Our survivors

Michelle Rodriguez

I thought I was an expert on pregnancy, after all this was my fourth one. Little did I know, there was such a thing as postpartum cardiomyopathy.


In April of 2010 at age 35, I delivered a healthy baby boy. I had extreme swelling in my legs and feet, but was assured that it was a normal symptom of pregnancy and no cause for concern. It did not seem normal to me, but I assumed that it was due to my "advanced maternal age". I was sent home to recuperate with my baby, even though I could not even put on my socks or shoes due to the swelling, and left the hospital barefoot.


Over the next several days I developed a cough, and was short of breath. I had severe pain in my back and was unable to lay flat because it felt like I was drowning. I remember vividly the panicky feeling of not being able to breathe. I thought I had a cold. Thankfully, a good friend convinced me that it was not normal and to go to the ER.


When I arrived at the ER they immediately did an EKG and took me straight back to a room. I think they drew blood, but honestly I can't remember much of that day. I was given an IV, but never told what it was or what it was for. I later learned that it was lasix, when I suddenly urgently had to pee! After about 45 minutes in the ER a cardiologist came to see me and told me that I had congestive heart failure, due to postpartum cardiomyopathy. He advised me that I would need a heart transplant, and would probably not make it through the night.  I was transferred to the ICU, and they did an echo-cardiogram that night. My EF (ejection fraction) was 13, and I was told again that I would need a heart transplant. By the next day the lasix were doing their job and I had lost over 40 pounds of excess fluid. I spent 5 days in the ICU, and was sent home with medication.  


Now, almost 8 years later, my EF is considered recovered at 50%, but I still have diastolic heart failure. I am able to live a fairly normal life with no medication. There's life after PPCM, don't let a doctor tell you otherwise! Be your own advocate.

Ann Cook

Having my first daughter was one of the biggest blessings I have ever experienced. I always knew I wanted children, three to be exact and my husband and I were so excited when we got pregnant at the age of 26. Through my third trimester of pregnancy, I remember thinking, how do women enjoy being pregnant? They must be crazy, this is miserable. I had extreme swelling, I couldn't walk across the room without  gasping for air and I was told, "it's normal, you're pregnant". 


After my C-Section, my swelling got worse and so did the shortness of breath. I couldn't even put my feet up in a recliner due to lack of air. My dad came over to check on me and the baby 6 days after she was born. He walked in and I was leaning over with my elbows on my knees and he said "why are you sitting like that?" I said, "it's the only way I can breath". He immediately said he was taking me to the hospital, I got up to gather my things and he made me sit back down and called an ambulance. My father is a Retired Fire Chief, I don't believe he has ever called an ambulance for a family member in his life so, that instantly had me more worried.


The ambulance showed up and carted me outside and to the hospital. It was all a blur. They ran test and poked at me for what feels like forever. I don't remember much of it, but I remember the cardiologist coming in. He calmly told me that I have Peripartum Cardiomyopathy, my Ejection Fraction is 20%. He had read about it in a text book once in medical school and never actually witnessed a case. He continued to say, I will be on meds for the rest of my life, I will need a heart transplant and will never have another child. 


I then spent approximately two weeks in and out of the hospital. They managed to pull 54 lbs off of the fluid that I was retaining and I got my medicine squared away. I couldn't settle for the fact that I would never have another child nor a doctor that had never treated a case of PPCM. I did more research on high risk pregnancy programs in my area and found the leading PPCM specialist in my city. As of 16 months after diagnosis I am deemed recovered, I have a follow up appointment this week to verify that my heart is indeed strong enough for another pregnancy. Life with PPCM hasn't been perfect, but it's ours and I wouldn't trade my daughter to take away one second of this journey. I always joke, the reason she's so perfect is that I put my whole heart into her. 

Doreen Musasizi

 On 19th June 2017, I gave birth to a baby boy and this was my second pregnancy. When my son was two, I caught a cough which I thought was a normal cold, however, when it persisted, I thought I had contracted tuberculosis because by then I was working with a children's organization that takes care of children with HIV/AIDS. I went to the hospital to test for tuberculosis and my results turned out negative. a cough persisted and eventually, I fell so sick. I was treated for different infections and I would be on and off in hospitals. However, one morning I woke with very swollen legs and my face was swollen as well. This scared me so much that I called my doctor who instructed me to go to the hospital immediately when I got to the hospital several tests were carried out including having an x-ray and an echo. I was immediately admitted as the doctors waited for the results. Later, the results showed that I have Peripartum Cardiomyopathy and a clot in my heart. Immediately I was taken to the ICU where I spent two weeks undergoing treatment and later was discharged to go home with medication. I was put on blood thinners and in February 2018, the clot had dissolved. My EF on diagnosis was at 13% and today is at 36%. I am so grateful that am steadily recovering and hoping for a better tomorrow.


However, in Uganda, there's little or no awareness about PPCM and more than 99%of people have never heard about the condition and yet it's killing a lot of mothers. It's because of this ignorance that so many women in Uganda die a few months after giving birth and the health workers are ignorant about it as well.

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A Mom's Heart

North Kansas City, Missouri, United States