Throwback: Merle Reeseman’s Road Trip to 2006 Conference

Traveling all the way from Grove City, Pennsylvania, to Minneapolis, Minnesota, Merle Reeseman blogged about her 12-hour road trip to our 2006 International PH Conference!  She explains how she prepared for such a journey while living with PH and being on oxygen. With her husband in the driver seat and extra supplies in the trunk, the Reeseman’s hit I-80 in search of a cure.

Bright and early Wednesday morning June 21, 2006, we’re ready to go but let’s go back to Tuesday. The car was loaded to the point that we didn’t have enough room for the condenser. It was a choice of that or my clothes and you know which one won out. I had asked my oxygen supplier for a transportable liquid oxygen tank so I could fill my Helios Marathon and not have to worry about a refill or changing tanks every couple of hours while at the conference or on the way to the conference. The liquid oxygen portable took up half of the back seat and when they put in the condenser that took up the other half of the back seat. I still had to pack a wheelchair and suitcases; the wheelchair took up most of the trunk space. Then bags of medicine (I’m on Flolan); coolers for the ice packs; it all had to fit in the car. Well, the condenser lost out. If I wanted a change of clothing, something had to stay. I’m so glad they brought everything over on Tuesday and we had enough time to reorganize and regroup. Thank you HCS. We calculated how much oxygen I would use for a two day round trip including sleep time and each day at the conference and ordered a condenser from Minneapolis for the evenings/sleeping. It would be close but it should work. Extra tanks of oxygen were put in the car – just in case. Have you ever noticed how we PHer’s live a “just in case” life?

Read more from Merle's journey

To Begin to Hope Again: Dale Rankin-Mack

by Dale Rankin-Mack, PH Patient

I remember my first three years with PH. After spending three months in an ICU, I had no muscles left. Each day was scary for me. It was so hard to keep water away from the port in my chest. I took baths because I could control where the water went. I was so weak that I would sit on the stairs and lift myself up stair by stair. My hands shook so badly that I had to ask an amazing neighbor to help with medicine every day. My legs always hurt, and my whole body ached. Besides the pump, I took 13 pills in the morning, and most days, I hardly made it out of bed.

Does any of this sound familiar? Many times in our world, it may seem like we are going nowhere. We privately cry inside, and while our caregivers are amazing, it's really hard for someone to walk in our shoes. However, as PH patients, we also live in an amazing world. We have 12 therapies, three approved by the Food and Drug Administration in just two months in 2013. Each year, as we wait for a cure, it seems like PHA, medical professionals, researchers, and pharmaceutical companies are trying to make our PH experiences more tolerable.

I'd like to tell you a story. Two years ago, I went to my first International PH Conference, through the grace of a scholarship. I was very curious about the latest therapies, and I found the Conference to be quite amazing. You could sit and actually talk to researchers. You could go to a variety of meeting, discussions, and forums and speak directly to the doctors running clinical studies or the representatives from the companies with the newest therapies.

On Saturday at Conference, something really cool happened to me. I had gone to a panel discussion with a group of doctors and researchers, talking about new therapies, including an internal pump and catheter. As I left the meeting, an older couple followed me out. As I started walking over to another session, the man touched my shoulder and said, “You know my wife has that internal pump." We talked about it, and I became curious to get involved in a clinical trial.

Today, I have that pump inside of me. Without that Conference, it would never have happened.

Yes, I'm still on many of the same medications as before, but after that Conference, I feel a renewed sense of hope. I’m not saying that everyone should go to Conference to get a new medication, but I am saying that Conference opened my eyes to even more possibilities in PH research and clinical trials.

I have a renewed sense of wellbeing and excitement for the future after going to Conference and seeing all the possibilities. For everyone out there with PH, or PH with another horrid disease, there is always hope. The doctors, researchers, medical staff, and research companies who are working to cure this disease are working faster than every before. New therapies are being tested each year. Always know there is hope each day for everyone to find.

I am convinced that I wouldn’t be where I am today I hadn't gone to PHA’s International PH Conference in Florida in 2012. If there is any way for you to get to Indianapolis this year, please come. Bunk with a friend, bring an air mattress - just find a way to come! You will see your PH in a whole new light. You will learn things, meet new friends, and smile a lot during these few days together. It is the most valuable time and effort you can make. I hope and pray to see you there!

Throwback: Ken Schmidt's Road to Conference 2006

At our 2006 International PH Conference and Scientific Sessions in Houston, attendee and PH caregiver, Ken Schmidt, gave a recap of his involvement with PHA's Conferences since his wife's diagnosis in 1998. Our 2008 Conference was themed Roadmap to a Cure, so Ken told his story using road analogies. How fun is that?

Ken's wife, Joanne (left), participates
in the PHA Fashion Show at Conference

My road trip began in 1998 when my wife of only 5 years was diagnosed with PPH. Joanne’s brother had been diagnosed 3 years earlier with this awful disease and so Joanne was motivated to find as much information as she could about PH.

In 2000, Joanne was like a mid-sized sedan traveling the PH interstate, while I was just like a small U-haul trailer. Joanne found the PH map and headed out to Chicago, while I tagged along hoping to find useful items to carry back to Long Island. Joanne unhitched me at the male only caregivers session, which was co-led by Jerry Paton. Jerry was like a confident 18 wheel big rig. He had been traveling the PH interstate and offered us honesty, compassion, and hope. He told us there would be potholes, speed bumps, and slippery conditions ahead, but he also saw brand new roads being paved, that someday we would be traveling along.

Read more of Ken's story

Video: PHA Visits Indianapolis Ahead of Conference!

PHA staff member, Rebecca Gifford, recently visited Indianapolis in preparation of our upcoming 2014 Conference this June. Not only did she visit the Conference hotel, she also scoped out different locations for our Kids' Room field trip, and got the chance to meet with some of our vendors who will help make Conference an amazing experience for all!

Check out the video below, filmed on-site during Rebecca's trip.

 

Throwback Thursday: Sandra & Carol at Our 2008 Conference

Check back every Thursday from now until our 2014 Conference in June as we “throw back” to past Conferences!

In this video from PHA’s 2008 International PH Conference in Houston, Texas, we caught up with patients Sandra Eckland and Carol Levy who were enjoying their time at Conference. Hear directly from these two women about sessions they attended, friends they met and more!

“I’ve met a lot of people, and I’ve particularly enjoyed being able to put faces to the names of the people that I chat with or see post on the message board…” – Carol Levy
 

“Find a Way to Celebrate Each Day”: Doug Taylor Offers His Behind-the-Scence Look at Conference

With PHA’s 2014 International PH Conference and Scientific Sessions quickly approaching, we thought it would be beneficial for the PH community to hear from a familiar face about some things to expect at Conference. Doug Taylor, a PH patient from South Carolina, is co-chair of the Patient/Family Led Session Subcommittee on our Conference Planning Committee. This means that not only is Doug attending Conference in Indianapolis, but he is also helping determine the different sessions that will be presented for all attendees! Along with his role in Conference, Doug is also a PHA Support Group Leader, a PHA PHriends email mentor and a volunteer with our New Patient Advisory Board.

We were able to ask Doug a few questions about his involvement with our 2014 International PH Conference and PHA. Read on to hear about Doug’s Conference experiences and what you can expect during the Patient/Family Led Sessions!

Kristie [PHA Publications Intern]: What is your experience with PHA’s International PH Conference?
Doug: I have attended three Conferences; the first was in Houston, Texas [in 2008].

K: What are some of your favorite moments from previous Conferences?
D: I had an incredible experience going into the first dinner plenary session in Houston. I was extremely stunned to see 1,200 people in the room! All of them were there because they had pulmonary hypertension, were caregivers for PH patients, were friends of PH patients or were in the healthcare or pharmaceutical professions dealing with PH patients. It was an unforgettable experience. I absolutely loved the opening plenary session in Orange County, Calif. [2010], about Dr. Frantz, Dr. Benza and Jessica Lazar, PA, climbing Mt. Kilimanjaro to promote PH awareness. At the 2012 Conference, I was able to meet three of the four founders of the Pulmonary Hypertension Association, and their husbands. All of us owe a tremendous debt of gratitude to what they have accomplished!

K: What are you most excited for during our 2014 Conference?
D: I am most excited about everyone coming together! There is so very much from which to choose, but basically it all comes down to the people who attend. Our sense of "community" is what makes us strong and what helps us grow.

K: What can attendees expect for the Patient/Family Led Sessions during Conference?
D: The Patient/Family Led Sessions at the 2014 Conference will be a mix of old and new. This year, we have made a very good effort to tap panelists that have not sat on previous panels. We have also made an effort to emphasize the diversity of the PH community, such as the diversity of age, gender, associative diseases, geographic location, etc. We have tried to address the interests of Generation Hope, newly diagnosed patients, long-term survivors, families, and Spanish-speaking patients in the sessions we have planned. I would like to remind everyone that the Patient/Family Led Sessions are an opportunity for patients and family members to share ideas with each other.

K: Will you be bringing anyone along to this 2014 Conference?
D: My mom, Mary Jo, is my primary caregiver, and she will be coming with me to the 2014 Conference. She has attended the Conferences in Orlando [2012] and Orange County [2010].  Each time she has volunteered to help out. Not many people know it, but my mom was the very first official registrant for Conference 2014! I want to encourage everyone to volunteer to help out in some capacity. You would not believe how much volunteering enhances the Conference experience!

K: Is there anything else you’d like to share with the PHA community?
D: I would like to remind the PHA community that we are a "community.” We each individually have a terrible disease, but together, we share a common interest – to find a cure for pulmonary hypertension. While we search for that cure, we can help ourselves and each other with improving our daily lives. One way I work to improve my own daily life is to find something to enjoy in what could be a horrible day, week, month or year. I encourage all of you in the PHA community to look for something good to get you through the rough times we all face. Find a way to celebrate each day!

 
Posted by:
Kristie Link
Publications Intern, PHA

'Wall of Hope' Spreads Inspirational Messages at Conference

At our 2012 Conference, PHA hosted a “Wall of Hope," where patients, caregivers and medical professionals could leave inspirational messages for others in the PH community. The 2012 Wall of Hope asked attendees to answer the question: "What does Conference mean to you?” This question yielded a variety of responses from attendees, from personal examples of their own PH journeys, to words of wisdom and tales of new PHriendships that blossomed as a result of being involved with PHA and Conference.

On the "Wall of Hope," many attendees said Conference meant that they finally got to meet other people who understand their condition and understand what they are going through. Others said that at Conference, they felt as if they were surrounded in an inclusive environment of people who care and understand them. The word “understand” was used in so many responses – which just shows how valuable networking at Conference is!

To many attendees, Conference also meant “PHriendship." It is truly powerful that at Conference members of the PH community get to meet their “PHriends” in person, who they may have only previously been able to speak to through email or Facebook. Attendees said that these friendships have helped them immensely in their PH experiences, and the love and support they are able to gain from these relationships is what helps to make Conference so special for them.

Many of the Wall of Hope quotes also said that Conference meant learning a lot about PH while they were there. From hearing about others’ experiences with PH to learning about new and innovative treatments currently being researched and developed, Conference attendees feel as though they are “in the know,” and as if they are keeping connected with the latest happenings in PH, by attending Conference.

Below is a sampling of some of the great quotes from the 2012 Conference Wall of Hope:

“What Conference means to me…”

• “Conference means support, PHriendship, and love!”
• “Being at Conference means I traveled across the country on an airplane for the first time since I got PH. It means smiling at people who return my smile rather than stare at my oxygen tube or feel sorry for me because I have an IV pump.”
• “Conference means…meeting others who UNDERSTAND!"
• “Conference is a great way to feel like I’m just one of many. Here I’m not different!”
• “A lot! I love being able to see the people that I chat with. PHA has helped me learn and connect with others. I love to learn and feel comfortable enough to ask questions. It helps to make me feel more comfortable about my research.”
•  “I’m a ten-year survivor and I dearly wish that I knew about this ten years ago – It’s amazing, a little overwhelming, and just heartwarming. I look forward to see what’s around the corner.
• “Conference is an opportunity to empower others with our experiences and knowledge of PHA. There is a happiness that overcomes you just knowing that you are in the presence of such strong survivors that all have the same purpose…which is HOPE.”
• “Conference means there is freedom in the future for patients with this disease.”
• “Conference is inspiration and aspiration for me. Meeting new and old PHriends and PHamily. A few days to feel like we belong to something so much bigger than PH. A time to remember the power of one and PHenomenal hope.”
• “Conference is an amazing opportunity to be a part of something big. Sometimes my family can’t understand what I go through, but my PHamily does. This support has helped me through some dark times. Conference allows me to visit my PHriends who have become PHamily. I found HOPE when I started losing it.”
• “Empowerment!”
• “We are not alone.”

So… What does Conference mean to you? 

Share your thoughts by posting a comment below!

Posted by:
Kimberly Smith
Patient & Caregiver Services Intern, PHA