Organ Donation Week 2017

So organ donation week started yesterday Monday the 4th September! 

As many of you who follow my blog know I am a trustee for the charity Live Life Give Life! So not only is the week special to me for my own personal reasons but our charity do a lot to be involved! We have  launched our new campaign "I can't live without you" which is based around the story of Paige who talks about her sister kayleigh who sadly died in a skiing accident and saved 3 people's lives! 

To find out more please visit www.livelifegivelife.org.uk 

To see the full video and the campaign! 

So yesterday I started organ donation week bright and early for a interview with BBC Surrey Radio at their studio in Guildford at 7am I feel the interview went well and hope it encouraged people to sign up and speak up to their families and loved ones about their wishes 

This year the theme is about talking to your next of kin! Last year 49% of families refused to donate although their loved ones where signed up because they didn't know what they wanted because they hadn't had the conversation! Imagine the lives they could have saved if only they had had that conversation before the traffic time came. 

Mental health

So I've never been one to to talk about mental health, desperation or anything of that sort, before my transplant I didn't believe in depression as much, I thought it was more for people to overly use for having a bad day/week/month. 

But since my transplant a lot has changed, for me I understand it more! Leading up to my transplant I was fighting so hard to stay strong, alive and with it I refused all drugs that would "help" my mental state because I knew (thought) I could do it all on my own. 

But Suddenly you have a transplant and all of that is taken away from you! Like you have gone! Being strong isn't about staying alive anymore, it's about fighting the constant battle in your head, for me this is a life I have never known of nor do I still sometimes accept! But I've been talking about it more recently and it's become to my attention that yes I do feel a slight depression. Weather it is drugs related as most of my drugs side affects are depression, anxiety and becoming a fatty! Ha 

I've been on a drug called citalopram since a week post transplant due to panic attacks and anxiety through the roof! And my god did it help so I've been too afraid to come off, I have since upped my dose, and wonder if because of how low I have felt recently weather I need to talk to the Drs about upping it again although this is something I wouldn't want to jump too! 

It is also known now the more people are talking about it the better I feel, I am not alone. Everyone is assumed to have a transplant and your life be amazing again! Unfortunately that's what we all like to portray because in a glimpse we do! We have great lungs when willing! Freedom from hospitals a little more than before, but they are so right, your swapping one Sent of problems for another and depression is a big part of this! 

Yet we are made to feel guilty for talking about this now! And I feel we need more help, more support and the stigma to go for people to be content post transplant! There is a lot they don't prepare you for! 

Separation from relying on so many people around you was one of my first problems, although I jumped at the chance of people independent at first, it hits you after! 

Constantly feeling weak! Exhausted and fatigued! That doesn't go away! And feels a massive strain on you. 

Rejection worries, they are constantly on your mind despite what people do or say! I have seen too many friends slip away so quickly from it! 

And the guilt, two types, the one that you feel for your donor and their family, and then the one where your other friends or people you know who are waiting or don't get the chance! You shouldn't feel it but you do, and it can't be helped!

So as we end mental health awareness week I felt I wanted to share some hidden thoughts that do go through my mind and what I feel like I am constantly fighting against, some days I don't even want to get out of bed or wash, I feel like there is no point, but I've realised that it's ok to have day like this, as long as I fight back the next! Life is still and constant fight, just now with my feelings and emotions in my head! 

Thinking

As we all panic tonight as whatsapp is down, it's given me the time to give my head some thinking space, I use to always blog at night in bed when my lungs were so weak I couldn't rest to sleep so writing was my escape!

I often think back to those years living life, well not living but surviving, that's the best way to put it, I was always one to make out or make myself think I was living my life as best I can and I did well most of the time, but what I was really doing was surviving!

Recently I've had a cough, you'll prob laugh reading this, but post transplant this scares me, it's not a touch on life before but it's been chesty and productive and it scares me, all my results are good, bloods, lung function and x ray. Yet I still have this on going annoying chesty cough!

I haven't had this since transplant, I barely cough these days only out of old habit, so it worries me, the first thing I think of is are they missing something, could it be rejection, and I try to tell myself to get a grip and stop being so dramatic but I can't help it, I feel like life is on precious time for me now, even more so than before which makes no sense! I think because these aren't my lungs I have no control over them as I use to with my deadly old ones!

My head is not rational at all at the moment, im constantly sleeping which doctors don't know why that is either, i feel so tired and fatigued all the time, yet thankfully everything is perfect results wise! But then why do I still feel something is not right!?
I try my best to not make a fuss unless it's something I know is a big deal but I'm stuck with this one, do I trust that the results are fine and listen to the Drs or do I continue to bag them and go with my gut instinct that there is something not 100%

I'm rambling on but that's tonight's thoughts oh also I've been diagnosed with osteoporosis and recently had an infusion to help with that! Just another thing to add to my list! :)

New boobs

I feel the need to blog as it has been forever and I'm hoping by sharing this part of my journey/life that people will understand and won't judge me on vanity! To be honest even if you do, I done what I did for me and to make me happy, because let's face it that's the most important thing in life is to be happy! 

I also want to help others in my situation! 

So 4 weeks ago I underwent breast augmentation! 

Now automatically people will think, so shallow, wants to get her boobs out show off etc etc! And don't get me wrong I love them and love showing them off now!

But to get to this point I spent the last 15 months being so unhappy with my boobs! 

Now I'm not one to blow my own trumpet but before my transplant I had great boobs! Perky! Great size for my little frame! In the right position! It was one of the things I was proud of! 

But not so much post transplant. I'm not sure what happened! The most important thing was my life was saved of course, but they were left a completely different shape, size, position most importantly! And quite frankly once I recovered,I was devastated by it! I felt so unattractive, my little perky perfect boobs had turned in to old granny's boobs which had somehow had an argument with each other and majorly gone south!

Now there's lots of issues post transplant that I feel and find we cannot openly express or people feel they can't talk about them without being judged! I don't give two fucks, it's life these are real issues and yes they bother us woman! We have dodgy boobs and get fat after tx! 

The only good thing body wise is I have a bum now but even that needs to be worked on or I get something called cellulite which I've managed to escape 25 years of my life until transplant. 

People reading this must think what a brat, you have new lungs you can breathe be thankful, and my god! I wouldn't change any of this for my life before because yes I can breathe I'm alive and my life is incredible, but why be penalised for feeling like this! If I was a normal woman with issues no1 would think twice! But because I've had a transplant I shouldn't be able to complain and the comments are always "just be thankful your alive" but what be alive and feel miserable...NO! 

so I'm proud to say yes I got my boobs done, and yeah I will show them off because I can breathe and I can feel or try feel sexy again! 

And I want to help others. Just because you've had this second chance it's doesn't mean you shouldn't feel bad about complaining, also I found it so hard to find a surgeon willing to perform the op on me! But after a few consultations, I found a man! Well he found me after I put a plea out on a plastic surgeons forum! And I had it done at Spire Portsmouth Hospital! 

Thanks to harefield both my consultants were so supportive and gave them all the information they needed and the hospital was great! 

So if anyone feels the same and is having the same issue don't hesitate to contact me! 

The only thing was I did have to pay! I could have tried to get it done on Nhs but you don't know what it will be like and it's not easy and I'd spent so long feeling like this I just wanted them done quickly! 

So the surgery itself was easy! I mean I've had a transplant so a few silicone boobs whacked inside me is nothing! And it really was, I came down after the op smiling!

So the plan was, to have teardrop implants to make them look natural, have a size 415cc however, as it's me nothing goes to plan in surgery! 

I was told the day after, during surgery where he would make pockets to fill the implants into, I already had pockets from my transplant, so he had to make a decision to give me round implants a slightly bigger size to fill the space, also because of that I couldn't have the teardrops as more likely to turn!! (Wouldn't be a good look!) I was happy they made me feel better and anything was better than before! 

Anyways so I'm really happy now with them, just need to work on my weight and stop eating everything in sight and get back to the gym as since boob job I've been out but time to get my arse back into gear... literally!!

Here's so pre and post transplant pics! There still healing now but I think Ive gone from a 32C to a 32G 

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 😜

 

 

mind fixing please hold!

 

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!  

 

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

www.livelifegivelife.org.uk