Generation Hope Goes to Indianapolis

by Kiara Tatum

It's almost time... conference starts on Friday, June 20.  And as people are traveling to Indianapolis for this year's conference, I see many postings from Generation Hope about their travels on Facebook. I'm very excited to meet up with PHriends that I haven't seen in two years, meet new PHriends, and see PHriends in person for the first time.  I"m a bit nervous about flying again.  My family isn't able to attend with me to conference, so I'll be traveling alone.  So as we all check in to the conference over the next days, don't forget review your conference program book.  There are many sessions centered around young adults that we hope you will attend.  There's also a special meet up for Generation Hope.   Generation Hope After Dark will be held on Friday, June 20, 8:30pm.  I hope you'll make it out. Previous Generation Hope After Dark in Florida was a lot of fun!  Brittany Riggins wrote about Generation Hope After 2012 in a previous posting.  This year we're adding a little game which you can win prizes, so you don't want to miss this one.  Join us for an evening of fun!!!

Safe travels to everyone!

Generation Hope Goes to Boston

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Posted by Colleen Brunetti

On June 8^th, PHA brought their education program “PHA on the Road” to Boston, MA. Doctors, patients, caregivers, and family members convened at a beautiful hotel on the Charles River. It was a day of education and networking, a time to make new friends, and a time to meet up with old.

The day started with pre-forum support groups where newly diagnosed, longer-term patients, parents, and caregivers could meet up specifically. I, along with Kiara Tatum, led the newly diagnosed group. I remember the early days of diagnosis…wondering how to find the right doctor, trying to have confidence in your treatment plan, the worrying and wondering that comes with a diagnosis like pulmonary hypertension. So many patients reached out to support us in those early days – it is a privilege to pay it forward and offer that support for others.

The opening session went over diagnosis, treatments, and long-term management of pulmonary hypertension. No matter how many times you attend these events, a refresher always helps, along with the very good chance that you will pick up one or two new things along the way. Break-out sessions throughout the day offered time to learn about more specific areas of interest, such as exercise and diet, congenital heart disease, and preparing for travel and emergencies.

Colleen with Jeannette Morrill

The highlight of the day’s events for me, as I’m sure for many others, was listening to Jeannette Morrill talk about her journey with PH.  Jeannette has been diagnosed for 37 years!  This is totally unheard of in the PH world - especially as her diagnosis came in 1976 prior to any real treatments being available.  Jeannette's story is one of perseverance and hope, brutally honest in the challenges, and full of celebration in the triumphs.  

Finally, the day wound to a close, ending on a high note, with an overview of clinical trials for new treatments, some perhaps not so promising, but several that may be set to offer new hope for patients.

As the conference wound down, Generation Hopers gathered in the hotel restaurant for our meet-up. We’ve had meet-ups like this a few times before, but it never ceases to amaze me, sitting there watching everyone interact. The connections that happen are nothing short of spectacular. PH can feel pretty isolating, but I could look across that circle and see another mom raising young children while she battles PH, and I know she “gets it”. Two other patients connect as they share news of their pending lung transplant evaluations. What’s it like to be in your 20s or 30s and staring down a full lung transplant? I don’t know. But they do. And when you face anything like this, you need each other.

By far the highlight was sitting in that circle, listening to each attendee talk about their hopes – what gives them hope, or what they have hope for. Hope that children will no longer know their mom as “sick”, hope for a favorable transplant experience, hope to have to use less oxygen, hope for new and better treatments… the hope that binds us together and spurs us forward. Thank goodness for moments like these.

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.