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Hundred People Search

We added three new HPSers to the registry last week. This puts us at 82 to go on this year's Hundred People Search - H.P.S.
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Awesome birthday present – oxygen out of my apartment

This week I celebrated the second birthday since my lung transplant. When I catch myself having a thought about how old I’m getting, I remind myself how hard I’ve worked to get this old. It didn’t just happen. It’s perhaps unusual that you can feel like the mere act of existing is such an achievement. I worked hard, but so did so many people along the way – a LOT of people.

This year one of the exciting parts of my birthday was getting to send the oxygen equipment away. The transplant clinic was leery to let me send it away for a long time. They were worried I’d have another complication and require it again, even if only for a short time. It’s been annoying to me because I haven’t needed it (with the exception of a few days last June when I had rejection) since I’ve been home. Still, I’ve had to keep paying for it every month. Plus, I live in a tiny apartment! This equipment takes up valuable space that is already in short supply.

On Friday, when Carlos, the guy from the oxygen compa…

Family hunting

I’ve always had an interest in genealogy. I haven’t done anything about it really. Never had the time I guess. Perhaps it’s because I’ve always been a fan of studying history. Finding ancestors somehow feels like a personal connection to the past, as if the DNA populating my cells has some sort of time travel awareness of what has gone before. Of course that’s crazy.

When I was diagnosed with Hermansky-Pudlak Syndrome my interest in my roots, especially my Puerto Rican roots, intensified. Maybe it was the realness of mortality or the connection between my newfound fascination with genetics and how it connected me to my family history.

For years I’ve thought about whomever in my family tree might have had HPS. They would have lived so long ago that they wouldn’t have known what HPS was. It wasn’t really identified as such until 1959. My grandma Cockerill, whose father was from Puerto Rico, talked about relatives in Puerto Rico she heard about as a child that had died of tuberculosis. C…