JANUARY 7–Signs & signs

Weird to open up my little travel computer, here in CA, for the first time since December 20 and see all the windows containing my last hopeful posts, still open. iMessages is updating my text messages before my eyes, and all the texts of the past few weeks are flashing as if in real time. […]

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12/19–Verdict: No Real Sign of Trouble

Caitlin came back from her trip to the OR. Her surgeon and his fellow thoroughly searched for anything that could be causing the high lactate levels. The good news was that they did a deep and thorough search and everything looked good. No dead tissue to be seen. The liver is likely the problem, because […]

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DECEMBER 19–Update from the Trenches

Caitlin has new working lungs, but the rest of her is struggling, and she needs all the energetic help she can get, along with everything her incredible doctors are giving her. 1. Her liver is still in tough shape, but the numbers were slightly better this morning. 2. She’s producing a lot of lactate, which […]

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DECEMBER 11–Back to the OR

It’s 11pm on Sunday night, and Caitlin has had to go back to the OR. Clotting is a risk with the ECMO cannulas through which her blood flows. The system is monitored constantly and a couple of hours ago, they discovered a clot. They clamped off part of the tubing to try and extract it, […]

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DECEMBER 9–‘The Sickest Person in the United States’

Caitlin just got out of the OR again, where the head lung transplant surgeon here at UPMC Pittsburgh, Dr. John D’Cunha, inserted a trach. It gets the breathing tube out of her mouth, makes her a lot more comfortable, and helps her oxygen saturation. He came in to tell us that all had gone well […]

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DECEMBER 7–Second Hearts

Last night, Caitlin was stable but at 4am we woke to the news that her left leg, site of the new arterial cannula, was swollen. They couldn’t detect any pulses in the foot. Her leg would soon be in danger if they didn’t act. At 5am she went back into the OR to receive a […]

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DECEMBER 6 — Tiger, Angel

Thank you so much for the outpouring of caring. Reading all the notes made me teary and grateful for all of the wonderful people in my beautiful daughter’s life. I’ll try to update every day, but sometimes it might be hard. Things are changing quickly. After a traumatic couple of days, Caitlin was relatively stable […]

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JULY 27–Coincidences, 1

Little Matches, CF, Caitlin O'Hara

I’ve been meaning to write down a bunch of coincidences for a long time. I’ll start with this most recent one. We are home, as most know. We escaped Pittsburgh for a few weeks. It’s been strange but great to be back. While here, I was reading an old journal from 2010. Back then, Caitlin, […]

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JANUARY 11–Changes

A few weeks ago I sent the email below to my beautiful friend Monique, with whom I share a wonderful ongoing conversation about everything, often including music, via text, email, and whatsapp voice messages.  We talk about how a song can embed itself into a feeling hugely disproportionate to its merit musically – making you […]

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DECEMBER 25 –Update from the Grinch

caitlin o'hara, little matches

When you are waiting for transplant, you wear a lot of lounge wear. I wear slippers every day, and after two years on the list, my feet are softer and smoother than ever.  My wardrobe is an alternating cycle of lounge-pieces, some raggedy, some for when ‘people’ are visiting. I’ve been wearing the same pair […]

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