National Wear Red Day

Tomorrow is National Wear Red Day – A day to show support for women’s heart health.

Our school district has been encouraging the staff and students to wear red this Friday in support of National Wear Red Day and it finally hit me…”Hey, I’m one of those women.”. With everything that has been going on with the Gegens these past few years, I almost forgot! It is mind boggling for me to think that my heart health crisis my family faced was already 9 years ago (a little more). Where at one time my heart had been constantly on my mind…with the journey our family has been on with John these past almost 4 years, it has taken a back burner. 

John was born on September 16, 2006. Nine days later I was diagnosed with Peripartum Cardiomyopathy (heart failure due to pregnancy), taken by ambulance to United Hospital and admitted into cardiac intensive care. I had never heard of peripartum cardiomyopathy. Here is the American Heart Associations information on the condition:


What is peripartum cardiomyopathy?  

Peripartum cardiomyopathy (PPCM), also known as postpartum cardiomyopathy, is an uncommon form of heart failure that happens during the last month of pregnancy or up to five months after giving birth. Cardiomyopathy literally means heart muscle disease.

PPCM is a dilated form of the condition, which means the heart chambers enlarge and the muscle weakens. This causes a decrease in the percentage of blood ejected from the left ventricle of the heart with each contraction. That leads to less blood flow and the heart is no longer able to meet the demands of the body’s organs for oxygen, affecting the lungs, liver, and other body systems.

PPCM is rare in the United States, Canada, and Europe. About 1,000 to 1,300 women develop the condition in the U.S. each year. In some countries, PPCM is much more common and may be related to differences in diet, lifestyle, other medical conditions or genetics.

How is it diagnosed?
PPCM may be difficult to detect because symptoms of heart failure can mimic those of third trimester pregnancy, such as swelling in the feet and legs, and some shortness of breath. More extreme cases feature severe shortness of breath and prolonged swelling after delivery.

During a physical exam, doctors will look for signs of fluid in the lungs. A stethoscope will be used to listen for lung crackles, a rapid heart rate, or abnormal heart sounds. An echocardiogram can detect the cardiomyopathy by showing the diminished functioning of the heart.

PPCM is diagnosed when the following three criteria are met:

  1. Heart failure develops in the last month of pregnancy or within 5 months of delivery.
  2. Heart pumping function is reduced, with an ejection fraction (EF) less than 45% (typically measured by an echocardiogram). EF is how much blood the left ventricle pumps out with each contraction. A normal EF can be between 55 and 70.
  3. No other cause for heart failure with reduced EF can be found.

Laboratory blood tests are a standard part of the evaluation. This includes tests to assess kidney, liver and thyroid function; tests to assess electrolytes, including sodium and potassium; and a complete blood count to look for anemia or evidence of infection. In addition, markers of cardiac injury and stress can be used to assess level of risk.

Symptoms of the condition include:

  • Fatigue
  • Feeling of heart racing or skipping beats (palpitations)
  • Increased nighttime urination (nocturia)
  • Shortness of breath with activity and when lying flat
  • Swelling of the ankles
  • Swollen neck veins
  • Low blood pressure, or it may drop when standing up.

The severity of symptoms in patients with PPCM can be classified by the New York Heart Association system:

Class I – Disease with no symptoms
Class II – Mild symptoms/effect on function or symptoms only with extreme exertion
Class III – Symptoms with minimal exertion
Class IV – Symptoms at rest

What are the causes?
The underlying cause is unclear. Heart biopsies in some cases show women have inflammation in the heart muscle. This may be because of prior viral illness or abnormal immune response. Other potential causes include poor nutrition, coronary artery spasm, small-vessel disease, and defective antioxidant defenses. Genetics may also play a role.

Initially thought to be more common in women older than 30, PPCM has since been reported across a wide range of age groups. Risk factors include:

  • Obesity
  • History of cardiac disorders, such as myocarditis (inflammation of the heart muscle)
  • Use of certain medications
  • Smoking
  • Alcoholism
  • Multiple pregnancies
  • African-American descent
  • Poor nourishment

How can PPCM be treated? 
The objective of peripartum cardiomyopathy treatment is to keep extra fluid from collecting in the lungs and to help the heart recover as fully as possible. Many women recover normal heart function or stabilize on medicines. Some progress to severe heart failure requiring mechanical support or heart transplantation.

There are several classes of medications a physician can prescribe to treat symptoms, with variations that are safer for women who are breastfeeding.

  • Angiotensin converting enzyme, or ACE, inhibitors – Help the heart work more efficiently
  • Beta blockers – Cause the heart to beat more slowly so it has recovery time
  • Diuretics – Reduce fluid retention
  • Digitalis – Derived from the foxglove plant, it has been used for more than 200 years to treat heart failure. Digitalis strengthens the pumping ability of the heart
  • Anticoagulants – To help thin the blood. Patients with PPCM are at increased risk of developing blood clots, especially if the EF is very low.

Doctors may recommend a low-salt diet, fluid restrictions, or daily weighing. A weight gain of 3 to 4 pounds or more over a day or two may signal a fluid buildup.

Women who smoke and drink alcohol will be advised to stop, since these habits may make the symptoms worse.

A heart biopsy may help determine if the underlying cause of cardiomyopathy is a heart muscle infection (myocarditis). However, this procedure is uncommon.


I was experiencing almost all the symptoms listed during my pregnancy. What makes it so difficult is that they are similar to many pregnancy symptoms. As my symptoms worsened, I contributed that to the fact that I was 36/37 when I was pregnant with John, ten years older than when I was pregnant with Michael.

By the time I was admitted to the hospital I was at Class IV – having symptoms at rest. My ejection fraction was at 15%, where a healthy heart is around 60%. So there we were with a brand new baby and two little boys at home, scared to death, with doctors talking to us about life expectancy and a possible heart transplant down the road if my heart didn’t heal. In those first few days I remember agonizing over the possibility of Jon having to raise our three boys without me and I felt tremendous guilt.

There was a whirl-wind of information and a lot of medication. I remember being in that bed, my infant son and 3 boys at home, feeling so weak, so sad, with ice packs on my chest too because I was told that I couldn’t breastfeed or even pump because of my medication. The blood pressure machine would go off every 15 minutes and during that time, I would do the slow deep breathing exercises I learned in childbirth class all those years earlier and try to “will” my blood pressure down.

I was at United for around 7 days and sent home with all my medication, homework of cardio rehab, and feeling overwhelmed by my unknown future.I remember stopping at Target on the way home (Never to sick for a Target run!) and being so weak I felt like I was walking at a slant.

Not surprisingly, our wonderful families, friends and community rallied around us and carried us through.(This seems to be a theme we are all very grateful and blessed to have.) The short version of my healing is that I was on medication for about 1 1/2 years, was weaned off of meds and I GRADUATED from the heart clinic, which I am told is very rare. My ejection fraction is back up in the normal range and I am considered to be 100% healed!

Tomorrow I am wearing red, Jon is wearing red, I think I can get Jeffrey to, and I need to get a hold of Michael. John…he’s fighting me. I set out a very nice red sweater and he told me, “There is no way I am wearing that thing! I will look like a pilgrim!”. He wants to wear his Wild jersey, which is red, but it just so happens he is supposed to wear something a little nice for his choir concert tomorrow. To him a Wild jersey is WAY nicer that a scratchy ol’ red sweater.

I hope to see a lot of red tomorrow!!

Hey – a side note: I thought I was 47, but in writing this blog tonight I realized I am 46! Oh Happy Day!!