My thanks for 2015

Well, as 2015 draws to a close, I can honestly say I am truly blessed to have been able to make it to my 25th birthday and also Christmas. None of this would of been possible if it wasn't for my donor and his donors family, and all the hard work that Papworth hospital have done! I want to take this chance to thank everyone who has made it possible.

To all the staff at Nottingham University Hospital Wolfson CF Centre that were there through the worst times I can ever remember health wise, you kept me sane and we're the catalyst in me getting my lungs. You didn't stand by and watch me deteriorate anymore unlike others, you actively forced me through and onto the transplant list and saved my lives so to Dr Dewar and Dr Clayton and your simply amazing team THANK YOU!

To Jas and Debs, and all the team at Papworth thank you for giving me the chance to go into the waiting list and believing in me to change my compliance issues around, thank you for allowing me to see another birthday and Christmas and hopefully countless more, and giving me the opportunity to try for a family, get married (eventually) and live a long and prosperous life!

To my donor and you're family, I cannot put into words just how much you have changed mine and my families lives. You have sadly lost your life at such a young age, and now it is my duty unto you to do the things in life you were destined to do, I am not going to sit back and waste the extra time you have given me! I am planning my future with Emily, and we plan to have children, get married and travel as much as possible, all while working hard and hopefully running our own house! 2016 is a year that I would not have seen if it wasn't for you or your family and now it is my chance to excel and kickstart a career that I've wanted to do for over 5 years! Thank you so so much for what you have done for me. You're families selflessness is beyond words and now I will live my life not only for myself and my family, but for you and yours! Thank you to the stranger I never met who saved my life.

2015 has been a massive year for organ donation and Cystic Fibrosis and both have gained way more media attention this year than any other year in my life i can remember. I hope that 2016 builds upon the attention and we eventually see the opt in system changed to opt out and many more transplant operations going ahead! I know many people who have passed away this year waiting for a transplant, I also know countless that have been as lucky as me and received a transplant, but unfortunately not all of them have had the success I have so far had, and they also are no longer with us. I also know way too many people struggling at home and in hospital awaiting double lung transplants! I sincerely hope 2016 brings the gift of life to as many of you as possible and you all come out the other side and do as well if not better than I have done!

I'd like to thank you all for reading my blog and following my journey this year and I'd also like to say that although I haven't updated much since transplant I will be looking into doing a catch up blog in the new year, it will involve details on my new job and also a challenge I have set myself to complete in 2016.

I wish you ALL a very happy, healthy and prosperous 2016 good luck to you all and I hope your wishes and dreams come true!

Creeping up to 3 weeks

I've been on the active list now for almost 3 weeks, and boy has it been filled with ups and downs.

The day I was listed it felt like a massive weight had been lifted off my shoulders and I felt massively relieved that I was finally active and that call could come at any moment. I was over the moon with the speed at which I had become active on the list as well so all in all I was pretty happy with the outcome.

Unfortunately that happiness was short lived, and within a day or two my happiness and positivity had sunk to rock bottom and I was feeling proper crap! I'd gone from having deadline dates to have everything sorted for to 'wait for a call' a call that could come anytime, it could be in an hour, a day, a month or a year, we have no idea at all when it'll come and to me that's the hardest part to deal with. I am a really impatient person, so to not have a date or goal to aim for is so so hard.

We all know what it's like waiting for a delivery when they give you a window of 8am-8pm and you rage because you want to do things with that day and you joke that as soon as you go the toilet the door bell will go, well imagine being told, you'll get your call, it'll be between now and the day you die..... its a little frustrating to say the least!

After the first week of feeling down in the dumps and fed up with things,I gave myself a kick up the arse and my mood has gradually picked up with regards to waiting for my call.

However making things worse/harder has been the fact that I've been in hospital for what feels like forever,I had been in a week before I was listed and ended up doing a 3 week stay on IVs to no real change in my chest or breathlessness, so I struck a bargain with the team that if they let me leave for 6 days so I could spend time with Emily during her days off work I would return for another 10 day stay for IVs when she flew back off to work and they were happy with that. So I'm now back in after my 6 day stay at home which was amazing! The best 5 days I've spent with Em for a while and it was long overdue! But I'm back in NUH now for 10 days then I'm escaping again so I can spend the weekend away with Em before she jets off again with work!

My consultant has written to the consultant at Papworth to let them know the changes in my health and to let them know I am deteriorating slightly at the moment just so that Papworth are fully upto date with my situation which is good. I call them every other week and let them know how I am and the hospital call them with every blood test result I have to keep them updated with that.

I haven't got the energy or breath in my lungs to wash myself at the moment and I am relying on Emily more and more each day, I'm 24 and I am like an 84 year old with my mobility and health! I struggle to walk 5 metres to the toilet and I have to sit down when I get there to get my breath back, life is getting pretty difficult for me at the moment, I know it may not be permanent but for now it's really draining emotionally and physically. Having to psych myself up to go for a wee isn't something I ever thought I'd have to do at the ripe old age of 24! Life is definately a lot different to how I imagined it but with the power of science and the beautiful NHS I will get my life back and live the dreams I have with Emily and live a long happy and healthy life!

If anyone is interested in signing up to the donor register follow this link and it's literally 2 minutes and you could save several lives!!
http://www.organdonation.nhs.uk

The stranger

You don't know me, and I don't know you, we may have passed in the street, we probably never have, but a selfless decision you've made will ultimately save my life, the life of someone you've never met and never will meet. Someone who may have completely opposing opinions and views on life as you, but you've decided that doesn't matter because your selfless and you want to save lives when yours comes to an unfortunate end. I cannot begin to think of the pain your family will go through when you pass away, but you don't want mine to go through it either so you've offered to help. The thing I can't help thinking is that while I'm writing this your currently doing whatever you do in life, it's 11pm at night, there stands a good chance your in bed sleeping so you can get up tomorrow and go to work to fund the lifestyle you live, pay the rent or mortgage on the house you live in with your partner maybe, and possibly even your children. I wouldn't wish for anyone's life to be cut short, let alone it be cut short for me to live, but I've been told that isn't how it works. Unfortunately you passed away because it was your time to go, but you said that someone deserves the chance to live on with your lungs and I am that lucky person. When that call comes for me, your family will also receive a call or awful news. From your death will come my rebirth, it will be the chance I am waiting for to live my life with my girlfriend. And I will be eternally grateful for you for making thay choice to give me that chance! I don't know you, and I never will, but I'd like to say thank you, a great big massive thank you for the chance you've given me to live my life. Stranger I will never meet, thank you x