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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

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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.

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Family hunting

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