For those of you who saw me on Russell Howard, I just wanted to say thanks for coming and having a read and all your positive messages and thanks to Russell Howard for putting me on the show, being on Good News means that my message has reached a whole different audience and getting many more people thinking and talking about organ donation, if you would like to sign the organ donor register then please click here it takes 2minutes to do, but you could be giving the gift of life. Also please tell your family your wishes! If you don't but have signed the register, it could all be a waste of time, if your family don't know your wishes they have the right to say no to organ donation.
My lungs are full, full to the brim of thick sticky mucus, as i breath i can feel the huge rattling effort of my lungs trying to expand. Things feel different this time. Just when you think you've got use to something things change. Every now and then i get up out of my bed to get something of the side and I'm sent rebounding back as iv forgotten about the nasal specs around my face and the drip stand attached to me 24/7. I'm scared to walk anywhere, scared to make my lungs work, I'm scared of the consequences and the feeling of gasping for breath and the panic that comes with it. So I haven't I haven't even tyred to walk to the canteen this time, the toilet and the shower room are as far as iv made it and even the shower room was a very reluctant effort as I'm not in my usual side room the shower room is quit far away. My oxygen saturation's are overall worse and i have been wearing the oxygen alot more. I feel like things have been deteriorating so quickly recently, I wish I could just freeze time, make it all stop, but i can't so I'm holding on to the one hope that will stop this all in its tracks, a transplant.
Hi, like many others I saw you mentioned on Russell's show. Firstly, you are the most positive and bravest person i've seen in a long time. Keep your hopes up.
ReplyDeleteI was wondering what your transplant actually involves in terms of being based on blood type and other factors which determine what donated organ you could take. No-one should be facing what you are going through.
If you could reply back to my question above i'd really appreciate it.
Hi joseph, Well when matching a donor to a recipient there are lots of things to think about. The person has to be around about the same height so the lungs fit the chest cavity, If the donor was to big the lungs wouldn't fit, then theres blood type as you mentioned, tissue type, and antibodies. All of these things have to match to be a successful match, other wise the recipient will go into rejection. Hope this helps if you want to know anymore then please go to www.lltgl.org.uk
ReplyDeletex
Hey, thanks for the link. I've been on the donor register for the past year. With the severity of your condition, is live organ donation possible?
ReplyDeleteKeep the faith, I suffer from muscular dystrophy which also effects my breathing and my muscles. I saw your story on Russell Howard and I felt the need to comment. Things happen and we just carrying on and even me with my own illness also felt bad for you. I know from being sick that sticky mucus is awful. I do hope you get the doner you need, I'm sure someone with a heart will step forward. A beautiful young deserves a good long life. If you want a friend my e-mail address olliewalsh1989@hotmail.co.uk
ReplyDeleteHi I saw your story on Russell Howard and was really interested to read your blog. Thank you for giving us a true insight into what living with CF is like.
ReplyDeleteYou seem like a really strong and brave person, dealing with so much more than your usual 21 year old.
I hope you do get your transplant and that all your dreams come true.
Looking forward to reading more of your story. Take care. xxx
Kirstie,
ReplyDeleteLike a bunch of others, I saw you on Russ Howard's show, and was absolutely heartbroken by your story. A lot of us retreat from the world in times of pain and illness, hiding our changes from others. It takes great courage to do what you're doing.
Beyond just wishing you luck for the future, I wanted to say that if you hoped to open people's eyes by sharing your story, you can already chalk this up as a victory. The strength and hope you bring to your struggles is an inspiration to us all. I can't even imagine the difficulties of showing such resolve and dignity when times are hard and life is so unfair.
On a more personal note, I'm getting married this year as well, in the summer. Best wishes to you and Stuart when you tie the knot, and good luck on the big day.
As with most others on here I just caught up with Russell Howard's show on iPlayer
ReplyDeleteI knew when I applied for my provisional license I would join the organ donor list as I feel the same as you in hoping to give something. I really hope you get the transplant. You are such an inspiration of strength, hope and living life to the full. Will definitely be following your blog and the best of luck to you and those on your journey. xx
After seeing you on Russell Howard's show I did some reading about Cystic fibrosis. Dont you only need one lung ? Read many stories about people living with one lung. What blood group are you ?
ReplyDeleteI think you look like Anna Faris, shes the blonde girl in the scary movie films lol :)
Hope you are well today
x
Jason Edwards
Wow hun, what an amazing response from a few minutes on a TV show!! So pleased to see the work you are doing on organ donation being recognised and reaching a new audience. You are truly awesome and a very inspiring young lady! I'm so lucky I get to work with you and feel honoured to know you and experience how lovely you are (except when I have to wake you up early for treatment!!)
ReplyDeleteJust wanted to add my good wishes and wonder at how brave and lovely you are. I too saw you on Russell Howard and it brought home to me how lucky I am both with my own health and that of my family. I have friends with CF children, now in their 20's, and have seen what a difficult disease it is to live with and see loved ones with it. I hope you get the transplant you so desperately need and get the chance to live a long, healthy and happy life. You have made me rethink my worries about going on the donor register.
ReplyDeleteAs with a lot of people I heard about your story on Russell Howard's Good News and I was amazed at your strength. I wish you all the best and want you to know how inspiring you are to so many people who are suffering and how much good you are doing by raising awareness through this blog.
ReplyDeleteI look forward to reading more of your story, all the best, stay strong, keep hope xxxx
Hi Kirstie,
ReplyDeleteI just wanted to tell you that, from the bottom of my heart, you are honestly one of the most beautiful, strong and brave people I have ever seen. You're an inspiration, I can't tell you enough.
Amy :)
Hi Kirstie I saw you on Good news on Thursday and your such an inspiration no doubt about it. You are such a strong person and i doubt i will ever meet anybody with your strength and determination. Im so glad i found out about you because your an example to everybody to just keep fighting no matter what. Ive been coasting for years just doing the minimum work required to get by and being generally lazy at everything, you have definately struck a chord with me with this blog i have to take inspiration from you because you are a true role model to everyone. I am definately going to keep reading your blog. Keep fighting
ReplyDeleteTom :-)
Hi my name is Josh, I am 19 and I suffer from cystic fibrosis. Seeing your story was for me such a nice refreshing change from many of the portrayals of people living with CF that have been in the news recently. It felt amazing to see someone who holds the same attitude as me, to both life and to dealing with the CF. I find it hard as people simple cannot grasp what CF truly involves as we don't have bandages wrapped around our heads and for much of the time we get treated exactly the same as outwardly we seem, in many ways to be healthy. I had to leave uni today to come home as I am about to start a course of iv's although my friends know about my health and many of the things that it involves, they have been shocked at how quickly and badly my health has deteriorated. Seeing you on Russell Howard's show has made me both sad that people are so reluctant to donate their organs and that people like you are suffering for this, yet it has also have such a positive impact on me as I feel you are making such a huge contribution for all people suffering with CF and you are trying to save so many people in the future. I truly hope I never loose the ability to love life as you so obviously do, you are an inspiration for everyone. I wish you and your family every possible happiness. Thank you x
ReplyDeleteHi Kirstie,
ReplyDeleteI'm a coach and work with people looking for answers in their life and trying to make positive changes. Crikey do you put things into perspective! I love your attitude and am sure your positivity and zest for life will see you through.
Michael
Hi Kirstie,
ReplyDeleteAs with most of the other people commenting here, I saw your story on Russle Howard's show.
I just wanted to add my best wishes to those already given, I honestly hope you get a second chance because so you clearly deserve it.
Stay strong.
Your story made me do something I have intended to do for a while, join the Organ Donor List... unfortunately my lungs are not exactly up to par thanks to asthma, but hopefully you will find the person to give you your life back,
ReplyDeleteMy thoughts go out to you =]
Hello,
ReplyDeleteAs a lot of people above, I saw your story on Russell Howard's show and I was moved by your strength of heart and your will to have your voice heard. You are a true credit to your family and I hope that you have a fantastic wedding. You deserve every happiness life can bring.
I know an 11 year old boy who needed a heart transplant and he got his just before christmas. It saved his life and because of that one little life I joined the organ website. Knowing him and his wish for life changed my life just as you willl have changed other peoples.
It's my 25th birthday tomorrow and my birthday wish will be that you get your transplant just as my christmas wish was for that 11 year old to get his new heart.
I wish you all the very best!!
Dear Kirstie
ReplyDeleteI was alerted to your blog through my friend Emily Thackray, having seen you both on Daybreak and then by her posting the link to your group. Thank you for allowing me access.
Rarely in my life have I read such an emotive diary filled with frank, powerful descriptions of what life is like for some people. Your blog was such a an eye-opener - I've read it in it's entirety this evening. You are one inspirational lady and I am rooting for you in your hopes for a transplant.
I would like to know if there is anything I can do to help the cause of CF sufferers and if I'm allowed to link your blog on my own FB?
Both myself and my partner are organ donors, but we are both in agreement about putting our children on there too.. in fact, I have no idea why I didn't put them on it sooner. Ignorance I guess, as is the way for many people who take for granted how easy life is and how horrendous it is can be for others.
I want to wish you all the luck in the world. Thank you for being such a trooper, for sharing your story, and for making me see things from another perspective.
I will be following your story with interest,
Best wishes to you and yours,
Leah x
Thank you everyone for your messages, your kind messages and thoughts mean alot to me.
ReplyDeleteLeah please do link my blog to your fb.
x
I just saw you on russel howard, i wish you all the luck in the world and congrats for when you get married, i know it will be a stunning day. keep strong lots of love xxxx
ReplyDeleteHi Kirstie,
ReplyDeleteSaw you on Russell Howard's show, and you are such an inspiring person. Pushing on through what you're going through and carrying on with your life as you are; I can't imagine how you manage it. You're an amazing person and I wish you all the best. I registered on the organ donor list a couple of years ago; my parents had a bit of a problem with it, until I explained to them exactly what you said on the show; if my death brought life to others, then it's not a complete loss. I registered just before I was going to have a serious operation on my spine, as it gave me comfort knowing that if something happened to me, maybe it could have helped someone like you. I really hope everything works out for you soon, keep strong xxx
Hi, I saw you on Russell Howard also. I wish you all the luck in the world. I really hope everything works out for you. You're an inspiration. xxxxx
ReplyDeleteSaw you on "Good News". Couldn't help but admire you for being so brave and optimistic considering what you must be going through. Stories like yours help me put my own health issues into perspective.
ReplyDeleteI hope you have a long and happy life and marriage.
Hi Kirstie,
ReplyDeleteSaw you on the Russell Howard show too. Have been reading your blog today. I am sending you postive thoughts and prayers for strength. Good Luck and best wishes for a speedy transplant and a happy marriage.
Carol, California, Usa
Hi Kirstie. Wow!.What a brilliant blog :-). As you mention, getting airtime on Russels show is a fantastic oppertunity to spread the word as to how so important and potentaily life chamging being an organ donor is :-). Well done, and the best of luck to you for the future. Andy
ReplyDeleteHi Kirstie,
ReplyDeleteI found the link to your blog on Russell Howard’s good news twitter account. I read it all the way through tonight and you are such a strong person! I don’t think I’d be as strong and positive if I was in your position! I have often thought about going on the organ donor list but I have issues with my blood and don’t know if my organs would be any good.
I wish you all the luck in the world with getting your new lungs and I pray you get some soon. I feel helpless not being able to do anything to help you!
You are an inspiration to everyone around you Kirstie. I hope you get to have a ‘good day’ soon! You deserve it and Congratulations on your wedding!
I will be a regular reader of your journey and wish you all the best!
Andrea x
Hi Kirstie,
ReplyDeleteWatched you on Russel Howard and your story brought a tear to my eye. I wish you all the best and wont take life so granted when there are amazing people like you who dont deserve what you have to go through x
Hi I saw you on Russel Howard. Found your blog. Then I pledged to donate my organs on death.
ReplyDeleteThank you for telling your story. I used the share function to link your story to my facebook wall, and I will ask my 4 children to sign the organ donation form.
Your story is truly life affirming.
ps My daughter Amy ran the Nottingham Trent Univ pole dancing society this year. She's now stepped down to concentrate on getting the best grade of Psychology Degree she can. She wants to work with children eg Ed Psyche or similiar.
My thoughts are with you and I wish you all the best. Thank you for sharing.
Paul
X
Hi
ReplyDeleteLike a lot of people I saw you on Russell Howard's show; and I have to say first of all fair play to him for taking a few minutes from a comedy show to show something serious; if it helps get people to become organ donors(as I am sure it does) then it's a credit to the show and to you for your story and your positive energy; it is really inspiring and I wish you all the best in the future and wish you a long and happy marriage x
Hi
ReplyDeleteLike many of the people posting on here, I saw you on Russell Howard's show. I'm currently on placement on a Paeds Respiratory ward and your story reminded me why I wanted to go into medical field.
You're inspirational and hopefully one day soon that gift of lungs will arrive,
Keep strong Emma
Hi kirtsy,
ReplyDeleteFirstly, congratulations on setting the wedding date :)
I also saw you on Russel Howard's Good News. I started reading your blog and just couldn't stop. You are an amazingly honest and upbeat person and, well I really wanted to thank you for sharing your experiences.
My mum has been ill and in severe pain for over 10 years and until I read about the 'spoons theory' you mentioned, it occured to me that inspite of being with her every day and seeing her at her lowest times, I could'nt even begin to fathom how much suffering it caused her,doing the smallest everyday tasks.
So again, thank you. I will keep the spoon theory in mind (I am training to be a nurse - so it should serve me well.)
Stay strong and keep blogging cos you're a great writer!
Praying that you'll get the transplant soon.
Best wishes