About a week later, I received an email asking me if I wanted to participate at Conference as part of a Patient & Family Led Session. Of course, I jumped on this opportunity. I found out I would be on a panel with David and Mark, and we would be talking about communicating about PH. Whoa! I thought. This was the one part of having PH that I had been struggling with the past two years, but I thought this would be a great start to be more open about PH with my friends and family.
I invited my mom to come with me to Conference because she is also my caregiver, and I thought she would benefit from the experience as well. We were both so excited to be attending.
We arrived at Conference late Thursday night. I was so happy to be in Indianapolis, and so happy to know that the next day I would be meeting people who were like me and living with PH. At this point I had never met another person with PH.
Friday I went and met with my group for the patient led session, and it was such a wonderful experience for me. My first meeting with people living with PH. Our stories were so similar, and I could tell they understood, they fully understood. This was a feeling I had not experienced, and it was honestly one of the best feelings in my life. This was already off to a great start.
As my mother and I walked around Conference we had the opportunity to meet other patients, caregivers, doctors, and family members. Everyone was in good spirits and the energy was so welcoming and friendly. We entered the Grand Ballroom and sat for the Conference opening. We had the privilege to listen to Jeannette Morrill; she is a long-term survivor of PH. She shared her journey with PH, and she is now one of my heroes. Her story was so inspiring and beautiful. I have always been hopeful living with PH the past two years, but hearing all of her challenges and how she overcame these challenges gave me a new sense of hope. I truly am beyond thankful for her sharing her story. I hope to thank her in person someday. I recommend buying her book, Living with Pulmonary Hypertension: 34 Years and Counting. She has been living with PH for over 38 years. Listening to Jeannette’s story was an experience I will never forget. As she stood there speaking, I had a rush of emotions all at once. A rush of tears came running down my cheeks, I couldn’t stop them. I had a mixture of emotions, but I knew that I was feeling incredibly hopeful, strong, and energized to beat PH. My life was changed by this story alone. Even writing about this right now, I can’t help but feel the same emotions.
My next Conference experience was participating in the patient led session, and our topic was communicating about PH. This was such a wonderful moment for me. I got to share my story, listen to David's and Mark’s stories, and engage with other PH patients, family members, and caregivers. I am thankful to have been able to share my story, and I have made it a goal of mine to be more open and honest about living with PH with my friends and family. It was amazing to learn about David, Mark, and the patients in the audience. I will always cherish this moment.
After, my mom and I walked around. We went into the Exhibit Hall, which had various booths with lots of information. I picked up several pamphlets and information packets. It was so nice to get to walk through and meet new people and get new information. We ended the night with dinner and learned about early diagnosis and the upcoming PHCC (Pulmonary Hypertension Care Centers.) These are so interesting - be on the lookout for PHCCs! These are PH centers that will specialize in PH. I think this is a genius idea, and hopefully this will lead to new medical advancements in treatment, early diagnosis, and a cure. This was a day full of excitement and I was beyond tired at the end of the night. Off to bed I went.
Saturday started off great! We went to breakfast and had the opportunity to meet more people, as well as, having a doctor at our table to discuss a specific topic. We sat the nutrition and PH table. Tim Lahm, MD from Indiana University School of Medicine, was our doctor. We had an interesting discussion about nutrition and PH. Dr. Lahm answered all of our questions, and I learned a lot. He was very helpful, and it was nice to meet doctors other than my own, that are committed to making a difference for patients with PH. We stopped by the Research Room and had the change to participate in studies that are working toward finding more information on PH. We even got to give blood for the research, not my favorite, but I am committed to making a difference any way that I can. We then headed to the medically led session for coping with a chronic illness. I heard from medical professionals and other patients, and it was very informative. I loved being able to listen to the stories from patients, caregivers, and family members. My mom had the chance to go off on her own and attend some support group meetings for caregivers. I took a nap. Then we attended more medically led sessions, and then a very exciting fashion show. The show was a fun experience. There were PH patients showing off their personal style, and how the strut with their oxygen, and other PH treatment types.
Sunday was the final day at Conference. I had been having such an great time. I attended a breakfast for PHA PHriends. I was able to meet everyone in person who I had communicating with over the phone and email. That was so awesome. We had a great breakfast, and again I was able to learn more and more. I attended one more medically led session, and then Conference was wrapping up.
This was my first Conference and I hope to attend every one that I can. I am already excited to go to Conference 2016 in Dallas! I am also in the works of planning a charity event benefiting PHA. I am so energized to be a part of this wonderful organization. It isn’t everyday you come into an organization and feel like family. The community is full of rock stars. The people involved are so amazing and I am so grateful for this experience. I hope everyone will be able to experience a Conference. I am thankful for the whole experience and the awesome people I met, and the other great people who shared their stories. My life is truly changed, and I am beyond blessed to have had this experience.
Written by Elisa L.
