Kymberly's PPCM Journey

My name is Kymberly and I am heart failure survivor. My husband and I were so excited to see the multiple positive tests I took in the spring of 2017. Everything was going great with my pregnancy and progressing without complications.  When I reached about 20 weeks in July, I began to swell.  "Another classic pregnancy symptom."  I shrugged it off.  The swelling would go down every evening when I propped my feet up.  But that August, at around 7 months, that stopped.  My shoes became too small and a kind coworker brought me her shoes with adjustable straps.  I struggled with shortness of breath as well.  It was to the point that, when filling up a bottle with water at my refrigerator, I would need to stop halfway through to catch my breath.  At this time, I was beginning to be slightly aware that my symptoms were more pronounced than most pregnant women's.  I googled the swelling along with the shortness of breath and saw that those two, coupled with palpitations (which I have always had) could be symptoms of a condition called, "Peripartum Cardiomyopathy - PPCM", a form of heart failure due to pregnancy.  I copied the name of the disease down to ask my doctor about, just to be safe. When I went to my doctor, Dr. L, I had gained 8 pounds since my appointment two weeks before.  I asked my doctors about the swelling and weight gain.  My doctor assured me that swelling was normal and that they weren't concerned about the weight unless I continued to gain at that rate.  Then I asked, somewhat cautiously, assuming my doctor would think it was outrageous if I was in heart failure.  He replied, "Don't be silly.  That is very rare." and laughed it off.  "Whew."  I immediately breathed a sigh of relief.  I might have felt ridiculous, but at least I knew everything was ok.

The swelling slowly got worse.  It began to move up my legs and by October, my knees were included in the swelling.  I couldn't bend them.  Stepping into the shower or crawling into bed was a tedious task.  1 month or so before my due date, the swelling had progressed to include my thighs and to the point that I could only wear house slippers.  I wore them everywhere, including work.  I still struggled with shortness of breath and did so from the middle of my pregnancy all the way through the end. I thought it was strange that it didn't go away once the baby had dropped.   Coworkers and family would react when they saw my legs and feet.  I was beginning to worry again about Peripartum Cardiomyopathy.  I decided I would ask the doctor at my next visit.  It would be a different doctor, Dr. W., and having a second opinion would give me peace of mind.  I went in around the end of October or beginning of November.  A little over a month before my due date.  I stood on the scale and I weighed 180 lbs.  The number struck me because I had gained more than 10 pounds in a week and I was now exactly 40 pounds heavier than my pre-pregnancy weight.  This was not normal.  Doctor W came in and I told him my symptoms and let him know that I was seriously concerned that I had Peripartum Cardiomyopathy and wanted to know what he thought.  He told me, very sternly, that "Peripartum Cardiomyopathy is incredibly rare and that people with that disease were in the hospital struggling to breathe."  He continued to tell me that he was concerned about the weight I had gained.  He began to tell me how I need to clean up my diet and stop drinking soda and eating things that end with "-itos" like Fritos and burritos.  I was flabbergasted.  He wasn't taking the weight gain seriously as a medical concern or even consider the swelling as the culprit.  He thought I had gained it from overeating and over-indulging, even when I insisted that I didn't eat like that.  I left feeling helpless, hurt, angry, and in tears.  I wasn't being listened to. 

One week later, my blood pressure spiked in the doctor's office and later that week I was diagnosed with pre-eclampsia, induced, and felt I finally had an answer for the swelling.  I had answers.  My little boy came and all was well with baby.  I was more swollen though.  I had fluid built up in my back and abdomen but was told that was normal.  While still in the mother/baby unit, I struggled getting in and out of bed and needed help getting in and out of the shower.  I remember noticing a weird crackling noise.  I realized it was coming from my lungs.  I told the nurses who gave me some apparatus to breathe into and said it was fluid because I was so swollen.  Nothing to worry about. 

I went home and was more exhausted than I ever thought a new mother would be.  That night I felt like I was drowning.  I couldn't get a sentence out without gasping every two or three words.  I called the doctor and they sent a diuretic.  This happened for two nights in a row.  The next morning, my husband and I went to a lactation consultation.  I was teary the whole time and it was a very emotional morning.  When the consultant left the room, I began weeping.   I had an intense sense of doom hanging over me like I have never experienced before.  Through tears, I told my husband I didn't think I'd be around to watch our son grow up.  I knew something terrible was wrong, and I was certain it was Peripartum Cardiomyopathy.  No one believed me, but when I spoke with Dr. L, my OBGYN, a few minutes later, he suggested I go to the ER for diagnostics just to be sure and to give me some peace of mind if nothing else.  That’s when I went to the ER.

There, after a few hours of testing, I was diagnosed with peripartum cardiomyopathy. I was in heart failure at the age of 31. I had an ejection fracture of 30-35% and the typical person averages 55% or above. Dr. L told me I was right and that I did a good job being a squeaky wheel and that it saved me.  I was admitted and they used diuretics and took 40 pounds of fluid off of me.  It was the most emotional and scary week of my life wondering if I'd be around to watch my new baby grow up and get married one day and have kids of his own.  Three months later, I found out my ejection fracture was at 50-55%.  I am nearly recovered!  I am so incredibly thankful to my God and I cherish every moment with my little family.  My message to you anyone reading my story is…be aware, listen to your body, and be your own advocate.