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!