A huge thank you to Leah T from Allentown, PA for sharing this personal and amazing story with us. Peripartum Cardiomyopathy is a condition I had no idea existed, but is quite obviously serious if you are afflicted. Please share with anyone who shows the symptoms and push your doctor to test you if you believe you are suffering from this.
I was ready to be a mother for years before I actually got pregnant. I was so excited when I saw that barely-there faint pink line next to the bright eye popping neon pink line women either love or hate to see telling them they are not pregnant. Before I started reporting the news I took two more tests to be absolutely sure; after all, I’m known to jump the gun and get all excited over nothing so I needed some reassurance. Two days later, while getting my asthma treatment at the hospital, they confirmed what the tests told me – I was pregnant. In addition to feeling like I was on top of the world physically, I also felt mentally amazing. People say pregnant women glow, and if that’s the case, I was the sun. I had some normal pregnancy maladies – I gained some weight, couldn’t stomach certain smells, and had the occasional nausea – but I hadn’t felt this healthy since I was 15 and for the first 6 months I loved being pregnant. But then it all changed.
Sometime around the end of April or beginning of May things started getting crazy. Even though I took 30-45 minute walks almost every day or every other day during the first 6 months of my pregnancy, suddenly it became harder to walk for even 15 minutes; my muscles started to ache, I would get winded, my heart would pound, I would feel nauseous, and I would get dizzy and off balance. A short time later, I started to get winded from everyday activities such as doing laundry, walking up the stairs, or even doing the dishes. Then I started to get heart palpitations; they started infrequently, but began to increase in duration, frequency, and intensity. I remember lying in bed one night and for the first time in my life I was very aware of my heart beating because it was beating so hard. It stopped and there was nothing for a few days, but then it began again and soon these palpitations were occurring constantly. It felt as if a little person was standing inside my chest banging on my sternum. I remember telling my husband it feels as if my heart is going to pound right out of my chest. I remember one night my heart was beating so hard I put a bottle of eye drops on my chest and the vibrations from my heart beat knocked it over. I told my doctor on numerous occasions but every time they took my pulse it was always like 98 or 99 and anything under 100 is considered normal so he’d send me home.
In addition to my heart, my feet and ankles and calves became so swollen you could press your thumb into one of those areas and leave an indentation that took over 10 minutes to disappear. Again I went to the doctor, but again I was told it was “normal” and that some women have significant swelling in their legs and feet during pregnancy. Soon my chest started to feel like some invisible force was squeezing my lungs together until my entire chest hurt, but I was told it was probably the baby pressing up on my diaphragm. I couldn’t lie down flat because when I did it was so hard to breathe I felt like I was drowning. I started to sleep propped up on pillows, but soon that didn’t work, and I found myself sleeping sitting Indian style with my head propped up on 5 pillows. When I inhaled it sounded as if someone was chewing pop rocks – my lungs crackled like a burning candle, but was told this particular symptom was my asthma and was given more breathing treatments. Eventually I developed ‘pregnancy related carpal tunnel syndrome’ because I had so much fluid built-up in my body. I had gained 20 pounds in 2 weeks and still the doctor said it was probably fluid retention that could be normal. So despite a plethora of symptoms and my own feelings that this was certainly not normal, the doctors kept telling me everything was okay, and my baby was fine. So I continued on with (what I felt like was) an out of control heart.
Finally, on July 1, 2009, my OB decided to send me to the ER. After three months of complaining, my pulse had finally gone over 100 (albeit by only a few beats, but it was enough). He felt that I had problems for long enough and something wasn’t quite right, something I’d been saying all along. The nurse practitioner called the ER and told them I was coming there and told them I was to be seen immediately. Both the nurse and my OB instructed me that I was not to wait at all and I was to be seen immediately; if the triage nurse told me to sit in the waiting room, I was to call the OB’s office and let them know. Needless to say I was a nervous because now, after 3 months of complaining and everyone telling me this was normal, my OB was now telling me to refuse to wait in the ER and demand to be seen immediately. If this had been normal all along, how did it change so quickly? But off I went to the ER and the triage nurse saw me immediately and took my pulse – 98 – to which she responded, “Well it isn’t that high; it’s still considered normal.” With that she sent me… to the waiting room. So I sat (getting angrier and angrier) for about 5 minutes when I whipped out my phone and called my OB. One minute later I was called into the ER and seen by a doctor. I was given an EKG and had a CBC, they listened to my heart and my lungs, and they did an ultrasound of my legs to see if I had a blood clot in any veins. They found nothing except a high heart rate (still right around 100) and some chest congestion which they explained away saying it was the humidity in the summer compounded with a baby pressing on my lungs. One of the OB’s I saw previously during my pregnancy came to the ER from the birthing unit (located upstairs in the same hospital) to read over my tests and just check on me. He felt the baby and had me transported up to the birthing unit to monitor the baby for a while. My baby was okay, so I was sent home. For one week nothing changed. It still felt like I was drowning, my feet and ankles still looked water logged, and my chest still felt as if a group of miniature people were performing the River Dance behind my sternum.
I had a scheduled appointment with my OB on July 8, 2009 and at that point the OB decided to induce me. I was induced at 11 am on July 8th, but my water didn’t break until 8pm. I was given oxygen because I was complaining of my breathing. Overnight, labor pains started to intensify and my chest continued to feel as if it was being squeezed in a vice. I wasn’t allowed to walk around or get in the bath tub. Around noon the next day things started to move faster and get much more painful. Up until this point I was only dilated 1 cm then around noon I was dilated 3 cm. I asked for an epidural around 1 PM but the epidural only worked on one half of my body. Around 1:45pm I felt this incredible pressure and indeed I was fully dilated. The doctors came in and had me push so I did as I practiced in child birth class. As soon as I started to push it felt as if my chest was caving in. I simply couldn’t breathe. I stopped pushing and lurched up gasping for air. Nurses and doctors were running into the room and I told them I couldn’t breathe. One of the OB’s asked me if I thought I could push again. I said no so they opted for a c-section. At 2:14 pm my son Elijah was born. At 2:20 pm I was given general anesthesia to sleep. Around 4 pm I woke up and a woman was giving me an echocardiogram. I asked her what was going on and she told me they were taking pictures of my heart – doing an ultrasound of my heart. Around 5 pm I was transferred to the step down unit in the ICU. My son was a few floors above me in the birthing unit. I was told I had postpartum cardiomyopathy, otherwise known as heart failure related to pregnancy. I was told that a few months on medicine would reverse it and I would be fine. I was given medicine, the swelling in my feet went down, my chest felt relief, and I could take in full breaths of air. I finally felt as though I was ready to be a mom, but it still wasn’t in my cards.
My son was medevaced to Hershey Medical Center for a life threatening birth defect the day after he was born. The day after that I was released and left Allentown to go to Hershey to be with my 2 day old son. Within hours of getting to Hershey my condition started to take a turn. I began to feel the drowning sensation, the popping and crackling in my lungs, and the squeezing in my chest, despite being on medication that was supposed to help. And again my heart began to pound as if it were overworked and overtired. I felt overly exhausted, but I kept telling myself I just gave birth and all this was normal. The next day, I couldn’t walk without support. I remember going to the grocery store and walking down an aisle thinking to myself that I might be having a heart attack. I was leaning on the cart for support because I could barely stand up straight but I kept telling my husband it was just the pains from the c-section – we had enough to worry about with Elijah being in the hospital. We needed milk and the dairy aisle was 4 aisles away. I started to walk toward it and just stopped. I couldn’t do it so my husband went and got the rest of the groceries.
Later that afternoon I wanted to go visit my son in the NICU as he was scheduled for surgery the next day. My husband wanted me to rest after the incident at the grocery store. I felt desperate though – I had to see Elijah. I had to hold him, I had to tell him I loved him, I had to look at him, and I had to talk to him. I had to do these things because deep down in my heart I knew I was dying. I started to cry and demanded that my husband take me to see Elijah. In the NICU I could barely hold him I was in so much pain. We only stayed an hour and I had to leave to rest. We went back to the Ronald McDonald house where we were staying. Rob went to the store and I called my mom. I explained how I was feeling and my mom told me that it was probably all that I went through; after all I just had a c-section and I just found out I was in congestive heart failure for the past 2 months. I agreed with my mom and I said I just thought I’d feel a little better and instead it felt like I was dying. My mom, who is not an alarmist in any way, told me to go to the ER. Rob took me to the ER at Hershey Medical Center and I was seen within a half a minute of giving my name and reason for visit. I was put in a room and within a minute there were numerous doctors and nurses in my room, one taking blood, another giving me lasix, and another doctor giving me an echocardiogram. I remember sitting on the hospital bed, sweating, struggling to take deep breaths, feeling the pounding in my chest, watching these doctors and nurses run around hooking me up to machines, giving me IV’s, and I thought they looked like they’re treating someone who has been shot in the chest. I remember having one single thought: I might not ever see Elijah again. And then in an instant it seemed everything was in slow motion except for my heart and my brain: I will never see my son again because I am dying. Then panic set in. I asked the doctor if I was going to die and he said not on his watch; I asked him when his shift was over because it sure felt as if I was going to die. He told me I wasn’t going to die, even though he was sure I felt like I was, but he needed permission to put a breathing tube in me if I stopped breathing. I gave him permission, although that question certainly didn’t help my anxiety. Over the next hour the doctors at Penn State Hershey Medical Center worked diligently to help me feel less distressed both physically and mentally. With their efforts I could finally take a deep breath, for the first time in 3 months. I spent the next few days five floors below the NICU where my son was being treated. I visited him twice a day for about half an hour because that’s all I could physically handle. I could not lay with my new baby, cuddle him for hours, hold, hug, and kiss him because my heart was giving up.
I was diagnosed with Peripartum Cardiomyopathy, a form of dilated cardiomyopathy defined as deterioration in heart function between the last two months of pregnancy up until five months post pregnancy. In PPCM the heart becomes weak (more specifically the left ventricle becomes weak), does not work efficiently, and leads to congestive heart failure, arrhythmias, thromboembolic events, and even sudden cardiac death. In the United Stated PPCM affects every 1 in 2,000-4,000 births. While in the hospital the doctors found a severe leak in my mitral valve which has since been repaired. It’s been two years and I am happy to report I am considered fully recovered; however I might be on medication the rest of my life.
For eight months I read about pregnancy, I went to a birthing class, I talked to many mothers, and not once did I hear of PPCM. None of the doctors even suggested something might be wrong with my heart, not because they are poor doctors, but because it is such a rare condition. This condition has deeply affected me, but I am alive. Now I am a mommy to an awesome 2 year old boy. I am also an advocate of PPCM awareness. I want to make sure there is a 100% survival rate of PPCM so please make sure you get tested if you experience any of the symptoms I had. Talk to your doctor about PPCM if you’re constantly told everything is “normal”. I survived, some have not, but we can change that together.
If you would like more information including, but not limited to, a list of symptoms to look for, please see http://www.ppcmdrfett.com. If you suffer from peripartum cardiomyopathy or know someone who does, you can go to http://www.amothersheart.org, a foundation and support network.