Wednesday 28 December 2011

The other side of Me - Extreme Control Pole

Ok so I'm doing a bit of shameless self promoting here. If you live near exeter then this might interest you. I teach in honiton. Private Fitness pole dancing lessons, in the comfort of my home studio area. I have a Pole with 2 large mirrors. I am the cheapest Instructor around because when I was learning affordability was the biggest issue, I had the skill and muscle but lacked the finances. So when creating my lessons, not only did i want them to suit my students individually but suit there affordability.

One on one £20

2ppl £12 each

3ppl £10 each

Or the January offer to help you get back to fitness and burn off the turkey belly £8 each for a lesson of 3 ppl. This offer lasts until the end of January and you can have as many lessons as you want in that time.

If your an existing student then don't worry you won't miss out on a January Offer, for every class you introduce then you get £10 off a lesson, you can only use £10 off a class a time.

My class's will tone your core strength, upper body mostly but can provide an all over body work out and a great cardiovascular work out.

Pole dancing is done in bare feet and fitness clothing. I also sell a great range of fitness pole dancing clothing.

Please email me on for pole dancing only and add yourself to this group

Thanks guys

Sunday 25 December 2011

Merry Christmas

This time last year, I was Ill, I was always ill actually and I had had enough, it was Christmas that i decided i couldn't live like that anymore and on the 29th I asked to be referred for transplant finally. I knew the pretending was over, my life was slipping away and something had to be done.

I never thought I would make this Christmas, my first Christmas with my husband. But here I am. Stronger than ever living life to the full.

I have spoilt my niece Kaylee, nephews Charlie and Reece. I spoint Stuart, My Mum and My Nanny. In fact everyone. But the most important thing, i probably enjoyed it more than receiving my presents, although I did enjoy that to. I felt sad when the presents had been all given. I baked biscuits as presents and made cupcakes for Christmas day. It turns out im pretty good at this baking milarky and I really enjoy it, Iv been baking & cooking alot since my transplant, i now have the strength to stand long enough, in fact just have teh energy to even concentrate, where as before I couldn't even sit in the kitchen and bake as it exhausted me. For me no present could beat the two amazing gifts iv received this year, the promise of life with the man I love and gift of life to spend my life with him, that was obviously the most precious thing I could ever receive.

As I write this i think mostly of the amazing person who gave me the gift of life, my donor and there family. This is there first Christmas without there loved one, I can't imagine there pain, but wish my angel the most beautiful first Christmas in heaven and there family some peace front there grief. So please thing of all the other donors out there and there first Christmas in heaven and there family's left behind.

Also could you take a minute to think about Rachael Wakefield, a true angel in the sky and also Marjolein Van and all the other Angels we lost this year.

Another Christmas thought, for all my friends who are also celebrating there first Christmas with new lungs, Jennifer wederell, Angharad van der walt, Chantelle Hughes, Sophie Gannon, Charlotte Davies, Victoria Tremlett and Katie llyod, Sharee McPhail, Salley Russel. Lots of new additions to the new lungs club, Its been a good year for transplant, sorry to those missed out.

My final thought is for my amazing cfers who are struggling this year, Kim kneil, also married this year but waiting to be listed for transplant, Kerry Alex Thorpe, engaged to her lovely fiance, hoping to get married with shiney new lungs, Alan crowther with out your help Alan might not be here next year, but a transplant in this country is out of the question pls donate here and finally Jess Brenwood whos spending christmas in hospital also hoping for new lungs. Also think about all the other people out there this Christmas who without a life saving transplant won't be here next year. Iv always said out of me and all my friends statistically half of us would die on the transplant list, great fully I haven't had to say goodbye to many of my waiting friends.

So please although, my story has a happy ending, don't forget those who won't, we still have a huge shortage in organ donors, So if you feel like giving the greatest gift and change someones Christmas one day, sign the organ donor register

Merry Christmas

Friday 23 December 2011

Christmas sign up stalls

Well the last of my stall were held last night in princesshay in exeter. We had a total of 245 people sign up over 6 stalls.

I’m absolutely thrilled, but it did lead to some revelations about people and there views on organ donation. My previous theory was that most people wanted to donate but just didn't get round to doing it. But actually some people just don't like it, others don't agree with it, the principal and indeed some people said they didn't agree with transplant at all. This thoroughly upset me in many ways, does this mean they don't agree with me being alive today, do I bend all the ethics and rules. How can people disagree with something that saves lives and improves the quality of people’s lives? Is the idea of organ donation that horrific to some people?
Well I guess when I got down to the nitty gritty and asked why people didn’t agree with it, most people couldn't really give me a valid reason, they didn't want to think of there death, well I can understand the idea of that but for me I thought about me death for well most of my life, I never planned for living, set on the idea that I was going to die one day in the not so distant future. So therefore I have no taboo over death, it’s something I thought and discussed openly, I didn't want to die but I didn't find thinking about it offensive. So perhaps we need to bring death in to the 21st century, It happens, It horrible and often seems cruel and unfair but isn't it best to plan for the inevitable, it is one thing we can all be sure of, one thing every person has in common, so perhaps to tackle organ donation we need to tackle this deep taboo.

The other reasons I heard were religion, only I was well prepared to tackle this one, that all major religions agreed with organ donation although some one guy tried to tell me that he was a personal friend of the popes and the pope did not agree with organ donation, my patience was wearing thin with this particular know it all.
Other reasons were simply down to lack of knowledge and a greater need for educating people on organ donation. One thing many people came up with is imp not allowed to donate, or I#m on to much medication, guys if I can donate my organs with all the medication iv been on im pretty sure your alright. There are only two illnesses that rule you out for organ donation, that’s HIV & CJD. Sexuality, colour and religion pay no part in this and even the rules have changed for those giving blood now! You are allowed to be a gay male and give blood!

So my sign up stalls are over, I had a great many helpers, who id like to thank, Robyn bennet mostly as she stuck with me through blustering winds and made me laugh constantly, my best friend Julie, Stuarts mum and dad Julie & Pete, my lovely niece Kaylee who's only 9 and managed to sign up around about 10 pp and finally my husband Stu who came and helped out after a full days work.
I hope to carry on my stalls in the new year and also look forward to a few other projects, such as speaker project of which I'm participating on the 14th and already have my first talk at my secondary lined up after wards, my aim is just to educate the student about organ donation and transplant, the decision is up to them, I'm also lining up a few more schools, colleges and unis.

I'm also excited that LLTGL have asked me to work for them as an employee one day a week, doing various other things for them along with my advocate work. So that's all very exciting.

Thursday 15 December 2011

Infection, virus and rejection

Ok so I'm finally back home after a week in London and an admission. I had a ct and a bronch, It came back that the ct was a bit fuzzy on the bottom and my bloods showed the metanumo virus, nothing big but it can cause an auto immuno reaction, so basically possible rejection, which isn't a big deal in the first ear and can happen a bit, so I'm lucky iv only just got a little bit. I also had a bit of infection lurking around. I was started on methyl pred industrial dose, immuno globins and an Iv antibiotic.

I have to say I was going crazy in there, I hated not being near home and at times wasn't allowed out because of lowered immune system with the methyl pred.

Yesterday I was told I would be going then I got told my white cell count had dropped and had to have my blood re done, they came back fine and we rushed out the doors as fast as we could.

Harefield is a great hospital, but when you feel perfectly fine it grates on you quite a bit.

Anyway, I'm back, my Christmas decorations are up and I'm trying to get some lessons in place, also trying to get back into my fitness regime, I have been slacking so I'm off to the gym today.

Any way a somewhat brief blog but that's everything summed up really

Wednesday 7 December 2011

Lung function drop

Well the last week has been what I would describe as slightly rocky. Since tx I have had minimal problems and had an amazing recovery. My lung function was fev1 98% and 103% so pretty damn good. I had been exercising 4-6 times a week with various class's and gym work. But this last week hasn't been so good, in the run up to this week my exercise had tapered off, I was becoming increasingly tired and lost a fair bit of weight. So last Wednesday I was doing a sign up stall but I had woken with awful stomach pains, unfortunately new lungs does not in anyway mean I'm cureds of CF but my lungs are cf free. I decided not to eat as I knew I had a stomach blockage building, next thing I knew I was very faint and feeling extremely faint. So I packed away and off to the hosp I went and x-ray later and it was confirmed, I had a nasty blockage, so down with the ng tube I went and started to put gastrographin down slowly over night, gladly the rocket fuel like stuff worked and my pooing regime returned. I had also been low on magnesium and had a little top up and some fluids as I was very dehydrated.

So back as home I had been having a few problems with my diabetes lots of high sugars, peeing like an elephant and drinking excessive amounts, I also had lost about 4 kg this was actually the first sign that that it was my sugars that were bad, yes I know I know I should check regularly enough to know it was my sugars but I had got it all under control and thought it might remain predictable and safe. Wrong.  So I started checking v. regularly straight away and next thing I know I'm getting readings of HI on my monitor which means its above 35 and a possible chance of ketones, which are very bad. So I started upping my insulin one evening but nothing was happening and several hours later it was still HI so I was advised to go to A&E off to honiton A&E I go, we have a very basic A&E hardly worth visiting but I thought a simple thing such as high sugars would be acceptable to deal with, apparently not. all I wanted to know I didn't have ketonotis but no all I got was a silly reject doctor telling me how to manage my some what brittle diabetes. Not helpful to say the least as I'm pretty sure he didn't even know what he was talking about. Apparently my lung transplant may have been serious but my sugars are more serious, I'm guessing he didn't see the documentary then (laughs to self) Anyway my sugars are still going nice and high and are not becoming much easier to manage despite regular monitoring and careful insulin management, Today I had a massive hypo of 1.9. Very scary, my heart was racing, my breathing felt scary again and all I wanted to do was lay down while I shook and sweated manically, but I had some jaffas and dinner and all was right again.

Which brings me to where I am now, London, Harefield hospital. I did my lung function the other day and didn't reach over my 4 litres that I usually do on my home monitor and as I looked back I realised that actually iv dropped quit a bit over a period of 2 or so weeks approximately 13%/15% not good, I left it over night, nebbed and physios and repeated in the morning yesterday and that when I rung Harefield who said to come to clinic today, so me and my mum made our way.

My lung function was roughly the same as last time I was here but I had gone up since then and it had come down by my home Spiro, my x ray looks good and my chest sounds better than it did 2weeks ago when I started pulmozyn because of hard lumps of flem. But it was decided I was probably due a bronch as I hadn't had one since tx and a ct. So I'm going back in 2mz morning and staying over night for ct and bronch and then we will decided a plan of action, possibly IV's or steroids depending on rejection or infection, both extremely common in early days but must be tapped on the head asap before causing permanent damage and stopping it tapering off anymore of my lung function. I personally think Its infection, I'm coughing alot still and it feel all a bit irritable.

So That's all really I will let you all know whats going to happen. all in all its no big deal and im not worried. In fact think im a little bit lucky as iv got away with out any blips so far until now.

Friday 2 December 2011

I cant seem to reply to my comments but heres my reply.

Hi everyone,

Thank you so much for all your comments, everyone who said they have signed up to the organ donor register, Its extremely encourageing that the documentary has made such an impact.

To the person who said 'lets not forget about the donor family in all this' please be assured I have never for a second forgotten about my donor or there family, I think of them every single day. I have also brought a bear to hang on my Christmas tree in the honor, a small thing, but I'm afraid its all i can do, believe me I have grieved for my donor and continue to do so. If there life could have been saved over mine I would choose that every day but they were already gone, but there gift lives on and I continue to live everyday to the up most full.

I also ask everyone to take a thought for my donor and there family especially this Christmas, this is an amazing Christmas for me, but for a family out there its the first without there loved one. So please take a minute to think of the brave family that allowed me to have this gift.

I have received amazing reception from the documentary, all completely positive. Lots of people saying they are now signed up of going to do so.

If you haven't done so yet here's the link Organ donor register

Iv also been holding organ donation stalls int he run up to Christmas, Iv done 2 so far and signed a total of 113 people, my next is tomorrows. Wish me luck.

Monday 28 November 2011

Love on the transplant list Tonight

Hi my lovelies,

Tonight my documentary airs, 9pm on bbc3, I have to say filming this has been a great experience, I'm glad I have gotten to share my journey through transplant and getting married Stuart. When I started raising awareness for organ donation, I said the next step would be to make a documentary and then it happened the opportunity came out of nowhere and we started filming.

It has followed me through the best part of my life and the worst at the same time. I meet lots of amazing people including Mel Beer director and producer. One of the most amazing friends I could have wished for, I think some out there knew i needed a friend at the time, some one to share the experience with aswell as my amazing husband and family. There she was.

I hope all the feed back from the doc is positive, but I am aware I have laid myself bare and that not everyone is going to like me. That's ok. I know I'm quit bold and outspoken, I have a humour that not everyone understands, but that's also the good thing about me and has led to the love of my husband.

So I hope you enjoy and looking forward to hearing your feed back please also comment on my blog on the bbc, as we are trying to secure a second documentary highlighting the Donors and there family's the most important people In organ donation. we already filmed me attending the donor family network event 'share, celebrate and remember' A amazing charity and a very emotionally event, where I got to think about my donor and hear about the brave and courageous donor family's story's and feed back.

Anyway, I shall leave it there, hope you enjoy, please let me know what you think through BBC BLOG & here

Wednesday 23 November 2011

online friend and when they die

I have many online friends, what does there friendships mean to me, some mean far more then others as with any friendship, but there are those you grow close to share secrets with and talk in depth, connections are made, you talk eachother through the good and the bad and the really fucking bad. But then something happens, they get sick and sicker and then they die.
I have had many online friends die, close ones to, the thing is you feel you have no right to grieve over there death, like the friendship you had wasn't real, but it was it was so real, we talked each other through the good and bad, I thought about you when you were going for you appointments I wished and prayed everything would be ok, We talked about things we shouldn't have had to, but yet i never met you. Was it as real for you as i was for me? Do I have the right to cry for you and break down at the thought you are gone, to wish and pray someone made a mistake.
I say my goodbyes, Mostly in quiet, post a piece or to dedicated to you. But feel unable to say how truely rocked to the core i am about your death. How I didn't get to go to your funeral, how I wished I could say a real goodbye, but then if attending your funeral makes it a real good bye and I never even got to meet you in person then was our friendship ever real.
I wonder if anyone gets what I mean, the lack of being able to share in the grief, you feel like you shouldn't like its not you place to cry, that is for the family and real friends, but I know some of them told me things they didnt event tell them.
Is my grief even real then?

Love on the Transplant list airing soon

Hey guys so as you know my doc is out soon, 28th nov at 9pm on BBC3 heres a few clips

Love On the Transplant list trying on my dress

Love on the Transplant list my wedding

Love on the Transplant list, my husband

and heres a few articals

BBC3 Synopsis

Radio times


also in TV times and reveal this week

Tommorrow night im going to speak at the switching of the lights in exeter and also switching them on, Im ebing interviewed on ITV news for the doc and then for the lights going on.

I hope you all enjoy the doc.

Monday 14 November 2011

My Friend Alan

Id like you to meet my friend Alan

Alan like me has Cystic Fibrosis, Alans 27, married and has a step son. For years alans health is getting progressivly worse, currently on oxygen, unable to work and his life is becoming more and more restircted with regular hospitalization. Over the last year Alan has been assessed and trying to get on the lung transplant list, unfortunatly he alan has been turned down due to a genetic blood clotting disorder, which means alans blood clots to much, meaning they would be unable to attach him on to the bi pass machine. His only option is to go to Duke university hospital in America. To do this Alan hass to raise $800,000 A  hard target to hit.

So please, can you spare a donation, with out this transplant Alan will die. Alans Transplant fund

Thursday 10 November 2011

Juniour doctors seminar

Today I traveled form Honiton to The Royal free hospital to talk 50 student on transplant and my personal transplant experience from life on the list, my decline and going through ecmo and transplant. It was amazing. I'm so glad I did it, I felt i really did it justice and as I got in to the swing of things like I was really engaging with my audience. Maritn Carby, Nonnie Reed and Sarah sterling all said I did amazingly well and I felt truly proud of myself. Its certainly something I want to do more of.

Also seeing Sarah sterling was great, I hadn't seen her since ITU she litrally did everything in her power to keep me alive and also communicated with my family every step of the way. Truly an amazing Dr. We talked about the whole experience again, Ecmo and having to be ventilated and sedated. I asked her opinion on how long she thought I had left If I didn't receive my transplant, something I know the awnser of but Wanted to hear he opinion, she said she thought I had hours left and she was surprised I had lasted as long as I did, but she knew I was just holding on for my transplant.  She remembered being on the phone on the way in the moring of my Tx and the doc was saying He'd just cleared my lungs out but there was alot of blood still there and things weren't good, just as she was about to hang up they said ' oh and theres some lungs on the way' and she sighed the biggest sigh of relief.

She also said she would be happy to be filmed for the next doc in a conversation with me about how things went.

So tomorrows I'm off to collect my new bike A boardmen and then off to Birmingham on saturday for the donor family network meeting, to talk about my donor. Also doing a bit more filming for the next doc.

Don't forget chat came out today and I'm in it, some of the dates and things are a bit wrong, apparently I danced at my hen do, i wasn't able to walk to the bathroom unaided so ummm I don't think so.

Wednesday 9 November 2011

Clinic and gerneral update

Ok so Iv been having a few hiccup with my pseudo, but to be expected. I went to harefield on the 24th and started a course of Cipro, it sort of helped but as soon as i came off it, wham back to how I felt before. I don't feel ill, a bit tired but then I am doing alot, which ill get to later, my lung functions not been greatly affected it did a small drop but its back up now, its the persistent cough, which everyone says sounds like my cf cough, so you can see It got me worrying. I'm also productive but its small plugs of flem that just rattle there all day and are impossible to cough up and when I do they are disgusting. So I went to see my cf doc today, my lung function was 97% fv1 and 91% fev1 which is great, but he is slightly concerned about the sound of my upper airways and its quit obviously getting me down, he prescribed more Cipro and pulmozym a neb which will break up the flem. Iv already raised my mucodine myself, which also breaks up flem but its  a tablet. So hopefully this will knock it on the head. I'm starting the pulmozyn in clinic tuesday as i have to have a trial dose.

Another thing that my mum and Stu have mentioned and I have noticed to, Its hard not to. My memory, It has become really bad, substantially so, I used to know roughly what lessons, class's I had in a day most of the time id be able to tell you exactly know, now i have to make a real conscious effort and even then I forget, I have students randomly turning up and i check my diary and apparently its not so random. I talked about it with my Doc and he checked all my meds for symptoms of memory loss, there arnt any. So the other thing it could be is ecmo and bypass. They believe It may have caused the problem, I suppose you could call it v minor brain damage. Apparently its happens in older people with heart by pass surgery but he hasn't heard of it with young transplant patients, but he did advise me to ask my TX doc when I see them next, but hes going to relay with them anyway. The other thing he doesn't know is if it will get better, so apparently Iv got to get on the wii and do some brain training.

Yesterday we had a meeting to discuss the charity bike ride, we have preliminary dates, the Charity's chosen, LLTGL, EDCF/CFT and Harefield hosp. We have all of my CF team taking part, my doctor is arranging the route as he is a cycle enthusiast, from there we need to arrange stop points, food, accommodation, then from January were holding an open meeting at the RD&E where people who want to take part can find out more. Were going for the more the better and were informing the local authorities so they can sign post the route warning cars about us. So its going to be big!!! Anyone can get involved, if you live along the route you can join us, as long as you get sponsorship. When more has been organised I will update you all.

Tomorrow I'm off to London, Iv been asked to speak at a seminar for junior doctors explaining my journey through transplant and how my quality of life has changed. I'm so nervous, but really excited to.I 'going to write a few questions down to prompt myself but otherwise I'm thinking off the cuff, My director Mel is coming to film as we are starting to film for a second documentary.

Which brings me to Donor family network, They are holding a event where lots of donor family's come and remember there loved one, theres a point where transplant patient's poems ect about there donor are read out, I'm attending to read a poem and piece about my donor and how they saved my life. I think this is going to be extremely emotional but a brilliant event and Mel is filming there as well.

Other then that I have been working out hard, 5 fitness class's a week,  LBT, core stability, 2lots of Stretch and tone, Fitball next week I'm doing 2 lots of LBT, I must be crazy I also do an hour cardio before or after and then one day a week I do a full 2 hour work out. Its going really well, I feel fit and it makes me feel good.

I'm Also back teaching pole, but wanting to increase the lessons I'm doing as I didn't start the charity fundraising job in the end I simply have to much coming up with the doc and charity work, so I'm doing more pole lessons as there more flexible and i can simple ram a load of lessons in one or two days and have the rest of the week free for all the media stuff I'm doing. I'm hoping to do some work experience in PR with RD&E, CFT and a possibly a hospital nr Harefield and I also have some behind the camera work, which My director Mel is arranging. So bizy bizy

10th chat
14th Zest
Reveal date not know yet
bbc news
This morning
TV times I'm presuming the week of the doc

Finally the ball, I have started arranging a ball, for LLTGL The ball is hoping to have some celeb comedians and great bands.

So I'm going to leave it there, I'm still waiting on Stuarts blog, hes finding it a bit hard, but as soon as he writes it I'm posting it.

Monday 7 November 2011

My Donor

When I thought about my donor, the questions that came to my mind were, did they know what the were doing? Did they really want me to have this gift? Would they have chosen me?

This is a very hard subject for me, it is personal to me obviously but something that is far more personal to the donors family, therefore I feel I have to be careful as to what I say, there is a grieving family out there, an amazing family who went through with my donors wishes but never the less grieving all the same.

When I recognised that I had had a transplant, my first and foremost through was my donor, I grieved for them, something that added to my depression at the time of transplant, like I have said in my transplant blog, logic evaded me and all I could think was someone had died to save me, Of course that's not the case, my donor had already been pronounced brain stem dead, but still the pain of there death is with me always. The fact that there death saved my life simply means that only one person died that day, wheres it was going to be two. They had made the selfless act to donate the organs.

Organ donation is suppose to be anonymous, something I believe to be very hard these days, with various facts my family happened to know about my donor, It was made very apparent with the help of media who my donor was.

I know there name, I know the full circumstances surrounding there death, there age, there are things you get to know anyway, but I know some of there hobbies, belief es, some of the things they did and the ideals that we share, I know they were intelligent and caring, I know that they were simply amazing, I know any donor Is amazing, but they were amazing in life and in death. They truly seemed to understand what organ donation means and to me that means the world, It means that they wanted me to have this gift, something i would find hard to accept otherwise.

How do I feel about knowing? The first thing I knew was there sex, this wasn't a particular emotional finding, then came there age, to me this hurt the most, i was only 3weeks post transplant when I found out, what it did to me, I can't begin to even explain, but my mum said she could see the pain rip right through my heart and shes right it really did. After that I took time before I found out anymore, knowing that I couldn't take that pain again and I needed time to heal my wounds. There were things I suspected and when the pieces were put together it was simple to find out who it was and for me I'm simply to curious to let things be, what would you have done in my position? your life had been saved by some amazing person? some one you'll never get to know, would you take that little step more to find out as much about them as you could? Well Id did, i knew my family knew from media at the time so all I had to do was simply google the facts I knew, a there they were, there eyes beaming off the screen. My donor.

I have written a letter to the family, I wrote it 2 and half months post transplant, but I am not ready to pass it on yet, why? I still feel very sad thinking about there death and I didn't even know them, I can't begin to think what there family must be going through. But then I can't begin to imagine when there pain will be any less, Christmas is approaching fast, for me my first Christmas being well, Christmas last year for me was when I decided I had had enough of life as it was and that I wanted to be assessed for transplant, if this decision had been made any later, i most certainly wouldn't have made it. So for me I will be celebrating care free, with my family, friends, making sure they all know how much I love them. For my donors family, It is there first Christmas with out my donor, a painful reminder of what they've lost. So when is the right time? I don't want to leave it so long they think I simply forgot, its something I think about every day.

The one other thing I wonder is, I found them through media,with all the media work I do, does their family know who I am?

Sunday 6 November 2011


Here are a few poems I wrote

Thank you is poem I wrote for the 3 people I could always count on when I was sick, Stu, my mum and my nan. They were there taking me to appointments, understanding my ups and downs and they knew how sick I really was when everyone else was living in a day dream that it was all OK.

 Thank You
Thank you for holding me up when I cannot stand,
Thank you for being here when i am scared and holding my hand,
When i am to breathless to speak,
for being the voice that I desperately seek,
When My walls are falling in on me,
Thank you for holding them up and letting the sun shine in for me to see,
Thank you for being my rock my guide,
Thank you for not wanting to run and hide.

Terminal, What does this word mean to carry around?
A weight so heavy tieing me to the ground,
Trapped and helpless it so heavy to bare
Trapped and helpless a burden I don't wan to share,
To you know I am dying is a hard bullet to bite,
To know I am dying makes me wonder whether to fight,
But I will fight this sentence,
This chain around my neck,
But I will fight this sentence,
I am not dead yet!

The gift of life
Living on the edge of life,
feeling like every breaths a fight,
wishing somebody would take me away,
But somebody saved my life that day,
They gave The greatest gift I could ever receive,
They gave the gift of life and now I breath with ease.

Life was fading
Death lingers around me,
I'm sure I felt its touch,
Everyday was getting harder
It begun to feel like the fight for life was to much,
My breathing was laboured,
My views were obscured,
The light was getting stronger,
Your face I could not see,
Your touch was getting weaker,
Please I was begging you let go of me,
Death started to embrace,
The fight for life was coming to the end of the race,
But suddenly the fight was over,
But death had not won,
I was living my life had re begun.

I don't know you
I don't know you,
I don't know what you laughed at,
Or what made you cry,
I don't know if you had a boyfriend,
I don't know if you ever told a lie,
I don't know if you were popular,
or secretive and shy,
I don't know if you were bubbly,
Or what made you ask why,
I don't know if you suffered,
I don't know if you were in pain,
I don't know why he took you,
What made him take your life away,
I don't know why I was chosen,
I don't know why I survived,
I don't know If had known me would you have chosen to save my life?
I will never meet you,
Or get to know you through and through,
But all I can do is say thank you,
Your my hero,
I wouldn't be alive with out you

A poem i just found in my draft posts
Will life ever be different from this,
I find it hard to see
A life where tasks become simple,
Where I will breath easily,
Things are getting harder,
I don't know if im strong,
My views are becomging clouded,
I can't imagine this pain  ever being gone,
Air being forced in my lungs,
as they become to weak and damaged
breathing seems so simple,
But a task I can't seem to manage.....

Saturday 5 November 2011


Yesterday beautiful Rachael Wakefield was layed to rest. My thoughts lie with her family and close Friend Holly. I always admired Rachael her pure bravery, heart of gold, even through her toughest times she had time to ask how I was doing and we talked over things that neither of us should have to have thought about palliative care, Rachael had been through the palliative care before but luckily got a transplant in time, but sadly her transplanted lungs had taken sever damage through pneumonia and she was facing heart and lung failure and again she faced that dreaded palliative care. She talked things through with me and we talked about our love of pajamas. I missed our conversations, I wanted to so badly to talk about my rehab with her, I remember her saying how hard it was and how she didn't realise how hard different surface were and how out of breath and achy they made her legs. She was one of the only people I thought might understand where I was coming from. Ill never get to share them conversations with her, or simply talk about how much we love pajamas.

Here's a poem for rachael.

Goodbye my friend,
I never wanted that letter to be the end,
I hope you breath easy,
Take hold of my butterfly and let it flutter by,
All the way to heavens doors,
Where all your pain will be no more,

Goodbye my friend,
sending all the love I can send,
I hope its your way I hope It right,
I hope heaven will keep you safe every night,
you'll be so missed I am sure,
We couldn't have loved you any more

Goodbye my friend,
an inspiration A fighter,
You shinned so bright,
you couldn't have shinned any brighter.

Sunday 30 October 2011

Trying to embrace new things even through the negativity

For about 5years of my life I have been extremely under wieght, to the point where when I had my transplant my bmi as fars we know was around 15, I obviously wasn't weight for a while before as I was heavily sadated and hooked up to machines.

I had almost completly stop enjoying food, on me and stus hunny moon in cornwall, we went and had 5* food and I could only eat a few mouthfulls of the steak and was full and struggling to breath more then ever. I was then unable to eat for sooo long after my transplant, another reason for my depression at the time, because of my tracky.

The only time I ate pre transplant would be social events when I would try and scoff as much food as I could. Which brings me to the main subject of this blog, people commenting on how much I ate, saying things like pig, garbage bin ect. I could just about handle this at the time as I was soooo skinny, I knew it was pure jelously, but these comments have followed me over to my post transplant life, I am for the first time in years enjoying food and I realise I am eating quite alot, but my bmi has only just reached a healthy number of 19, this to me feels very heavey as Im just not used to it, but im not starving myself Im still eating a nice amount and continuing to get nasty snide comments.

Im going to the gym nearly every day where iv started a mix of fit ball, LBT, core stability, pilates and strech and tone. I do about 2hours in the gym ever other day. with a mix of Cardio vascular trying to build up for my sponsored bike ride next year and wieghts to get my strengh up to push my pole dancing to the next level. Im also teaching and poling and rock climbing. So I would say Im very very active.

So what these comments are doing to me, they make me feel awful, fat and like I am som discusting being who cant control herself and eats everything in sight.

The one comment I truely hate is havn't your cheeks got chubby, yes yes they have Im on pred, they are chubby.

Well this is the end of my rant, im trying to embrace my new body and slight curves, but how can I do that with this attitude floating around me.

Wednesday 26 October 2011

Love on the transplant list

Love on the tranpalnt list BBC3 28th NOVEMBER 9pm

Please tweet and share on facebook, just because iv done a doc doesn't mean people will watch it.

Midweek Herald

 Old and new lungs

Monday 17 October 2011

Gym, Rock climbing, Media and Grief

I have been training hard, hitting the gym for 2-3 hours every other day. I want to be super fit! I want to be at the top of my game with pole and with life. Im teaching a few lessons again now and poling as much as I can although I defently need a Pole training buddy.

Im also rock climbing now, at least once a week, Iv only just started, but did a course on belaying, knots ect so now me and stu go to our local climbing wall exeter Quay climbing! Its amazing really big, lots of different walls and a self belaying system so you can go on your own if you want. So I brought my own harness the other day Its lilac and I love it. Its so exciting.
A bit of bouldering

I was in the express and echo and western morning news on our nomination for love story of the year int he cosmopolitan awards, If we win we will be attending a glamarous event. The Mail on sunday on my documentry which is coming out on the 28th november and is entitled 'Love on the transplant list'.

Coming up

The midweek herald, Chat magazine, Zest magazing (proceeds to LLTGL), bbc radio devon and talk radio euroupe! exciting stuff.

A moment of shere panic and saddness

As I have said Rachael wakefield is very sick and will not be recovering this time. That with a few other friends who are really sick left me in a state of panic and saddness at the gym. I was working out, sweating and really going for it, I suddenly did a fast burst ont he bike and the tears just came running and running and running. I was i a histerical crying fit. I managed to hid it as much as i could and called my mum over who was 2 bikes away. letting lease my feelings of complete helplessness for all my suffering friends. I just couldn't hold it in. I hate how cruel life is and how my firends are dying around me and I simply cannot do anytthing to help them. I composed myself and carried on after 15mintues but there it was, I can't lye to myself Im struggling with grief and helplessness.

I am off my anti depressants and over all I am extremly happy, so happy its beyond belief and I can't say this out burst was anything to do with coming off my anti depressants. It was just an acumilation of grief, which im trying to deal with.

So life over all is good, but im thinking about all my struggling friends out there, love you all.

Monday 10 October 2011

Life and death

I knew i said Stuart would be writing the next blog but i have been compelled to write, Today I heard Victoria tremlett Is finally getting her transplant after 4years and 3months on the transplant list and 8 false alarms. I have to say I felt shere happiness, she is finally getting her chance, I have to say a i felt a pain of guilt when I had mine and I thought of Victoria who had been waiting longer then me. But finally she is getting her lungs.

Sad, so deeply sad, I have cried and cried, I knew it was coming but it seems that time is finally hear, Rachael Wakefield who under went a double lung transplant after many complications, is now very very sick and will not be recovering. I instantly wrote a letter of goodbye's and went down to the post box in floods of tears and posted it. What do you write when you know someones dying. That your last ever words to that person have been written.

Friday 30 September 2011

My 22nd and A letter to Stu writted on 9th of March

I celebrated my 22nd yesterday and felt so happy to be alive. I went out the weekend before and celebrated in style, something I have been unable to do in a long while. Me and Stu have also been rock climbing, Go Ape and shopping over 3 days. I got lots of lovely presents.

 When I was very sick and on Ecmo and ventilation, heavily sedated my mum said 'you know what to do if you want a kiss from Stu, just pucker up' and we did, I though that was going to be my last ever kiss with my husband. A truly sad moment, I could feel the pain rip through my heart as all I wanted was to be wrapped up in his arms. We kiss every day and I don't take one kiss for granted.

Now here's the letter I wrote to Stu on 9th of march this year, in preparation of me not making it. Stu will be blogging on it in the next 2days, but is currently a little stuck for words.

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,

This letter was written with the thought that I really wasn't going to make it, I did many things like this.

Thursday 22 September 2011

lung function, gym, job and future blogs

Things are going great, I went to clinic last week and my lung function was 74% fev1 and 67% fvc and that has improved each day since iv been home, I dont know what it is in percentages at home as I only have a little hand held spiro. My docs were very happy with evereything and even smiled when i told them I hadn't waited to go to the gym like they said and had been 4 times by that point. Each time I go I seem to improve massivly I did 65minutes on the bike none stop, It was pretty impressive, but me, my family, friends and some of my medical team are doign a 180 miles bike ride from exeter hospital to Harefield hospital. which will be 60 miles a day so i really am concentration on the bike. I also did 10minutes ont he treadmill and 30mintues on weights. I can't wait till I can swim, then I hope to be able to do 30mintues on top of that. From now Im concentrating on upping the levels on the bike, rather than doing more time otherwise ill be there all day. Im also upping my reps and weights ont he weight machines. I will be poling very soon Im sure of it.

I went for a job interview the other day with whiz-kidz a charity that raises money for wheelchairs for children to suit there disabiltiy and needs, it also trains them so they get the full potential out of it and help them socialize. I have got the job and should start in the next month or so. My job is to sign people up to a monthly donation, it sounds quite good and im really looking forward to it. I am still looking out for various other work, especially in a physio therapy centre helping with rehab, I think that would be really rewarding. The good thing about this job is If I want to do other things or find full time a bit to much I can just cut down to part time. But I don't forsee I will have any problems.

I have a few things lined up for this blog over the next few months, such as guest bloggers, which will include other peoples perspectives of my transplant, thsi will hopefully prepare friends and family for there loved on having a transplant. Im also hoping to have a few different bloggers, but cant say at the moment as i havnt had chance to ask them, but I think they will be really intresting to read.

Also the next blog will be the letter I wrote to Stuart in the event of my death, He has read it and said its up to me if i want to put it on here and I think It gives a really good in site to my feelings and worrries at the time. Hopefully stuart will write a blog alongside this, on how he felt reading it and how our lives are now were the other side.

Sunday 18 September 2011

Blank application forms

Sitting staring at blank applications forms, trolling through job advert. What do I want to do with my life, now I have it back. Iv never been good at application forms, they fustrate me and overwhelm me. I have this feeling of going nowhere fast. I know im only 2months transplant, that im still healing, the amount I have achieved is enomous, but yet I hunger for more. I knew this would be an issue with me before I even had my transplant, Im such a driven person that even when I am doing loads I feel like im not doing enough. I want to work and I want to work now. I have a rough idea of what i want to do, but feel slightly lost in the fustration of it all. Who will employ me, when i worked I was self employed, so no ones going to want to hire me and there going take one look at my health  and think im not capable.

This week Iv been hitting the gym hard and its paying off, 40minutes of cardio on high intensity and all the weights machines with higher wieghts and more reps. But I still don't have the strength to pole.

Friday 9 September 2011

THe fun of life with new lungs

Well, Iv been a bizy bee, Throwing myself back in. I want to do everything and do it now. I have a sweet taste of life and I am gorging.

Catching up with many friends, my diary is packed. I have been into Exeter on the train with Kia a few times to meet Stu from work, I went out for a friends birthday, it was one of Stu's work colleagues so I was amongst the guys and the only girls were me and my sister in law. It was so much fun, standing around having a few drinks, toasting to our marriage, new lungs and mikes birthday, with tasty bubbly. But the night was over soon as Stu was off early to work the next day. But It was so fun now i can enjoy it like everyone else.

I walk Kia every day, for ages, through the fields near our house. We play in the kids play park, shes getting very good at agility going up and down the log beams they've set up in there, weaving in and out. I think I might take her to classes, she has a natural ability.

Iv been for meals with Stu, walking around the shops with my mum and mucking around trying hats on.
Then last night I had my niece sleep over! It was great, we took kia for a walk, I did her hair and make up.

Do you think she looks like me? Me and my sister think she could pass of as my child more then my sisters lol. Anyway we had great fun and I'm hoping it will be a weekly thing.

Iv also started gyming and did surprisingly well, 15 minutes of high intensity cardio split between the bike, treadmill and cross trainer and all the different sorts of weights, I'm now allowed to do this and I'm going to the gym and for a bike ride Sunday weather permitting. The only bad news is I have to wait 6-12months before I can swim although, If I'm healed my doc may allow me to do it early.


That's right I feel the need to be doing more, so my plan at the moment is to do some sort of volunteer work, maybe a charity shop, but to be honest I want to be more involved with the actual people who need help. I was discussing it today and I would really like to volunteer in a physio rehab centre for physical disability's, I obviously have to be careful what disability's I work with due to being imuno suppressed. But I feel physical disability's would be a safe area to volunteer in and something I can relate to due to my time rehabing and also my severe arthritis as a child, which i still suffer with on and off but not severely. So I'm on the scout out for something, If anyone has any advise or knowledge on how to get into this then please let me know. I am physical up to the challenge now and can't do nothing for much longer.

Long term I would like to do some paid work for a charity as well as all the free stuff I do. I want rewarding work, I want to feel like I'm helping people. I like the idea of still helping with rehab but possibly working in pr for a charity, as I'm very good at networking and causing media hype, I use to cause a stir in college in the papers and also now promoting Live life and give life as an ambassador and generally getting the word out about organ donation. Which I have been told I will hopefully be going over to advocate soon, similar role, but hopefully i can do a bit more and I'm allowed to take part in socials as theres no cross infection risks. I will always do my free charity work and fundraising. But I need to have some sort of income.

I'm also hoping to re start my business but on a smaller scale, just teaching privately at home to more advanced students, Iv had my time teaching from scratch but I enjoy the challenge of advanced pupils and I only wish to do that as one lesson a day in the evenings and have eventually my paid charity work and free charity work as my main job. Pole will have to be in at least 6months to a years time as I am just not strong enough to teach yet and that will take me a while to re train.

So lots of ideas lined up and a few more in the back of my brain, but I'm not ready to discuss them.

Hope somebody out there can give me a point in the right direction.

Express and Echo and Im also in this weeks TAKE A BREAK

Thursday 1 September 2011

Transplant blog

Well I know its been a long time since I have blogged, but the words don't seem to come easily. Come around from a haze to be told I'd had a lung transplant and all my dreams had been answered wasn't as uplifting as you'd think, I had been through hell and back on ecmo in and out of sedation, ventilated and had a tracky fitted. I had come to peace with the idea of dying and I had prepared myself because transplant didn't seem realistic anymore. I was dying.
Ventilated through my mouth and on ecmo

Still on ecmo but ventilated through tracki. the red tube (blood) is the ecmo which went into my neck on the other side

I had 2 false alarms. Then on the 10/7 completely sedated with my family had preparing for the worse. I had hours left. Then everything changed, there were a set of lungs available Sunday night. My family waited for test after test to come back and right up until I was taken down no one knew If they were going to take the chance on my frail and dying body. 11/7 I received the gift of life.

Waking up confused, in pain and suffering from post traumatic stress from hallucinations and vague memories of my time on ecmo. The idea that id had a transplant confused and scared me. Why was I still being ventilated through my tracky? Why was I in so much pain? Why did I feel so ill and tired? I was scared. It took alot of people telling me I had new lungs for me to believe it. But still I felt so despondent and lost, fear had engulfed me and I still felt like death was lurking around. I didn't know how to get through this, how to build my strength, I was unable to tell everyone how scared I was as the tracky prevented me from talking. I was overwhelmed with the sense of guilt for my donor. I knew before transplant what organ donation ment and the idea was easier to deal with then, I had logic on my side. Someone had already been determined brain dead and there organs were there to save others because that's what they had wanted. But after my transplant logic was lost and all I felt was a deep grief for this brave person who had saved my life and I didn't feel worthy.

I had been ready to die, I had accepted that death was coming, I had even tried to communicate on ecmo that I'd had enough. I never wanted to die, I just didn't know how to do it anymore, I was suffering and I didn't like it. So having a transplant felt like maybe someone else deserved it more because I was so weak and so tired and I had given up for those brief moments. What kept me going? Stuart, My Mum and a visitor I had one day, I saw her in the corner of my eye, standing there, I tired to point her out to my mum and Stu and said 'whos that' there was no one there in there eyes, but the was to me, I don't think it was a hallucination, I think it was my angel Debbie and she was obviously willing me on, telling me to carry on fighting that little longer. Debbie was a CF friend of mine who died at the very young age of 16 after an unsuccessful transplant, I was only 10 at the time, I looked up to her, she was an inspiration.

In ICU after the transplant I struggled to grasp reality. What was real? The terrify things I remembered where they true or some terrifying hallucination. The reality and the hallucination, both were as terrifying as each other and they stopped me from sleeping, I begged to be sadated again just so I could rest.

The next thing the physios were at my door, already wanting me to start my rehab, the thought terrified me, my body felt like a dead weight, like nothing wanted to move and I didn't even have the strength to undo envelopes. What were they going to try and make me do. Sit on the edge of the bed. It sounds simple, but I was found it hard lifting my head how was i going to maintain holding my body up. I had two chest drains in, wires attached, tubes everywhere. this was going to be hard. I reluctantly agreed. they sat me up using the bed, moved drains and wires, slowly the moved me into position, I had to start using my stomach muscles to hold myself up as I Slumped forward. I started to nose dive off the bed, but I was pulled back by the physio behind me and pushed upright by the one in front. We tried again. My sats were still good, but I felt so breathless, I was working my new lungs. I think I was on just high flow at this time as they had weened me off the ventilator, on to cpap then high flow. So we tried again, I straightened up hand down on the bed and I held myself, with little to no support. I didn't feel that happy about it though, now I see it was such a big mile stone, but then it was just baby steps and I knew it would continue being baby steps for a long time.

I had restricted my visiting, I had been so overwhelmed the first day, all I wanted was my mum, I even stopped Stu coming up one day as I couldn't face him, I felt like such a disappointment, I should be happy, I should be pushing myself, but no all I wanted was to rest. I was suffering from being in icu, I had post traumatic stress and I was on diazepam for my anxiety and citilopram an anti depressant. I never thought I would need anti depressants but the trauma had truly shaken me. I felt fragmented and couldn't make sense of things. I finally had a voiceinator put on to my tracky once I was just using my nasal specs with very little oxygen. I talked a little, but then felt to tired to continue communicating, it was really hard just to get the words out. Eventually I talked more and more, but my silence was also because of my depression and despondency. I started to wade through my thought and fears, asking about my time on ecmo.

I had a few more visitors but kept it to my Mum in the morning, Stu in the afternoon and My dad and Step Mum in the Evening. I was still in and out of sleep, tired by doing simple things. I was hungry and I wanted to eat, I'd watch food adverts longingly. We started to introduce water, I tried a sip whilst sat on the edge of the bed, It was ok, It went down the right whole, but my tracky made me feel uneasy and after every time I drank I felt like I had to be suctioned through my tracky, I was worried It was going into my lungs, It wasn't, but I was still very confused.

I started drinking squash, then eating ice lollies. Slowly I was persuaded to try yogurt and soup. Then more solid but still mushy food.

I also stood and marched, I used a zimmer frame, then I was sitting out of the bed, they were all still baby steps, which left me knackered. I needed help to stand and supporting the whole time.

Rehab, i had to learn to feed myself, sit up,
use my arms and legs, walk with the zimmer

They had me on the bike quickly but this smile was a little bit forced,
I hated it.

yes very exhausting, 1minute in with no Resistance, i was very weak. Some of my fav people here. I didn't like my physio to begin with but i wouldn't be anywhere with out her, fantastic nurse as well. helped me through things emotionally as she had had a brain tumour and knew some of what i was dealing with.

My mood was picking up for short periods of time. But I had a catheter and what I describe as a poo bag, these made me very uncomfortable. I developed C diff from the amount of antibiotics I was on. My stomach swelled till I looked 12 months pregnant, if there was such a thing. It was very painful. Making me more uncomfortable.

A week and a half post transplant I was moved to E ward and it was like a weight had been lifted, my tracky was removed, my lungs were cleared a few times by bronch and my breathing was getting easier. The nasal specs were taken away from me and I was breathing on my own with sats of 98-100 something I had never known! I started a slow walk up the corridor and just kept going till the end slow and steady and with my zimmer frame. My catheter and poo bag gone, but the two chest drains stayed with me. I then went outside for the first time in weeks and weeks.


Feeding myself



I then started to move around my room, with out the zimmer until I just decided actually I don't think I need it. walking anywhere got me very tired but once I was rid of the zimmer frame I felt like I was gaining far more energy. Then I decided it was time for stairs 2 days earlier then I was suppose to. Me and Stu went and tackled the stairs.

It took alot for me to get rid of my depression but having a shower and knowing I was going to be out of hosp really lifted me, having my chest drains taken out after 4 and half weeks was amazing, the day before I was suppose to go home, the shower the next morning the first in 6 weeks. I was on cloud nine.

But that day I had a blip about a liter of fluid was sitting between the lung cavity and squashing my right lung. I was devastated. I would have to have another chest drain put in under local no sedation and it was going to hurt, i was shaken like a leaf as they inserted the tiniest pigtail drain, but right into my back. Sleep that night was horrible, I was in agony and unimpressed.

The next day I waited, trying not to get excited, finally I was allowed home. Amazing!!

Stuart drove me out of the hospital, with the documentary team filming. I stayed at my dad for 2weeks with appointments at harefield twice a week.I walked everywhere, building up my muscles, shopping, cinema, seeing family who live in London. It Felt amazing, my breathing just got better and better, the more I walked the better I felt. The aches of rebuilding my muscles killed but I had to push on. The first few week were important I knew that. My reluctance of the first few week was gone and now I was ready, ready to re engage in life, plan what I wanted to do next and think about my list of things to do.

Im now home home, back with my kia and i haven't stopped all week, I even went canoeing. I can't wait to go swimming and start building up my for my charity cycle ride, which I think will be in september next year. From exeter to harefield over 3 days.
Finally to some up the big update, I'm so happy to receive this gift of life, I can never explain how amazing it is each day. It was hard to begin with, but when you get to where I am today you know you'd do it all again if you had to just to get this ounce of freedom, sense of life, I'm so happy happy happy.

Me canoeing with friends and kia.