Our Story
Hello all, I'm Shannon! I have Cystic Fibrosis. I was diagnosed with CF at 5 months old with a positive sweat test. I was evaluated for a double lung transplant at Barnes Jewish Hospital in St. Louis, MO in 2016 but wasn't quite ready to be listed. I have done all the evaluation testing again in August 2023 to stay up to date. I'm still holding steady and not ready...
Continue Reading »Updates
It’s been a minute, last 6 months-Reader’s Digest version
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I update www.cfhappens.com with all my health updates and I totally forget to update here. I will get better at updating here!! Here is the last 6 months... Continue Reading »
FAMILY
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Lung Transplant Evaluation Testing
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My regular CF doctor wanted me to be seen by my transplant hospital (Barnes-Jewish in St. Louis, MO) because I've had 2 hospital admissions this year and my... Continue Reading »
IV time yet again
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I had been having back lung pain for 2 weeks as of April 26th so I called my nurse to ask for a chest xray to make sure... Continue Reading »
Sick clinic appointment on 2/14/20
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I haven't been feeling good since the 1st. My husband also caught whatever it was but got over it pretty quickly. I however still don't feel well. I... Continue Reading »
Dolewite fundraiser
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The fundraiser was a success! Thank you to everyone that was able to come out and celebrate my 40th birthday. Unfortunately we came home and we're both sick.... Continue Reading »
CF Clinic 1/9/20 Update
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I had CF Clinic yesterday. I'm holding steady lung function wise at 37%. I did start a new CF med called Trikafta. It was just FDA approved in... Continue Reading »
Clinic Update
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Today was CF clinic day. It was my normal 3 month check up that turned into a hospital/IV follow up. It seems to happen that way most of... Continue Reading »
Home sweet home!
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I got home around noon today from the hospital which is record time for a release. It helped that I didn’t have to wait for my IV antibiotics... Continue Reading »