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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