Self diagnosed PPCM

4 min read

June 8th, 2015 is the day that changed our lives forever.  This is both the date I was officially diagnosed with PPCM, and also the day my son was born.

I had a pretty easy pregnancy.  Baby was due June 23, 2015.  We had gotten pregnant pretty easily after only about a month of trying.  Nothing unusual, only some occasional morning sickness.  Around 34 weeks or so is when things started getting rough.  I was still working long days, in a physical job loading a trailer and running around on my feet all day.  I was swelling quite a bit, and expressed my concerns at my OB appointments, but was told it was "normal" but they would watch things to make sure I didn't develop pre-eclampsia (no other symptoms).

May 29th I had contractions all day at work.  They didnt seem to be increasing, but were around 4-6 minutes apart, so we headed to the hospital to get checked out. They had all but stopped when we got there, but being new to all this, they wanted to check things out anyways.  I wasn't dilated, but while on the monitors my BP shot up.  They decided to give me IV fluids and do blood tests.  My BP went back down, so they said I was just dehydrated, and to drink a bunch of water and rest, and sent me home.

I ended up starting my maternity leave at that point, as my OB wanted to see me 3 times per week to perform non-stress tests.  I noticed i had started gaining weight pretty quickly, which was weird as I had not gained much during the rest of the pregnancy.  I gained 4 pounds in 2 days.  My legs looked like tree trunks by this point, and I noticed breathing was getting harder.  I had been doing my research and had read about PPCM.  I was convinced this was what was going on, but at the same time was convincing myself that it was impossible.

My husband and I ended up in the ER on June 5th, as I was having a lot of trouble breathing and could not lie down and breathe at the same time.  After 4 hours there, they had done a chest x-ray and diagnosed me with pneumonia, gave me some prescriptions, and sent me home.  24 hours later we went back, as I was now having chest pains and breathing was still extrememly tough.  They ended up admitting me that time, and they were still convinced it was just pneumonia.  My heart rate was in the 120's resting, and every time I got up out of bed, it jumped into the 150's.  They were watching this, but no one seemed concerned.

June 7th things seemed like they were getting better.  I was on oxygen and having breathing treatments, but I was feeling better...until 8 pm that night.  I began having a hard time breathing again and could not cool myself off.  All night.  My husband ended up staying the night because I couldn't fathom being alone.  The next morning, I had barely slept and still couldn't breathe.  My nurses weren't taking me seriously, I even had one say that nothing was wrong, and that I just needed to get up and move around some.  I couldn't even see straight, nor breathe, I had to close my eyes just to even try to focus on breathing.

They came in to do the scheduled echo and then L&D was in there for their daily monitoring.  At this point I was convinced I was dying and still no one was listening to me.  My heart rate was spiking into the 170's now, higher than the baby's.  Next thing I knew, there were about 20 people in my room.  They pulled my husband off to the side to explain what their action plan was.  They ended up rushing me down to the critical care unit, where they said they were going to do an emergency c section and get the baby out, as he was still healthy at that time.  I made them knock me out right then, as I still couldn't breathe and couldn't focus or calm down.

I don't remember much of the rest of that day or the next couple of days.  I was in CCU at 2:15 pm, knocked out and intubated at 2:45 pm, and baby was born at 4:09 pm.  I woke up (still mostly sedated, but apparently sedation meds don't work that well for me) late that day/night, so the nurses were trying to explain what was going on, even though I knew.  I knew what my diagnosis was already, and believe it would have been caught earlier if they had listened to me.

Currently, I have been out of the hospital for a month, minus a 4 day return visit where they found blood clots in my lungs.  I have been wearing an external defibrilator, and will continue to do so until my repeat echo in 2 months.  My cardiologists are pretty awesome and very optimistic about my chances for a full recovery, as I am fairly young and had no health issues prior to this.

update as of 1-23-16:

My repeat echo in September showed my EF to be around 50%, but my cardiologist said it was only 35%.  I went and had the MUGA scan done, which came back at a 67%.  We did a limited echo after this to see how it compared with the MUGA, and that came back at 50-55%.  I was allowed to discontinue wearing the defibrilator, andmy cardiologist had me stop taking the Coreg.  I have an echo this coming week, so hopefully things are still looking good.

My Details

  • Date Diagnosed: 08/06/2015
  • Child: 1
  • Initial EF: 20-25
  • Current EF: 50-55

Story By Lexie Newhausen

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I have a hard time finding another story quite like mine no matter how hard I look. I was 26 and pregnant with my second

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