My Journey with Pulmonary Arterial Hypertension: Lynn Bastian
My name is Lynn Bastian. I am 64 years old, married, and have three daughters and six grandchildren. On October 28, 2005, I was diagnosed with pulmonary hypertension (PH). I had no clue what that was. I was misdiagnosed for years as asthmatic bronchitis complicated by obesity due to poor diet and exercise. When I finally received the diagnosis that I had an enlarged pulmonary artery, I checked online to find out what was going on before I saw my doctor.
Big mistake.
My specialist in Chicago explained the disease to me and gave me a copy of The Survivors Guide, which is amazing. Everyone should have one. We chose a therapy of IV Remodulin delivered through a central-line catheter. Gradually, I started to improve. I didn’t really know how sick I was until I started feeling better. This disease is progressive and has no cure. The best you can expect is to halt the progression.
I continued to feel better, and, after 10 years, my doctor suggested weaning me off the IV and going to all oral meds. I did, and it worked. Today, I feel better than I have in years. My doctor suggested I join a PH support group. The idea of driving an hour or more to be with people I didn’t know was not appealing, so I did not do this.
My daughter and I did attend a Pulmonary Hypertension Association (PHA) day conference in Chicago called “On the Road.” It was the first time I was around other PH patients. I was so pumped up from the materials I received, I proudly wore my PHA lanyard at work to put my keys on. At a work event, I met Mary Gerth, who was a member of my church, and she asked if I knew what PH was. I told her yes and that I had it. She said she did too and asked if I wanted to go to a PH support group meeting in Elmhurst. I went and continued going. I joined PHA. I attended other events and group meetings, which changed my life. I was surrounded by people who knew what PH was all about and who shared their life journeys and gave practical suggestions on how to live with this disease.
In about 2015, the southside Chicago PH support group leader, Dale Mack, started to have health issues and needed a heart transplant. Members asked me if I might be interested in taking on the group, at lease until Dale was able to return. My daughter, Leah, and I were at the Dallas conference when she decided that yes, we could do this. Sadly, Dale gained her heavenly wings, and I have been leading this group for almost two years now. My goal has been to foster a sense of ownership to all the members, to open up and ask questions, and to become a community, a family.
It has been a roller coaster of emotions and health issues. There have been days I didn’t think I would be around much longer. There are days I don’t feel like I have anything wrong with me, and then the bottom falls out.
There is nothing more devastating than learning a fellow PHer has passed because they couldn’t get the proper medical help or medication. Along with this disease being rare, the medications are astronomical in price and co-pay assistance is needed for many of us. In the last couple of years, that funding has dried up considerably, and now many of us are scrambling to get our life-saving medications.
It is important to know about your PH disease. It is important to bring awareness to the community at large. Sadly, not a lot of doctors or health-care providers are familiar with PH. Many family and friends do not know what it is either. Several of us did not know about PH until we were diagnosed, so I try to foster awareness. I have support from my family and friends. We have participated in fundraising events to bring awareness of this disease.
My niece, Elizabeth, is a nurse who likes to run. Now she runs for me in the Let Me Be Your Lungs program with Team PHenominal Hope. She ran a half-marathon this year. As she neared the end, she put her four-month-old baby on her hip and asked me to hold her hand and walk across the finish line. She even gave me her medal. I am blessed by family and friends. My goal is to help others. It has been almost 13 years, and I am still alive. I am still here. Life is an adventure. Don’t ever give up!
