It’s Not Up To Those Who Are Hurting To Make YOU More Comfortable With THEIR Pain…

One of my volunteer friends died a few days ago.    A few mutual friends & I were talking not just about memories but also some really raw & visceral reactions from others in regards to our friend’s death being made public.

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Important Article: Misinformation From Brain Death Stories Impacts Organ Donation.

This article may just be for journalism nerds like me…but I’m glad Donate Life California passed this along.

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Grief Landscapes Project

I’m going to let the power of this art project by Mindy Stricke speak for itself.

I know I talk quite a bit about grief, loss, death & dying here in my blog on occasion, but when you’re forced to confront your own mortality at an earlier age it becomes necessary to do so.

It doesn’t make it easy of course, but it’s an important conversation to have with oneself & others.   Continue reading


When Enough Is Enough

A fellow blogger tagged me in a tweet today.  I know this was an invitation to read through or comment.  I’ve played around with writing about this subject a few times. It always feels a bit too uncomfortable to express openly like this, but I’ll give it a try. It doesn’t bother me to discuss it with others in hard situations & quiet rooms when needed.  (I hope this doesn’t come across as rambling. It is long. But to me every word is here for a reason.)

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When Generals Fall

I admit, there’s times I try to avoid getting too personal with this blog. But in the realm of rare disease, sometimes that line can be difficult to draw. Especially when one of your rare diseases is estimated at having a population of less than 350,000 worldwide & is predominately female.  It’s estimated that our current online support group has a little over 800 women.  Despite generalizations that women can be catty, most of us in this group play in the sandbox pretty nicely.  Yet, it’s days like today that make it difficult to sleep.

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Survival And The Other Side of the Coin

When I first started talking with my doctor at Penn in late 2010/early 2011 & we had the initial facts & figures talk, it was estimated that the national averages for double lung transplants were around 50-60 percent from what I remember. In addition to that percentage seeming to correlate with data I could find online during that time from reputable sources.  I am going to be honest, some of the initial information was hard pill to swallow & the statistics hard to hear.

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