It’s been one year since my experience with peripartum cardiomyopathy, and in that one year, I’ve realized several things.
I should have been more assertive. I should have been that patient that raises hell. I should have called my mom.
But let’s go back.
Everything with my pregnancy was going spectacular. Yeah, I couldn’t sleep, but who can while pregnant? While my belly was big, I had only gained about ten pounds. My blood pressure was good. My cravings were fruit and milkshakes, fairly innocuous and also delicious.
All that changed when I went to my 34-week appointment. On of the doctors in the practice came in and said that she wanted me to lay down on my left side for a while, because my blood pressure was 160/102. I did, and it went down to 140/88 in the next couple minutes. Just in case, she wanted me to go to L&D to get some labs to make sure I didn’t have pre-eclampsia.
The blood pressure went up again once I got the hospital (170-something/something), probably in part due to the fact that they were asking me questions like, “So I don’t think they’ll induce you tonight, but do you have a car seat just in case?” But, it dropped. Urine good. Blood panel good. Liver enzymes good. Perhaps this was a freak occurrence.
It wasn’t.
Over the next six weeks, I went to the doctors nearly twice a week for regular appointments and blood pressure checks. 136/90, 142/96, 126/82, 138/80, 183/121, 150/90, 170/110, 180/120. These are the blood pressures I recorded in texts between myself and my husband and parents. Twice I took myself to L&D. Each time, I was sent home as soon as the pressure went down and blood panels came back clear. The others were taken during my doctor’s appointments. I got very familiar with “Lay down on your left side, and we’ll see if this goes down.” At no time did anyone mention blood pressure medication. At no point did anyone mention inducing early, or even just inducing on my due date. At no point did anyone note that I gained five pounds in one week, when previous to this, I had only gained thirteen pounds over the entirety of my pregnancy. I should have been more assertive.
Rory was eleven days late. She arrived via C-section. She was perfect.
Two nights later, my last night at the hospital, I sent my husband home to be with our dog and get his last good night of sleep. I sent Rory to sleep in the nursery, and unknowingly, prepared for one of the worst nights of my life. It started with a cough. A really bad cough. A deep, from the bottom of my lungs cough. Then came a pressure in my chest. When I tried to lay down, it felt like there was a giant bowling ball sitting on my chest. I could. not. get a deep breath. And the coughing! Between the two, I couldn’t really breathe.
I tried every position. I tried every location in the room. I was not going to sleep. Soon, that was the least of my worries. I was getting scared, because breathing is, ya know, essential.
My nurse came in to get me to nurse Rory. I told her something was wrong, I couldn’t breathe right. She gave me Rory and said she was sorry I was getting a cold.
You know what you don’t want on your chest when you can’t breathe? An eight-pound, three-day old baby.
But I tried to nurse her. When the nurse came back in, she took Rory and I said, no seriously, this cough is really bad. She said she’d tried to get me some Robitussin.
While she was gone, I did what any modern woman would do. I googled it. You know what comes up when you google “postpartum shortness of breath”? Yep, peripartum cardiomyopathy.
When she came back in with my Robitussin (and tea!), I showed her my results. She ignored them and left. Side note: Robitussin and tea really do not cure heart failure. I should have been that patient that raises hell.
At this point, I was really scared and also feeling stupid at the same time. Up until this point, I really trusted medical professionals. My mom is a nurse, my husband was a clinical technician. I come from a nursing family. So, if she said I had a cold, I probably had a cold. But I couldn’t ignore my gut feeling that I needed to see my husband, because I wasn’t going to make it through the night.
I called him. The phone didn’t wake him up. He still feels awful about that to this day.
I should have called my mom next. It wouldn’t have been quite Terms of Endearment. But she would have got. shit. done.
Instead I waited it out til morning. Once I gave up on sleep and sat up for a few hours, I started to feel better. I ignored that nagging voice in the back of my head that said that the article I read about peripartum cardiomyopathy said people felt worse at night when they tried to lay down.
We took Rory home that morning.
I was surprised how much the C-section was kicking my ass. I could only take two laps around the living room with her before needing to sit down. I had to pause at the top of the steps and take a breather before getting something from her nursery.
The cough started again in the early evening.
It continued all night. I tried Robitussin. (Still doesn’t cure heart failure.) At two in the morning, my husband had finally fallen asleep on the couch, when Rory was fussy again. I couldn’t sleep anyway because of the damn cough, so I decided to take her upstairs to her nursery and rock her in her rocking chair. The bone deep, rattling cough woke my husband as I started up the steps. Part way up, I felt something wet come up the back of my throat.
At the top, I took a few steps to bathroom and spit out blood into the sink.
I very weakly called down to Ryan, and things moved quickly from there. He saw the blood, took Rory, and pushed me into the rocking chair. He put her in the crib and told me not to get up, even if she cried. He ran around the house, looking for a phone and his pulse-ox while I coughed violently into tissues, soaking a couple dozen with blood.
The pulse-ox read that my pulse was in the 140s and my oxygen level was in the 80s.
The ambulance took me away just a few minutes after my parents arrived to take care of Rory. I’ll never forget the look on my mom’s face.
We went to Sewickley, the hospital I delivered at. After weakly trying to get out the bed with about a dozens wires and tubes coming off of me to get to a bedside toilet to pee with two minutes of the Lasix, I was never more thankful for a catheter. Doctors determined that I needed an echocardiogram like NOW, and I was not going to be able to get one at Sewickley at three AM on a Saturday night. So, I was back in the ambulance being transferred to Magee Women’s Hospital to see their specialty doctors.
At this point, things get a little blurry. At one point, I fell asleep in the middle of talking to a specialist. (Mind you, I had been up for nearly 48 hours straight at this point, and just had like a gallon of fluid drained out of me.) She asked questions that, perhaps, you too are asking. Your blood pressure was how high and they didn’t do anything? You gained how much weight in such a short period of time and they did nothing? You told them you couldn’t breathe and they gave you tea!?
Questions asked and answered, and she told me that she had a tentative diagnosis of peripartum cardiomyopathy. The diagnosis became definite when they echocardiogram came back that my ejection fraction was 35.
I spent five days in Magee. I was poked and prodded by teams (TEAMS!) of cardiologist and maternal fetal medicine doctors. As you all know, PPCM isn’t something you see every day, so I was a good teaching case, which meant 15-20 people in my room at any given time. I can’t remember how many times I was told that my C-section looked amazing. I had no clue who my official doctor was. Honestly, I didn’t even care. Being taken from my daughter while she was only four days old hit me hard emotionally. I cried a lot. I was afraid she’d forget me. I was a mess.
And it was only just the beginning.
I went home. Ryan doted over me furiously. I slept a lot. I still looked like hell, but I was starting to feel a little better. Less than forty-eight hours later, I was even going to my friend’s baby shower in my pre-maternity clothes! Well, that is, I was going until I sneezed. Remember all that coughing I did? Remember how amazing my C-section looked? It’s all coming back here.
I need sound effects to truly describe this, but I’ll try. I sneezed and felt a pop, then an unzipping sensation across my lower abdomen. In my bra and underwear, horrified, I pulled up my fabulous postpartum belly-shelf to see my C-section incision. Instead of stitches, I saw stomach fat. My entire incision had ripped open, and now my insides weren’t inside anymore.
Stunned, truly and honestly in shock, I called down to Ryan, who came upstairs anticipating a water leak. He was sort of right.
Parents called, dog put in the back yard, we waited. He told me to get dressed. HOW? I asked. Something tight and stretchy. Hello, maternity leggings! I hobbled down the stairs and waited leaning against the couch, hoping I wasn’t going to puke. It didn’t hurt yet, but it would. Oh, it would.
My dad didn’t want to see. My mom, being a nurse, did. This is how I knew it was bad. My mother, the nurse, lost all professional cool. She yelled, she gasped, she turned away. It would have been a little hilarious if the pain hadn’t been starting. Between the only time I looked at it and then, there was more stomach fat and a little intestines out, and there was bleeding.
They helped me hobble out to my husband’s truck, and I climbed in (!!!). We drove down the bumpy (!!!), construction-ridded (!!!) road that took me to Sewickley again. I hobbled down out of the truck (!!!) and got into a wheelchair.
To add insult to injury, while I patiently waited my turn in the waiting room, a 20-ish-year-old bro came in because he had a scratch on his arm, yelling loudly on the phone about being a doctor’s son and how he needed to be seen. They took him first. Before he went in, I wanted to pull down my pants and show him need-to-be-seen.
I was quite the sideshow in the emergency room. Half the people used to work with my husband, so they came to visit (while I looked my very best!) C-section evisceration is really rare, too, so some fellows wanted to come see it. One of my OBGYNs came down and ended up talking about dogs. I was entirely used to the poking and prodding by now and just waited desperately for the morphine to kick in.
That surgery would have kept me in the hospital only one day if it hadn’t been for my heart issues. I ended up there for three days, again sobbing over missing my little girl. The pain was worse, too. They really went to town making sure that C-section didn’t open up again. I couldn’t sit down to pee without shaking from pain for weeks. While I was there, I had chest heaviness at night again and the monitor showed non-sustained ventricular tachycardia (thanks for the lingo, mom), which led them to a second echo. My EF was at 30, and I was recommended to wear a life-vest in case I went into cardiac arrest. Thankfully, that was deemed a little too aggressive after only a week.
That’s about the end of my story. We did the math. The chances of both peripartum cardiomyopathy and a C-section evisceration is about 1 in 14 million. (I feel so special!) I can’t have anymore children, which will probably make me sad some day, but not today. I am on very aggressive doses of Coreg and Lisinopril. Even so, a year later, my EF is only back to 45.
So I leave you with the same advice I started with.
Be assertive. Be that patient that raises hell. And, if you can, call your mom.
My Details
- Date Diagnosed: 28/05/2016
- Child: 1
- Initial EF: 35
- Current EF: 45
Story By Blaire Lasko
