Blog

Trikafta Update

"Welp, the Trikafta is working. My old average was like 35-39% and then two days after Trikafta I was 40%. My first pre bronchodilator pft was 42% and...

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I’m being listed!

"HAPPY HALLOWEEN! I'm officially being listed for a double lung transplant!  Please DONATE to COTA in honor of me, it would be a treat! Also, hope the Trikafta...

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Decision Date

"The final decision on whether I will be listed for transplant now or later will be made on Halloween. If you are interested in being a part of...

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Procedure Update

"Went down for my EGD and Bravo placement. Everything went well as far as I know. Except, I bit my lip and have a sorer throat than normal...

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Transplant Evaluation Update

"I got admitted on September 28th and started on IV Tobramycin and Zosyn. I actually coughed during treatments which was a little different and had bad headaches and...

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Health Update

“Turns out I’m having even more of an allergy issue with Cefepime than before.. not just itchy but starting to spread and get a rash even with all...

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Transplant Evaluation Decision

"The transplant team has officially decided that they want more testing done and then they'll have another meeting on when/whether to list me. They said they usually will...

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Transplant Hopes and Fears

"I can't imagine what it would be like to have energy to run and play with my child. I can't imagine breathing clear breaths or being able to...

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The Transplant Process Q&A

I'm starting transplant evaluation next week. However, there seems to be a lot of confusion on what the actual transplant process is, so I decided to write this...

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