I was ready to be a mother for years before I actually got pregnant. I was so excited when I saw that I 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. Then two days later I was in the ER for a breathing treatment (I had previously been diagnosed with asthma) and they corroborated my story- I was pregnant.
In addition to feeling like I was on top of the world (quoted to good old Leo D.) physically I felt awesome; people say pregnant women glow and I was the sun. I had some normal pregnancy maladies- gained some weight, couldn’t stomach certain smells, and had the occasional nausea but still I hadn’t felt this healthy since I was 15 and for about 6 months I loved being pregnant.
Sometime around the end of April- beginning of May things started getting crazy. Not only in my life (I bought a house) but also my health. Even though I took 30-45 minute walks almost every day or every other day during the first 6 months of my pregnancy it started to become harder to walk even for 15 minutes; my muscles started to ache, I would get really winded, my heart would pound, I would feel nauseous, and I would get dizzy and off balance. Then I started to get winded from everyday activities such as doing laundry, walking up the stairs, even doing the dishes. I started to get heart palpitations, only once in awhile at first, then they started to increase in duration, frequency, and intensity. I remember one night lying in bed and for the first time in my life I was very aware of my heart beating because it was beating so hard. Then I felt it again in a few days, the again and again and again until these palpitations were occurring constantly. It felt as if a little person was standing inside my chest banging on my sternum -boom boom boom boom. I remember telling my husband “it feels as if my heart is going to pound right out of my chest.” 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. 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.
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 but again I was told that some women have significant swelling in their legs and feet during pregnancy. Then my chest started to feel like some invisible force was squeezing my lungs together and my entire chest hurt but I was told it was probably the baby pressing up on my diaphragm. Still, I couldn’t lie down flat because when I did it was so hard to breath I felt like I was drowning. I started to sleep propped up on pillows and then I had to sleep 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 with every breath but I was told it was my asthma and given breathing treatments. Eventually I developed ‘pregnancy related carpal tunnel syndrome’ because unbeknownst to me I had so much fluid build up in my body. I had gained 20 pounds in 2 weeks and still the dr. said with the fluid retention that might be normal. Throughout this ordeal I kept telling the doctors I just felt weird and they kept telling me everything was OK and they kept checking the baby and the baby was fine. So I continued on with (what I felt like was) an out of control heart.
At one particular doctor’s appointment- July 1, 2009 to be exact- my OB finally decided to send me to the ER. My pulse was finally (after three months of complaining) over 100 (albeit only a few beats over 100). He felt that I had some issues for long enough and something wasn’t quite right. 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- I was to be seen immediately and if the nurse triage at the ER 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 little 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. Something was bizarre. So I went to the ER and the nurse triage saw me immediately and took my pulse- 98- to which she responded- “well it isn’t that high it’s still considered normal.” (yes I can quote this) and with that she sent me……….to the waiting room. So I sat (and got angrier and angrier) for about 5 minutes then 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 ultra sound of my legs to see if I had a blood clot in any veins. They found nothing just a high heart rate (still right around 100) and some chest congestion (humidity in summer compounded with a baby pressing on my lungs was their explanation). 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 awhile. All was OK with the baby too so I was sent home. For one week nothing changed and for one week I still felt like I was drowning, my feet and ankles still looked water logged, and my chest still felt as Michael Flatley and 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. This is when the fun really began. I was induced at 11 AM July 8th. I was given oxygen because I was complaining of my breathing. My water broke around 8 PM. 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. I was so uncomfortable. Finally 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 3cm. I asked for an epidural around 1 PM but the epidural only worked on one half of my body. Around quarter of two I felt this incredible pressure and indeed I was dilated 10 cm. 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 and I 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 and I said no so they decided 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 post partum cardiomyopathy which meant I had 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 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 (Saturday) 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. And again my heart began to pound as if it were overworked and over tired. I was so fatigued and exhausted but I kept telling myself I just gave birth and all this was normal. By Sunday I could not walk without support. I remember going to the grocery store and walking down an aisle and 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 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 (he was scheduled for surgery on Monday); my husband wanted me to rest after the incident at the grocery store. I felt such desperation; I had to see Elijah, I had to hold him, I had to tell him I loved him and look at him and 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 demand 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 I 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. 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, a 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 look like they’re treating someone who has been shot in the chest and 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 I had the thought again: I will never see my son again because I am dying. Then panic. I asked the doctor if I was going to die and he said not on his watch (so 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 5 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 a rare condition called Peripartum Cardiomyopathy. PPCM is a form of dilated cardiomyopathy defined as a deterioration in heart function between the last two months of pregnancy up until five months post pregnancy. This condition does not discriminate and can be detrimental to a new mother’s physical, mental, and emotional well being. This condition does not care that you have a baby and that all you want to do is hold your baby and be a mother.
Update: In May 2012 I had open heart surgery to fix a defect in my mitral valve. In September 2012 I gave birth via Csection to boy/girl twins. I did relapse as my heart function fell to 35% but I did not have CHF. As of November 2012 my heart function was 50%. I expect to make a complete recovery.
My Details
- Date Diagnosed: 09/07/2009
- Child: 1
- Initial EF: 45
- Current EF: 50
Story By Leah Tomecek
