It’s such a blur, yet it feels like yesterday, that week after delivery. On Sunday I came home with the most beautiful newborns I had ever seen. I was completely smitten, especially with one precious observant boy who was my partner in beating the nursing learning curve. His sister I had yet to really get to know as she had spent half of the last 3 days in the NICU developing a regular breathing pattern. But there we were, three survivors of a relatively uneventful twin pregnancy. Well 4 survivors really, because we all know how much husbands have to deal with during pregnancy.
I felt extremely grateful. I made it to 36 weeks 3 days almost easily, until around 32 weeks when I developed pregnancy induced hypertension. Medication seemed to do the trick for a few weeks, and weekly 24 hour urine collection lacked the amount of protein necessary to be alarming for pre-ecclampsia. That is until 36 weeks 2 days, what we thought would be my last doctors appointment as our c-section was scheduled for the following week. The babies sailed through a fetal non-stress test, but the protein and blood pressure were starting to become more alarming. “Well,” my doctor said as he rolled up by my side, “I think we should do this tomorrow. I really don’t want anything to happen over the weekend when I’m out of town. I wish I had a crystal ball to tell you the babies will be fine tomorrow. I can’t even tell you they would have been fine next Tuesday. But I think we should do this tomorrow. ” “Tomorrow?” I squeaked. “But we have my husband’s green card interview tomorrow.” We had been crossing off days and praying that I would just make it until after June 12th, when he and I both had to appear at the Houston immigration office for our long awaited (and date we had no control over) appointment.
But that’s really beside the point. Back to coming home. We arrived home after driving 5 miles an hour the entire 4.7 mile drive home. I gingerly got out of the car and my husband brought our two brand new precious bundles inside. I don’t remember exactly what we did that afternoon and evening, other than a precious little boy who slept on a Boppy while we ate dinner (no clue what it was), and that the first night home was the most horrible night I had ever experienced and I didn’t know how I would survive the next few months of my life (thankfully it got better after the first night). My parents arrived the next day, and that’s a blur too. At some point on Tuesday, I remember starting to feel winded when I walked places in the house. I had my follow-up doctor’s appointment that afternoon, and I distinctly recall telling my mom to use the valet parking at the doctor’s office because there was no way I could walk all the way from the parking garage. Never once, in all 9 months of pregnancy, had I needed to take advantage of the free valet service. But this day, I did. I brushed it off though– I was recovering from major surgery, and running on very very little sleep, so of course I felt winded. In fact, I’m not sure I even mentioned it to my doctor. He did note that I was still really swollen, just like I had been my last few months of pregnancy, and told me to call if it worsened. But again, what do you expect?
The next day continued along the same lines. I noticed that I was having trouble breathing while laying flat in our bed, but not being able to sleep in our bed was not a new occurrence– I hadn’t been able to sleep in our bed since around month 6 of pregnancy because of such bad heartburn. I started coughing a little. But it was summer in Houston and I have horrible allergies, so it was “normal”.
On Thursday, my babies’ one week birthday, it was more of the same, but suddenly it was difficult to walk from the living room to the bathroom. The coughing worsened and wasn’t helped by the allergy medicine I’d had my dad purchase. There was so much pressure on my chest. So I did what any smart girl would do, and I texted my best friend, who also happens to be a doctor. She had kindly come and taken my blood pressure for me every single day for the last few weeks of pregnancy. She’s my person. And she also saves lives. Double win. I recall the text said something like this, “Hey, I’m having trouble breathing. Do you think it’s because 1. I just had a c-section, 2. My blood pressure is still high, or 3. My boobs are so stinking huge?” (because ooooh, the engorgement!). She replied back along the lines of, “Probably related to 1 and 2, but small chance it could be something worse. I’ll come by and check you after work.”
She got home around 4, but had remembered she had a dinner to go to that evening and told me she could still check me, but I had to come to her. My husband was at work and my dad was off playing disc golf, so I got in the car as my mom loaded the babies up in their carseats. By the time she finished I looked at her and said, “We need to go to the E.R.” My breathing had become extremely, extremely labored. As in, I kind of couldn’t breathe, gasping for each and every breath. I texted my best friend to tell her we were on our way to the E.R. As I thought it was related to the c-section, we went back to the hospital where I had delivered, a hospital that specializes in pregnancy and delivery, but only has a teeny tiny E.R. I literally gasped out directions to the hospital to my mom, who is not from Houston and is terrified to drive on the highways there. We pulled up in the circle drive in front of the E.R. and she jumped out and told them I was there. It took them so long to bring a wheelchair that I hobbled inside on my own, gasping for air. This is where it gets fuzzy. I know I got to a room. I’m pretty sure in a wheelchair. I know my mom parked the car and then pushed my newborn twins into the room in their stroller. Somehow I got into a hospital gown and started being monitored. Every breath was a struggle. A doctor came in quickly. He looked like he belonged in a veterinarian’s office rather than an emergency room, but God bless that doctor, he knew immediately what was happening to me. I had an oxygen mask on, and people kept telling me that they knew it didn’t feel like it, but my O2 sats were good. I DID NOT care because I FELT LIKE I couldn’t BREATHE. I remember praying that God would just let me FEEL like I could breath. People came in and out. At some point they did an EKG in the room. Then they did an echocardiogram. My dad showed up. My husband showed up. My best friend showed up. My babies left the room. A catheter was inserted. Medication was administered via an IV. I started peeing without end.
All of this lasted about 2 hours. It took that long before I felt as if I could breathe again. I don’t remember much, but I do remember knowing that I could breathe again. They weighed me when I first got to the E.R., and they weighed me again as I was transferred to the ICU. I had lost 8 pounds in 2 hours.
Again it gets fuzzy, but here’s what I know they told me: your lungs were 2/3 of the way full of fluid. You had pulmonary edema. You need to stay. Tomorrow you’ll see a pulmonologist and a cardiologist.
The next morning a brash looking woman walked into my room. She sat down. My husband had already left for work, so it was just her and me in the room. She looked at me and said, “You have something called Peripartum Cardiomyopathy. It’s basically pregnancy induced heart failure. We don’t know what causes it or why you got it. What we DO know is that you shouldn’t have another pregnancy. And you shouldn’t nurse these babies. Some people cry when I tell them this.” I was alone, one week post delivery, and angry. How could she tell me this? And how did I know her recommendations are correct?
I spent a week in the ICU. Nursing is another story for another post, but needless to say, I kept pumping and dumping. And we aren’t here to belittle the kind of care I received, so I’ll just move on.
Here’s what I learned as I found out more about my condition and as I researched what it was and what it meant:
- A normal heart has an ejection fracture of 60. This means that every time your heart beats, it pumps out 60% of the blood volume.
- You are considered in heart failure if your EF is below 40.
- Mine was 34.
- It is not recommended to have another pregnancy, because there is about a 20% chance of relapse. (As I’ve researched more, fully recovered women have a reduced chance of somewhere between 10-20%).
- Not being able to breastfeed is outdated advice.
- About 50% of women recover within 6 months of discharge. The others need implanted heart monitoring/defibrillators or transplants. Or they just live an altered life.
- If your EF is less than 35, you are recommended to go home on a Life Vest, which I did. This is a wearable defibrillator that was constantly monitoring my heart rate, and would have shocked me had my heart stopped beating.
So here’s the good part of my story. I continued to pump and dump. 10 days after I was discharged, I saw another doctor. She had me get another echo. She changed my meds to another one in the same class that it was safe to nurse on. I saw her again 5 days later. My EF was already back up to 49.5, which is considered low normal. (55+ is normal, 60 is a completely healthy person normal) I took off that Life Vest and mailed that sucker back the next day. And I rejoiced. And I was grateful. Grateful to live a normal life. Grateful to have two beautiful babies. Grateful to be saved.
Epilogue: At my last check-up, 9 months post discharge, my EF was back up to 60+, as in completely completely normal. While we are actively preventing a future pregnancy, I’m still not ready to do anything permanent. There are so many success stories. But I also have two beautiful children. My best friend likes to take the moral high ground and tell me, “Every time you think about getting pregnant again, remember what it felt like when you were gasping for breath. Because that’s how people with heart failure die.” What can I say, she loves me.
If you ever plan on getting pregnant you should know that PPCM is a real thing. You should know the warning signs. You SHOULD bring them up with your doctor, and not allow them to be brushed off as “normal”. PPCM occurs within the last month of pregnancy up to the 5th month postpartum. Know better, do better. Spread the word.
|Focused medical history for PPCM screening, looking for early symptoms of heart failure, during last month of pregnancy:|
|1. Orthopnea (difficulty breathing while lying flat):|
|a.) None = 0 points; b.) Need to elevate head = 1 point; c.) Need to elevate upper body 45° or more = 2 points|
|2. Dyspnea (shortness of breath on exertion):|
|a.) None = 0 points; b.) Climbing 8 or more steps = 1 point; c.) Walking on level = 2 points|
|3. Unexplained cough:|
|a.) None = 0 points; b.) Night-time = 1 point; c.) Day and night = 2 points|
|4. Swelling (pitting edema) lower extremities:|
|a.) None = 0 points; b.) Below knee = 1 point; c.) Above and below knee and/or hands/face = 2 points.|
|5. Excessive weight gain during last month of pregnancy:|
|a.) Under 2 pounds per week = 0 points; b.) 2 to 4 pounds per week = 1 point; c.) over 4 pounds per week = 2 points.|
|6. Palpitations (sensation of irregular heart beats):|
|a.) None = 0 points; b.) When lying down at night = 1 point; c.) Day and night, any position = 2 points|
|Scoring and Action:|
|0 – 2 = low risk—continue observation|
|3 – 4 = mild risk—consider doing blood BNP and CRP; echocardiogram if BNP and CRP are elevated|
|5 or more = high risk—do blood BNP, CRP, and echocardiogram|
By the time I went to the E.R., I was a 9.
This screening tool was created by Dr. James Fett, MD, a leader in the study of PPCM.