Lauri Stanfield of Tomball, Texas, received the gift of life in 2015 through a double lung transplant – and gave life by donating parts of her lungs for research. Stanfield, who works in the oil industry, likes to try new things and is considering learning to play pickle ball. She shares her diagnosis journey, life after transplant and how she spreads hope during Donate Life Month.
‘My main goal has always been to make people feel seen.’
By Lauri Stanfield
When I was diagnosed with pulmonary hypertension, my care team gave me a charm bracelet to mark the milestones I would go through on this new journey.
My first charm was purple, to represent PH and said “hope.” I knew that’s what I wanted to give to others in the PH community: hope to manage this condition and live life to the fullest.
My PH journey began decades before my diagnosis. As a teenager, I often passed out. My doctors blamed my hormones and my menstrual cycle. Although I played basketball, ran track and danced for 25 years, I lacked the endurance of my fellow athletes. I never knew why.
In 2012, when I was 40, I was diagnosed with exercise-induced asthma. I brought my inhaler everywhere with me, including on frequent business trips. During a site visit in North Dakota, I hit my inhaler every 20 minutes because I couldn’t breathe.
When I got home, my doctor tested my oxygen level, which was 74. My doctor said he didn’t know how I could talk. For two weeks, I received a biopsy and several other tests.
In July 2014, my doctor said I had PH. He encouraged me to get my affairs in order because he don’t know how long I’d have to live. I felt like I was on an island by myself.
Seeking information
I immediately turned to Google to research more about the condition. I found the Pulmonary Hypertension Association and thought, “Well if there’s an association, I can’t be the only one.”
I saw they had a “PHA on the Road,” now called PHA Connects: PH Community Workshop, in Houston. I signed up with my mom and two good friends. As soon as I walked into the workshop, I was in tears. I couldn’t believe there were other people just like me.
Zeenat Safdar, director of pulmonary hypertension at Houston Methodist Lung Center, gave a presentation about pulmonary arterial hypertension at the workshop. I walked up to her and said, “I want to be treated where you work.”
Fighting for myself
It took a month to transfer my records to the clinic where Safdar and Adaani Frost, director of the pulmonary hypertension center at Baylor College of Medicine, worked. I had to hire an attorney to get them.
On the Friday afternoon when my records were transferred, Frost called me herself. She said I needed to be in her office at 8 a.m. Monday morning.
“You’re a very sick lady,” she said. For two months, we switched up my medication, but nothing seemed to work. By Thanksgiving, I was on six liters of oxygen at rest. I was wheelchair bound, and I couldn’t talk.
My family and I accepted the worst. All I wanted was to spend my final holidays with them.
I was in the hospital from Thanksgiving until two days before Christmas. On my 43rd birthday, my care team tested me for a transplant. They also found that I had idiopathic pulmonary fibrosis and pulmonary veno-occlusive disease, a rare form of PH.
After being released from the hospital, I was on Tyvaso (inhaled treprostinil), Adcirca (tadalafil) and Opsumit (macitentan) to stabilize my condition.
In May 2015, I received a double lung transplant.
Donating life
On the night of my transplant, several doctors asked me to sign waivers to give them access to my lungs post-operation. Because of all the diseases I had, pieces of my lungs went to six hospitals for research.
I felt really good about my lungs, hopefully paving the way to find a cure or better treatments to manage PH. Ten years after transplant, I’m amazed by all the developments in the field, including so many more medication options.
Once I was back on my feet, I wanted to use my experiences to connect and bring hope to others. I started volunteering with PHA and became a co-leader of the Houston Support Group.
Lending support
As a leader, I encourage members of my group to be themselves, test their limits and figure out what they can and can’t do. That’s especially important for parents of kids with PH. Sometimes the parents are so worried, they forget to let their kids be kids.
I always want to provide a space for group members to feel comfortable sharing their stories. When I’m out and about and I see someone with oxygen, I approach them and ask questions about their experience.
Sharing my story
I’m writing a book about my journey, from when I was young and misdiagnosed to life right after transplant surgery to how I feel now. I started a podcast in 2020 to help listeners navigate insurance hurdles, manage medical documents, advocate for their health and live with PH.
My main goal has always been to make people feel seen. PH is an invisible disease. It can feel isolating. The more people I’m able to connect with, the more I hope to make a difference and build community.
Inspired to share your journey with PH? Submit your story to PHA’s Right Heart Blog.
Join us! Volunteer with PHA, and we’ll provide training and tools to get you started and at each step of the way.
Need support? Find a support group near you to share experiences and strategies on how to best manage PH.
