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.

A New Year, Get Active!

It’s the start of another year, and most people are working on the traditional New Year’s Resolutions: eat healthier, go back to college, change career, lose weight, work out more … you know, the usual resolutions! But those of us with pulmonary hypertension don’t always have the same priorities as others. One of our top priorities is to remain active, even though, the simplest task can be difficult. But there is a way to get active this year that’s a little different from the norm. You can start your new year by becoming involved in the community that surrounds you.

There are many different ways to get active in the community. Why not start with your local PH support group? You can co-lead a support group, help with getting sponsorships for meetings, make telephone calls to other members or local PH doctors, help with topic ideas, get speakers for your support, help with a PH awareness event or fundraiser, and much more. And if there isn’t a local support then create your own support group. PHA can help you get started on creating a support group, spreading the word to other PH patients in your area, and help you maintain your support group. For more details visit PHA.

I started my support group in November, 2008 because it was over two hours to a support group, and I had a chance to give back to the PH community and stay hopeful. PHA helped me to get started with topic ideas, leaders training webinars and information to maintain my group. Through my support group, we have had PH awareness events from participating in a parade to setting up informational tables. It has been a wonderful experience that keeps growing and growing.

If you want to try something different outside the PH realm,there are always not-for-profit agencies. Most non-profit agencies survive on the help of their community volunteers. Generation Hopers can make a difference in the lives of the people in their community or to a special cause. You can work with the homeless population in the soup kitchens serving or cooking meals or volunteer in your local hospital and nursing homes. Sometimes sitting with other patients in the hospital or reading to the elderly for a few hours a week can be really fulfilling. You can even volunteer at your local library, domestic violence shelter, youth shelters, and so many other places. If you need help, contact your local United Way agency for more volunteer sites.

I recently joined a board of a non-profit agency’s new youth program in the local high school, and I have impact on the curriculum development, community events, advertising of event, fundraising ideas and much more. I’m so excited to get more involved in this great new program this year.

Where I dedicate most of my time and energy is at my church. I do this because it gives me the most spiritual and emotional fulfillment, and gives my life purpose and meaning. I joined my church’s Website Ministry and Youth Ministry. I love the Website Ministry because I do most of the work from my home computer and I use the least amount of energy. I’m able to serve God by sharing information with others without ever leaving my home especially on not so good days. But I wanted to do more and I wanted to serve God deeper, so I joined the Youth Ministry. Working with the Youth Ministry allows me to minister to the youth of my church in different ways. I can be a resource to the local youth and help with coordinating youth program, events and activities. I find it challenging, but I love to learn more of how I can help the youth today and serve the Lord.

Life is more than your PH diagnosis, so don’t let your illness stop you from anything. Get active this New Year! Look at what you would like to do and your strengths, and then match it to what surrounds you in your community. You can make a difference. Getting involved and volunteering in your community keeps you active, gives your life purpose and meaning, and empowers you with hope.