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Heart failure in Pregnancy (PPCM)

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WOMEN IN HEART FAILURE

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HEART FAILURE SCREENING TOOL

Heart Failure Screening tool

SPREAD THE WORD ABOUT PPCM

Spread the word about PPCM. You can do this in so many ways and with awareness, lives will be saved.

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Myheartsisters.com has been developed to raise awareness about heart failure in pregnancy (PPCM) and provide support for heart sisters through storytelling and friendship. PPCM, otherwise known as postpartum cardiomyopathy or peripartum cardiomyopathy, it is now the leading cause of maternal death and morbidity.

Know the symptoms of heart failure before, after and during pregnancy and save lives. Don’t let PPCM continue to be the silent killer. Join our community today and help save lives. See How to Join or feel free to Contact us for any questions.

Share Your Story

Every PPCM story is unique and every heart sister is a hero. Share your story of diagnosis, recovery, post PPCM pregnancy and update your profile and let members know how you are doing. Your journey does not have to be alone. Stories can be tagged public or private. You will need to join to read all the stories. See How to Join

Updates

If you want updates to the website, you need to join as a member. We also post updates on http://www.facebook.com/myheartsisters . You will also need to "LIKE" this community page and hover over the LIKE button and click "Get Notifications". Facebook is becoming less reliable, so it's best that you join as a member to get updates.

PPCM Flyer

Download and print a PPCM Awareness Flyer

Heart Failure 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.

We are told that the condition is rare but no one really knows whether it is rare of just not diagnosed. In Haiti the estimated incidence is 1 in 299 livebirths, in South Africa 1 in 1000 livebirths and in the USA, the Temporal Trends in Incidence and Outcomes of Peripartum Cardiomyopathy in the United States, nationwide population study (2004‐2011), estimated that the disease occurs in 1 every 968 live births in the United States

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 problem with heart failure is that the heart can compensate for damage and enlargement that makes it difficult to diagnose without an array of tests. 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.

**The QUIZ below, should not replace medical tests. **

HEART FAILURE QUIZ

Heart Failure Screening tool

There are several medical tests that can determine if you are in heart failure.

  • Blood test: B-Type Natriuretic Peptide (BNP) blood test is used to help diagnose heart failure and to determine the severity of that heart failure. This is a very useful blood test that can be ordered from your general doctor. It is a hormone that is excreted by the left ventricle under stress and elevated BNP, occurs hours to days before the clinical symptoms of heart failure. it can also separate lung conditions from heart conditions.

  • Blood test: C-reactive protein which is produced by the liver. The level of CRP rises when there is inflammation throughout the body

  • Echocardiogram (ultrasound of the heart) that determines if a heart is enlarged

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

What we do know is that pregnancy is stressful on the body and heart failure in pregnancy happens to women of all ages. Read PPCM Stories, know the symptoms, educate yourself About PPCM, because the earlier the diagnosis is made, and treatment started the better the outcomes. You could very well be saving your life or a life of someone you know.

PPCM is a silent killer and education about PPCM is the key to saving lives!

Read more About PPCM, and what it is and why it happens.

PPCM Recovery has information about recovering from PPCM

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.

Bumper Stickers promoting PPCM Awareness

You can order a bumper sticker to help raise awareness of pregnancy induced heart failure. Click on the image to order. Bumper stickers are US$2.15 + postage (calculated prior to checkout). 50% discount when ordering 5 or more stickers.

Videos

Learn why doctors at UPMC say it is important to know the signs and symptoms of peripartum cardiomyopathy in pregnant women and new mothers. Speech at Go Red Event from Post Partum Cardiomyopathy survivor and her fight to get proper diagnosis. She was initially diagnosed with post natal depression.


Our vision

  • To provide insights and data about PPCM to improve diagnosis, outcomes and treatment
  • To enable women to find medical professionals experienced with PPCM for ongoing care and treatment
  • 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.

 

Welcome!

This screening tool was developed by Dr.James Fett and has been made into an online quiz. Please answer the following Questions and at the end of the quiz it will display your risk and what to do.

“Disclaimer: For informational purposes only”

1. Orthopnea (difficulty breathing while lying flat):

None
Need to elevate head
Need to elevate upper body 45º or more

2. Dyspnea (shortness of breath on exertion):

None
Climbing 8 or more steps
Walking on level

3. Unexplained cough:

None
Night-time
Day and night

4. Swelling (pitting edema) lower extremities:

None
Below knee
Above and below knee and/or hands/face

5. Excessive weight gain during last month of pregnancy:

Under 2 pounds per week
2 to 4 pounds per week
Over 4 pounds per week

6. Palpitations (sensation of irregular heart beats):

None
When lying down at night
Day and night, any position

And your result is

Comments


re: My Heart Sisters - Heart failure in Pregnancy (PPCM)
Wednesday, 04 April 2012 by Mel Solberg

Thanks for creating this site for all of us exceptional girls!! Im excited to be able to see where all of my other heart sisters are in the world. Pretty exciting :)

 

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Myheartsisters.com has been developed to raise awareness about Peri and Post Partum Cardiomyopathy and is used for educational purposes only. We encourage you to consult with health care professionals to obtain medical advice. This site contains personal accounts of heart failure in pregnancy. Information should not be used as an alternative to seeking professional medical help, where a proper evaluation or diagnosis can be made in person through a face to face consultation and medical tests.

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