My Heart Sisters

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Peripartum Cardiomyopathy

Peripartum cardiomyopathy is the leading cause of maternal morbidity and mortality. Myheartsisters has been developed to raise awareness and provide resources related to cardiovascular disease in women to improve the odds of making a full recovery from cardiomyopathy.

Cardiovascular disease in pregnancy

Having a baby should be one of the happiest times of a woman’s life but unfortunately for some women, the experience turns into nightmare. Although most people are aware of haemorrhage causing death in pregnancy few are aware of a condition where the heart enlarges and becomes unable to pump sufficient blood to support the body. This condition is known as Peripartum or Postpartum Cardiomyopathy (PPCM).

In PPCM, heart cells become damaged through an inflammatory process, and a woman can go from healthy to complete heart failure in hours, days, weeks or months after giving birth and sometimes while pregnant. It is one pregnancy complication that is rarely spoken about and because no one talks about it, it continues to claim lives and cause incredible suffering. It is a silent killer because left untreated often leads to death. Ignorance is not bliss when it comes to heart failure in pregnancy. Many medical personnel are also ignorant about PPCM, and that is why raising awareness is essential to saving lives because PPCM is one disease that has excellent outcomes if treated early. Delays in treatment can lead to disability and death. Many women do go on to recover full heart function, however many women also continue to struggle with the disabling effects of the disease for many years.

Many PPCM survivors tell of long struggles to get proper diagnosis and they are often brushed off by their doctors when they report their symptoms. Unfortunately, some women are not diagnosed until after they have suffered a cardiac arrest or death.

All women should know the symptoms of heart failure and know when to seek medical help. A woman may initially exert one or all of these symptoms, and many will have their symptoms dismissed as normal signs of pregnancy.

  • Shortness of breath and coughing that generally occur at night (Paroxysmal Nocturnal Dyspnea)
  • Difficult or uncomfortable breathing on exertion (Dyspnea on exertion)
  • Cough
  • Shortness of breath on when lying flat, causing the person to have to sleep propped up in bed or sitting in a chair.(Orthopnea)
  • Swelling (edema) above and below the knee
  • Abdominal pain or chest pain
  • Palpitations – awareness of heart beating
  • Pink sputum

The echocardiogram is the only test that definitively diagnoses heart failure and the severity of left ventricle dysfunction but is usually only given if there is a high suspicion of heart failure. If in doubt, trust your intuition.

Everything you ever learnt about heart disease being caused by age, smoking, lifestyle, diet, stress, alcohol etc does NOT necessarily apply to PPCM.

What we do know is that pregnancy is stressful on the body and heart failure in pregnancy happens to women of all ages. Women and clinicians should know the symptoms because the earlier the diagnosis is made, and treatment started the better the outcomes.

Pass the word:

Start a discussion. Too many people shy away from discussing heart failure in pregnancy because it is just too frightening and they think, it will never happen to them or anyone they know. Unfortunately, that is not true. PPCM is one disease that has good outcomes if diagnosed and treated and devastating outcomes if it is ignored.

It happens to women of all ages and all races. It happens to women who have C-sections and women who birth at home. It does not discriminate.

Too many doctors, midwives, doulas, nurses, obstetricians are IGNORANT about PPCM and its symptoms, diagnosis, prognosis, treatment and outcomes and most women have never heard of PPCM.

Our vision

  • To help women recover from cardiomyopathy by providing educational resources
  • To educate the wider public and the medical community about PPCM, its signs and symptoms
  • To reduce the rate of mortality and morbidity through greater awareness. PPCM being the leading cause of maternal morbidity and mortality in the US.

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