My Heart Belongs to My Boys

4 min read

I was diagnosed with PPCM in September 2011.  I had my second son 2 weeks early on 08/25/11.  He was a beautiful boy weighing in at 9 lbs, 3 oz.  I was so excited that our little family would be complete.   My pregnancy was pretty uneventful until the swelling began at about 7 months.  It continued to get worse each day.  I swelled a lot with my first son, but this was much different.   I would complain every time I went to the OB and they dismissed it as regular pregnancy symptoms.  In the last month, I had swelling all the way up my legs and even in my abdomen.  Again, I was told, it was all normal.  I told them repeatedly that I was miserable, but they refused to do my scheduled C section any earlier.  In the last few weeks, I couldn't lay flat and didn't think I could make it one more day. Luckily, my sweet baby boy decided to come early and I went into labor in the early morning of 08/25.  We got to the hospital and I was barely dialated.  They were actually considering sending me home even though I was so SWOLLEN.  I pleaded with them that I wanted to stay and they agreed to check me again in an hour.  In the meantime, they gave me IV fluids, as if I needed anymore water on me.  Thanks to God, I dialated to 4 cm and they agreed to proceed with the C-section.   My OB was; of course, on vacation, so I had a Dr that I never even met.  The C-Section went smoothly and before I knew it, my son and I were being wheeled back in the room.   I was very anemic from the surgery and the nurses kept commenting on how pale I was.  All was fine.  I was tired and still didn't lose any of the water, but wasn't concerned at all.  I then started sweating at night so bad, I would have to change my gown.  When I told the nurses, they just said it was hot in my room.   They ended up sending me and baby home in 3 days.  My first day at home I was up all night coughing.  The hospital gave me the whooping cough vaccine, so I thought maybe I got whooping cough.   I felt a bit dizzy, but thought it was just side effects on the pain killers.  The cough continued and began getting worse.  I called the OB wondering if I had some surgery complication.  They said it sounded like a cold (even though I had no other cold symptoms) and told me to take a Decongestent.  I proceeded to get worse, but it was going to be my appt with my OB to get my staples removed, so I waited.   I went to the OB and the nurse came in to take my staples out.  I couldn't stop coughing the whole time.  The nurse told me I could go.  I demanded to see the doctor.  He finally came in.  He listened to my lungs and said I was fine.  I aksed him why I hadn't lost any of the water on me.  He sent me home with the prescription to lasix and a prescription decongestent.  I thought this would work, but I kept getting worse.  A few days later my husband and I went to urgent care.  They gave me a chest X-ray and said I had pnemonia.  They said it was pretty bad and sent me to the hospital via hospital.  They also said my BP was 140/88.  My BP had at that point never been over 120/70.  I left in the ambulance and my husband went to arrange for someone to watch our boys.  When I first saw the Dr in the ER, she mentioned the possibility of PPCM.  I was shattered and in disbelief.  By the time my husband arrived, I was hysterical.  He couldn't believe it either.  I was finally admitted and put in the ICU.  They started the IV lasix. I lost 5 lbs in a half hour.  I was in the hospital for 4 days and lost a total of 40lbs.  The cardiologist in the hospital were out of date in hindsight. They gave me the diagnosis before even getting me an echo.  They told my husband I would never recover and; of course, said NO more children.  Another doctor from that office came to my room a few days later.  He looked at my chart and said, why are in the Cardiac Unit.  You don't have a heart issue.  I was so relieved!! I asked him if he was sure because his partner disagreed.  He came back 45 minutes and said, "oh yeah, you do have an issue".  My world was shattered all over again.   He also finally ordered an echo.  At that point my EF was 40%.  I was released from the hospital with my heart failure info and a whole slew of pills.  I still didn't feel great when I got home.  I couldn't even shower without passing out and I couldn't walk up our stairs.  My husband had to take our son to his first Dr's appt alone because I was too sick to go.  He told our pediatrician what happened and the pediatrician gave him more info on PPCM than our cardiologist in the hospital.   My husband asked him if he knew any other cardios and he said his brother was one!  We immediately made an appt for a 2nd opinion with his brother.  There was a 3 month wait, but he called in for us and I got an appt a couple of days later.  My new cardio sat and explained it all to us for a very long time.  He said, more children were possible.  He said that my BNPs were in the 7000 range and I had to have been under an EF of 40.   Fast forward to March 2012... I get my 6 month echo and receive a 50%!!!!  Normal size heart and no leaky valves!  I still can only handle a very low dose of the BB, but I feel that I am moving in the right direction and am optimistic for my 1 year echo.

My Details

  • Date Diagnosed: 04/09/2011
  • Child: 2
  • Initial EF: 40
  • Current EF: 54

Story By Angie Jones

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