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The blog is back!

I know, I know, it’s been a while. Totally not reliable. Totally not what I had envisioned. I have a good excuse. I’ve been busy getting a lung transplant! Yep, I was one of the very lucky to get a lung! I have many upcoming posts to talk about that.

After all of my desire to record this HPS journey, I’ve left out one of the most dramatic parts. As I got sicker, I just got more tired all the time. There are certain things one has to do in life – fix dinner, work on things that bring in income, go to medical appointments and pulmonary rehab. There simply was less energy to do anything that, while perhaps important and meaningful to me, were not absolutely necessary to my survival.

As you might imagine, recovering from a lung transplant is no small matter either. I am now four months out, have had one major setback, and am still in pain every day and currently struggling to walk further than a block. I had been up to a mile and a half before the most recent hospitalization.

But, while my body is a mess, my brain is back to working relatively normally, at least most of the time. So, I’m hoping to be more back to normal and post some about the transplant journey. And of course, thanks to that new lung, life goes on with lots of things to blog about.

I’m back!


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The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Just waiting: A continuation of my transplant story…

Photo: This is me the week before the transplant. The one with the roses was taken on Valentine's Day. My sister-in-law gave the roses Ryan had brought her to me.

To be honest, I don’t remember much about the time I spent in the hospital before my transplant. I’m not sure if that’s because it was pretty boring and routine, so there’s just not much to say – or if it is some kind of self-preservation maneuver my brain has done to shield me somehow.

After the big rush to get to the clinic early, we spent several hours in the waiting room with my luggage as if we were waiting for an airplane at the airport. It turns out the big rush was due to a hospital policy that the clinic couldn’t request a bed for me until I was actually there. The hotel Inova Fairfax Medical Center was packed to the gills, and they wanted my name on the waiting list. It was late afternoon before a bed became available. Looking back, I’m amazed at how calm we were sitting there. Perhaps we were compartmentalizing…

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…