CTEPH Patient Finds Community Through PHA Facebook Group

Karly Loree, 30, lives in Stillwater, Oklahoma, with her husband, Peter, and their corgi-Labrador mix, Lexi. Karly is a full-time student at Oklahoma State University majoring in American Sign Language and intersectionality. In her spare time, Karly enjoys crafting and gardening, hiking, fishing and volunteering with the deaf community. She shares her story for the Pulmonary Hypertension Association’s end-of-year fundraising campaign.

By Karly Loree
I was 26 and in perfect health when I first felt chest pain. I was vacationing in Massachusetts with my boyfriend, now husband. The pain lasted about five minutes, and I chalked it up to travel sickness. The next day, I took a turn for the worse.

While trying to enjoy the final days of vacation, I could barely breathe. My blood pressure and pulse were fine, so why was I still struggling to keep up? One of our friends, an emergency room nurse, noticed me panting on the porch. Luckily, he had some medical supplies to check my blood oxygen levels and instructed me to find the nearest medical center as soon as possible. My blood oxygen level was 88%.

After some convincing, we headed to a local urgent care. Within 30 minutes, I was diagnosed with blood clots. An ambulance took me to the closest emergency room, an hour away in Rhode Island. I was terrified. At the ER, I was diagnosed with a saddle pulmonary embolism, a clot in the main artery of my lungs. It obstructed about 90% of where my lungs connect to distribute oxygen. I needed treatment immediately.

I was placed on a heparin drip to dissolve the clot. If my condition didn’t improve, I would need immediate open-heart surgery. The next day, the blood clot was dissolving, so two weeks later, I was cleared to fly home to make a follow up appointment with a hematologist.

Life after blood clots
Coming home after an unexpected extended stay in the hospital was hard. I didn’t have much paid time off left, so I went back to work as an assistant manager at a coffee shop. I made some accommodations for my condition, but my sickness became noticeable to everyone, including my store manager. After a week, she suggested I go to urgent care and get checked out.

My embolism wasn’t dissolving properly, and I was admitted to the hospital for 10 days. I was otherwise in good health, so the doctors started DNA testing to get to the source of my illness. The doctors discovered I had a prothrombin mutation, a hereditary DNA mutation that increases my predisposition to develop abnormal blood clots in my veins and lungs. I followed up with a hematologist and learned I would need blood thinners for the rest of my life.

A year later, I was still short of breath and slowly skating toward burn out. After losing his job during the pandemic, my boyfriend received a job offer at Oklahoma State University, so I quit my job to pursue a bachelor’s degree. My life was looking up.

In 2021, I went to the ER four times for chest pain. Each visit, I was diagnosed with something different, from bad allergies to the flu. I felt like a hypochondriac, but my heart was in so much pain and no one took me seriously because I looked healthy.

CTEPH diagnosis
My last ER visit was in March, and I was referred to a cardiologist because of my shortness of breath, dizziness and mild chest pain. My cardiologist diagnosed me with high blood pressure, told me to take Tylenol, and sent me on my way. The Tylenol did very little, and I still had irregular chest pain and shortness of breath.

In April, my cardiologist denied my request for a referral to a pulmonologist. The cardiologist said my lungs were fine. After some research, I learned the doctor’s office legally had to provide a referral. After advocating for myself, I was referred to John Kingrey, M.D., director of the Pulmonary Hypertension Center at Integris Baptist Medical Center in Oklahoma City.

During my first appointment in April, Dr. Kingrey diagnosed me with chronic thromboembolic pulmonary hypertension (CTEPH). I knew there was something different about him. He met with Peter and me for over an hour, explaining everything. It was a relief for someone to take me seriously and dive into the underlying problem. I finally felt seen.

Dr. Kingrey said that my blood clots never fully dissolved. The clots had settled in the bottom of my lungs and eventually turned into scar tissue. After additional tests, I learned that I needed open-heart surgery. I was missing about 40% of my lung function and experiencing slow heart failure.

My open heart surgery is scheduled for Dec. 19 at UT Southwestern in Dallas.

Awaiting surgery
After scheduling my surgery, I had many ups and downs. Sometimes I was afraid to fall asleep. I was afraid I wouldn’t wake up again.

The funny thing about being a young person with an illness like CTEPH is that no one my age understands what I’m going through. I’ve lost many friends during this time. Even my therapist didn’t know how to help me cope. I was so sick, and no one could physically see it except for my husband. Pulmonary hypertension (PH) truly is invisible to outsiders.

Though I had amazing support through Dr. Kingrey and his clinic, I couldn’t expect them to be my only source of comfort. I started looking online for chronic illness support groups. Because surgery would cure my CTEPH, it was tough finding others like me, and eventually I stopped looking. I cried a lot. My husband cried a lot. I was in such a dark place, and I felt so alone.

Finding community
In October, Peter and I went to a Pulmonary Hypertension Association (PHA) community event in Oklahoma City hosted by Dr. Kingrey and his clinic. I was excited to meet others like me. When we arrived, I noticed that I was the youngest person there and the only person with CTEPH. I was glad to celebrate the other PH patients and listen to their stories, but I couldn’t help but feel disappointed and isolated.

However, the event made me aware of PHA, and I discovered the PHA CTEPH Facebook group. Everything changed.

Here was an online support group with hundreds of documents, helpful tips and emotional support. It was everything I needed and then some. The love and support was life-changing. No more crying spells. No more daily panic attacks from fear of surgery. I finally had a sense of hope.

There are members my age. Some are even younger than me. The members were eager to hear my story and share their contact information. If I feel concerned or down, I can reach out and post in the group. The members encouraged me to post as often as I needed and welcomed my husband so he would have support as a caregiver.

This PHA online support group has drastically changed our lives for the better. Peter and I stopped mourning the future and talking as if I were dying. We have hope, and we can dream of a future again.

I’m so excited for my surgery. My husband and I are counting the days. I hope that I can continue to share my story to help others with this invisible illness and spread the word of PHA support groups. Being young and isolated made me feel like I was alone on this journey, but I wasn’t alone. I just hadn’t found my PHA CTEPH family yet.

Inspired by Karly’s story? Donate to PHA’s end-of-year fundraising campaign and help fund PHA’s network of support services including online and in-person support groups, community events and more.

Karly Loree with Dr. Kingrey at a PHA community event in Oklahoma City in October.