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).

- Posted using BlogPress from my iPad

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.

- Posted using BlogPress from my iPad

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.

- Posted using BlogPress from my iPad

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:

- Posted using BlogPress from my iPad