Monday, June 25, 2012


The 10th Annual Pulmonary Hypertension International Conference is done.

I stayed an extra day to hit up Sea World. However, Tropical Storm Debby had other ideas, and I spent two days in the hotel hiding from sheets of rain and whipping wind. Not so bad though… no amount of cute dolphins could trump hanging with a friend who makes you laugh so hard your face hurts, or long talks over bottles of wine. So, it’s all good. Wouldn’t trade it, actually. Sea World can wait.

And now I’m sitting here on the plane ride home. And while Conference closed on Sunday afternoon and it is now Monday night, it is just now I can start to process it all. I kept flipping through my pictures. And suddenly, my throat closed up and I felt the tears coming. Not so cool on an airplane… finally sitting still for a few minutes, alone with my thoughts, and it’s hitting me. I’m a little dizzy with what has happened. It’s a blur, but bits and pieces are floating into focus and I’m struck, as I so often am, at the enormity of what I’ve become involved in.

Becoming a part of something that could change the course of a disease…IS changing the course of a disease. Impacting people’s lives. Meeting people who rock my little world. Becoming close to other patients… and all that comes with that. It’s a crazy thing to totally love someone (many someones) with chronic illness and, more than that, who share your illness. I find myself feeling sometimes fiercely protective of their care and wellbeing, and deeply worried when things don’t seem right, and crazy-happy for them when things go well… and most of these people I’ve only spent a few hours with, if any at all. Weird.

So here’s the Conference story… how does one describe Conference? As is so often the case with PH, I feel at a loss for words. Pretty sure I can find some though.


Starting with the Board Meeting on Thursday before Conference began. I joined the Board of Trustees just a little over a year ago, and I have yet to loose the feeling that I am walking amongst giants. For a while, I was just a little star struck (uncharacteristic for me), and now in place of that grows a sense of… I don’t know what exactly. I’m beginning to be able to call these people friends. In fact, I know I can. And it’s a group of incredible human beings. Each has dedicated themselves to the cause of fighting PH. Some as medical professionals who have made this their career. Too many who have lost loved ones and fight on in their honor. A few who still fight for their children who have the disease. Patients – even a former patient. Damn. That’s really all I can say. And it’s so crazy cool to sit in a room that becomes a giant think-tank for PHA, and then a few months later see those ideas in full swing… like the “Sometimes It’s PH” campaign we launched at Conference.

I got a chance to do a presentation to the International Leaders Summit – representatives from all over the world who fight PH in their own country. I spoke on creating patient connections. It was a cool opportunity to sit back and reflect on how PHA reaches out to the patient population and builds platforms that encourages support – very cool.

When I left Conference two years ago, the one piece I still had missing was the chance to connect and talk with other parents, moms especially, who had PH and were trying to raise kids. Well, PHA gave me an incredible opportunity and I was able to chair a patient-led panel with two great friends so we could address the topic. Wendy and Hannah have both adopted beautiful kids since their diagnosis, and we were able to talk about our experiences and give other patients hope that having this disease and a family at the same time is indeed possible. The next day I also led a support group for patients on the same topic, also a great chance to swap stories and tips, and learn from each other.

Hannah, Me, Wendy

And then there was this little assignment I had that has had me shaking in my shoes for weeks. I was blown away to be asked to be the keynote speaker for Saturday night. Me. Talk to a room of 1500 people. Crap. I so badly wanted to say no. The thought was terrifying. And yet, how could I let such an opportunity pass? So, I said yes. And it was… surreal. I spent weeks practicing my speech. I even recorded myself on my phone and listened to myself over and over again (thanks for the idea, Mom – brilliant!).

Well, I’ve done some public speaking before, with mixed results.  Some have gone well and others I’ve been horribly nervous and shaking, and it showed. Badly. I really wasn’t sure what to expect with this one. But, I climbed that stage and sat there almost deadly calm. It is a calmness I have experienced before just ahead of a large event, it’s a calmness that comes from knowing I was doing the exact right thing. Oh, and the wine beforehand probably didn’t hurt. ;)

Anyway, I got up there and delivered my speech, and the response was… well, overwhelming. People were incredibly warm and generous in their feedback afterwards. A few said things that will probably stick with me for the rest of my life.  I don’t know. I think I’ll have to let the speech speak for itself (ha – that sounds weird). I’ll post it when it’s available.

I finished off the Conference hanging out in the Kids’ Room and did a sign language lesson with them. It was really fun to connect with some of the pediatric patients and also siblings of patients. We had such a fun time. I’m a little nervous to see pictures and video from that though – I look like a nut when I’m jumping around and signing with the kiddos. But they love it, and it’s totally worth it.

And then there were all these little moments I couldn’t possibly capture right. A minute or two connecting with someone I’ve known only on-line. Someone saying something incredibly sweet. The feeling caught in my throat as I looked at a patient I knew was failing and struggling. Laughing so hard I lost my breath. The hugs of those who have become dear to me. Eye contact and smiles when someone just “gets it”. And the tears that well up when that happens too.  Because, truly, there’s nothing quite like being with those who understand on a profoundly deep and impossible to describe level what it is to have Pulmonary Hypertension.

Yeah… so, that’s Conference. 

My Generation Hope Patient Advisory Board cohorts: Joshua, Me, Brit, Sean