Local PPCM Registry

Researchers at Intermountain Medical Center Heart Institute have created a registry of our patients with PPCM in order to better understand this rare condition.

Creating a registry allowed us to combine information about all of our PPCM patients and look for common patterns and characteristics. Here are some of the things we noticed about the patients in our registry:

• Patients with PPCM are young. The average age at the time of diagnosis is about 30 years old.
• The average ejection fraction, percent of blood pumped with each heart beat, for PPCM patients is 30%. A normal ejection fraction is 60%.
• Many patients had an enlarged, or dilated, heart.
• The average patient with PPCM has had over two pregnancies and has two children
• At diagnosis, a substance called B-type natriuretic peptide (BNP) is elevated in the blood. BNP indicates excess fluid in the heart.
• ST2, another substance similar to BNP, was also elevated in patients in the registry.
• The most common symptoms of PPCM included: shortness of breath, swelling, needing pillows to sleep, waking up short of breath at night, chest pain/pressure, and cough.
• The most common signs health care providers see during an exam included high heart rate, high blood pressure, fluid retention, and abnormal heart and lung sounds.
• Some patients did not meet the strict definition of PPCM because they don’t have an abnormal ejection fraction, they fall out of the timeframe, or they have had some type of prior heart history that excludes them.
• Of 88 patients who met the diagnosis of PPCM, 4.5% needed mechanical heart support, 6% needed a transplant, and 2% died.
• Patients with recovery of heart function were more likely to be taking heart failure medications that include an ACE inhibitor or ARB, and a beta blocker.
• A gene appears to be associated with PPCM. See our recent study update below for more information.