A new baby, a new life (the diagnosis, part two)

Photo: Heather Cisler

The ambulance ride to the heart center was mostly non-eventful except for when the driver nearly crashed us through a construction blockade, not realizing the road was closed. I had to ask the paramedic to turn off the heat and he said something about how they're used to transporting old people who are always freezing. I lost track of time. It was early morning by the time I was settled into the heart center. The nurses had to check me for bed sores...standard procedure for anyone checked into the heart center. "But I'm 28" I said. They weighed me. I didn't even look at the numbers. I was feeling pretty good now that most of the fluids were gone. I was lucky to have a room to myself. I waited. I was completely alone for the first time in 9 months. My milk had finally come in and I had no baby to feed. It hurt; everything hurt. I felt hopeless. I texted our friend, Missy, who I knew worked somewhere in the heart center as a nurse manager. I said something like "are you working today? I've been admitted to the heart center and I'm terrified." I still couldn't wrap my mind around what was happening to me. Angela went home to trade spots with my mom so she could be with me at the hospital and Angela could be with Harper. The nursing staff was awesome and kind. They told me that Harper could "room-in" with me while I was there and that they would bring everything I needed. They held my hand while I cried. A doctor with a thick accent came in and lectured me about not knowing I had a UTI. She says "your urine is duh-tee (dirty), did you not feel pain?" She must have missed the part where a baby just slashed her way out of my body and that everything was pain. I felt like a UTI was the least of my worries at this point. I wanted her to leave.

I finally had an echo. It seemed to last forever and I think the girl doing the test was being trained. I kept falling asleep and startling back awake, like in those dreams where you think you're falling. I nearly hit the girl doing the echo more than once. There was more waiting. Someone must have alerted my OB because she came over to see me. I can still remember the awful look on her face. I don't know if she was just worried for me or worried that she missed something, that she let me down somehow. She told me I "looked good" (I heard this a lot during my stay) and offered me an antidepressant. We waited. Another doctor came in. This doctor again said this is something rare and serious. He said 1/3 of women will get better, 1/3 will stay the same, and 1/3 will get worse. He said I can't have another child due to the probability of this getting worse.

Angela arrived with Harper. I couldn't even look at her without crying. I felt like I had failed. I brought this baby into the world and now I was dying. I spent the next four days in the hospital. Harper celebrated her one-week birthday just a few floors from where she was born. Nurses came in to see the baby and share horror stories about other PPCM moms they had seen, thinking that would give me comfort. One nurse said that when he heard he had a PPCM mom on the floor, he was afraid to even come in because these cases are so sad, that he can't handle seeing the moms in LifeVests. Yes, thank you. Please leave.

Harper's one week birthday, back in the hospital.

I did a lot of Googling and found a lot of scary things: 50% will die, eventual heart transplants, pace makers, 10 year life expectancy, sudden cardiac arrest. I tried to stop searching, but I needed answers. I needed to know why this was happening to me. I was 28 years old. I had a textbook pregnancy. I was healthy. I didn't find any answers. I found that there is very little known about this disease and barely any quality research. I kept asking the staff why no one had caught this when I delivered and my legs kept swelling up. They just told me that it's so rare that they wouldn't have caught it, that it's normal to have swelling. Even though I said it was too much, that it kept getting worse, that I couldn't walk. I realized I wasn't going to get any answers.

My feet, before and after.

I was sent home with a large, white packet with only the words "Heart Failure" printed across the front. They told me to watch my fluid and sodium intake and weigh myself daily.  They said to follow-up with the cardiologist in about four weeks. I remember sitting on the couch in the hospital room next to the discharge nurse as she went through these documents with me. Until this point, no one had called it "heart failure" and I felt completely rattled seeing the words printed out like that. I remember thinking to myself, "what is she talking about? I don't have heart failure. This isn't right." But it was. Just over a week prior to this, I was discharging with my new baby. Today, I was discharging with heart failure...and a new baby. One of the things it says to do in this handy handbook is to "get at least 8 hours of sleep at night". Right. I guess that's one of the most cruel things about this disease is that as a new mom, you need to take care of yourself, but then you also have this tiny baby that is depending on you for everything. You feel guilty "taking care of yourself", because your baby is supposed to come first. You've been planning and dreaming about this little human for the last 9 months, making every decision with them in mind, and now you are failing. You read all the books on sleep techniques, swaddles, feeding patterns; you've got your wet/dirty diaper journal. But now, you're too exhausted to carry your baby to the nursery to change her diaper. Your heart starts pounding and racing every time you have to pick your crying baby up in the night. You feel like you're killing yourself with every hour of missed sleep. More times than I can count, I said to myself and Angela "I can't do this". Your partner also doesn't know what to do- they didn't sign up for this. You were supposed to be a team. Now they have to care for this helpless newborn and their sick, often helpless, partner.

At first, I found the low sodium diet to be completely unmanageable. They want you to have 2,000mg or less of sodium. Have you ever looked at the sodium content on your food labels? You should. Total them up for a day and see what you come up with. Before Harper was born, we stocked the freezer and cupboards with easy to cook dinners. I remember coming home after discharge and opening the cupboards, feeling completely lost. I couldn't eat anything I wanted to eat anymore. I ate a lot of cereal and low-sodium peanut butter and jelly sandwiches. Food has always been such a comfort to me and now, when I needed that comfort more than ever, it was gone.

Sodium content for 3 Mrs. T's Pierogies

I have since learned that a lot of the "statistics" I found online about PPCM are misguided and outdated. The survival rate has only been increasing with early detection and treatment, although younger women still tend to have more negative outcomes than older women. The issue is that a lot of medical professionals are still unfamiliar with this condition.  I've heard too many horror stories of women being sent home from the ER with symptoms of PPCM, having been told they just have anxiety, bronchitis, pneumonia, that they're "too young" to have a heart problem, etc. They are sent home to just get worse and worse. I was lucky enough to have a doctor in the ER that night who knew what was going on, or was at least able to diagnose me and get me the treatment I needed right away. I went back and checked all the pregnancy books that I read before delivery for any indication of PPCM, but didn't find any. The closest thing I found was a mention of "heart disease" and that if you have a history of heart disease or murmur, you should talk to your doctor before becoming pregnant. But never was there an indication that pregnancy could cause heart disease. If there was, I probably wouldn't have read it. Everyone knows that terrible things could happen during pregnancy/labor, but no one ever thinks it will happen to them. I still find it pretty hard to believe and keep hoping I'll wake up from this nightmare, but for now, it's enough to just wake up.