Getting Excited For Conference!

By Melanie Kozak

How would I describe the International PH Conference? It’s like going to a family reunion, only it’s with the relatives that you like.  It’s the strangest yet best feeling ever.  You get to meet all of your friends that “live in the computer”.  You also forget that people normally look at you as disabled because when you look around, you see that everyone is the same as you.  It’s overwhelming in a great way.

I get very inspired by the patient led sessions; it’s so nice to hear other people’s stories that are so similar to mine. It starts to make me feel less alone and I enjoy sharing my story as well.  It shows me that PH may be a rare disease, but that we are not only a community but a family.  It reminds me of why I fight every day.  It re-energizes me to go out and start trying to spread awareness for PH and fundraise.  It also reminds me that I need to accept my bad days and continue to be positive.

The doctor led sessions are amazing.  My favorites are the ones on the upcoming treatments.  I love to hear what other options may be available soon.  I was diagnosed 14 years ago, and there was only Flolan.   It excites me to watch more and more treatments get approved over the years.  It’s just the best feeling.  I was given six months at diagnosis, and then two-five years after that.  I know it’s a story we all hear, but seeing these new medications makes me feel like this disease is going to be cured in my lifetime.

This will be my fourth conference, and I get more involved each time.  I volunteer, I speak, I help lead a support group and I always love to model.  I remember hearing in 2008 about Gleevec, and a few months ago I got the opportunity to actually go speak to the scientists, doctors and researchers of the company! 

This year I am especially looking forward to meeting up with Generation Hope friends.  It is going to be great to speak with other people in my age group that have similar challenges as a young adult.  I am happy to say that I am a panelist on the “Making PH Sexy” session, which is all about managing relationships while having PH.  I think it’s going to be a great panel with lots of interesting points of view.  Hopefully the patients in the room will really get involved and have fun with this topic.

I also love the fashion show.  Silly as it may seem, it’s always fun to model in the show and watch how everyone else either hides or accessories their pump or oxygen.  It just has so much energy.  I especially love to see the children model.  It is great that they are able to do this and not be afraid.  Here is a teaser - this year I will be wearing my PH awareness outfit and a very special outfit, but you’ll have to be there to see it!  Okay if you are not, I will post pictures afterwards.

 As I write this I feel like I could get up and start packing.  In my eyes conference can’t come soon enough!  It gives me a high being around so many other patients.  It’s great to get ideas from them about their support groups and many other things.  The only down side is that conference only comes every OTHER year.  I would love to have a conference every year.  It truly makes me sad when conference comes to an end. 

Hopefully I will get to meet all of you next month!!!

A PH Patient Fights Back Through Blogging

By Leigh McGowan, PH Patient

Leigh McGowan

In September 2008, I was diagnosed with pulmonary hypertension.  I had just given birth to my first child, and by the summer I was out of breath with very minimal exertion.  Being a new mom, I figured I was just tired and out of shape.  A couple weeks later I couldn't push my son's stroller or walk up a slight incline without being winded.  In August, when I couldn't dance through a song at a friend's wedding, I thought I must have asthma.  But when I couldn't walk up the flight of stairs to our apartment without collapsing at the top, I knew something was really wrong.

I was in a dark, little, cell block of a room at the hospital when the doctors told me I had PH.  Having never heard of it, I said, "OK, but I'm not going to die from it, right?"  And the whole room went quiet.  A doctor I had never met before said, "Well, everybody dies...."  I freaked out.  I was a new mother, an athlete, I'd never smoked or done drugs, so how could I have a lung disease?  Two or three years was what they gave me.  Two to three years?!  My son was 6 months old!

It wasn't until I met my wonderful pulmonologist and my PH specialist that I heard any good news.  The truth of the matter was, they had no idea when I'd be gone.  The problem was, despite the fact that my PH drugs allowed me to feel almost normal most days, two to three years was still in my head.  When September 2011 rolled around, I thought I'd feel like, "Well, they were wrong.  I'm not dead.  I can do anything!"  But it actually felt more like, "Well, that's it, three years.  I could go at anytime."  And that feeling was unacceptable.  I wasn't ready.  How could I leave my child without a mother?

Having been an actress and a writer pre-baby, I decided to write a book of letters to my son.  I wanted to fill it with advice and guidance so, if I did have to leave his life early, he would would still have a version of me to help navigate his way through life.  Then some media savvy friends convinced me to take that book idea and turn it into a blog.  It would still allow me to share my feelings and advice, but on a larger scale.  I had little familiarity with the blogosphere, but I liked the idea of making my writing public.  It made me accountable.  For getting it done.  For doing it right.  And publishing it every week made it real.  I also liked the idea of having something to show for my efforts.  And, if I could create a built in audience for a future book, then all the better.

Since I wasn't currently a blogger, nor did I read blogs, I had no idea where to start.  I took an 'Introduction to Blogging' course online with the New York Times.  It was a three-week course with two live feed tutorials.  It laid down the basics and helped me navigate the world of the web.  I spent hours on WordPress.com -- a common blogging site -- picking the best "look" for my blog, and I wrote.  I wrote as much as I could.  I learned to hone my "voice" and figure out what I wanted to say.  What was my tone?  My message?  My point?  I decided I would post once a week.  Enough that I was accountable for working on a new post but not so much that people got tired of me.  It was helpful to have some posts "banked" because once I launched, I found that some posts were better for some weeks than others.  Being able to pick and choose which came next was better than scrambling to get something up. Some of my earliest stuff never saw the light of day.

The response to www.incaseimgone.com has been unbelievable.  Not only has it given me a purpose beyond my day-to-day existence as a mother, wife and PHer, it's allowed me to connect with so many others with similar emotions, struggles and realizations.  I feel lifted by the process.  I feel proactive in my battle with this disease and that I am doing something tangible for my son.

Please feel free to check out the blog.  If blogging is something that appeals to you, my advice would be to do your research.  Know what it is you want to say and how you want to say it.  Be honest and truthful about who you are and how you feel, and people will respond.  Finally proofread.  Nothing turns off people quicker than typos.