Category: hospital
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Trusting your body
Last week I had a virtual CF visit. During the appointment, my pulmonologist thanked me for my persistence, though he admitted it wasn’t the best word choice. “With the heart thing. You knew something wasn’t right, and you trusted your intuition.”
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A cartwheel-free zone
Part of me doesn’t want to post an update because I’m exhausted that my health has become such a focal point in my life. I’d love to be posting about fun trips and little adventures and other things I’m doing with my boundless energy. But here’s the quick update: I haven’t done any cartwheels. Everything…
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PICC or it didn’t happen
Last Thursday I got a PICC line so I can do home IV antibiotics [again]. A student was placing the line, and the supervising guy was insufferable. I was uncomfortably lying on the metal table, trying to relax, as he announced, “Now’s your time to shine. Show us what you’ve got!” That didn’t instill a…
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Oxygen: The Gateway Drug
I am so high on oxygen right now. Seriously. You should get your hands on some of this stuff. After living with relentless shortness of breath and headaches for what felt like forever, I finally got oxygen delivered to the house yesterday. So, for the first time in about a year, I can sit comfortably…
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MARCH FORTH!
March 4th, huh? March Fourth? March Forth! To celebrate today, I’ll share an update where MARCH FORTH! seems like a good motto. In my last post, I wrote that I’d done some tests related to my shortness of breath. It feels a little silly to say that as a person with cystic fibrosis (CF) because,…
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I’ll be home for Christmas
‘Twas the night before Christmas when I finally broke freeTo finish healing at home with the help of IVs;I plopped on the couch, dogs wrapped in my legs,And waited for Santa to deliver my meds. Well. That was the least Christmassy Christmas ever, but I’m okay with it. My virus-like symptoms began in mid November,…
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Ho-ho-hospital
I just spent my seventh night in the hospital. I went to sleep when my IV antibiotic finished just after 11:00 p.m. Then the nurse came in to draw blood at midnight. Then the tech came in to get my vital signs at 1:00 a.m. Then the nurse came in to hook me up to…
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Marry Christmas
A decade ago today, I woke up in a cabin in Blue Ridge, Georgia, ready to become Ramón’s wife. Typing “Ramón’s wife” still feels odd because, in many ways, it’s as though I never got to fulfill that role. It’s also weird because I tend to avoid titles, meaning I’d never really called him my…
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You heard it here
Guess who was on a podcast?! Me! I recently had the opportunity to be a guest on Pam Baker’s podcast, The Lost Love Stories. Pam is a legend in the CF community. I feel cheesy saying that, like I’m trying to puff her up, but I mean it. Pam has two sons with CF, both…
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I’ve got a leg up (per doctor’s orders)
Today my leg is a little less screwed—literally. The leg I fractured (x3) last year is still quite painful, so a doctor removed four of the screws yesterday. What remains is a rod inside my tibia and a screw near my knee holding it in place. Call me Rod Drewart. Rod Screwart? Womp womp. If…
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I went to medical school
“Making Death Casual” should be my tagline. Most people don’t want to discuss mortality, but it’s one of my favorite topics. When I talk about death, I’m really talking about life. Yesterday I spent the morning at the Emory School of Medicine. A pulmonologist I love, Dr. Linnemann, was giving a lecture on cystic fibrosis…
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Happy/Sad New Year!
We’re almost a week into the new year, and I’m ready for a do-over. In some ways, I fulfilled my intention to be simple and deliberate. I made a lengthy to-do list for the week and accomplished most of the tasks. I’m five days into a 24-day Pilates challenge. I’ve already finished reading my first…
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Day +9: Cloud not-so-nine
Today has been, by far, the scariest day of my life. This morning, at about 5:25, Ramón lost his airway, most likely due to swelling caused by an infection or allergic reaction. He went into cardiac arrest and ultimately had to be resuscitated. During the process, Ramón had to be intubated. He is now sedated…
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Days +0 to +4
Day +0: A cup of hope – April 10, 2020 Thank you for all the ways you’ve been #RootingforRamon! The transplant went off without a hitch, and we’ve already walked a few laps, watched an awful movie, and napped. We’ll be sipping from our cup of hope as YuSun’s cells boss Ramón around (as all…
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Day 300
We made it to day 300! Sometimes it’s still hard for me to believe Ramón was diagnosed with leukemia last May. It’s even more difficult to believe that, after about nine months in remission, it occasionally feels like we’re back where we started. But, on the bright side, we’ve had 300 love-laden, laughter-loaded, gratitude-packed days.…