My name is Holly Borrelle and I am a 33-year-old Peripartum Cardiomyopathy survivor. I am only recently diagnosed in October 2011. Prior to my diagnosis I had never heard of PPCM and, looking back, I believe I had the “classic” symptoms as early as 32 weeks into my pregnancy but they were dismissed and chalked up as “normal” pregnancy symptoms. Here’s my story with PPCM:
I gave birth to my first, and now possibly only, child, Michael, on October 5th, 2011 via C-section when I was 32 years old. I had always been pretty healthy albeit hypothyroidism and I had NEVER had any blood pressure or hearth problems. My pregnancy was wonderful with little to no complications up until the last month or so when things started to get really uncomfortable. My feet started to swell really bad during the last 6-8 weeks of my pregnancy. During several visits to my OB I complained about this swelling and every time, they dismissed me by saying things like, “You’re pregnant, its summer; it’s all normal”. I even called the on-call OB one time at my family’s urging because they all felt like my swelling was NOT normal and they had never seen anything like it and I was told to “put my feet up” and “take it easy”. I remember at one OB check up where I gained 10 lbs. from one-week prior! I was so embarrassed and shocked that I put on so much weight in a week’s time! On top of the swelling in my feet and calves and the rapid weight gain that continued for the last month of my pregnancy, my blood pressure was slowly going up. Even when I commented that my blood pressure number was high for me, the nurse commented, “Its not that high. I’ve seen higher.” During two visits, they even made me lay down on my left side for a while and then rechecked my BP. Since, after lying on my side, my BP had gone down, they did not seem concerned. I remember leaving my OB office in tears on a couple occasions because my OB made me feel like I was overreacting about how I was feeling. I remember telling her that the swelling was now moving up to my calves and she barely glanced down at my feet. She never even checked how much “pitting” I had (I found out about the pitting scale from the nurse at the school I work at who told me one day that I should call my OB and tell her I had +3 pitting”). They made me feel emotionally horrible more so than I already felt physically. I guess I felt like I wasn’t being heard and I just didn’t feel “normal”. Little did I know, my heart was probably going into failure at that point.
To top all this off, as I stated, the swelling was in my calves, fingers, and face. At night the swelling in my hands was so bad that I couldn’t bend my fingers and my entire hand and arm was numb and tingly. My OB told me that I was just suffering from “pregnancy-induced carpal tunnel” and recommended wearing a hand brace, which I reluctantly started wearing. I remember getting up to use the bathroom during the night (which was about every hour on the hour) and I couldn’t even bend my fingers around the doorknob to open the door. I would cry in pain as I tried to open my bedroom door; it was awful! I never had any breathing concerns that I can recall while pregnant (maybe I didn’t notice since you’re not supposed to sleep flat on your back when you’re pregnancy) except for maybe getting winded walking around, but I was pregnant so I figured that was normal too!
I am a School Counselor in Philadelphia so I had the entire summer off, (thankfully) but when September came, I went back to work at 34 weeks pregnant and was probably at my worst swollen state. I lasted approximately 2 weeks and when I realized I could no longer put up with walking/standing due to my severe swelling, I finally asked my OB to write me out of work. I was wearing a whole size larger shoe and wide width because, other than flip-flops, I couldn’t fit into any shoes. Being 5’11” I was already wearing size 11 shoes and now I had to buy size 12 W! Boats they were!
I pretty much had to convince my OB to induce labor because I could no longer take the discomfort. She wouldn’t take me any sooner than 39 weeks and being that ultra sounds had pretty much confirmed that I was carrying a very large baby and she verbally prepared me for the possibility of a cesarean. I went into the hospital for my induction Tuesday, October 4th, 2011. By Wednesday at 6 pm, I still had not made any progress and being that my blood pressure was jumping higher and higher, the doctor informed me that she wanted to perform a C-section. They pumped me full of 2-3 IV bags of fluids and at 8:40 pm, my 9lb 2 oz., 21.5 inch baby boy was born. The next couple days while in the hospital still, I suffered terrible migraines and my blood pressure was extremely high, not to mention that my swelling had not subsided one bit. By Friday, October 7th, I begged to go home and my OB relented and I went home with a prescription of Labetalol for my blood pressure. Sunday night and into early Monday morning, during my many middle of the night wake ups with my baby, I started to notice difficulty catching my breath while lying down. At first I thought I was just overexerting myself but I remember lying on my back in bed and feeling like I had just run a marathon or ridden a bike uphill. I just could NOT catch my breath! And then I started to notice a gurgling in the back of my throat. I was so scared! I called my OB office Monday morning and told them my symptoms. Once again, they were very dismissive and told me to “Call my primary doctor or go to the ER”. I called my primary doctor and thankfully they were able to squeeze me in. They took my blood pressure, which was still very high, and did an EKG, which came back normal. They decided to send me for a chest x-ray. The chest x-ray came back abnormal as it showed fluid in my lungs. My primary doctor called me in a prescription of Lasix to help with the fluid and increased my Labetalol and also ordered me some Potassium. I was told to come back to see them in 48 hours. On Wednesday morning, I returned to my primary doctor (who, by the way, is a wonderful woman who without her I don’t know where I’d be today) and she was shocked to see that my leg/foot swelling had not really gone down, even though I had lost about 25-30lbs in 48 hours! She was very concerned and sent me to get an echocardiogram. By that same day, Wednesday afternoon, my primary doctor called me around 3:30 pm and was extremely concerned. She stated that she had consulted with a cardiologist and my OB and that they all felt that I needed to go straight to the emergency room to be admitted. I was hysterical! Not only was I breastfeeding my newborn but I didn’t want to leave him! He was only a week old! My mom was thankfully still staying with me and took over caring for my son while my husband drove me to the ER. I was a wreck! They hooked me up to an IV and started to pump me full of Lasix. I was literally peeing every 15 minutes! So there I am in the ER peeing uncontrollably, crying because I missed my baby, worrying about my son taking to a bottle and formula for my mom, and writhing in discomfort because my breasts were becoming engorged because I wasn’t nursing. I had to ask for a breast pump and then my husband and I had to figure out how the heck to use the thing! How embarrassing! Long story short, I was sent for repeat chest x-rays and echocardiograms. At this point in time, I still had no idea what was wrong with me and I kept hearing them say “ congestive heart failure”. I remember thinking, “Heart failure?? I’m only 32 years old!” Because I was so sad about being away from my baby, I never once “googled” what was going on with me and trust me when I say, I am a google queen! I am actually so thankful that I never did look anything up because reading the material that is out there on cardiomyopathy is SO SCARY!! All I was worried about was getting home to my baby. I don’t remember what my Ejection Fraction (EF) was, because at that point I didn’t even know what EF meant.
They let me go home after 2 days with a follow up with a cardiologist within the week. Because I was so determined to be able to continue breastfeeding my baby, the doctors kept me on medication that was considered “safe” for nursing. I came home on Labetalol (but a much higher dose) and more Lasix. When I saw the cardiologist for the first time post-hospital, reality set in for me. He actually sat me down and explained my diagnosis and how serious it was. This might be the first time I heard the term, postpartum cardiomyopathy. He was very concerned with the fact that the medications I was on were not the ones HE would have prescribed. As he explained it, the labetalol does nothing to strengthen the heart muscle. I explained that I was still trying to be able to breastfeed. I’ll never forget his words to me, “If you were my wife, and I had to choose between you breastfeeding our son or being there to watch him grow up, I would choose the latter”. I was stunned! I had no idea how serious my condition was! He told me that I needed to stop breastfeeding as soon as possible so that I could start a new medication regimen of Carvedilol and Diovan, which are an Ace Inhibitor and a Beta Blocker, both of which are NOT safe when pregnant or nursing. Sadly, I started the weaning process and “drying up” and within 4 days, I was starting on the new meds. My cardiologist also told me that my EF was 40-45% and had not improved since my initial echocardiogram at diagnosis 3 weeks prior. I’m actually finding out that 40-45 is still actually pretty good considering some women’s EFs are much, much lower! At my next visit 6 weeks later, a repeat echo showed an EF of 50-55%. Since November/December, my EF has remained stable at 50-55% and my cardiologist seems satisfied with that number.
Once I started coming to terms with my condition, I asked my cardiologist about having future children and he pretty much told me that he does not recommend having more children. This is a complete devastation for me. I waited 32 years to have my first baby and had always dreamed of being a mom to more than one child. I did seek out another opinion and was referred to a Heart Failure Specialist in Philadelphia thru Jefferson University Hospital. Unfortunately, he told me the same thing about having another baby. What it comes down to is that doctors still don’t exactly know what causes PPCM in otherwise healthy women. Because they don’t know the cause, they are not able to “guarantee” that it wouldn’t occur again in subsequent pregnancies. Even so, give that my EF has remained stable and I have been feeling pretty good, I am still not willing to accept that I can’t have another baby. Being a mom has been the most rewarding “job” I’ve ever had and I never imagined how much I would LOVE being a mother.
In June 2012, I saw the specialist again and he agreed to start to wean me off of my medications to see how my heart/body responds. I stopped my Diovan about 3 weeks ago now (so far so good) and in 3 months (October 2012, which just so happens to be my “anniversary” of PPCM diagnosis) I will have an echo done and if all looks good, I will discontinue my Coreg too. I’m hoping that I can get pregnant again pretty quickly and have another healthy baby while also remaining heart healthy myself.
This is my story. I’m only a recent PPCM survivor and I know I’m not totally out of the danger zone but I’m feeling pretty optimistic about continuing to live a long and healthy life, hopefully, with more children in my future! I wish my OB had been more on top of my symptoms and had listened to me better. I wish I had known about PPCM then. I am currently in the process of finding a new OB/GYN practice. I just don’t feel like my OB’s were very “in tune” with my symptoms. After all, they are the doctors and should have at least listened more to me when I told them my symptoms to at least considered cardiomyopathy. Thankfully, I listened to my body and sought medical attention when I did. I cannot imagine not being here for my son and I hope that the word gets out there about this silent disease so that more women know, at the least, what it is and what the symptoms are.
My Details
- Date Diagnosed: 12/10/2011
- Child: 1
- Initial EF: 40
- Current EF: 50-55
Story By Holly Peterson-Borrelle