Scary Situation: Rare Diagnosis Quickly Leads to Heart Transplant

Kim Pimley is a mover and shaker, a businesswoman on the go. She’s one of those energetic people you see running up an escalator, to save time, and also, just because she can.

Colleagues described Kim as “overflowing with energy.” She kept in shape by hitting the bejesus out of a 150-pounds of punching bag. Then she began experiencing shortness of breath during her workouts. It was winter, and it was cold, so she thought she just had a virus.

But instead of getting better, her symptoms became worse, even having to stop and rest midway up a flight of stairs—stairs she had climbed with ease many, many times. She went for testing at a local hospital, where doctors told her the unimaginable news: she had an aggressive and rare disease of unknown origin. It was quickly taking over her heart and her chance of survival lay in a heart transplant.

It had all started when Pimley reached out to her doctor and complained about several days of feeling breathless. Just days earlier, she had returned from a vacation to Hawaii where she’d felt great. However, back from vacation, she wanted to get back into the swing of work, but she just didn’t feel right. She had recovered from a bad case of bronchitis a few months prior, so doctors thought she just hadn’t fully recovered. Thus, her primary care doctor sent her off with an inhaler.

But Pimley wasn’t convinced and asked doctors to perform an X-ray of her chest. The test showed that Kim’s lungs had fluid surrounding them and she was referred to a pulmonologist. The pulmonologist took a look at her and said she immediately needed to go to the ER.

The cardiologist measured ejection fraction, which is a measure of the heart’s ability to pump. Sixty-percent is considered healthy, but Pimley’s was only 25. Her healthcare team suspected some form of myocarditis,  an inflamed heart muscle caused by bacteria and viruses.

Pimley was so sick that her doctor thought a biopsy of her heart was needed, but it is a very specialized test that her hospital couldn’t offer. So Pimley was taken to another hospital where she was examined by yet another cardiologist. Just as previously, this healthcare team knew that this was not a classic case of heart disease—it just didn’t fit. “This is a very healthy woman who all of a sudden could not walk across the room,” her doctor said.

The doctors suspected an incredibly rare form of myocarditis called “giant cell myocarditis” (GCM). With this disease, abnormal cells invade the heart, which disrupts its rhythm.

One theory is that the disease is triggered by an autoimmune response, so it is sometimes treated with drugs that suppress the immune system. It is extremely rare and has only been reported a mere hundreds times in literature.

Unfortunately, Pimley’s condition continued to deteriorate. Her heart had begun a dangerous, irregular, and rapid rhythm. As a result, she entered cardiogenic shock because she wasn’t delivering enough blood to the rest of her body. They were worried her heart would stop entirely, so she was put on life support. Thankfully, the results finally came back and confirmed giant cell myocarditis.

That same day, her healthcare team conducted a meeting and placed Kim first in line for a heart transplant, stating her condition was the most critical and urgent. Amazingly, by the next night, doctors had identified a potential donor and by the very next morning, doctors had confirmed it as an acceptable match for Pimley, based on blood type, its size, and a several other factors.

Through it all, Pimley kept asking questions and quizzed hospital caregivers about everything. She said that dealing with her grave illness on an intellectual level kept her sane. When the heart surgeon performed the transplant soon after, Kim was in the ICU that afternoon and home only two weeks later.

She is doing well and her energy is steadily increasing. She takes a lot of pills—40 every day—including immune-suppressing drugs, anti-clotting agents, anti-bacterial agents, multivitamins, and anti-nausea medicine.

Doctors think the culprit is this largely misunderstood autoimmune reaction. When she’s stronger, doctors will perform a cardiac stress test, to clear her as normal and ready for activities. She can’t wait until she can get in a few (or 100) jabs at that big ole punching bag of hers.

The Myocarditis Foundation is a non-profit organization dedicated to “providing accurate and up-to-date information to medical professionals, patients and their families, and to the scientific advancement of both the diagnosis and treatment of the disease with the goal of saving more lives.” You can find GCM info on the site by clicking here.


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