This is a story written by a INCIID Forum participant (Carachel2) about her encounter and correspondence with another woman living in Japan. Carachel2, a critical care nurse draws from own experience to educate colleagues and patients on and often-misdiagnosed heart condition: Peripartum Cardiomyopathy (PPCM), or congestive heart

The Importance of Communication

It’s a brilliant Texas morning and Carachel2 (an RN), is chasing her 4-year-old daughter around the park.

“Catch me, Mommy!” she shrieks, and mom grabs her in a hug as they both collapse in a fit of giggles. It’s a heartwarming picture, and Carachel2 is grateful to have these precious moments.

Four years ago, her future didn’t seem quite as promising. Shortly after her daughter’s birth, she became critically ill and was eventually diagnosed with peripartum cardiomyopathy (PPCM), or congestive heart failure. Although her story ultimately had a happy ending, she has become a passionate advocate for PPCM patients. She takes an aggressive approach to educating medical professionals about this rare yet lethal disease that is often misdiagnosed.

In the United States, PPCM complicates one in every 2000 to 4,000 deliveries. Although it can occur in childbearing women of any age, it’s most common in women older than 30. Typically, the condition is diagnosed during the last month of pregnancy, or within five months after delivery.

After years of trying to become pregnant, Carachel2 learned in 1998 that her attempt at in vitro fertilization was successful. She and her husband eagerly awaited the birth of their first child.

At 29, she was the picture of good health. She swam three miles a day three days a week, exercised regularly, ate healthy foods and maintained a normal weight throughout her pregnancy. She was happy in her job as a nurse in cardiac critical care, and although she admits to being drawn to patients with congestive heart failure, she had no history of heart disease and had never even heard of PPCM.

Carachel2’s pregnancy was uneventful until the last six weeks, when she developed edema, gestational diabetes and moderately elevated blood pressure. Her doctor told her they would monitor her closely, and she  continued to work full time. Two weeks before her due date, she gained 11 pounds of fluid in three days. Her doctor took her off work with orders to rest. Because of her diabetes and high blood pressure, doctors decided to induce labor on her due date. After an 18-hour labor that culminated in a cesarean, she spent five days in the hospital. When she was discharged, her blood pressure remained slightly elevated.

“I had been home about two nights when I awoke quickly and suddenly,” Carachel2 said. “My heart was pounding at about 130 beats per minute and I was short of breath.”

During the next few days, she spent her nights sleeping in a recliner in the nursery. Her symptoms improved during the day, except for a feeling of constant fatigue. “As a cardiac care nurse, I feel I should have recognized the signs and symptoms of congestive heart failure,”. “Instead, I took the passive patient role and let my doctor convince me that everything was fine and that I just needed to move around more and not worry so much.”

Finally, a week later, she called a physician friend who ran an ECG (electrocardiogram) and saw that it was mildly abnormal. A chest X-ray was ordered and the results showed that she was in congestive heart failure with an enlarged heart and fluid in both lungs. She was prescribed a diuretic and a cardiology appointment was made for the next day.

She can still remember sitting in the exam room and making small talk with her cardiologist. “I saw the ejection fraction 25 percent to 30 percent on my chart and I remember feeling scared,” she said. “I had taken care of patients who were on ventilators with ejection fractions better than that.”

Her doctor prescribed rest plus diuretics and an increasing dose of ACE inhibitors and beta blockers. Two months later, her ejection fraction was up to 35 percent and she began cardiac rehab, a patient in the same hospital where she previously worked in critical care and cardiac rehab.

“The first day, I could barely walk five minutes on the treadmill,” she said. “I was so weak that I had to lie down for an hour before I could pick my daughter up from the child care center.”

Four years after her diagnosis, Carachel2 said she feels great most of the time. She tires occasionally, but can’t pinpoint whether it’s the effects of PPCM or her busy lifestyle. She will probably be on cardiac medications for the rest of her life, but she maintains an active lifestyle with her husband and daughter and exercises every day. She continues to work 20 hours a week as a cardiac rehab nurse at a center Texas.

“While doctors are acutely on the lookout for signs of pre-eclampsia or pulmonary embolism, they don’t usually look for signs of PPCM. Although it is more rare than other pregnancy complications, I think it’s imperative for caregivers to recognize the symptoms.”

She recommends that doctors listen to a patient’s breathing during the last trimester of their pregnancy. She also thinks that labor and delivery nurses can play a critical role in early diagnosis of PPCM by performing a thorough pulmonary assessment just before a new mom is discharged.

“Nurses should teach every new mom to seek help immediately for shortness of breath, new onset of a cough and especially when they have shortness of breath when they lie down,” she said. “In addition, doctors should be more thorough in their pulmonary assessments of new moms.”

The ultimate goal is to have the symptoms of PPCM listed on discharge instructions at hospitals across the United States and to specifically educate ob/gyn staff and nurses about the signs and symptoms of PPCM.

“All too often, PPCM patients are misdiagnosed with asthma, pneumonia or panic attacks,” she said. “It’s frightening how many PPCM patients are given anxiety meds or an inhaler and sent home.”

Carachel2 became an advocate for the many women who are diagnosed with PPCM each year.  She frequently fields questions from expectant mothers and PPCM patients all over the world.

At one point she communicated via the Internet with a pregnant woman in Japan who had a persistent cough and was given inhalers when she visited the ER. She encouraged the woman to go back to the hospital and demand an echocardiogram, chest X-rays, etc. She, in fact, had PPCM and while they were delivering her baby, she arrested in the OR and woke up on a ventilator three days later.

Despite the trauma that PPCM caused in her life, Carachel2 is thankful for her blessings. In hindsight, she credits PPCM for making her a better mother and a better nurse.