Sunday, November 14, 2010

If You Have to Be Here, It's Worth Being HERE

Original Date: November 5, 2010

Wow, so here we are at the one year (and 3 days) anniversary of this blog! Yes, the time for PH Awareness Month has rolled around again. The time of year when I resolve to write here more than once every couple of months.

I want to start out on a positive note because this year has been, by and large, very positive PH health wise. There have been ups and downs, and a lot of it has been chronicled here over the months, but really, I can’t complain too much.

There have been two huge highlights for me this past year. I think I’ll start with just one for this post.
The first was attending the International Conference in June. What an experience. To sit amongst over 1,000 people who actually get what I’m going through is amazing. The Pulmonary Hypertension Association rocks. They have this way of bringing together patients, caregivers and doctors onto this level playing field I suspect you don’t see too often in medical communities.

I sat in on sessions led by doctors, and some led by patients. I had breakfast with doctors who could answer my questions. I had some questions that couldn’t be answered, but that’s okay. I got to participate in several research projects by visiting the research room and lending my data, and feedback, and many vials of blood.

Most importantly, I got to meet so many patients I have only known online. I was able to channel all the work I’ve been doing over the past year or so and help mentor and lead groups of patients too. That was pretty cool. I was the welcome person for the young adult meet and greet room on the first day.That kicked off meeting this wonderful couple who had traveled all the way from Israel just to find help and resources for their daughter. PH is rare all over the world.

The really cool role I was asked to play was to sit on a panel of “The Next Generation of PHA Leaders”. It was really an honor and a surprise to be asked. I sat up on stage at breakfast one day with a few other go-getters. Two of my co-panelists were fundraiser extrodinaires, and one just happened to have participated in a half-ironman with his PH! Me… I talked about this blog, and co-leading Generation Hope.

There were two particularly poignant events for me. The first was finally meeting patients who just defy my every understanding and expectation of Pulmonary Hypertension. There were some there who are true athletes, and others living lives that the statistics just say aren’t possible. Screw the statistics, I’ve met those people, and am working myself like crazy to become and stay one of them.

The second was listening to Carl Hicks speak. Carl was the outgoing chairman of the board this year. His beautiful daughter Meaghan passed away from complications after her transplant. To hear Carl speak, to see a father wipe away tears for his daughter, but strengthen his voice and his resolve even as he struggled, was both heart-wrenching and inspiring. I cried every time that man got up to the podium. His emotions were raw, and his reason for fighting, for still fighting after his loss, was so powerful. I am beginning to realize many of our PHA leaders are in his shoes, having lost loved ones to this disease but carrying on their memory and their fight long after the loved ones have moved on to finally breathe easy.

We’re really blessed in this community. If we have to have this absolutely shitty hand dealt to us, then I at least don’t want it to be anything else and I don’t want to be involved anywhere else. The advocacy of our community has brought us from zero PH therapies in 1994 to eight different approved medications now. The average survival rate of around six years is still absolute crap, but it is also triple what it used to be. There are eight more drugs in the FDA pipeline that show a lot of promise, and dozens of other research studies going on.

Our doctors are real people who see their patients as real people. When I ran into my docor at a conference last year,  he greeted me with a warm hug. I had the privilege of meeting who I consider to be one of our nation’s premier PH specialists a few months ago (more on that later!) and when I e-mailed him to thank him for his time, my response a day later was signed with his first name, no DOCTOR! formality needed.  My nurse and I exchange technical questions and e-mails, followed by “and how are your kids?” I admire these men and women who have dedicated their professions and their lives to saving us. The work they are doing is inspiring and I am deeply grateful.

The Pulmonary Hypertension Association is the heart and soul of it all. They listen to their members like you wouldn’t believe. They inspire research, raise unheard of funds, and even help move legislation through Washington. No small feat in the current political climate, but we’re doing it! (Want to help? Click HERE). Most of all, they provide a place of support and refuge for patients. And not just patients in general. They’ve managed to reach out to all these little sub-groups and create communities within the larger PH community. They gear up for and then sponsor conferences around the country, and then awareness month.

Well, awareness month is here. Wear your periwinkle of Fridays. Tell a friend about Pulmonary Hypertension. Tell them about me if you want. But just get the word out there.

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