Jennifer Anton

 Peripartum Cardiomyopathy Support Network

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Thank God for this website.  I wish I had found it earlier.  My name is Jennifer Anton and I am 29 years old and live in Chicago.  My daughter, Vivien is now 6 months old. 

On August 2nd, I had a c-section and a beautiful baby girl but the whole time in the c-section surgery I was not feeling right.  I was shaking out of control, my heart was racing and I really felt something was wrong.  I remember looking into my husbands eyes and thinking I wasn't sure if I was going to make it through.  When they delivered the baby, I told him to go with her and the nurse held my hand as I was shaking so hard on the table my jaw hurt. It was hard to feel the happiness of the baby when I just felt like I was going to die.

Afterwards, I gained 10 lbs of fluid while still in the hospital and was not urinating very much.  I felt very strange (light headed, pressure on my lungs, exhaustion, swelling in legs neck and forearms) which I explained to each resident who checked on me and they told me it was normal.  Finally, the day before I had to go home, I told my husband I was not comfortable being checked out, I just did not feel right and we had the attending paged.  I described how I felt and he reiterated that it was "normal" and actually told me it would get worse before it got better. I requested a diuretic and he said it was unnecessary. I left the next day and went home, continuing to feel worse and worse and finally starting to get wheezing in my lungs. A day after being home, I asked my mom to come and be with us because I couldn't even change Vivien's diaper without needing to sit down and rest while my heart raced.   By two days out of the hospital, I felt terrible and scared.  I took a hot bath (OBGYN said it would help with the swelling) and after I got out, I thought I would pass out.  I could barely breath, it felt like a man was sitting on my chest.  I started crying and called by OBGYN again who finally said to go to the ER. At this point, the edema in my legs, arms and neck was so extensive that my husband could poke my leg and the mark would just stay there.  We both commented that they looked like the legs of a dead person. I was so scared.

In the ER, they saw that I had an effusion in my lung and tested me positively for heart failure. My BNP was over 300 (normal is 50).  The doctor in the ER believed it to be a peri partum cardio myopathy. She looked at my jugular vein which was pulsing out of control and actually brought other new doctors in as if I was someone they could learn from.  They did an echo and found that three of my four valves were regurgitating, some moderately, some severely. They admitted me, treated me with Lasix diuretics and I lost 22 lbs in 48 hours - all fluid.  The cardiology team at Northwestern Memorial Hospital in Chicago seemed stumped.  They said they had never seen this before.  Specifically, they were confused because my ejection fraction was about 50%.  They sent me home and told me to call if I started swelling again or gained more than to lbs and told be to follow up with a special cardiologist.  I went home still not feeling right and feeling confused and unconfident.  I literally did not feel like I would make it through the night and I told my husband how thankful I was to have had the life I had. I was scared that I would not be able to see my daughter grow up.  The worst part was the ambiguity that the doctors left me with.  When I ended up improving, mentally it was still hard to take my daughter out thinking that I might pass out and someone might take her.  I started to get depressed by the whole situation and then, as if things couldn't get worse, my grandmother who was in the hospital died before getting to meet Vivien.  We had to deal with this in between trying to do all the follow-ups with cardiologists. 

Two weeks later, my echos were showing that the regurgitation was almost gone. The first cardiologist I followed up with was extremely flighty and could not give me any more answers.  She said I was overloaded with fluids and that is what caused by heart to regurgitate and the heart failure. She did not want me to get on an Ace Inhibitor. Thankfully, I went to a more highly regarded cardiologist at Loyola who felt that it probably was a minor peripartum cardiomyopathy and stated that the injection fractions have a 10% margin of error. She directed me to take an Ace Inhibitor and also ordered a lung scan, heart scan and cancer bloodwork to rule out anything else that might have caused the heart failure - all that came back normal.  Since PPCM sometimes take 6 months after pregnancy to confirm, my doctor waited until last week to request another echo.  This time, she sees that my ejection fraction is good but my mitral valve is thickening and continuing to regurgitate slightly.  She feels certain that it was a PPCM and has advised me that I should not have additional pregnancies.  When I asked her what would happen if we did decide to get pregnant, she said we would have to be highly monitored by a high risk OB, that I would need echos every month and that if my heart function went down we would need to be willing to terminate the pregnancy at any point.  I would be putting my life and the baby's life in jeopardy.  This is not an outcome I can live with.

The crazy thing is, I have been completely healthy my whole life and been extremely active (dancing, weights, cardio training) and never had a murmur or anything.  I don't understand why this is such a mystery to health professionals.  I have now lost almost 60lbs and am working out and starting to feel good again as long as I take my ace inhibitor.  I am so thankful for my life and my beautiful little girl.  My husband and I are planning on adopting and helping to save the life of someone who may not have had a chance.  I think that everything happens for a reason and that we were meant to have our little Vivien and then move on to adopting others. 

I hope that by the time my daughter is having children, they will be educating OBs and cardiologists about the risks of PPCM.  In my opinion, every woman who is showing extreme edema or complaining of problems breathing before leaving the hospital should be checked for PPCM.  It could save lives.

If anyone would like to discuss this more with me, I can be reached at jenniferanton@hotmail.com