About PPCM

Read my additional information here on PPCM


It’s hard to believe that something like childbirth can end so ugly. Of all the things that can go wrong in a pregnancy, congestive heart failure isn’t on the top of everyone’s list.

In 2000 I gave birth to my youngest child. It started with high blood pressure and pre-eclampsia and an emergency induction. After being released from the hospital I began to have shortness of breath and chest pain and got repeatedly tired of hearing that it was just anxiety or Post Partum Depression. I’d had PPD before, this wasn’t it. Thirty Four Doctors and a bucket full of tests later I was diagnosed with Peripartum Cardiomyopathy (PPCM). At the time nothing was known about it, and I felt completely isolated. I began the PPCMSupport Foundation shortly after in 2001 where it thrived with hundreds of users – some asking if their symptoms sounded like this horrible condition while others would recount their stories, their doctors appointments or just lean on each other for support. Eventually it consumed my life and I realized I would never get over the fear of it and begin to heal if I didn’t relinquish the organization and was blessed when a fellow PPCMer took the reigns and reinventied the organization at A Mother’s Heart.

If this is the first time you’re hearing about PPCM, let me be clear that it can happen to anyone, at any time of their pregnancy or up to six months after delivery. Thought to be some form of an auto-immune response, there is absolutely no warning.

Symptoms (some or all may be present):

Shortness of Breath
Swelling in the ankles, face or fingers
Chest Pain
Sweating excessively
Difficulty breathing when lying down
The feeling of fluid bubbling in your chest/throat
Palpitations (awareness of your heart beat)
Excessive weight Gain

The only key way to know whether this is happening to you or not is with an echocardiogram – a non-invasive test that mimics the ultrasound you use to view your baby in womb.

The average ejection Fraction (amount of blood pumped out of the chambers with each heart beat) is 60%. At the time of my diagnosis I lingered around 30% and it was thought that my EF was much lower but it took nearly 4 months to obtain a proper diagnosis, and for whatever reason, my heart began to heal itself. Currently I hover around 50% and the heart that was once enlarged to twice it’s size is now only slightly larger than normal, the four valves that leaked with each beat now close a little tighter and that’s something I can live with.

The incidence is estimated at one in 3000-4000 live births in all races with a slightly higher rate in Haiti.

PPCM is highly treatable with the use of beta blockers and vasodialators. That’s why it’s so important to know the signs and symptoms of this very deadly disease. Those wonderful women we have lost to this illness have predominately been women who did not realize what was happening to them until it was too late, or whose doctors brushed off their very specific symptoms.


3 responses to “About PPCM

  1. Pingback: This old heart of mine « You'll Want to hear this!

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