one of the most important years of his schooling. I hope me and Stuart can guide him through his decisions and help him find his way in the world. It's such a precious gift being able to help mould someone. To parent them. A gift we never thought we would have, but gifts don't always come in the most conventional ways.

Who knows what his life will hold but I hope the most important lesson I can teach him is to live life to the full, as if today is the last day of your life but dream as though you will live forever.

Left to right. My sister Kerrie, my niece Kaylee (13) my nephew Reece (5) me and Charlie

Just one of the ways my life is changing for good...

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Wednesday 14 May 2014


When you know something already, it's obvious to you for so long but Then when someone confirms that and suddenly it's like your really hearing it for the first time. The meaning sinks in and suddenly a little bit of sadness fills your heart.

My ovaries are very nearly completely shut down, I am going through menopause.

I never wanted kids, I always knew that with cf it's not really a possibility. I was always to ill to even think that there would be a time in my life that they would fit in. Knowing I would die young I didn't want to have a child to leave it through its childhood. Having a transplant I suppose that can change things slightly, you know you have a new life line, there's the option of surrogacy, you now have energy to look after a child, run around and play games but still I know my time on this earth is not a normal life span and chronic rejection could set in at any time, proved to me last year when I was diagnosed at approximately 2 years post my first transplant and declined rapidly. Yes I was so lucky to get my 2nd transplant but I still don't know how long this will last and therefor wouldn't be willing to risk having a child to become ill and leave my husband caring for me whilst I die and a baby. Don't get me wrong I have seen my friends post transplant have children and I'm so happy and proud of them it's was some calling deep within for them, there maternal instinct, for me I just don't have enough of that to have a baby with all those risks.

But still sometimes I think if I had a normal life, I would have a child. If I were normal I could wait till I was in my 30ies when I have lived my youth for me and followed my dreams of a successful career, one that I would be well into by now because I wouldn't have had all these other set backs in life. I could then have a child and devote the rest of my life to them.

So that is that, I am not that girl in a normal life and never will be, not that I don't love my life I really do. If by some mirical I get to lead a long life and live into my 50ies then I will look back and feel a pang of regret that I never got to have a child and now all options have forever been taken away. It's final. I have no choice I cannot change my mind and have a child.

The sadness I felt when the menopause was confirmed wasn't just for the child I would never have, there was a whole mix of emotions, suddenly I realise that part of my youth has gone and that's not just mentally, not like just a feeling, physically part of my youth has been taken away from me. My mother had a early menopause, but by early I mean 40ies hers by all accounts seemed quit simple, she complained and still does of hot flushes. So the thought of menopause didn't really frighten me, but then I started researching and realised a lot of my current problems seem to comedown to this. A huge sense of fatigue, that was contributed to by other health factors that are now sorted but the fatigue is still there, tho lessened slightly. It makes me feel so old. It makes me feel less feminine, I am now officially unable to do the thing that makes us women, have children.

Then there's the mood changes, I haven't really told many people but I guess now is as good as time as any. I am on anti depressants. I started them a few weeks ago due to depression and anxiety. There are things that have upset me which I don't want to go into and I guess with my hormones being out of whack it's lead me to feel paralysed inside, a sense of dragging and all momentum has gone. I'm fixated on a few things and really need to be free of them finally, events in my life as well as old demons I have carried around for years. My anxiety comes on suddenly for no reason, I'll just be sitting there and feel overwhelmed, trapped like I can't get out, I don't know what I'm trying to get out of, my own mind, my own body. It's a overwhelming horrid feeling that I can only remember feeling in itu with my first transplant and when I have been on extremely high doses of prednisalone which cause anxiety. The antidepressant are helping but I still lack the motivation I had before, I just feel stuck. Which makes me feel even sadder because I so want to be out enjoying every moment as I do love my life, just right now I feel I've almost forgot how to.

There are many other side affects or symptoms of menopause, which I am experiencing but don't really wish to talk about. It seems that some women sail through, I am not one of those.

I started this menopause at 23, the reason was radiation therapy. I'm starting HRT soon which should help with these symptoms although it may not help one of them. I don't think many people will get how I feel going through menopause, I'm sure a few will think great no periods. I guess I would have thought that before going through it to.

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Saturday 5 April 2014

Leaving next

So for a while iv been struggling on and off with fatigue, unfortunately more so lately then not. I'm still trying to keep up my gym routine but the last two weeks iv struggled more then ever. I struggle everyday I go to work. I feel faint and weak. It all came to a head when I had a cold after another cold work just got harder and harder and despite my store manager doing everything he could to help. There just seemed no way I could carry on my job and fulfil my role that I'm suppose to do and there seemed to be no other way the job could accommodate me any more then it had.

I have a chest infection currently and will most probably be starting Ivs if I'm no better by Monday.

So still trying to go on despite bad fatigue, which made me collapse on Thursday, I went off to work this morning and realised I just couldn't do it anymore. I have a lot of time off and never feel better, the anxiety of turning up to work, knowing it would make me feel awful. I just couldn't do it. So I sat down with my store manager and told him I'de like to hand in my notice. Not something I had done lightly. It had been on my mind for a long time and I just couldn't keep going.

I don't plan to sit around, I still want to work and earn my way in the world and I'm hoping I will be able to start teaching pole again soon, something I can do when I'm feeling up to it and I only have to teach an hour at a time then I can break and rest. I can organise my lessons around me. I can't sit around, it's just not me, but hopefully some time off will give me chance to get whatever's making me so tired sorted. The doctors think it's ebv. A virus that you can't get rid of but can be dampened down. I'm also not resigned to feeling like this forever and will get my energy back not matter what.

So my last day at work is next Saturday. I'm so grateful to my store manager and all he did to try to help. So I look forward to teaching I pole again and also I'm still working toward my public speaking and tv presenting career which is taking off with my first paid speaking job booked in!

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Monday 31 March 2014

Memory boxes

So I wanted to share with you all the beautifully decorated special box I recieved through the mail. Now I don't usually plug products, but I thought this was pretty special and seeing as a large amount of people who read my blog have had transplant or know someone who has had one, I thought I would be doing the transplant community a favor in sharing this box.

This amazing memory box is made by Kati, Kati is fellow cfer and transplanted Oli Lewington's wife. It's fantastic quality perfect size for a mixture of my 2 transplant memorabilia.

If your looking for that special gift to commemorate a transplant, this has got to be it!

She does all sort of organ related boxes, baby, wedding or even custom made.

So if your looking for a special memory box transplant or otherwise I defiantly suggest

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Sunday 9 March 2014

Magazines, speaking and training

Life at the moment is fairly busy, iv been doing a fair few magazine articals. The first of which was out last week.

Me and Katie gammon who recieved our transplants the same day and appeared on day break together were featured in Love it magazine!

I am also featuring in Top Sante a women's fitness and wellbeing magazine. Me and my mum made our way up to London last Friday for the photoshoot. I had hair, make up and got styled into a beautiful dress. You know the type you shouldn't even think of food in! Especially if you have cystic fibrosis. Which was extremely hard as lunch was catered before the shoot! Let's just say I saved the pudding till after :-0

I'm in Junes issue.

Here's some shots of me at the studio.

Me and my mum then went for dinner at a Mexican place and stayed over in a hotel. It was a lot of fun.

I'm hopefully receiving a copy of these pictures for my new website this is my professional website for my public speaking and tv presenting. Which iv been spending a lot of my time focusing on. I joined toastmaster in February to try and improve my delivery of my speaking and have since completed my first speech and won my fist table topics. Toastmasters is a group where you go and work your way through a book on different speeches. It's a fun, welcoming group and I have to say in 3 meetings I feel iv come along leaps and bounds and I'm working my way towards competing in competitions. This could really boost my career because who wouldn't want to hire a award winning speaker, right? (That's if I win ;-)) plus it's just really fun and has made be realise how much I enjoy speaking and it's what I want to do.

Iv realised speaking is so much part of who I am, possibly because I get so nervous, usually my nerves come from a deep fear of failure in something I'm really passionate about. If I wasn't passionate about speaking the nerves wouldn't be there. It's really exciting when you realise finally what your suppose to be doing in life and have goals to aim for.

Lastly my training at the gym! I have been working really hard to regain my fitness and exceed previous levels. I'm doing a lot of weight training, flexibility training, pole training, hoop training and cardio too. I want to be the best I can get to, because i believe that fitness has played such a huge part of why I'm still alive and have recovered well each transplant. Having muscle got me through ecmo and ventilation with out the strength in my intercostal muscles I might not have ever breathed on my own, with out muscle memory it could have taken me months and month to walk again, I could have been left unable to walk! After my second transplant I was up the second day, I can only attribute that to the perfect lungs inside of me, the doctors and the muscle mass I had still maintained, despite the fact that before the transplant my oxygen levels and c02 levels were so bad I couldn't move of the bed. So I guess I'm saving muscle because you never know when you might need it on a rainy day. Also I am Determined that this year I will be at the transplant games! I'm starting to work with Exeter university to become the fittest I can to compete, in the most efficient safe way. Here's a few of my training pics.

Me and Lou Lou at the gym, back arching for back arch march.

My best ever back arch, I didn't realise I was this bendy! Iv always been flexible but my back I thought was my weak point!

My top I got made for the gym :-)

Don't worry guys I'm not going to become a muscle bound hulk, it's not in my genetics ;-) feel free to add my Instagram I upload all my training on to there along with pictures of my pooch and everyday life @ktbutterfly

Lastly you might have seen the badge at the side of my blog, I'm no 10 on top cf bloggers :-)

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Thursday 6 March 2014

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 and our Facebook group

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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Monday 10 February 2014

6 month

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

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

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

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Thursday 23 January 2014

Clinic = amazing

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

Me and Emily.

Me and baby Sophia!

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

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

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

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

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

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

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Monday 13 January 2014

My house

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

12ft fern trees being chopped down

Spare room no1

Dum spiro spero = while I breathe I hope

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

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

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Thursday 9 January 2014

Getting signed with an agent

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

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

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

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

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

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

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

Monday 6 January 2014

When do you get back to work

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

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

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

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

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

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

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Thursday 2 January 2014

A years review

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read more:

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