Louise McCool woke up on New Year’s Day 2002 with a strange feeling.
Her left leg felt tight and there was additional weight on her foot making it feel heavy. As the morning went on, the pain in her leg intensified.
Louise went with her husband to the emergency room at the hospital. It was busy and Louise recalled waiting for more than six hours before seeing a doctor who described her leg symptoms as “bizarre.”
A consultant soon recognized the signs and symptoms of a deep vein thrombosis (DVT) and sent Louise for several diagnosis tests, including a computerized tomography (CT) scan and an ultrasound scan. She was admitted to the hospital for five days to treat the blood clot.
As part of her discharge plan, Louise was prescribed an anticoagulant for six months. Nonetheless, she later learned she has a genetic condition called Protein C deficiency, which means she will be on anticoagulants for the long-term.
Eight years later in 2010, Louise began to experience the same DVT symptoms, including a heavy feeling in her leg. She was diagnosed with another DVT.
The same pattern followed, and Louise was soon diagnosed with three more DVTs between 2015-2017. Her sons were also tested for the same clotting gene, which showed that one son had inherited the gene.
“I felt like such a terrible mother that I’d passed this deficiency onto him,” Louise shared.
In 2017, Louise began to experience a new set of symptoms.
“I started to get the most horrendous pains in my stomach,” she said. “I couldn’t eat without pain. It got to the stage where I was too scared to eat. My doctors were baffled.”
After a referral to a specialist, diagnostic tests revealed that Louise has celiac artery compression syndrome (CACS), which is defined as chronic, recurrent abdominal pain related to compression of the celiac artery by the median arcuate ligament. Tests also diagnosed Louise with May-Thurner syndrome, a rare vascular condition that affects blood flow.
She had surgery in early 2018, followed by a balloon and stenting. She recalls that her symptoms did not relieve because she had not been able to eat solids for so long, so she was placed on a feeding tube.
From March 2018 – March 2020, Louise had 19 medical procedures. Because of the COVID-19 pandemic, she had a gap in procedures from 2020-2022, but later underwent a stent placement procedure to help relieve pain.
As she reflects on her medical journey, Louise admits it has had its mental and emotional effects.
“I suffer from anxiety and post-traumatic stress disorder from being and feeling so close to death and all the procedures I’ve had so far,” she shared. “I wake up every day thinking could this be the day I wake up to another DVT or mesenteric ischemia. My journey is still ongoing. I have regular monitoring, I have to take medications for life and I will continue to need further intervention.”
Louise explained the frustration of misdiagnoses over the years and the battle she experienced to advocate for her health.
“I want to share my story—how rare and debilitating these conditions can be. Other people should not suffer like I did. It’s important to highlight awareness about the signs and symptoms.”