Living on the frontlines

We added a new person to the HPS registry this past week. This puts us at 85 to go on the Hundred People Search (HPS) this year. Keep up the great outreach! 

We have added a new HPSer to the registry. This puts us at 86 to go on the Hundred People Search (HPS). 

We have added a new member to the HPS registry. This puts us at 87 to go on this year's Hundred People Search (HPS). 

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. Co...

We have nine new members today! This puts us at 88 to go on the Hundred People Search! Keep up the great outreach.

I don’t want to be a cliché. People that get a “second chance” at life are supposed to tell everyone else how much they should appreciate life. The roses smell sweeter. The sunsets are more vibrant. Blab blab blab ba. The thing is, a lot of days, it is true. There are days when it mystifies me that marching bands aren’t walking down the street every day followed by fireworks every evening because I’m still here. (How is that for self-involved!?!) I mean it in the sense that there are so many reasons why I shouldn’t still be here. The cliché annoys me because it assumes no one really appreciates living until they nearly die. That isn’t me. I appreciate living enough that I fought like hell to still be here. I may be broke. I may not have a lot of the things in life you’re supposed to have at, ummm….middle age….but I do have a strong sense of purpose. I’ve spent most of my life not assuming I’m going to live forever, and I know I’m not the only one. So, I’m not going to lecture anyone ab...

Actually, as I write this, it isn’t one year post transplant. It’s 13 months post transplant! WooHoo! And the best part is I’m not tardy posting because I’ve been at medical appointments or too tired. I haven’t posted because I’ve been too busy! Really busy, with my old fashioned normal stuff!!! I’ve felt more like myself in the past three weeks than I have in a long time. My legs are still a problem, but they are improving. I’m still having trouble with stairs and inclines, but more from a leg standpoint than a breathing standpoint. Mind you, if the old legs would work I might get out of breath, but when you’re moving very carefully, it isn’t very cardio-vascular. These past few weeks I achieved some big personal milestones – big to me anyway. I attended the 26th Annual HPS Network Conference. My dad called to ask how the conference went. I’m embarrassed to say that before my little brain could process all the great things that happened at conference, my very first thought was – it ...