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Cardiomyopathy Guide

Christine Jeffries

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ask: Peripartum Cardiomyopathy: Congestive Heart Failure for the newly postpartum, how common is it?

By Anonymous
 
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I was sent home with a new baby after a c-section. I had developed symptoms that I attributed to a chest cold (difficulty breathing, wheezing, lethargy) and thus returned to my OB in search of a remedy. Little did I know that I had Peripartum Cardiomyopathy. I still struggle to wrap my head around how I could have developed this condition and how ignorant I could have been to this horribly dangerous perinatal related illness. Now I try to communicate with others about my situation and circumstances but often I find reluctance, even on the part of the medical professionals, to engage. Why are we, as women, kept in the dark about such risks? Perhaps there is some correlation between low risk and reluctance to discuss it. I hope to uncover the answer.

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Alison Beaver

Hi,
Congratulations on your new baby! I am sorry that you have been diagnosed with this condition, during a time when you are already exhausted, overwhelmed...but also deliriously happy (hopefully some/most days!) with a new addition to your family.

Peripartum Cardiomyopathy is a rare condition (let me know if you would like some resources), and I would not say you are "ignorant" at all! It is not diagnosed until late in pregnancy or after delivery. I know what you mean about feeling "in the dark" by medical professionals, but the other side to the story is: they may not have mentioned this risk to you, as it is so rare. There are risks associated with everything we do (or don't do), and it is impossible to forewarn every individual about what may/may not happen to them.

I am surprised about the reluctance of the medical community now, however. Are you trying to find out more about your condition, or are you still trying to find out why they didn't warn you in advance? Trying to place blame would undoubtedly lead to other's being reluctant to engage in conversation with you, whatever their profession. I think many, if not most, of us have had diagnoses ourselves or within our families that have angered us; why weren't we told this was a possibility? I think this is a very normal emotional reaction to a chronic condition. Your diagnosis is one of those frustrating conditions (in my opinion, which I think you share), as this is a heart condition DEFINED BY the fact that there was no prior history of heart disease. The only "cause" is pregnancy...how frustrating is this?!

(I can relate slightly, as I had NO risk factors for diabetes, and developed gestational diabetes. The only cause? Pregnancy! Luckily, my gestational diabetes was cured when I gave birth, although I have a much higher risk of developing diabetes as an adult. A woman I met last month was Dx with gestational diabetes, and her's was not cured after delivery...now she is living with a chronic disease that was "caused" by pregnancy).

If you look at the risk factors, which are risk factors for practically any other health condition: obesity, having a personal history of cardiac disorders, use of certain medications, smoking, alcoholism, multiple pregnancies, being malnourished, etc. Do you have any of these risk factors mentioned above?

Have you heard of the Mother's Heart Network, a support network of moms diagnosed with Peripartum Cardiomyopathy?
This may help with your struggle to intellectually and emotionally wrap your head around this diagnosis.

Have you found any doctors who you feel are providing you with excellent care, both for your body, mind and spirit?

July 9, 2009 - 2:19pm
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