Our Story
With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses. In Chicago, volunteers are raising funds in honor of transplant patients like Philip Johnson. Philip was diagnosed with Cystic Fibrosis (CF), a hereditary disease with...
Continue Reading »Updates
The Big One
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Well, here we are at the first anniversary of my lung transplant. This time last year I was still asleep after a day-long surgery. The transplant capped a... Continue Reading »
Philip
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I’ll Be Home for Christmas
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(not only in my dreams) A year ago today I was admitted to the hospital. It had not been the best couple of years since my previous surgery,... Continue Reading »
Oh, also this…
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Today I swam the full length of the pool underwater and did flip-turns while swimming laps for the first time in 4-5 years. -- Philip Continue Reading »
The One Percent
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Sooooo close. So close. I had a check-up with the transplant team today, and my FEV1 (volume exhaled in the first second of expiration) was at 99% of... Continue Reading »
Hang Gliding, Anyone?
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Or skydiving, perhaps? This week I will have been home for three months, and things are going well. I am now cleared to engage in all the extreme... Continue Reading »
Crop Top Ready
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Yesterday, I had my stomach tube removed. It was the last external bit of accoutrement remaining from my hospitalization. At one point, I had 15 different tubes connected... Continue Reading »
In Between
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I feel I should have more to report, but I'm in sort of an in-between period right now. I feel pretty good most of the time, but there... Continue Reading »
Dreamlike
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There has been a bit of a dreamlike quality to this whole process. Throughout both the hospitalization and being back home, the passage of time has often seemed... Continue Reading »