Thursday, 3 January 2013

One Fallen

I never want to be the person who focuses on the negative. I like to be the positive, optimistic and happy person that I am. I don't enjoy bad news, and in fact, would love to bury myself under the covers, hiding away where it can't find me. 

But the fact is, transplant is scary. I've never been scared before. CF didn't scare me, transplant didn't scare me. I pretty much felt immortal. Doesn't make sense, but that's what it was.

Post-transplant is a whole new world. I feel as though I've woken and I've been shoved (willingly, yes) into this new life of 'what-if's' and 'be carefuls'.

There is so much unknown, so much can happen. I no longer have Cystic Fibrosis in my lungs...however it is still in the rest of my body. What has essentially happened, is that I've traded one lung situation for another.

Being a transplant recipient, you are immuno-suppressed. This means that your immune system is compromised and you can easily pick up anything going with little to fight it with. Pre-transplant I didn't worry about germs, bacteria, etc. I didn't shy away from those with colds or other bugs, as believe it or not, I didn't get those "normal people sicknesses". (Instead I went straight to pneumonia or another lung infection.)

Now, life is 100% different.

I will be the same Jess. I will laugh at myself, and you...always you. I will constantly talk myself happy. I will continue to focus on the good, the fact that I have been given the gift of extended life, the fact that I have an unwavering support system, the fact that I am the luckiest person in the world because all of you. The fact that I am being followed by the best medical team in the world for lung transplants.

However, I WILL be scared. I WILL be cautious. And I WILL NEVER forget that this gift is both truly precious and precarious.

Not everyone makes it out okay. Not everyone is saved. That is the gamble. Transplant comes with risks; if it was perfect, there would be no questions and no fear. 

I woke this morning to some horribly sad news. It's not supposed to work like this. This is not supposed to be the outcome.

Please pray, send positive energy & thoughts or whatever you can do in your own way to this family.

Or copy and paste this into your address bar: http://kellystransplant.wordpress.com/author/kellystransplant/

Kelly had Cystic Fibrosis, and like me, waited for a life-saving double-lung transplant. She was a fellow blogger and I've followed her wait for lungs while waiting for my own.

Kelly went into surgery on December 6th; one week prior to my own. Kelly did wake up post-transplant and therefore did have some special moments with her loved ones, but unfortunately her health took a turn for the worse.

Kelly had complications immediately and fought long and hard to live. I took comfort in reading her blog, as our stories were so similar. Cystics have a kind of bond that can't be explained. I felt like we were waiting together and I always opened her blog with anticipation that she had received her call.

I am determined more than ever to live life large and go at it with abandon. I will live for the both of us.

Kelly will never get to breathe, stand up, walk around, play, laugh, sing, dance or do any other number of truly amazing things with her new lungs. She will never experience life while breathing easy, she never got the chance to meet her new lungs and put them to work.

I can do that for her.

I never met her, but I believe that doesn't matter. I will treat mine as though they are also hers; as though she is living right beside me. I will give her each experience, let her feel what I feel and breathe the way I can now.

Each day with these new lungs is supernatural. Every step forward a revelation. Now, I won't be alone on that journey.

I will never stop advocating for both Cystic Fibrosis & Organ Donation. I warn you now - it is my life's mission. CF takes too many lives. Organ donation saves lives. It's simple. I ask you to join me.

Don't stop the conversation.
Spread the word.
Don't be afraid.
Be proud.

Thank you for reading. Thank you for considering joining me in my advocacy. Thank you for making me less scared.

Love Jess

35 comments:

  1. Beautiful Jess. I am so thankful that you are doing well! I don't think I could take a 3rd friend.....

    Keep on kicking and fighting! <3

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    1. It sometimes surprises me just how attached we get to each other, without ever meeting in person. I meant every word...

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  2. Beautiful Jess, what compassion you have is felt by all who read your blog and know you personally, your friend's family will most definitely be in our prayers. Looking forward to reading your blog and advocating to others to become a donor. Our family will make your desire one of our goals. God Bless from now – Lee and Gladys.

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    1. Thank you guys. We can shake things up; make a difference.

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  3. Sorry to hear of Kellys passsing. I understand your fear of the what if's and be carefuls being shoved at you.I myself was diagnosed with a rare illness a few years ago.It is uncureable and research states 19 in a million would have this.Being immuno suppressed can be scarey at first, but I learned not to be scared anymore but how to deal with it.I am sure I have the cleanest hands in the county.Each morning that I wake and can draw a breath in, put my feet on the floor and move ahead I thank God for the good day.Life is not the same as it was but I am thankful for all the things I can do even in my adapted way.I have followed your blog for many months now.This has given me great strength and courage as following your difficult journey has made me realize that my problems are insignificant next to yours.Keep smiling, be happy and do all you can to stay on the road to recovery.Keep up the great work Jess,you are a strong and beautiful person.

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    1. Thank you for your story. It reminds me of why I write and reach out to all of you. You've also given me a boost of courage. I'm grateful.

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  4. Jess, each day since you've been living AND breathing Toronto air, I have been thinking about you and your support team. I send all my positive thought vibes your way. I am very sorry for the loss of your friend Kelly. My heart goes out to her, her family, her friends and her community. I wish you all the strength you can muster to live for Kelly, for all your fellow lung-comrades AND for your self to keep "living, laughing and lunging". Love, Catherine Voysey Fourdraine

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    1. Thanks Catherine. I will do all three :)

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  5. Jess, there must be so much emotion going through you now! I read your blog and have goosebumps everytime! I want to sit and cry, but at the same time I want to sit and say "praise to the Lord!" Such a beautiful life and soul has been given another chance at being in this earthly world! It must only mean that God has more purpose for you to be here! Your time has not yet come! There is more for you to do here! It's obvious to see as you have already done so much for those here on this earth. All of us have a purpose, but your's is clear! You have already made your mark and have had an impact! Clearly there is more for you to do here! Your time here is far from over! Bless you child! You are truely precious! You have fought so hard! I believe you are an angel of God, sent to send a message, sent to keep us humble, sent to help us to believe that there always is a tomorrow! ALWAYS! Thank-you Jessica Carver! You are an inspiration! You are an angel of God! I want to say more, but I know my words cannot portray how I feel! God will always be with you! Because of the person you are and the soul that you have I believe that you will always live your life full of love! Bless you child! "Love and live" and "Live and love"!,....a NG resident who thinks you are a pretty awesome gal!



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    1. I don't know what to say; you are way too kind. Thank you from my heart.

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  6. My heart bleeds for you, Kelly, her family and her friends!!
    I want to say for all these months together, and for all the love, laughter, tears and joy we have gone through, I love you to Pluto and back, always and forever. Thank You for being my lung buddy, and I know our future is both exciting and scary, but we have that chance and we will never be alone on our new journey.
    You will always be amazing to me - Love you lung time
    Retta

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    1. We definitely will never be alone. I'm so happy to have you and the rest of our Breathless friends. Love you.

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  7. Hi,Jess When i read your blog this morning(one fallen).I immedietely got scared(what has happened to jess),not thinking of the many family,s going through similar situations. I,m truley ashamed of myself. My thoughts and prayers go out to Kelley,s Family&Friends Although Kelley,s fight for life is over,her gift of vision she left for another is truley a wonderful gift.I know in some way you will carry on Kelley,s fight. I,m soo proud of you, and Jessica it,s ok to be scared sometimes for i think it makes us stronger,keep up the good work in your recovery and take your time . Love Always and Forever Aunt Heather

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    1. Sorry to scare you Heather. Thanks for your support. Love you and miss you lots.

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  8. Jess,
    When I was speaking with Kristy yesterday I told her that I've also thought of my Little/Big sister as a Hero! I want you to know how true that is! As I read through some of the other comments from people near and far it once again proves how much you touch people and how strong you truly are! I'm so proud to call you my Sister and feel so lucky to have you in my life! I'm so sorry to hear about Kelley and I feel for her family. I love you and althought sometimes it feels like your fight is a never ending one..you are the perfect match for it and will always come out on top!

    Lil Sis ♥

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    1. I love you so much. I'm so proud of you and I really miss you.

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  9. Thinking of you Jess! Sending you love and big virtual hug. Hope to see you soon.
    Craig

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  10. such a pleasure to meet you today jess.
    You were so brave, calm and kind to the staff.
    I will follow you along for your recovery, and you
    come visit me when i get to PEI>>!!!
    Deb RN

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    1. You were so awesome Deb...and Terry too! Your team can insert a chest tube into my body anytime! ;)
      I can't wait to visit on the island!

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  11. Very well said! Your blog is such a joy to read! I'm so glad your doing well and keep up the good work!

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  12. when John read me the blog tears were rolling down my face. we take every breath we take for granted while so many struggle. i knew something was up with you yesterday while we were typing. so sorry to hear about Kelly and how she lost her battle. She lives on in those 3 lucky people that have received her organs. John and I are always worrying about you but we know with your positive attitude and that kick ass smile you will fight on. hugs and kisses to you and will see you soon. xoxoxoxoxo

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    1. I'll hopefully soon be busting out of here to once again reign over St. James Park!

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  13. Have been following your journey and wanted to pass along what someone once told me, Anyone can give up, it's the easiest thing in the world to do.But to hold it together when everyone else would understand if you fell apart, that's true strength. I tucked loads of love and good wishes in the mittens I sent at Christmas and have signed my donor card! Thank you for opening my eyes and heart just a little wider!You are amazing!

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    1. I love the mittens!! I was really touched when I opened them. What a kind thing for you to do; it put a huge smile on my face. Thank you for your support and an even bigger thank you for signing up to be an organ donor!

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  14. Jess, the way you face down your fears is a constant inspiration to me, and a reminder that we all need to keep our perspective in line with reality. Those little things that get in the way of us living life joyfully are just not worth it, that knowledge makes it easier to just let go of anger at that driver that cut you off, the pedestrian who while texting stepped out on a red light, the clerk who got the coffee order wrong, I am reminded that we choose our attitude, each and every day we draw breath - I choose joy, I choose kindness and I choose you!
    Behave Bodaciously & Cause Change Chicklet!

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    1. Oh please, I learn from you. You give me a lot of strength and I'll never know how to thank you for always being here for me. I love you lots and lots.

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  15. I have been following your blog since you were profiled in the Chronicle Herald. It is wonderful to see you receive your amazing gift and how much you are doing to spread the awareness of the importance of organ donation. I am so sorry about the loss of your fellow "Cyster" As someone whose daughter was diagnosed with cancer at 22 months and then again at 14 years (unrelated tumors--sort of like winning Lotto 6/49 AND Lotto Max in the same week!), I remember losing a child with the same diagnosis as my daughter and how many emotions it brought forth. It's scary and it really forces you to look at where you're at on your journey. Add the fact that you've just received a new set of lungs and I would imagine you've had quite the week. Like you, my daughter is a tough cookie, kicked cancer's butt and is now at university. As a result of her tumors she can't be a donor of any kind, but her father, sister and I are all registered. I will continue to keep you in my prayers.

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    1. Yay for your daughter! Such a fighter! Thank you for commenting; thank you for letting me know you are an organ donor. Finally, thank you for your support :)

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  16. Hey You!

    This is an incredibly beautiful tribute to a friend. To a friend you’ve never physically hugged. I have friends like this too – you are one of them… We share such an incredible journey, and when one of us takes a turn down an undesirable path sometimes it sucks-holy-hell. And then we’re forced to move on.

    I hear about “survivor’s guilt” – and I’m sure that plays a roll. But it’s not just that. I don’t feel bad because I have all of this amazing stuff and you don’t – I just feel bad because you don’t, or you didn’t get all I have… I see someone as precious as Kelly struggling – sometimes never getting the gift we’ve received… Sometimes getting it, along with a cascade of complications she cannot survive… Sometimes keeping it for a few years and running into a wall. Sometimes I wonder how many years I have left – and I wish I could give her half of them. But it just doesn’t work that way.

    You wrote a truly beautiful post, Jess – it’s a tribute to Kelly – and a tribute to what it is to be part of this CF family, or transplant family. And it IS scary. And it IS precious and precarious. And the fear never goes away – it just hides – even from us sometimes. And years from now people will see your smile glowing and ask how you are, and you’ll reply “FREAKING AWESOME!!!” But somewhere inside, you’ll be worried about that tiny dip in your spiro, or that mild belly-ache, or that spot on your neck. But they’ll never know it – they’ll just think you’re amazing with the strength of 10,000 men. (And they’re not completely wrong…)

    And the fear keeps us on our toes – and we have so much and so many to live for – or maybe because we have so much to live for… There is a beautiful family, and their loved one, whose lungs you breathe with – we do it for them… There’s Kelly – and a thousand like her who have crossed our paths, and didn’t get everything they might have gotten – we do it for them too… There’s B-Rad and my princess and our families and the close people we do actually hug – we do it for them… And you’re right – they do make us less scared.


    I never, ever imagined I was going to live this long. And I never, ever imagined that I would feel this good – that I would breathe this easily – that life would be this easy. To get two freaking AMAZING lungs as a gift from a beautiful girl and her family over 12 years ago… Then to get a kidney last year, from someone who had her arms around my lungs when they were still breathing for the girl who gave them to me… I too made it my mission to tell the world about the girl, now two girls, who saved my life and to advocate for organ donation, and cystic fibrosis. I’m proud of you for also taking up that torch – but I kinda imagined that was part of your make-up…

    Sorry it took me so long to answer this – thoughts like this, expressed so eloquently, really hit home. Thanks for taking the time to get this down… You take care, Jess – I hope you get your fat feet out of their soonly… Love, Steve

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    1. Steven, you have to stop making me cry. You write so beautifully and always, always know just what to say. I just can not wait to meet you!

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    2. I can't wait to meet you too... This has to happen someday... I have to haul my fanny up to your wonderful country, or you have to come to Chicago. I don't have a bucket-list, but if I maintained one, spending some time with you would be on it... Love, Steve

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