The main questions I’m fielding: Is Caitlin feeling better? Is Caitlin still in the hospital or is she home? Caitlin is not feeling better, and is not going to be better until after transplant. Her pulmonary hypertension is severe and contributing to her high oxygen needs. In addition to her nasal cannula, she wears a mask that simultaneously delivers extra, high-flow oxygen. It’s hard for her to do anything, as she gets breathless and quickly loses oxygen saturation in her blood. She needs a lot of help to do basic things, to move from the bed to the chair, or to shower—a shower is a half-hour, 2-person effort. And a wheelchair ride off the floor, which she and I did alone and fairly easily 2 weeks ago, had to be done very slowly yesterday, with four oxygen tanks and her nurse accompanying us.
At this point, she will remain in the hospital until transplant.
I didn’t post about last week’s offer of lungs until after it was a no-go, because we knew from the start that there was a good chance that the lungs wouldn’t be viable. That turned out to be true. (Only 1 was viable, but we learned that a man in desperate need of 1 lung received it on Thanksgiving.)
These are the days we dreaded might happen. It hurts and alarms us to see her struggling. She is in a constant state of nausea, discomfort, and the anxiety that comes from the inability to take a deep breath. But she is in the home stretch. She is a top priority with the transplant team here and they are one of the best.
Thank you, everyone, for all the prayers you are directing her way. When we think of the network of friends and friends of friends who all care and root for her, it makes us feel connected and comforted.
Please add a prayer, too, for her eventual donor. I think about that person a lot.
–Maryanne
A text from Caitlin:
I love my mummy for everything she does – there are no words. Nor for andrew and my dad. They are all so caring. focused their lives directly on me. it is hard to reconcile how that can possibly be ok. But I guess it’s what we do as humans.
Heart and humor, and humility he said will lighten up your heavy load. Joni Mitchell refuge of the roads.
So much outpouring of love and attention makes humility a challenge, but I am so grateful for it. Heart and humor are easier. They feel like the only directions to go right now. Joni Mitchell’s words feel like permission to let go.
I do realize that not everyone who reads this blog is experiencing a big emotional moment in their lives …that sometimes life skates around on top where things are delightful and easy. And I’ve been there and hope to be back, even though I love to cry (with happiness!).
I couldn’t be further from the road right now in Joni’s song with its literal talk about the refuge of anonymity, cold water restrooms and and a photograph of the earth in a highway service station. I am consumed with myself and it’s boring and uncomfortable and embarrassing to have so much attention. And I LIKE attention. At the same time I can’t stop – in order to keep going I have to focus on myself. Self self self. It feels so anti human. It is. I rely on others completely and ultimately, finally will rely on another person to keep me alive.
My thoughts these days aren’t the skate on top kind of normal life thoughts. They’re up and down and trippy and depressive – and we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over the top sounding writing. And to reassure you I don’t take myself too seriously. I do take life seriously though, I’ll be honest …. because it’s a seriously wild business.
Thank you for the support – I know I wouldn’t survive at all without it. It’s such an easy thing to say. But truly, i’d be dead by now! I am so very grateful even if I am a bit off the grid lately and I’ve faltered shamefully in my thank you notes – I don’t think I’ll ever get to some of them. But – I’m here, and thank you. And I love everyone very much and love hearing from people even if I am not able to write back.
–Caitlin
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9 Lives Notes 
Caitlin, you could not be more on my mind these days as I direct love and positive energy to Pittsburgh. It’s so nice to read your words and see your beautiful artwork. I know you’re uncomfortable with so much attention. It’s the blessing and the curse of having a keen intellect and deep emotional intelligence to always be immersed in your own mind and heart, but it is also what makes you so wonderfully you and so loved by many. ❤ I know this is the home stretch. xoxo
Love you
Thank you for sharing… hard to read yet as we know you need to get worse before you get better. That’s what we cling to. We are all thinking of you and hope new lungs come soon xo
Sweet Caitlin, stay on the road of heart humor and love, I think of you often and your amazing wonderful parents. sending you a warm and loving hug. God bless
Caitlin. You don’t know me but I went to school with your Mom and Uncle Mike. My thoughts and prayers are with you nightly. I have children and feel the pain your family must be going through along with your anguish and uncertainty. You will get that lung transplant and really be able to enjoy your life again. I believe that and we all know how powerful the power of prayer is. Good luck Mj on the last leg of your journey and look forward to your good updates coming soon. Please give my best to your family.
Debbie (Phaneuf) Blatz
Hi all just thinking of you all very much always in our prayers xxxx
Sammi and I are praying for you Caitlin!
I hate that you are going through this, and sincerely wish our prayers lead to happy tears very soon. Love to you all.
Dear Caitlin and family, I think and pray for you often. I am thinking of the joy you will feel when you are thru these trying times. God Bless you as we soon approach 2017. I look forward to the joy I will also feel for you. Love to you and your family.
I still have the snow globe with the penguins in the snow that you sent to me sophomore Christmas to say thanks for being great friends. While the glass broke and the snow is gone, the penguins still keep twirling to their tune. You are such a truly amazing friend and I’ll always be grateful for the way your friendship makes me feel so loved and appreciated. You are a gem and I can’t wait to see you better!! Prayers for you, your family, friends and donor; and their family and friends. Life is so messed up but you keep teaching us to keep it positive! You inspire me! Love you!!
I am over whelmed by tears for what a beautiful soul Caitlin is and how much we need her presence. I am so sad for all the suffering she is enduring, for she must be way more uncomfortable that even the posts offer. I am praying every day and I want you to know that. You’re a wonderful family. Lots of love. ❤
Thinking of you, and praying for a viable double lung donor. Deepest wishes, Joe
Caitlin, As always you are in my prayers and in the prayers of my friends and the people of my church. I always think of that spunky little girl paddling in a canoe with me years ago, telling me she would find a cure for CF. Keep up the spunk little girl! You are beautiful!!
Leslie
Love you so much ❤️❤️❤️❤️❤️
Hi Caitlin, with all my heart I believe as you should that you deserve all the LOVE being sent your way. Believe in your heart that you deserve it, feel it, take it in, accept it graciously and know the UNIVERSE loves you. LOVE conquers all, nothing is stronger. Let go and let GOD. Love from your Irish friends, Alan and Mary.
Thinking of you all xxxxxx
Lots of love prayers and strength sent to you xxx
My thoughts and prayers are with you two strong and amazing women.
Caitlin, we’ve never met but your message has touched my heart deeply. i am an old friend and colleague of your uncle Mike and when i went through my own health crisis last year Joni’s words and the sound of her voice in my head was a big comfort to me as well. be strong and be well – you are in my prayers.
Hi Caitlin,Your always in our thoughts & prayers
Prayers to you and family thinking of you everyday and praying 🙏🏻🙏🏻🙏🏻