Researcher on Quest to Reverse Lung Damage in PAH

And Rare Diseases

Lisa Kimble, 38, lives in Coolidge, Arizona, with her husband, J.R., and their sons, Caden, Dakota, Titan and Canyon. In addition to pulmonary hypertension, she has struggled with several other rare diseases: hereditary hemorrhagic telangiectasia (HHT), endocarditis, osteomyelitis and hemoptysis, all diagnosed within the last decade. She stays home with her boys and enjoys playing video games, going on walks, watching movies and baking.

By Lisa Kimble

When I was a child, I had frequent nosebleeds. They were intense, but I’m not sure my parents thought much of the situation. As I got older, the nosebleeds became less frequent. I would usually get one if we drove into higher elevation or if I got bumped playing sports.

When I was 10, I took my first plane trip from San Diego to eastern Pennsylvania. I was excited to visit that side of the country, where my extended family was from. But by the time we arrived back home, I was constantly struggling to breathe with any exertion.

My parents realized something was wrong. They set an appointment for me to be checked out. The diagnosis came back as asthma. Asthma? I knew many people who had asthma. It seemed like a doable diagnosis. We kept going back to the doctor. I had allergy tests, which showed mild allergies.

It wasn’t what the doctors expected. They decided the shortness of breath was exercise-induced. I was sure the magical inhaler would fix everything. But it didn’t do much except leave a nasty taste in my mouth. More tests. The doctors thought I was faking not being able to breathe. My dad taught me some breathing techniques, and life went on.

Conditioning and complications

In high school, I wanted to play basketball. I hoped the conditioning would fall into place. A couple times a year, we would do wind sprints. I would be all right for a bit, but around the halfway mark, my ears would start popping. It was like I could hear the ocean. I had a great coach who recognized I would have passed out had I pushed more. I would sit out for a bit and come back when I was ready.

After high school, I couldn’t keep up at the college level and played pickup games around campus. I eventually met my husband. We got married and were shocked to find out I was pregnant with twins.

I was exhausted through most of my pregnancy. I had two perfect baby boys. My cesarean section had minor complications: My hematocrit dropped, which led to a blood transfusion.

During my post-pregnancy checkups, I told my doctor that I felt overly tired. He responded that I had just had twins and of course I was tired. I knew it was more than that, but insurance issues put it to the back of my mind.

I started trying to exercise, but it always seemed like too much. After a few years, I went back to school. I planned to get a physical education degree. I was keeping up when I got pregnant again. My teachers noticed that I often struggled to breathe. I asked my doctor, but she wasn’t concerned. Over the years, I was told multiple times that I just needed to exercise more. Exercise would solve everything.

After I had my son, a nurse said he thought he heard a heart murmur. Other people tried to listen for it and couldn’t find it.

Three and a half years later, I got pregnant with my youngest. It was a rough pregnancy. I was in and out of the hospital, and I worried I would miscarry. After the first trimester, I developed a cough. I went to my doctor, and his nurse practitioner heard an odd murmur.

They ordered an echocardiogram. The cardiologist called me after the procedure and wanted to see me the next day. I was extremely concerned. I had dealt with family medical problems, and I knew that it had to be serious. I didn’t sleep much that night.

The cardiologist said I had pulmonary hypertension (PH). Based on the echocardiogram, it seemed fairly severe. But because there seemed to be mixed blood, he said I might have a hole in my heart. He explained

that doctors could patch a hole, which in most instances, could reverse the PH. The next few days I prayed that an MRI would show a magical, fixable hole. Unfortunately, it showed no hole. The doctor said pregnancy was dangerous for people with PH. He referred me to doctors who specialized in my condition. The following week my siblings drove me to meet my new PH specialist, Lynnette Brown, M.D. It was a little overwhelming. So many tests had to be done. While we waited in an evaluation room, my siblings and I joked around, hoping to lighten ‘They soon learned that the mood. My new nurses seemed confused that I was so even in rough times, I lighthearted for such a grim Rough pregnancy preferred to laugh and diagnosis. They soon learned enjoy what life I might that even in rough times, I preferred to laugh and enjoy have left.’ what life I might have left. A right heart catheterization confirmed I had fairly severe PH. Doctors couldn’t tell where the blood was getting mixed. Then I had a transesophageal echocardiogram, followed by a regular echocardiogram with a bubble test. It showed an odd flow. NICU in the RICU They settled me into my room and started me on Flolan. We were unsure about the duration of my stay, but the team hoped they could send me home in a few weeks after I mastered my new medicine.

However, my pregnancy quickly changed that plan.

After about a week in the hospital and in week 22 of my pregnancy, my water broke. I thought my baby most likely wouldn’t make it. However, I was able to carry him until 29 weeks. I spent a long time in the hospital — not in the maternity area, but in the respiratory intensive care unit (RICU). They eventually blocked off the room next to mine in case they had to deliver the baby there. They called it the NICU (neonatal intensive care unit) in the RICU.

The doctors suspected the odd blood flow was caused by an arterial venal malformation (AVM) and suspected that I had hereditary hemorrhagic telangiectasia (HHT).

It made sense. My struggle to breathe wasn’t in my head. It wasn’t going to be corrected by doing more exercise. I was finally starting to understand why I had struggled my whole life. I started an oxygen regimen of three to six liters at rest.

Thanks to the diligence of Greg Elliott, M.D., Dr. Brown and a team of other medical professionals, I had a C-section at 29 weeks. My baby spent three months in the hospital to finish developing but for the most part was healthy. I had few complications and went home within two weeks.

The doctors repaired my AVM in November 2020 to prevent a more catastrophic bleed out. My heart seems to be handling it well, and my oxygen saturation is in a far more normal range. I’m not sure what the long-term effects will be. I’m still trying to figure out the PH and HHT situation.

As for my little preemie baby, he is 10 now and doing well. My twins graduated from high school in March 2020 and now have jobs, which I’m chauffeuring them to.

My younger two have been doing home school since the pandemic. They’ve made a lot of trips around the neighborhood on their scooters.

We are a bit of a gaming family, which keeps us busy during the pandemic. We play World of Warcraft together, and the kids are super into the Legends of Zelda games. We also spend a lot of time fixing cars and playing around on fourwheelers.

Fast forward

Memorializing a BEAUTIFUL LIFE

When Terry Teachout met Hilary Dyson in 2005, he knew she was the one.

“It was love at first sight, without a doubt,” Terry recalls.

Hilary quickly revealed that she had pulmonary hypertension (PH), a disease Terry had never heard of. Hilary explained that her initial symptoms were shortness of breath – she found it increasingly difficult to workout at the gym. After years of doctor appointments, she was diagnosed with PH in 2003 at age 47.

Her family was stunned by the news and found it difficult to take in, says Terry. Her life totally changed after her diagnosis. She had been living in New York City, but moved back to Connecticut. She wanted to be closer to her family since she assumed that the disease would kill her within a couple of years.

After meeting Hilary, Terry turned to the limited information available at the time to learn more about PH. He didn’t care that Hilary might live only two more years – he was committed to sharing in her PH journey, whatever that looked like.

Terry and Hilary married in 2007. A few years later, Terry stumbled upon the Pulmonary Hypertension Association (PHA) while surfing the web.

“The biggest thing PHA did was help us feel less lonely,” Terry says. “We didn’t know anyone with PH. In fact, neither one of us had even heard of the illness. Even though Hilary’s doctors were kind and caring, we felt terribly alone. PHA made a big difference.”

Terry found vital support and educational resources on PHA’s website. “PHA maintains a first-class website that supplies one-stop information about every aspect of the disease and its treatment,” he says. “Its very existence has been reassuring.”

Terry and Hilary had 15 beautiful years together as husband and wife, thanks in part to advancements in PH research and treatments that helped extend Hilary’s life.

Hilary died in March 2020 after complications from a double lung transplant. “I am so grateful for the life we had together,” he says.

After Hilary’s death, Terry asked people to contribute to PHA in Hilary’s memory. And Terry continues his personal donations.

“I believe so deeply in PHA’s mission, which mattered so much to Hilary and continues to matter to me after her death,” Terry says. “If PH matters to you, either as a sufferer or as a caregiver, I can’t think of a cause more deserving of your support.”

Help PHA provide the support, education, and research programs that the PH community needs. The Pulmonary Hypertension Association is a nonprofit organization that relies on the support of donations to fund our mission. To join Terry in supporting PHA, visit PHAssociation.org/donate.