As a professional epidemiologist, Carole Chrvala has an in-depth understanding and knowledge of many diseases and medical conditions, including thrombosis. But throughout her career, she never envisioned herself on the patient side until life took a turn in December 2016.
When Carole experienced sudden onset musculoskeletal pain around her upper rib cage, the 57-year-old attributed it to a possible pulled muscle from exercising. She used a heating pad to temporarily relieve the pain.
One evening, she awoke to a sharp, severe pain in her chest that she described as “a severe and persistent stabbing” pain. When she leaned forward, the pain lessened in intensity, so Carole eventually went back to sleep.
The following morning, she contacted her cardiologist about the pain since she has a pacemaker. Her cardiologist advised her to go directly to the emergency department.
Carole told the healthcare professionals at the department that she thought she had pericarditis, the swelling and irritation of the thin saclike membrane surrounding the heart, and they agreed. However, when she had a d-dimer test conducted as part of her blood work, the results were alarming.
Following an immediate CT scan, Carole was told that she had two small pulmonary embolisms (PEs) in her lung and a very large deep vein thrombosis (DVT) in her left leg. She was treated with an anticoagulant, yet since she was hemodynamically stable, Carole’s health team decided to discharge her.
But she knew something still didn’t feel right.
Carole asked to see her CT scan results and review them personally. Due to her professional experience, she had the necessary knowledge to understand the CT images. In addition, her husband and several friends were with her in the emergency department and were very involved in asking questions.
When her physician returned with her results, he shared startling news: She did not just have two small PEs, but rather one large PE blocking her left lung and many smaller PE in both lungs. Carole later learned that some of the PE were older in appearance, a likely indicator for a chronic thromboembolic disorder.
Her medical team immediately went into action, noting the severity of her condition, and she remained in the hospital for four days before she was discharged.
“I did not think I was someone who would develop a DVT or a PE because I didn’t think I had any risk factors for either,” said Carole, although she later learned that she has Factor V Leiden, an inherited blood-clotting disorder due to a mutation of the blood's factor V protein and a family history of PE that resulted in the death of her maternal grandmother. “I just couldn’t believe my diagnosis.”
She explained how difficult the transition was during her recovery.
“Being a patient is very different than viewing it from a clinical standpoint,” she said. “Coming home was very depressing. I went from being someone who worked out vigorously most days of the week to not being able to walk up a flight of stairs.”
Carole admits the most difficult aspect of her recovery has been not only knowing that her PEs were unprovoked, but also realizing that an important aspect of her health was out of her control.
“It’s hard to trust my body, but I’m more aware now,” she said. “There are times I’d like to cry and there are times when I’m flattened by this diagnosis. It is important to recognize that a life-threatening condition such as PE affects a patient’s loved ones and there is adjustment process for them as well. One of the things that made it so hard for me and my husband is that many people do not understand thrombosis or PE.”
Today, Carole is on an anticoagulant regimen and has regular visits with her healthcare team. She finds strength in continuing to prioritize her health and well-being by living an active lifestyle, including biking and hiking.
Carole says that after her PE, she chose to improve her work-life balance by trying to slow down. She began a daily regimen of meditation to manage stress and resumed regular exercise as soon as she was able to regain a sense of normalcy and improve her physical, emotional, and mental well-being.
Looking back on her experience, Carole is confident that her insistence to review her own CT scan at the emergency department helped save her life, but she also recognizes that many people do not have the necessary medical knowledge to be able to do so.
“It’s very hard to be an advocate for yourself when you’re sick and in pain,” she said. “My advice is to ask as many questions as you possibly can. Bring somebody with you that you trust to ask questions on your behalf. Good medical care is a team effort and the patient is a key player on that team, with important self-knowledge and awareness that increases the likelihood that healthcare decisions are tailored to the individual patient.”
Nine months after her diagnosis of DVT and PE, Carole and her husband completed a 20-day cycling trip in France, traveling more than 1,000 miles on their bikes and celebrating their newfound appreciation for the gift of each moment of a life worth living.