Monday, 13 February 2017

Me And Donor Family Video....


So instead of writing a bg long blog ive just done a little video to sum it all up however I am going to add some photos f the lovely hotel we stayed in down in hatherleigh and some of the studios on tv!






So here's some pics! 


 
 
 
 
 



sarah and I at the NHSBt meeting for LLGL
    

 


 

 
       
Such beauts ha 😜
 
 

Saturday, 21 January 2017

BBC2 TV and NHSBT meetings

This week started off being so busy and continues to into next week!

As I work for the charity Live Life Give Life we regularly get media requests come through to my fellow trustee and friend sarah as she is the PR & Media Trustee. She had a request from the BBC the other day to which I gave them a call on behalf of the charity. As I was spending the day doing LLGL work I was available to sort this out and see what was needed! We all are volunteers for the charity so everyone has their full-time jobs they have to deal with as well.

On the show, they were featuring an incredible lady called Tracey Jolliffe who had very generously donated one of kidneys to a total stranger and plans to donate part of her liver! Not only that but she has also signed up to be a stem cell donor, she regularly gives blood and over 80 pints and has donated her eggs 3 times!

Alongside this story they were looking for people to join the panel who had received an organ from a total stranger. I expressed how I was happy to help as it was such short notice for the next day and that my fellow advocate for the charity Andrew could attend as well!


So the plan started going ahead. We were back and forth in contact all day, it was on then off then on and then off, they wanted a living donor, which lungs fr obvious reasons cannot come from a living donor! Then they wanted egg donors, and blood donors. It was a bit unclear.

By the end of the day, and when I say the end im talking like 8pm that night they had decided to stick with myself and Andrew they couldn’t get anyone else in the time frame they had! Last resort haha

However I believed this would be a great opportunity for our charity to be promoted along with organ donation so I am fully behind it, That’s why I do the things I do!

 

Here is a few  pictures of me on the the Victoria Derbyshire Show BBC2! 

 

Myself and Advocate Andrew Whitby 

 

In the green room.

 

Yeah I was there ha 

 

 


 

 


52 mins in, Was only a short snippet and typically I couldn't hear well, was so quite in the studio and everyone spoke to softly! 

http://www.bbc.co.uk/iplayer/episode/b088sfzc/victoria-derbyshire-17012017



It was a great experience and loved seeing the background of what happens in a studio. 


So that was a great and uplifting to do. 


The I went to work for the afternoon. And after the show the BBC radio wanted someone from our charity to do some radio interviews for drive time which are fabulous advocate Carla proudly took the honour of doing and done an amazing job as usual, all our advocates and team are fantastic!

So that was Tuesday...


Then Wednesday myself and fellow Trustee Sarah had a brilliant and successful meeting with the NSHBT. We met in london off oxford street at a blond donor centre. 

 

Firstly I was fascinated by that as I have never been to one as I unfortunately cannot donate, I'm a taker in this situation! 

I just wanted to go up to everyone waiting to be called to give blood and thank them for being amazing! 

Anyone who donates anything in my eyes are wonderful amazing selfless people! And it shows that humanity are still great despite some flakey people haha. 

 

So once I got over my overwhelming moment of wanting to hug everyone we were Called up and met 3 wonderful lovely members of the team and we spent hours chatting together Sharing information, and hoping to work closely together with our charity! So it's been a very positive week for Live Life Give Life in that sense! 


Been a busy old week, My tummy constantly keeps playing up but my diet change has helped! Lots more to that, I have visited Frimley hospital recently to do tests and book future tests to check for lots of things one I had a blood test for was celiac disease a genetic blood test they can do I'm told, so hopefully I don't have that! 

And further tests are being booked and should happen within the next 6 months! Going to be a productive year for that stuff now I'm settled after transplants need to get all the little bits sorted or helped at least that were irrelevant before! 


I've lost 12 pounds whoop go me!! No carbs is helping and lots of gyming with my gym buddy tor!! Bring on the summer body hopefully! I do miss potato though!! 


My next blog will be all about this weekend and spending time with my donor family again! Sharing our story!  


 


Sunday, 15 January 2017

My Donor Family- The Meeting

This post is very personal to me, but like my blog I have always shared my personal journey throughout my transplant, pre-and obviously now post op and always kept it as real and honest as I can!
However, I do have a habit of leaving things longer now to post, this doesn't mean I have nothing to write about, in fact it is quite the opposite I have so much going on in my life there is too much to write and keep up with!
 
So, before I get into the serious talk.
 
I Had a wonderful xmas and new year!
On boxing day my hubby took myself and the dogs to a lovely log cabin with a gorgeous hot tub and we spent a lovely 4 days there with beautiful crisp cold air reaching my lungs and lovely walks daily with the dogs followed by a cheeky hot chocolate in the afternoon and some prosecco in the hot tub in the evening! The cabin was gorgeous and had heated floors which one of my dogs Archie the baby discovered it was amazing to lay on the floor (this is not a usual whippet trait) so it was a lovely break away for us all together and well needed!
 
New year we spent with one of my best friends and her family at a lovely tapas restaurant locally and greeted the new year in very happy, merry and drunk haha
 
This year I have lots of plans it has already started on a high and this is why…
 
The MEET!
 
Now I have to say, I feel like the luckiest girl in the world to not only have been given the chance at life by my amazing donor Gill, but I have now had the pleasure of meeting her loved ones, her father of 93! And her two daughters Natalie and Hannah! And wow I am honoured! They have all been so kind and generous to me! Given me so much information about the lady who saved my life back in August 2015! And welcomed me into their family as such.
It almost feels like we have known each other forever.
Gill was 51 when she sadly fell asleep one night and never woke up again, she had always been a keen organ donor and carried her donor card in her purse! She signed up not only once but twice to make sure she was listed and her wishes were met!
 
As this is my blog I am not going to go into detail about the family. But express my side of the emotions.
 
I understand that in the uk there is a lack of recipients who have received an organ that write to their donor families, and this upsets me so much.
When I wrote my letter 3 months after my transplant I never intended on a reply, but my life had been transformed so much it just made sense to say thank the people that gave me that chance and to let Gill’s family know just how much this lady means to me and always will. I was just 25 years old and not ready to die but my days were running out, and without this lady and her families consent, I wouldn’t be writing this blog here today!
 
So I had arranged to meet Natalie one of the daughters back in December and I was so nervous and excited at the same time, we had exchanged a lot of messages over facebook and she made me feel so comfortable and relaxed but I didn’t know what they would think of me, would they like me in real life? Would I be what they expected and would I be good enough for their mum.
I had all of this in my head. I got out the car as I was walking to where we had arranged to meet, my heart was beating faster and faster and I became so nervous and shaky, my mum was with me and kept telling me to relax and said I'm sure they will like you as they wouldn’t want to meet me, but of course my mum would say that, she's my mum!
 
We bumped into Natalie whilst walking in as she was about to get something for her little one out of the car, and was like ahh hi and couldn’t stop smiling, caught off guard and then we hugged! She then brought me over to where she was sitting with her two children and her granddad (Gills Father) and I got very choked up and teary when I saw him, I can’t imagine how he must have felt.
 
We got some drinks and two hours later we were still sat there learning about each other, knowing more abut Gill and it felt so special.

This is us together (we didn't plan the background fyi)

 
After the meeting I came away feeling quite emotional, but in a vibrant positive way, the heartache for the family but the fact of how special they all are made me feel so warm and like proud of everything, this is what makes organ donation so incredible.
 
So after meeting Natalie her grandad and the children I couldn’t wait to meet Hannah!
Hannah is the youngest daughter and lives quite close to me- in fact about 15-20 mins away!
 
We had arranged originally to meet in January after xmas as life was crazy busy and wanted to have time to get to know her as much as Natalie.
But we had quick hug and a little chat before xmas as I was shopping in the town she works in and after meeting Natalie it felt wrong to not go and say hi (I obviously asked her first and wasn’t a stalking weirdo who turned up at her work)
Then a few weeks ago we met properly! I felt so much more relaxed than the first meet but still obviously nervous, I didn’t want to say the wrong thing, we are completely flip sides of this! But like I have said and don’t want to over use the word so it had no effect but seriously these ladies are amazing! Gill must have been a great woman if she has brought up them how they are!
We spent hours chatting, she was telling me so much about her mum, showing me great photos of her growing up, Hannah really looks like her too! I just remember sitting thinking I cant believe this is happening, how honest she was to me about everything and how much information they gave me, they have all given me so much I never In a million years expected to have this.
photo of myself and Hannah

Gill was such a life person from what I have been told, full of life, great granny, great mother, daughter and wife! I feel very privileged to have such a great donor and it makes it feel so real even more so than from the day I woke up after the operation.
Not only I am doing this for myself now, I intend to carry on and live the fullest life I can for Gill!!!

To Sign up for Organ Donation please visit here www.organdonation.nhs.org

 
 

Friday, 16 December 2016

Kirstie Tancock- The Final Goodbye!

 

The blog no1 ever wants to write or read, but a true reflection of life and the world I am surrounded in. 

I remember the first time I heard of Kirstie, it was after  my transplant referral had been sent off to Harefield. We were hungry for information and knowledge about transplants and esp as she had CF  and that's exactly what we found in Kirstie! 

We found her blog and it was just as her programme "love on the transplant list" was about to be aired on BBC! 

I couldn't wait to see it, I wanted to know everything, and wow I was defo thrown in the deep end with her story! 

After that and following her blog like I'm sure many others, I had Alot of questions I wanted to ask too! This was just before my first assessment and I was so nervous and freaking out about it all. I was 21 and dealth was heading my way! 

So like I did back then I contacted Kirstie via Facebook inbox, wasn't expecting much as I knew she would probably be inundated with messages, but she replied to me, and after some back and fourth messages I felt she's the type of person I could get! Just connect with! There's wasn't any bullshitting with K but was beyond supportive!! 

And that's when Kirstie Tancock came into my life and will never leave me!! 

Kirstie had been so supportive to me and we became good friends, she was one of the first people to visit me after my transplant in hdu and she lite up the room even though I felt like shit! Haha she made it all feel so normal all the bits no1 warns you about she told me how normal it was and instantly put my mind at ease about the start of my recovery! 

I remember before the transplant I once found out I had anti bodies and started having a melt down thinking I would never get lungs to match me now and she rung me up straight away on her way to teach a pole class and told me it was all going to be ok, she had really high anti bodies for her second tx and yet she got the chance. 

She always had a way of making a bad situation good, and I will always admire her for her strength of that! 

You think facing death would be one of those things that no1 could accept, but Kirstie not only accepted but she taught it a lesson!! 

Today was a true reflection of that, it was the first funeral I have been too (and I have been to ALOT) that I can honestly say it was absolutely her funeral, it's like she was in the background with a speaker in everyone's ear saying right you next, do this, do that! 

And in true Kirstie style she performed and shined! 

From start to end the funeral was amazing? Is that weird to say that? I was in uncontrollable tears and in fits of laughter! Her coffin was beautiful with pink and aqua fading clouds with black silhouette of tinker bell and the kids from Peter Pan flying holding hands and in writing it said "F*** this world, I'm going to never land" 

It made me laugh and cry at the same time! 

Her little baby dog Kia was also at the service which brought me to tears. She cried and barked at parts! 

The people she wanted in the chapel were given gorgeous butterfly's to wear for us to sit inside. 

And the programme for the funeral was planned out perfect. As you can see in the pics. 
 
 
 
 
 
 
She had live singers, her own written poem, and her lovely sister read out bits, and her amazing husband Stuart was brave to read something from him too. 

All in all very emotionally day! But something I felt honoured to see! And only Kirstie would have an itv reporter run the service and a live stream of the funeral for people to watch! True Kirstie style!

She then also had a pole dancing performance and singers at the wake and news reporters! 
I have to say it was very unique but she would have loved it! 

There aren't enough words to say how amazing this girl was and always will be tonne and so so so many others. She done so much work raising awareness for so many good causes! 

She also taught me that pole dancing isn't just for strippers! And actually it's a beautiful art form and incredible to do! 

We will continue the work she started and her legacy will live on! 

We won't stop until organ donation is the norm and people know everything you need to know! If it wasn't for organ donation her life wouldn't have been saved twice! And thanks to my donor I wouldn't have even had the chance to know her and meet her and have a friend!! 

She spoke to me about the end when we were in hospital together, but I always hoped it wouldn't happen this soon, we all have a sell by date but Kirstie seemed untouchable! 
 If I have learnt anything from Kirstie is to live your dreams and continue to set yourself goals and don't be afraid to push yourself! 
Life is for living we aren't just here to exist!! 

It was also lovely to spend the day with my mum, we dressed up in pink for Kirstie! 

 
 And to spend the day with charlotte and hannah and to meet the lovely Sophie.

 

To watch the live stream for 7 days of Kirstie funeral, here is the information. It will need to be watched a computer or laptop. 

to watch the service via the internet.

Www.wesleymedia.co.uk

Go to webcasts

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