Mimi's Heart

8 min read

My first (and only) pregnancy was a complicated one.  It didn't start that way.  It began as all first time pregnancies begin, with joy, hope, fear, and love.  A new life, a new adventure.  We were excitied with all the possibilities new life brings.

Around my fourth month of pregnancy, I began having pain in my abdomen.  I thought at first it was the normal changes, stretching, expanding inside and out.  However, it turns out a previous medical condition was rearing its ugly head.  I had kidney stones, again.  This time, complicated by an ever growing baby to be.  Multiple ultrasounds and trips to the ER later, we found out I didn't just have one stone, I had multiple stones, in both kidneys.  Further complicating things was that as Eleanore grew, my right kidney was being squished, causing it to back up and I developed hydro nephrosis.  Stones are painful in their own right, but add the aches and pains of pregnancy, and throw in a backed up kidney and we're talking some serious pain.

Being concerned for the health of my unborn child, I was resistant to the pain medications my Doctor had prescribed to me for the worst days.  That came to an end when during another unexpected trip to the ER, they found I was 80% effaced and only 6 1/2 months along.  The Doctors gave me steroid injections to help develope Eleanores lungs faster, in case I progressed further, and also advised that this was most likely happening due to my initial refusal to manage the pain.  The cramps associated with the stones (some small ones passing) was causing my body to prepare for delivery.  So pain meds and rest it was.

One month later, I was rushed to the ER in excruciating pain, off the charts pain, pain you would never wish upon your worst enemy.  A 5mm stone was on the move, and due to my ever expanding belly, it could go no further.  I went into surgery the following morning.  I thought there can be nothing more terrifying than lying awake, with a spinal block, as a doctor operates on you and hoping your child can survive, you can survive, and if both happen, your daughter doesn't make an early entrance into the world.  I spent 12 hours in recovery, trying to regain control of my muscles, depserately praying for the contractions to stop, and reassuring everyone around me I was really OK.  By the next evening everything was back to normal.  No more contractions, and minimal pain due mostly to my newly aquired stent.

Over the next few weeks things returned to normal.  At first I didn't really think anything of the little flutters I was feeling in my chest.  Just stress, anxiety I thought.  A perfectly normal reaction after everything I had just been through, especially with the nagging thoughts of, "will it happen again?".  I continued going about my days prepping for Ellie's arrival, visiting with friends and relatives, taking it easy, and resting.  That's when I felt them the most, the flutters, when I was resting.  The problem was that now they were getting stronger, more pronounced.  I would instantly lose my breath, feel like my heart had actually stopped beating, I could FEEL that.  I would cough, and cough and my beats would return to normal.  I remember one night asking my boyfriend to check my pulse, I was so scared, it was the worst set yet.

I started getting winded walking around the house, walking up a flight of stairs.  I brushed it off.  Oh I'm just the size of a house, and I'm carrying high, of course you are short of breath! I would go to bed, and I would have to get up constantly.  Not because I was uncomforable, but again I would feel that heart stopped beating sensation, and if it wasn't that I felt like I was breathing under water.  On top of that, if those two things didn't wake me up it was the constant trips to the bathroom.  I swear I felt like I had to go every 20 minutes!  All day, all night, never ending trips to the bathroom.  Those were much easier to dismiss, you, know, kidney stones, a baby on my bladder, it was normal I told myself.  None of these things were normal.

I brought my concerns to the attention of my OB.  I felt like a crazy person, telling him these things.  Maybe I talked myself out of them, excused them away while I talked to him, anxiety, stones, normal pregnancy symptoms.  He said he could have me set up with a halter monitor, but the way he talked about it was dismissive, like, he was placating me.  So I declined.  Worst mistake ever.  I knew something was wrong, but I allowed his dismissive attitude to influence me and confirm my feelings of paranoia.  I didn't want to be the hypocondriach pregnant lady.

I delivered a healthy baby girl on August 26th, 2010, 8 lbs. 20 inches.  Eleanore was perfect!  Unfortunately more complicatios lay just around the corner.  Nine weeks post delivery we discovered a piece of placenta had been missed, until I delivered part of it at home.  Next morning, another surgery.  I made an appointment to see my Primary care Doctor after that, make sure nothing else was going on.  Turns out my Liver wasn't functioning normally and he had no clue as to why.  During that appointment I mentioned my family history of heart problems and high cholesterol, so he sent me straight to the Cardiologist.  That initial visit we discovered a T-Wave abnormality.  Nothing to worry about, he said, it could just be how you are wired.  We went ahead with an echo and stress echo, "Just to be safe, I'll call if something is wrong."  Two weeks later, he hadn't called, so I decided everything must be fine, and went ahead and scheduled my last surgery to deal with those meddlesome stones.

I remember before my surgery just being exhausted, like flat out, I could pass out at any given moment tired.  Still short of breath, still feeling the palpitations, honestly they had never fully gone away.  I still felt at times that I was breathing under water, and I had definitely been so exhausted I felt as though I was hallucinating at times.  I spent an entire day calling my daughter by the wrong name, not because I didn't know it, or it wasn't on the tip of my tongue, it was the confusion from the exhaustion, I felt like my mind was trapped in a loop.  One that had breaks in the line, and I couldn't put the pieces together in the proper order.  But all new moms are tired, right?  It had to be normal, besides the Cardiologist hadn't called.

I'd like to say my Stone surgery went without a hiccup, but that would be too easy.  Luckily, it wasn't my heart.  The crushed stone pieces had blocked my ureter completely, so 30 mins after I was discharged I found myself back in the ER, and ultimately another surgery.  All of the stress and trauma caused me to lose my breast milk, which was emotionally devastating.  Not to mention the stress of trying to get it to come back, and crash switching to formula, as all of my resere milk I spent months stock piling was gone.

Two weeks after those surgeries I found myself back at the Cardiologist for what I asummed would be a routine appointment, get the results that all was fine.  I remember sitting alone, waiting to get the all clear, and thinking about taking Ellie for a walk in the park after.  When the Doctor came in he announced he had good news and bad news.  I still wasn't thinking anything too serious, just my cholesterol was high.  His face went white when I told him I had just undergone two surgeries, that's the first time my heart skipped.  Why would he look so freaked out?  He launched into a speech about not wanting to upset my Holidays (Christmas had just passed) and how he had talked it over with his wife (turns out she is a ertility Doctor), asked her what she would do in this situation.  What situation?  I didn't understand.  He was saying they thought it best to let me enjoy my Holidays before telling me.  Tell me what?!?!  But I couldn't speak.  That's when he told me.  My heart was only pumping at 35-40% at rest.  He categorized it as moderate to sever heart failure.  Heart failure?  What?  My heart dropped to my stomach, and he just kept talking, and it was like all the information was swimming through my head and I couldn't grasp it.  He was talking about medications, and game plans, outlook, no more babies.  That's when the tears started to fall and I told him to stop talking.  Just stop talking!  I was all alone.  My mom had driven me and was outside, so I told him he couldn't say another word until he brought her in.

As soon as she saw me I could tell she knew it wasn't good.  She sat quietly and grabbed my hand, then he started going through everything again.  The test results, prognosis, game plan.  Then he said it again, no more babies.  I have never experienced shock and grief so heightened in my life.  I couldn't speak.  Really when you hear something like that, something so unexpected, so out of left field, there are no words.  Somehow we came to the decision to do a nuclear heart scan.  Sometimes these things can turn themselves around on there own he said.  Maybe you won't need the medications.  Hope.  Something to hope for.

I am one of the lucky ones.  My heart did heal on its own.  The scan showed great progress and my EF was just below 50% at rest, I was improving, on my own.  Just about three years later and my echos are looking good.  No relapse and I haven't had to take any medications.

I've had mixed reactions to my diagnosis, friends, family, everyone has an opinion.  I'd like to say that I have received nothing but love and support as I deal with the emotional fallout from this diagnosis, but I would be lying.  One "friend" I talked to about my diagnosis, soon after I received it, made an excuse to get off the phone, said she would call back in a bit.  That was 2 years ago.  My boyfriend and I have talked about having a post PPCM baby, but it's a double edged sword.  Am I selfish to deny he and our daughter another baby and sister?  Or am I foolish to go for it and risk it happening again, this time with the distinct possibility that I won't be able to return to normal function, or worse.  A family member actually said to me, "Well if you do decide to have another baby, I hope you can, and quickly, you're getting older, you're almost 35.  And I hope it's worth the risk of leaving Eleanore and possibly another baby behind."  We no longer speak.

For the most part though, I have received love and support from my friends and family.  None of them want me to have another baby.  They like me the way I am, healthy, active.  They are afraid of what could happen.  I can't blame them, I'm afraid too.  There is so much guilt that comes from this diagnosis, so much grief, for me I've described it as a sense of loss.  What might have been.  No second thought or hesitation to having another baby.  Giving my daughter a sibling I know she would adore.  She would make and amazing big sister.  I know it's possible.  Anything is possible.  Plenty of women go on to have successful PPCM babies with no relapse.  The problem is there is no way to tell for sure if and when it will strike again.   I'm not sure for me it's a chance I'm willing to take.  But you never know :)

My Details

  • Date Diagnosed: 04/01/2011
  • Child: 1
  • Initial EF: 35-40%
  • Current EF: 55%

Story By Mimi Paules

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Woke up confused.

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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