This is Kirstie's mum writing on her blog to let everyone know whats been happening over the last 3 days !
Kirstie went back into Exeter hospital on Thursday by ambulance, struggling to breath and not able to get off her bi-pap. Early Friday morning I had a phone call from the Nurse to say Kirstie wanted me there as she had had a bad morning and was struggling.
When I arrived Kirstie was in pain and not looking very good. The consultant Chris Shelden came into see her, after talking with her and giving her morphine to make her more comfortable, a decision was made later to air lift her to the transplant unit at Harefield hospital to give her her only chance. We thought that chance had come late saturday evening, but unfortunatly we were told three hours later that although the lungs matched they were to big, not Kirstie's turn, but maybe next time. Kirstie will remain at Harefield for now until a suitable donor is found as they can give her more time. Despite everyones dissapointment she remains up beat and optimistic. Hoping the next blog is the news we are all waiting for.
Thanks for the update Linda...Thinking of you all pretty much all the time at the moment... Here's hoping the next call is the one that is right for Kirstie xxx
ReplyDeleteThinking of you all. X
ReplyDeleteI don't know Kirstie personally but please send love, i'll be praying for you and thinking of you all X
ReplyDeleteI've been following Kirstie's blog since it started and though I don't know her, i feel priviliged to have found it.
ReplyDeleteI hope you're okay Kirstie's mum, can't imagine the worry and I hope Kirstie's feeling more comfortable and fingers crossed for good news. x
I remember the same feeling as you get that bit closer. You feel like, wow, it could happen for me. I'm glad she feels strong about it and hoepfully it will be her turn soon. Thanks for updating :-)
ReplyDeleteI have been reading Kirstie's blog for a while now. I hope that she gets that all important call soon. My thoughts and prayers are with you all. x
ReplyDeleteI'm a donor in the uk with my practice, how do I see about helping out Kirstie?
ReplyDeleteHer story makes me cry with sadness (at her condition) and joy (her strength and courage)at the same time. I just really want to help her get the same chance of life as we all have. Not only that but what i really, is for Kirstie to marry that man of hers as well!
So where can I find out how to check for compatibility for transplant for her?
search facebook for Liam Burge (in scotland)
Wait, I just read she got married to the love of her life. Well done girl! =)
ReplyDeleteBut it still stands, now updated on the donor website thing. x
Hi Kirstie been thinking about you lots and I am sitting tight with my fingers crossed praying that you will get your transplant.
ReplyDeleteLove, hugs and kisses xxxx
Kirstie you don't know me, but every morning one of the first things i do is log onto here to see if you have got that call you so need. You are in my thoughts and prayers, I really hope that your chance comes soon. Katie
ReplyDeleteI really hope you get the match you need soon, the optimism and stength shown is amazing xx
ReplyDeleteAll our love and thoughts are with you. I know your new lungs will be found very soon. Keep on fighting kirstie.
ReplyDeleteLove to your family too. Thank you for the update.
Xxx
I've started reading this blog after seeing it on a mutual FB friends wall. Keeping you in my thoughts, you looked so beautiful on your wedding day and I really hope that a donor is found for you so that you can acheive all the things you want to on your new lungs list.
ReplyDeletexxx
praying 4 u kirstie and thinking of u
ReplyDeleteHi Kirsties mum - thank you so much for taking the time to update her blog. How proud must you be of your beautiful daughter, she's touched so many lives. I truly believe she will get her transplant - She's not hanging on there for it not to happen and now she's in the best place to get that chance. Hopefully with all the campaigning and raising awareness for transplants this week, her chance will come.
ReplyDeleteI would just like to send you, her new husband and the rest of her family and friends the biggest (((HUG))), as it's not just Kirstie fighting and hanging in there, you guys are too. Keep strong, but also be kind to yourselves and allow yourselves some down time too.
Keep believing!
Sue xx
Wishing for you all, Kirstie deserves a chance x
ReplyDeleteThank you for updating us, this must be so awful for you all but there are so many people waiting for news. I've been following Kirstie's story for a while after seeing her on a mutual CF friends Facebook, and you all must be so very proud of her. I hope my daughter grows up with Kirstie's fight and spirit (she has cf too). Thinking of you all and hoping so so so much the next call is THE call xxx
ReplyDeleteSaying prayers for Kirstie. I'm a 52 year old CF patient from the states who has been following Kirstie's story for a while, and will be saying prayers to St. Jude tonight, he's always been there for me. Kirstie WILL get her lungs, and I hope she has a long, happy marriage. I'll be married 24 years this Oct., and I wish that and MORE for Kirstie and her husband!
ReplyDeleteThanks for the update, best wishes to Kirstie x
ReplyDeleteEveryone is constantly thinking and praying for you Kirstie and family! You're doing so well staying positive is the key, will keep reading and awaiting the good news Kirstie! xx
ReplyDeleteI only recently saw Kirstie on 'Russell Howards Good News'. Kirstie is an inspiration, and like everyone else i pray for you Kirstie. Stay strong and positive! xxx
ReplyDeleteGosh I am so sorry to hear that, I do hope that Kirstie can get some respite for her pain and symptoms and willing everything that's good in this world to give her a new life and in the arms of her family where she belongs. Sending big warm hugs with lots of hope and positivity that a match is found soon. :) x
ReplyDeleteKirstie, maybe you need new lungs but you are not lacking the heart department, you stick in there sweat heart! I am looking for a new personnel trainer!
ReplyDeleteI recently became aware of Kirstie through the media and have since read some of her blog entries. I would just like to say that I wish Kirstie all the very best and I hope she gets her transplant. For what its worth Kirstie changed me forever, she has almost single handedly restored my faith in not only the human race but my faith in something greater out there, something that I believe sent Kirstie to this world to remind us that we are capable of true greatness.
ReplyDeleteNamaste
Morning Kirstie,
ReplyDeleteHow are we doing this morning? Just taking it steady I suppose. Congrats to you and your husband (lucky man) on your marriage. So you are at Harefield, My Nan was there around twenty five years ago, you are in good hands. I recommend the poached eggs, spinach, on bagels and a nice latte for breakfast, I can't remember what they have for lunch! Keep your breathing at your pace, control it. Also, not that I could see you are the type to frown, keep smiling (turn that frown upside down). Have a good day'
DT.
Hi Kirstie, I'm Di and I am Liana's Mum (you would know about Liana from the BBC3 transplant filming with Mel 'Born Survivor' they were filming Liana too)... I just want you to know that we are right with you, waiting for a transplant is very hard, we know that, but you are brave and have so much fight in you. I always tell Liana, "one day this will just be your history, your story to tell", and I know that this will be the same for you. God bless you, always in our prayers... Can't wait to hear that you have your transplant...
ReplyDeleteHuggs xxx Di
I used to do gymnastics with your sister and I remember her talking about you when you were a little girl. I can't begin to imagine how hard this is for you and your family but you are amazing. I hope if I ever have to face anything like this in my lifetime I will display the same grace and dignity that you have and continue to show. I look at the strength you have with awe as I sit here in tears reading your blog. You are a true inspiration who has done amazing things for organ donation. You deserve your second chance at life, God bless you Kirstie and your family, I'm praying for that call and a long and very happy life for you and your new husband, God speed for those
ReplyDeletenew lungs xxx
Hey Kirstie,
ReplyDeleteMorning Sweet heart, How are doing this morning? Did you go for the Poached eggs Yesterday? Be good if you or Mum could blog, just to give us an update. My thoughts are with you. I am a believer that you can control your organs. With muscles, as you know you can develop them. Why not Organs? I am not saying, do not need new lungs, that is out of my hands, that donor is going to come! But for the mean time, let your mind stay positive, that will work on your sub-concious. I have always stayed fit, worked on the outside, but for 3 years I did not drink and smoke and do any drugs. In that time my inside (organs) felt amazing, I trained them. A lot to do with the power of the mind. Never under estimate it. Stay busy Kirstie, Net, read, iplayer. I would like to say, anyone who blogs on here, keep up the positive energy please. Believe me, I have shed a tear for you, but from now it is just forward thinking - POSITIVA BELIEVER! Have a good day' look forward to hearing from you,
DT.x
Willing some suitable puffers to come along very soon. Thinking of you all from a pwcf xx
ReplyDelete