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The November rejection saga

I stress a lot about laundry. I stress about it because I share one washer and dryer with nine families in my building. I can’t always do my laundry when it’s convenient for me. I also stress about it because I have this nightmare scenario in my head that something will happen, I’ll get admitted to the hospital again, and I won’t have any clean clothes to have anyone pick up. People I don’t know well enough to be aquainted with my underwear might have to get it from my apartment, wash it, and bring it to me. Over these past few years my brother, for example, has been in my panty drawer way more often than any brother should.

And so it was the day before Halloween this year. In Sept I was doing the best I’ve done so far post transplant. I could go into the city, or anywhere, and not worry that I wouldn’t have the stamina to do what I needed to do. I was still getting easily out of breath with stairs and hills, but I was doing great. In Oct. it seemed like there was a slow decline, so s…
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Anyone home?

Where have all the staffers gone? It seems like that should be the line of a song. Grin! I just wanted to post a little about what is going on behind the scenes at the Network. I know those of you who actively follow the HPS Network’s social media etc. or who have needed things from us lately, might have noticed we’ve been less active online and maybe not as quick to respond to non-emergency issues.

There are a lot of times things are quite busy in the HPS Network offices, but we can’t always elaborate about everything happening. It isn’t that it’s a huge secret exactly. It’s more the boring nuts and bolts of keeping the ship afloat and the trains running (hopefully at least mostly on time.)

There are times we are working on things that just can’t be announced yet for lots of reasons. This is just like any other business. Sometimes things fall through, or developments can’t be announced until all the players are ready. Sometimes we are just so busy working to move the cure forward, we…

Hundred People Search Update

We've added a new HPSer to the HPS registry. This puts us at 79 to go this year. We had a number of new people coming in, but it has really fallen off through late July and August. Thanks to everyone who is keeping up the outreach. We don't want to leave anyone behind - especially with all the exciting things happening.

The healing power of Starbucks

(Note: actually posting this a few days later.)

Yesterday it was one year and six months since my single lung transplant. In some ways it feels like yesterday, and in other ways it feels like so long ago.

In the beginning, post transplant time starts to take on strange properties. It feels like everything moves so slow. You move slow. You think slow. Everything seems complicated and foreign. You’re so anxious to get your life back. You’ve got all these things you were looking forward to doing after your transplant and it feels like you’ll never get there. There are still things on my post transplant wish list that physically I can’t do, but even now, even a year and a half later, I’m still making progress. There were some complications that slowed things down early on – although my team probably wouldn’t put it that way. They’d tell me to quit comparing my recovery to anyone else; we’re all different and there isn’t a schedule to this. Okie Dokie. Got it – NOT. I’m not wired that way. …

Where has Star Trek gone?

With everything truly important on my list of things I need to blog about, we’re going with a really important one today – Star Trek!

I don’t think most people would make me for a trekkie, but I’ve always loved it. In general, I’m not a huge SciFi person, but I loved/love Star Trek because of its soul. It isn’t just space battles and space monsters. It isn’t just good vs evil. Star Trek used its universe to say things that, in our universe, might be sensitive. It allowed/allows us to look at ourselves in the safety of another place and time. In such a polarized environment, we could use a little more of that.

A few months ago I finally ditched my Netflix subscription and added CBS All Access to my Amazon Prime account. (Might be better named CBS Some Access, but that’s for another blog.) I was dying to see Discovery, the new Star Trek, but hadn’t signed up for CBS because my budget is tight. Even a few extra dollars can matter. But, I found I was watching a few series on Netflix, and …