Sometimes It's PH!

Bringing PH Awareness Your Community

By Kiara Tatum

Doctors are taught in medical school that if they hear hoof beats, they look for a horse not a zebra.  Meaning if a patient is describing symptoms of shortness of breath, fatigue or other common symptoms, then doctors assume common ailments such as Asthma, Obesity or COPD.  However, we as Generation Hope PH patients know that sometimes it’s PH.  So it’s up to Generation Hope to spread the word about PH and since PH Awareness Month is around the corner in November, it’s time we take action.

 

With help from Yusetty Medina, Community Advocate Manager from Accredo, I set up an informational table at my local mall to hand PH pamphlets to crowds of people for PH Awareness Month.  The goal wasn’t to raise funds, but to raise awareness about Pulmonary Hypertension for early diagnosis.  I ordered the free pamphlets from PH Association and Yusetty brought informational brochures from Accredo.  There were also goodies to hand out: chocolate, candy and bottled water to key chains, PH Awareness bracelets, flashlights, pens, hand sanitizer and travel size Band-Aid holders.  Together we talked to many different people from the young to old about Pulmonary Hypertension.  This year, I plan to do the same, but with a little more help from my support group to have a bigger impact on the community.

Yusetty and Kiara at PH Awareness Event 2011

You can do it too.  It doesn’t take much time to organize an awareness event.  There have been a couple of Facebook events called “Show Us Your Stripes”, and that’s something that we can all do in November by posting pictures of ourselves, family, and friends wearing zebra stripes and posting pictures online and explaining to Facebook friends what the zebra stripes mean.  Another simple idea is setting up display boards for the month of November at your local community center, library, college campus, or wherever you can find a spot that will be seen by lots of people in your community.  You can also raise awareness through the media by telling your PH story with your local newspaper.  Additionally, if there is an event already planned in November, maybe you can have a table set up there about PH, such as a local school concert.  Or request an Awareness Month proclamation from your mayor and/or state governor.  There are other great ideas for you to get involved this PH Awareness month.  Check out PH Association at http://www.phassociation.org/AwarenessMonth2012 for more ideas.

I have said it before that the PH journey isn’t so smooth, but by each one of us spreading PH awareness to others, we can make a difference.  We can help others who may be experiencing symptoms of PH get the help and early diagnosis needed to stop the progression of PH.  Don’t let another November go by without doing something.  Take action!!!

No More Rebound Dreams!

By Michelle Joy Guerrero

Michelle Joy Guerrero

What was your dream when you were a kid? It was probably one of those grand things our parents  wanted all of us to be – to become a doctor, a lawyer, a nurse, a teacher, a politician, an engineer, a businessman. I dreamed one of those, too.  Ever since I was little, I’ve always wanted to become a lawyer, and a fierce one at that.  Later on I dreamed of becoming an essayist, a fictionist, and then I dreamed of being a visual artist, an art director, a creative director in a world-renowned ad agency.  We all have our own dreams, and more likely than not they do not differ from everyone else’s dreams. Only, at some point in our lives, we are challenged by the big question, “Can I ever do this?”

I had my open heart surgery when I was 16.  I had a congenital heart disease that kept me from keeping up with everybody else’s pace. After the operation I was free. I played badminton and table tennis.  I joined an Aerobic Dance class.  I was normal, finally.  And because of that I planned a lot of things.  I’d go to law school and then go to an arts school.  I had plans of moving out. I had plans of studying abroad, traveling around the globe, and learning different languages to experience different cultures.  I dreamed of being rich and getting my mom her own car, going on a shopping spree with my future nieces and nephews, renovating our house, and giving my sisters some travel gifts.  Until suddenly, I could no longer play sports or dance aerobics.  I could not even sit or stand still without having shortness of breath.  Suddenly, I was diagnosed with a life-changing illness called Pulmonary Hypertension.  Suddenly, I was facing something that has no cure.  My dreams started blurring, and I started asking myself, “Can I ever do this?”

Having a significantly diminished ability to dream and dream big is common among newly diagnosed PH patients.  There will be a time when you can come up with something you want to do, but you start questioning right away whether or not you can do it.  Sometimes you ask if your body will even allow you to strive hard for that dream.  Sometimes you ask if you even have enough time to reach your goal.  There will be a point in your life when all you can ever see vividly is today and tomorrow or the whole month, but you can’t see anything beyond three months.  Planning your whole life all over again is something your mind cannot react to immediately because of the limitations that you have, but then you have to.

There will be a time when we start planning on pursuing a new dream.  To others, they realize that it had been their calling all along.  To some others, it becomes a rebound dream, one that is not supposed to last a lifetime.  This rebound dream is merely a shot that will make one realize that he can still dream and pursue it, and that whatever it is, it’s going to be fine.

I’ve had one rebound dream before.  I dreamed of becoming something I could easily be and tend to forget everything else I had planned all along.  It seemed practical because I could still pursue a career I could easily do, yet it seemed outrageous because I should forget about who I ever was and everything I could ever be.  But still I tried as much not to think about the things I loved to do because they remind me of things I thought impossible.  But little by little my rebound dream kept reminding me that if I can see a future with a job I do not even like, chances are I can see myself better with a job I love doing.  And so I went back to things I really love and let go of the little details I do not need.  I went back to learning a beautiful craft and decided that this is going to be my future.

Our dreams, our future, are not necessarily ruined just because we have Pulmonary Hypertension. They are still our dreams and our future. The only thing that is changed is how we approach it because we have to make sure we prioritize our health as well. It does not really matter how fast or slow we get there; the important thing is we are being true to ourselves and we are making ourselves happy.

If you are one of the patients who still have a diminished ability to make plans and those who withdraw from their interests, remember that all this is merely an aftershock of your diagnosis. It will wear off eventually. Never ask yourself again the question, “Can I ever do this?” Tell yourself, “I can do this.” Chances are YOU CAN!