Living with Heart Disease After PPCM dx in 2000

In September of 2000, I found myself in the emergency room at five in the morning.  Nights of not being able to breathe right led me to this.  I was told I was in congestive heart failure and that was it.  Hindsight is 20/20 and if I knew then what I know now, I might have been able to get better.  My symptoms started when I was 32 weeks pregnant.  My feet had swelled to the point that I had to wear flip-flops to my corporate job because shoes and sneakers were just too tight.  I could literally feel the pain from the fluid in my feet.  A co-worker of mine looked at me and told me the swelling wasn’t normal.  I called my ob-gyn and explained to him that my feet were really swollen.  He told me that was normal with pregnancy.  I told said to him sternly, “No.  You don’t understand”, and hung up the phone.  I was determined to go directly to his office after work and let him see what others were telling me didn’t look right.  At 4pm that day, I drove straight to his office and walked around my desk and said asked him if that was normal.  He told me that I couldn’t go back to work and wrote up a slip for me to send to my supervisor stating that I was being put on bed rest.  The next morning, I went to work with the slip because I was in the middle of training my replacement for maternity leave.  I quickly gave her the last training session we would have, gathered a few things and went home midday.  After that day, I had appointments with my ob-gyn every Tuesday, he had found that my blood pressure was going up all the while I was trying not to do anything strenuous.  On the third Tuesday, my blood pressure and rose yet again and my doctor told me I needed to go straight to the hospital.  I already had my bag packed from a few months prior anticipating that anything could happen at any time so it was better to be safe than sorry.  With that, my grandmother drove me to the hospital and I was admitted.

At the hospital I was made to lay on my left side.  I also had an ultrasound that revealed the sex of my baby which was a boy.  I didn’t know before because I didn’t mind being surprised.  I was told they were going to check the protein in my urine over a period of 24 hours and also my blood pressure.  If my pressure didn’t go down they were going to perform a C-section.  The next night I was told that the protein check needed to be restarted because the nurse from the night before emptied my urine and messed up the test.  So for another 24 hours my urine was collected and when I wasn’t in the bathroom I was made to lay on my left side.  That Thursday night I was told that I would be able to go home on Friday.  That news gave me a sigh of relief.  Until, I woke up the next morning at about 5:50am dying to go to the bathroom.  I called the nurse who then helped get everything clean and she told me, I wet myself sometimes and I’m not even pregnant.  In my head, I was thinking T-M-I!!!!  When she left I went back to sleep, and then woke again with the same intense feeling around 7am.  I called for the nurse.  This time a different nurse checked my amniotic fluid and found that my water broke.  I had a feeling that it did because of a story my son’s paternal grandmother told me about when her water broke.  So at 8am I was leaving the room I was in while I watched my breakfast roll in.

In the delivery room things went smoothly.  I was induced at 9am, given Demerol at 10am, woke up at 2pm and gave birth to my son at 3:01pm after 2 simple pushes.  The Demerol had me knocked out, but I heard when the doctors and nurses told me that my baby was a bit jaundice and needed to be under the ultraviolet rays in the NICU.  For the next 2 days I visited my baby.  I was told that he would have to stay another day but I was okay to go home.  I wasn’t home for 3 hours before I received a phone call that my baby never had his first bowel movement.  I went back to the hospital and my baby was seemed okay, but something was wrong.  The next day I went back to the hospital and my baby was moaning.  I didn’t realize how much pain he was in. That night I was given a call at midnight telling me my baby would have to be taken to Philadelphia’s Thomas Jefferson Hospital and placed in the NICU there since Mercer Hospital in Trenton, NJ where he was born did not have a pediatric surgeon on board and if something were to happen they weren’t equipped to handle the situation.  I went to the hospital and waited until the ambulance took him.  The next day was the 4th of July, and I found myself with other family members in Philadelphia early.  When I saw my son I broke into tears.  My baby’s stomach was so huge and shiny, it looked like it could be popped by a pin like a balloon.  I asked the doctors what was wrong, they told me that he had Necrotizing Enterocolitis which is the swelling of the walls of the intestine.  Apparently, the doctors told me that since my blood pressure was so high, the baby’s own pressure had to adjust and couldn’t.  The swelling in his intestines had gone down and left strictures that was trapping his bowel movements.

My Details

  • Date Diagnosed: 10/09/2000
  • Child: 1
  • Initial EF: 15%
  • Current EF: 25%

Story By Natasha Pennant

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