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

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

digiguide

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.

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

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.

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.

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?

Poems

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
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,
suffocation,
My views were obscured,
Hallucination,
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.....

Good-bye

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.