Let's Get Together!

By Kiara Tatum

LtoR Mike MacDonough, Melanie Kozak, Jhenna Pacelli , Jason Kozak, Tara Suplicki, Kiara Tatum, Joshua Griffis, Collen Brunetti, Kevin Roberson, Braden Buehler, Kirsten Larson, Alex Castro Flipse & Picture taken by Debbie Castro (PHA/Director of Volunteer Services)

Planning for the first Generation Hope meet up started in the winter with the idea from Melanie Kozak and Colleen Brunetti.  They wanted all those who could get to NYC to come out and to have Generation Hope get together.  I suggested doing it during the warmer months because I know how difficult winter can be for me despite this winter being as a warm as it was.  I was really excited to meet some of the people that I known from Facebook.  Three days before the meet up, I had an emergency and was sent to the hospital by ambulance.  I really didn’t want to miss out on this gathering, so I prayed and hoped that I wouldn’t be admitted, and I wasn’t admitted.  I left the hospital later that evening with a prescription and instructions to rest for a few days.  However, I had to prepare for the meet up on Saturday.  I had to get my hair styled, so I did.  The medical emergency took a lot of energy away from me, but by Saturday morning I was ready to take the train to NYC to meet my phriends.  I looked forward to the meet up for months, and the lack of energy and an emergency hospital visit wasn’t going to keep me away from going to this. 

Kiara, Debbie, Tara, Kevin, Melanie

Weather was beautiful and I was anxious, but happy to be meeting up with phriends my age.  My support group members are older than me, and some of the patients have children my age.  So this meeting was important to find phriends that shared common interest with me and not just PH. First I met up with my NYC “tour guide,” Kevin, and he brought me to Ellen’s Stardust Dinner – Colleen’s choice in restaurant – near Time Square.  After two buses and a couple blocks of walking, we arrived. I was there amongst friends that I talked to on Facebook or email, but today we were in person.  So surreal!  We greeted each other with hugs and laughs as we waited to be seated at the diner.  Did you know that Generation Hopers are very talkative?  Well at least that day we all could be together and have a great time at the diner.  Enjoy the good food and company – great pick Colleen!  The wait staff sung songs from the musical "Rent" (Joshua Griffis's favorite musical) and "Mamma Mia", performed a Whitney Houston and a Michael Jackson number, and even did a great job rapping to Nicki Minaj’s "Super Bass".

Alex and Kiara

After brief discussion of what to do after we ate, we then headed to Time Square.  There were vendors in the streets, and we all shopped and looked around.   We had such an interesting time getting to know each other out in Time Square. Some of us – Alex Castro and myself – stopped and brought some jewelry.  And I’m not sure how many cups of coffee Debbie Castro had, but that girl loves some Starbucks coffee, and there are plenty of them in NYC.  While the man prayed for over me, Alex had my back just in case he decided to go pick pocketing or something.  And thank you to Melanie for coming to my rescue when the woman in the yellow t-shirt, who was mediating with other yellow t-shirt people, said to me that I could be healthy if I mediated.  Melanie gave a quick PH lesson – with a Jersey attitude – to the woman.  Using oxygen always seems to attract people of all kinds.  It’s hard to get used to the stares, but it felt great to have my new phriends around to support me.  It was getting late, and I know I had to get back to the train because I was running low on oxygen.  So I took the taxi with Jhenna and her husband, Mike to Grand Central Terminal.  We sat down and hung out at Grand Central before our trains arrived.  It felt so good riding home on that train.  Joshua posted on Facebook that the remaining phriends saw the musical Rent that night, one of my favorite musicals.  I wish I could have seen it with them, but you know that your life is controlled by your oxygen supply.

Kiara with Elmo

I really needed that day.  Being with other PH patients that are going through similar situations and your age was just perfect.   We may talk on Facebook, but it’s not real until you see each other.  It’s like you know you’re truly not alone.  That day brought more light to the darkness of having PH, it empowered me and I gained a little more hope, and now I’m more armed against my PH fight.  We already agreed to have another meet up possibly in October.  And maybe more Generation Hope meet ups will start popping up all over the world.

Young Adult Advisory Board: Driving Generation Hope Home

By Sean Wyman

Sean Wyman

During 2009 things were changing at PHA, and questions were being asked of the young adult patients on how PHA could better serve those who utilize their service. I was privileged to be a part of a focus group conference call with several young adults who have pulmonary hypertension, and we were being asked questions on how PHA could better serve us and others like us. I think at that moment was when things started to take place and soon after this conference call, myself and several others received emails asking if we would like to be part of the Young Adult Advisory Board for PHA. The goal of the Young Adult Advisory Board was to help develop programs for young adults and young professionals in their 20’s and 30’s.  Many of us have different needs than the children and older adult counterparts. Throughout the last two years, the Young Adult Advisory Board has helped bring forth the Generation Hope Google group, Facebook page, blog, and other resources for young adults with pulmonary hypertension.

Lindsay Nicol

Colleen Brunetti

 The advisory board consists of several young adults who are active in the community raising awareness and are advocates for pulmonary hypertension. Colleen, Brit, Lindsay, Sean (me), and our newest addition Josh have been working within our communities—online, locally, and beyond—to help enrich the lives of others that are much like ourselves, young adults that want not to be defined by our PH, but to inspire others to continue to fight and continue to hope. Colleen summed it up best when she said, “I helped start Generation Hope because I wanted to give back to the community and create a safe space where people our age could gather and share similar experiences.” Personally, I share the same sentiment, and I know that Brit, Josh, and Lindsay feel the same way. We work closely with Chanda at PHA to continue to provide ideas on how to improve PHA and Generation Hope services for young adults.

Brittany Riggins

Joshua Griffis

In closing, we on the Young Adults Advisory Board are here for you and always welcome comments and ideas. If you’re fortunate enough to be joining us at the 10th International PH Conference and Scientific Sessions, and you see us, let us know what you think. Finally, Colleen, Brit, Lindsay, Josh, and I would like to invite you out to Generation Hope After Dark on Friday, June 22, 2012 at 9pm. We hope that you’ll come out and meet with us and other young adults like you.  Rumor is a Special Generation Hope Drink will be availabe for purchase. We look forward to seeing you there!

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.

A Journey Not So Smooth

By Kiara Tatum

Kiara's Family On Path to Stone Church

I was noticing that over the last week there were more postings of people with PH venting and feeling down on the PH Family Facebook page.  Although I didn't post it, I also had a couple of low days last week.  And one day, I stayed in my bed all day long because I just couldn't face the day and wanted to hide.  This PH journey isn't a smooth, a steady or an easy path that allows you to simply take medication, and you will be cured.  It's an uneven, bumpy, rough and difficult path.

Kiara and her nephews

I was reminded of last summer when I went on my first hike since I was diagnosed with PH.  It was a place I wanted to go to for years.  I printed up the brochure in 2007, and I told my family and some friends that I wanted to go to Stone Church in the Town of Dover, NY.  Knowing I was on oxygen and I could barely walk a block at that time, I had to see it.  During my six-minute walk tests, I would have chest pains, dizzy spells, would have to slow down and hold my chest, so going on a hike to Dover Stone Church just seemed impossible.  But I wanted to do it.  So summers would pass, and I never went.  I knew I wasn't physically ready to go.  Then in the fall of 2010, I started Remodulin subcutaneously, and it gave me hope to reach my goal of going on the hike to Dover Stone Church.  In the summer on August 20, 2011, I made the journey. 

Stone Church Entrance

We had to drive up and around the mountain which presented thinner air as we got closer to the site.  I had to climb stairs, I had to cross rocky paths, I had to walk over slippery wet rocks, walk up a mountain, but I did it.  I slipped, but I didn't fall; my oxygen tank rolled the wrong direction, but I pulled it with me.  I had to let my mom hold my oxygen tank for me, but I kept walking; I had to stop for breaks, but I never gave up.  I had to catch my breath, but I had more breaths left and I reached the top, and I saw Dover Stone Church.  When I walked inside the cave, I knew my journey was complete.  I was so proud of myself, and my family was proud of me as well.  It was so beautiful and so serene.  Knowing what I had to go through to get to that point made the journey so much more meaningful and powerful for me.  I had the strength, courage, faith and hope I needed to take on that not so smooth journey to see the natural beauty of this world, and I did it!

Path to Stone Church

So sometimes you may want to give up because you feel like you don't have any more strength to fight, but hold on a little longer.  It's not going to be easy or straight, and you're going to feel depressed and angry sometimes.  Just remember there is going to be something--a medication change, an inspirational song, an encouraging word from a phriend, or anything--that will give you more hope, courage and strength needed to fight another day and another day to get out of bed, to take your medicine, to do the simple yet hard tasks of the everyday.  Also remember you are not alone; you have your family, friends, and phriends to help you through each day.  Have hope on this not so smooth journey!  And maybe one day, we won't have to fight any more.

Planning for College: Know your Rights (and Responsibilities)

By Colleen Brunetti

Having Pulmonary Hypertension can throw a few kinks in your plans, but it doesn’t mean things like college are now impossible. What it does mean is that you may have to do a little extra footwork to prepare for a major transition like college, or to adjust your current college experience to a new diagnosis.

There are many supports and legal rights put into place to support students with health related disabilities, and they fall under the Americans with Disabilities Act and/or Section 504 of the Rehabilitation Act of 1973. Under these two laws it is up to you if you want to report your health condition and request special supports, and it is the responsibility of the school to take certain steps to support these needs. But you have to know, and you have to ask.

The Federal Government has put together a very comprehensive guide on this topic, which can be found here: US DEPARTMENT OF EDUCATION

You may also find PHA’s other college planning resources helpful, found here: MAKE THE MOST OF COLLEGE WITH PH

Remember, PH doesn’t mean life stops. It means we adjust and find new ways to make things happen. Good luck with college!

Importance of a PHriend

By Kiara Tatum

Relationships are very important for young adults. We rely on our friends for their advice and thoughts on what to wear out, who to date, should I or shouldn’t I buy this scenarios and was I at fault for the argument dilemmas. We also need our friends for getting through breakups, arguments with our parents or boy/girlfriend. We met these friends because we went to the same high school or college, attended the same church, grew up together, lived on the same block, or have mutual friends. You may like the same activities, same music, dress in a similar style and have similar values, but do they have a chronic illness called pulmonary hypertension like you? Do they know what it’s like to wake up and have a bad day and you can’t walk from your bedroom to the bathroom without resting? That you can’t go to the gym, go to the mall, go to the movies, nor do anything fun because it hurts to breathe? Do they understand that just because you don’t look sick and don’t always feel sick that you are sick with a rare and progressive disease? That’s where a Pulmonary Hypertension friend (PHriend) comes in.

There are some things that even a close friend just won’t understand about having a life-altering illness that shapes how you live. We don’t want our illness to define us, but it’s now a vital part of who we are. I can call my PHriend at 11:30pm and cry about how I wish I could go back to work, that I wish wasn’t sick, that I feel like a burden on my family or that I just want to be normal. My PHriend doesn’t have to ask questions like what PH is, what’s a 6-minute walk test, or what’s an echo? My PHriend would understand, has probably been there before, and can help me get through this low point. A PHriend is a great to have because you can have common interests besides PH. My PHriend and I have similar taste in music, are the same age, have to deal with family and relationship issues, and have similar values. We are there for each other at anytime to get through this illness together.

My best PHriend lives more than 1,000 miles away from me, so we can’t hang out every day. We rely on the phone and Internet to stay in contact. I like to hear her Southern accent, and she says I have a NY accent which I don’t hear. We met from a PHA focus group for young adults via conference call, and we been PHriends ever since. One day we will meet in person, but it doesn’t matter if we never do. We have been there for each other providing each other with strength, hope and love. She’s such a blessing in my life. Everyone needs at least one friend with pulmonary hypertension to help them through the low points and to share those high points that only a PHriend would understand.