Wednesday 29 February 2012

Lung Power, Letter, Doc in america

So Sunday morning I drove to London after 3hours sleep. Yes I’m not sleeping very well, I think it’s down to not wanting to miss a second of what’s going on. Tonight I can't sleep for 2 reasons, 1 my doc is about to air in America under the title Breathless bride Dying to Live and the other is I have badly injured my knee at my first ever gymnastics class. Anyway ill come back to that. So I drove to London for a photo shoot for LLTGL with the lovely Emily Thackeray, lots of fun jumping around a field all day.


No the picture we will be using but one they let me have as it was quit cool and funny.

So anyway from there I drove to my Dads in preparation for clinic at harefield the next day. I was very nervous and was extremely worried I would be keep in. My lung function had dropped by 13% due to a nasty cold that actually had me stuck in bed for a whole day, the first time since leaving harefield straight after TX.

Anyway off I went, I had only brought one pair of knickers I was that determined not to stay in. Got the and did lung function and it was my highest ever!!!! 94% and 104% that’s a 7% increase and 12% increase on what was suppose to be my base line. The previous month I was told it wasn't going to go up anymore, which was fine as it was fab anyway. Now it’s amazing. I’m so happy about it. Beaming I went to leave. On the way out I saw Brian, he’s a doctor I hadn't seen since ITU, lovely guy with a slight Irish accent. I tried to wind him up in my more awake chirpier moments. There was an occasion when he told me he had to look in my eyes at which I replied 'is it because there so beautiful' he replied 'ohhh no it because there’s something wrong with them' he didn't get that I was obviously joking and the whole team of nurse and doctors stood there wetting there selves. He clicked and said that yes I had lovely eyes. Anyway I got to chat with him, I wondered if he would recognise me and he said of course he did, but he was surprised I recognised him! He wasn't the one who had changed lol. We talked over my ITU time, he said he had never seen someone as sick as me and hasn't since. That it would be very hard to walk in to my room when I was so depressed. I said it was hard to have to spend so much time with myself, I couldn't bare how I felt and wished I could have left the room.

We also talked about the time when I was trying to tell everyone I had had enough, He said there would have been a discussion if they had known I was saying that, I’m soooo glad they didn't know. Just imagine n a parallel world they did and they turned the machines off. Maybe somewhere I don't exist anymore. Have you ever wondered about parallel your’s maybe my depression was also me getting over loosing a part of me in another world. Sounds silly but I always wonder. I’m glad I’m in this world anyway and that I am ME.
It was great talking to him, I love being able to show people how I am now and that it partly because of them, that must be amazing for them, right. Knowing you changed someone’s life that much. That is huge. So I thanked him, shock his hand and left with a great fat smile on my face.

The letter, I finally did it, I handed it in. Somewhere my donor’s family could be reading it. I hope it says everything I need to and everything I want to convey. I hope it has just the right amount about how I’m doing with out rubbing it in there face. I hope it shows I feel there lose to. I think about them every day and hope they are OK. I hope my donor is safe in heaven, with all the other angels. I wonder if they will reply. A part of me would like them to, but only if it’s right for them of course. I don't want to be the cause of pain for them. I just want them to be OK. It really saddens me thinking of there lose, of my donor. I have the wish to just fix it, but I can't. It’s deeply frustrating.

I think I will leave the blog there. It would feel wrong to talk about anything else now.

34 comments:

  1. I am watching the TLC show right now and had to look you up---you are such an inspiration and a beautiful girl---I am so happy that you got the transplant and that you have that wonderful husband---it is obvious how much he loves you. I am glad I found your blog---

    ReplyDelete
  2. I am watching your doc and I came on here to find you and see if it has a happy ending. You truly are remarkable.
    All the best for a fabulous future, and good on you for putting yourself out there and inspiring the world.
    Imogen Gough
    canincancer.com

    ReplyDelete
  3. Along with bakekc, I am also watching your documentary and looked you up. You are such a strong girl and I am amazed at your will! Your husband is also so wonderful to you and you two are truly inspirational! I'm so glad you shared your message with people because it is truly heart warming.

    ReplyDelete
  4. I'm watching it. I'm so so happy that they are airing this in the states. We need more awareness. <3 to you

    ReplyDelete
  5. I have been in the medical field for 24 years.. I will be the first to say I pray that the donor family does contact you back.. I am a firm believer in the donor system. A donor knows what they are doing it when they sign saying they want to donate their organs. Its a way to give back, it a way to live on. Its hard for me to put it in words. I am a donor also, if i have something that can save another life then by all means do so. This sounds weird, like I said, I cant put it in words, you are to live on and so is the donor. With you they are still alive and because of them you are still alive. What more of an honor can that be for both parties.

    ReplyDelete
  6. Dearest Kirstie. First of all, Congratulations upon getting your transplant. Second, CONGRATS on your marriage to a wonderful person. I live in the U.S.A and am watching your story right now on TLC (The Learning Channel). It is wonderfully amazing what has transpired to bring you to this point in your life. I must say that it is people with circumstances like yours that made me happy to donate my sons organs when he passed away 14 years ago. You are giving hope to so many by sharing your story. May God continue to bless and keep you always and may you live to be a wonderful little old lady with lots of friends and family around you always. Also, may there always be angels kisses on your cheeks and surrounding you in everything that you do.

    ReplyDelete
  7. I'm watching too... Live life and Smile as much as you can!

    ReplyDelete
  8. You are amazing!!!!!!!! I'm crying watching this show! You are an inspiration and so is your hubby! I look forward to reading your blog and your journey! much love love love!!!!!!!

    ReplyDelete
  9. ditto to all the commenters above
    glad ur doing better and stayin proactive

    you've got a lot of drive and will make big things happen. you've also got such an infectious laugh :)

    don't fret about the hair. there's always clipons, wigs and even perms! haha never know till you try!

    take care Kirstie!
    - alikoh from Toronto

    ReplyDelete
  10. I just finished watching as everyone else above. I have cried my eyes out. You are truly an inspiration for all of us. And your husband? He is an angel sent from above and I truly believe that. You are an amazing woman and god sent him to make your life complete. Congrats on your transplant and I hope you beat he odds and live a long happy life along with your wonderful husband. We're rooting for you :)

    ReplyDelete
  11. Amazing story! I am attending college to become a nurse and I am still not sure what department I want to work in. After watching your story, I hope I get the opportunity to work with patients waiting on transplants. I am so glad to see you are doing so well! Congratulations on everything!!

    ReplyDelete
  12. I too was watching your doc on TLC and I am truly inspired by you. I look forward to following your blog too :)

    Jenny from California

    ReplyDelete
  13. You are an amazing woman with an amazing family. Best wishes!!!!

    ReplyDelete
  14. Kirstie,
    Watching your show here on TLC in the US, and it's pretty inspirational. I kinda caught it in the middle here and I was immediately worried that there was some bad news at the end of the documentary. Very very happy indeed that everything is working out for you. You'll be in my prayers.

    Take care,
    Sam
    USA

    ReplyDelete
  15. Hi! I'm so happy you are doing great! You are an amayzing inspiration :)
    I wish you and your hubby an amayzing long life, full of happiness and smiles. Hard times will never be too hard for such a strong soul as you !
    Thank you for sharing your story, we could all learn from you !
    Tons of love and a big hug!
    Laetitia (new york)

    ReplyDelete
  16. I am watching your doc in the US as well. Wow, what an amazing miracle. I hope the donor family contacts you! Im so happy for you. So glad I tuned in to watch the show. Blessings to you and your husband and your new lungs! Kelly (Indiana)

    ReplyDelete
  17. I am so happy to know that you are doing well! That is absolutely wonderful. Bless you and your sweet hubby. I am so happy for you!!! *crying*

    ReplyDelete
  18. I'm an anesthesiologist on call here in the states and watching your show right now for the second time back to back. Also wiping the tears. So inspirational. Had to find out how you're doing and so glad to see the blog. Have good friend with CF, taken care of ECMO patients and did anesthesia for one lung transplant. Your spirit is the most

    ReplyDelete
  19. You are an absolutly amazing woman! I just watched your story in the USA . I am so happy that you received a new set of lungs and a second chance at life! Life is so very precious. I had a classmate that had CF unfourtanitally she didn't get a transplant soon enough. I am glad that I have looked you up online. Take care of yourself and your wonderful husband. ...Laura

    ReplyDelete
  20. Just watched your story on TLC, how inspirational, had tears in my eyes the whole time! I just had to look you up and see how you were doing and am so glad I found your blog. You are such a beautiful, strong, amazing woman. I'm a nurse and my heart was just aching for you! So glad that you found a donor and that you are doing so much better. I hope your life and marriage will be full of happiness, smiles and joy: you and your husband deserve as much!
    Keep smiling, beautiful!!
    -Jessica (New York)

    ReplyDelete
  21. Kirstie, thanks so much for allowing everyone to learn about you. I too have CF an I watched along with my husband and kids your documentary. I think seeing your story really help my kids understand more about their mom has and what she could go through. Congratulations on the new lungs and also on getting married. I'm so glad you have a wonderful husband who stood by you and supported you.

    ReplyDelete
  22. I had to get on here and find you to let you know how much your story has impacted me....I just finished watching it half an hour ago but i still feel so much emotion...I'm 45 years old and last summer starting giving serious thought to my health and changing my diet..level of exercise..etc..one thing I have struggled with is trying to quit smoking....As I sat here and watched your story I began crying because although your lungs were getting worse your personality,attitude and smile were so full of life.Then I thought about how I am abusing my lungs everyday by smoking and it made me feel so selfish..I thought about my wife, my 3 children(ages 21 to 23)My 5 year old grandson and my next grandson who is due in 4 weeks..I thought about how I am taking my life for granted when someone as young as you may not have a life.....After your documentary with tears in my eyes and an overwhelming feeling of inspiration I broke all my cigarettes and put them in the trash...I thank you so much for sharing your story and I wish you and Stuart a very long life filled with happiness and good memories....I will never again take life for granted....With all my best.......Michael

    ReplyDelete
  23. Kirstie,
    I watched your documentary tonight and have spent the past 2 hours reading your entire blog. I am so inspired by your story. I've spent the past 6 years in medical school and stories like yours remind me why I have chosen this field and dedicated my life to be fortunate enough to be able to help someone one day. Thankyou for sharing your story and renewing my passion for medicine. I will follow your blog from now on. :) - LR

    ReplyDelete
  24. Kirstie,
    I, like the many above, have enjoyed watching your documentary in the US last night. I am a CF patient myself and sometimes I worry about becoming so sick that I may need a transplant too. To see how strong and positive you were right up to the transplant gives me hope that I can do it, too.
    Thank you very much for sharing your story and spreading awareness of CF and organ donation! I will continue to follow your blog and share it with other people to spread the word even more. :-)

    ReplyDelete
  25. Kirstie,
    My husband and I enjoyed watching your documentary in the US last night. Parts of it were hard for us to watch because my husband also has CF. He is 33 and relatively healthy right now. I'm so glad to have found your blog and see that you are doing so well. Thanks for sharing your story and for your positive attitude and beautiful smile throughout the show, even when things weren't going your way.

    ReplyDelete
  26. Hi Kirstie! Your story on TLC definitely touched my heart. The positive outlook that was portrayed by both you and your fiancé is inspiring. My bestie was diagnosed with lung cancer this past year. While watching your story, it was hard not to think of her and the struggles she has been through. Like you, she has a positive outlook on things. I just want to wish you and yours the best. Thanks so much for sharing your story.

    ReplyDelete
  27. Kirstie,

    Thank you so much for opening up your life and struggle to ignorance (like a comment above), scrutiny, increased awareness AND, most importantly, inspiration!

    It was a difficult watch, as my son has CF, but it is what I needed to see...hope and strength. My son has done well over the years, despite his DeltaF508 genotype, and I often try to ignore CF. We just 'do' without thinking too heavily on how hard his fight is, now or in the future.

    I pray that your documentary makes more people aware of others' battles and those with CF. I pray that they pick up their cells or jump online (as I did, looking in on how you were doing now) to find out more about CF and how to help. Research is getting so close to better treatments and almost a 'fix'. We just need the support to continue to fund their efforts.

    God Bless and know that you have made a difference. You are inspirational to so many. Continue to live life to the fullest!!

    ReplyDelete
  28. kirstie, I really enjoyed reading that blog and I hope you can get some rest.

    Harry W

    ReplyDelete
  29. Kirstie, I had to respond by email to you, but wanted to write publicly as well. You are an amazing beautiful woman, blessed beyond measure! I am 50 years old living with CF and just wanted to encourage other readers out there either living with the disease or know someone with it. I just celebrated my 50th birthday in DisneyWorld with my amazing husband. God is good :)

    ReplyDelete
  30. Kirstie, I watched your documentary on TLC last night and I haven't been able to stop thinking about it all day today. Unfortunately, I fell asleep at the end, and was so bothered by not knowing how you were. I even asked coworkers if they had watched it, with hopes of them telling me the end. Unfortunately, none of them had watched. The funny thing is that all of them wanted to know what it was about. So, I gave them the rundown of your story and when they asked what happened to you (end), I said I didn't know (fell asleep). I handled the names they called me quite well! :) None the less, I'm So happy to find your blog tonight, and all went well for you.. Your beautiful smile and optimistic comments throughout your struggle were so inspiring. You are amazing. Best wishes to you and your wonderful husband. He's quite the champ also! He definitely made many of us wives wonder if our husbands/fiances would do the same for us in similar situations. So happy for both of you...best wishes!

    ReplyDelete
  31. Kirstie

    I watched your show last night and I just want to say Thank You. Seeing what you have gone through and are still able to smile has made me think that what I am dealing with is not that bad medically speaking. I wish you all the best of luck and congrats on becoming an Aunt!! :)

    ReplyDelete
  32. I watched your show twice (it aired back-to-back), and I watched it because I read several CF blogs. What a wonderful young lady you are, what an inspiration! Much love to you from Vancouver, BC

    ReplyDelete
  33. This is great blog you have here. I just become aware of your blog through google,nice site!

    ReplyDelete
  34. Hi!

    Your show is about to air on the first of July here in Sweden. I'm looking forward to see it, just because I live with CF as well. I haven't read all your posts here, but I did understand that you got your transplant and that's great for you! I'm just wondering if you like/or are willing to let me send you some emails with questions? And hopefully you'll answer them. I find it interesting to talk with people from other countries, and also people with CF so you're a perfect match. ;-)

    I wish you all the best!
    /Sofia, Sweden

    ReplyDelete