Guest Post – How Pregnancy Can Kill: A True Story of Peripartum Cardiomyopathy

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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. 

 

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Comments

  1. Michon says

    I am going through this right now. I had a car accident 4 mths. postpartum, fractured a rib, and got pneumonia. After the accident my heart rate continually increased, and i felt that I was not getting better from the accident….I was sitting home dying. I plan to educate everyone I know! I am glad their is recovery in my near future and I plan to do all tat is required of me!

  2. Aubrey says

    I have postpartum cardiomyopathy and congestive heart failure, I spent the first two weeks of my daughters life in and out of the hospital and also missing a dear friends funeral. It took being released from the hospital two times before they figured out what was wrong with me. The ER and L&D doctors and nurses were fighting over who knew more and what was actually wrong with me. It’s a horrible feeling when you know something’s wrong and you are told you are fine.. They finally ran all the test and found PPCM and CHF, Heart problems run in my family on both sides so we have a family cardiologist which is amazing.. When he was paged to the ER to evaluate me he responded immediately and had me admitted. After all the sleepless nights of not being able to breath, have energy to hold my child or tend to my oldest daughter I was finally getting help. I didn’t realize the severity of the condition because advertise was telling me it was no big deal I would be fine. After being released from the hospital and knowing what was wrong I didn’t want to come home bc I was scared as soon as I laid down I would not be able to breath again since it had happened twice before. I stayed at my moms house for a couple nights which obviously my husband was not a fan of, but being close to my mom made me feel better.. needless to say I’m 4 1/2 months into this and there are days I still feel the effects of this condition. I can’t do the things I have always been able to do and I quit my amazing job due to the stress and high pace of things. I go back to the cardiologist again in January and I’m hoping this have gone away completely and I don’t have to take these meds anymore. I don’t wish this upon anyone, if you have the symptoms as she listed above stay on your OB about them, don’t let them tell you that you are fine when you know you aren’t. Mention these conditions and get tested, not everyone is as lucky as we were to pull through with little or no effect on us or our day to day life.

  3. Zoe says

    Thanks for sharing your story Leah. I too experienced postpartum cardiomyopathy following my little girl’s birth in July 2012. I was discharged from the maternity hospital without my doctor being called to review me despite my request that she be called. The midwives told me I was anxious and urged me to take “deeper breaths” (which as you know is near impossible). I was looked upon as a difficult patient and was made to feel like I was delusional.

    I ended up in the ER near my home on the afternoon of my discharge by which point I was dying. I, like you, have made it my mission to raise awareness of this condition here in Australia. It is never mentioned in any of the literature provided by maternity hospitals etc.

    Best of luck in your future endeavours.

  4. MedstudentAustralia says

    I’m a medical student. Reading your story, I’m actually very annoyed that your diagnosis wasn’t made earlier. Dilated cardiomyopathy secondary to pregnancy is not rare; it’s very common and is a basic condition assessed on the USMLEs (US medical licensing exams). Although you hadn’t had a severe tachycardia (elevated heart rate), the orthopnea (shortness of breath while lying down) and need for pillows are classic signs of left-heart failure. Not to mention, the crackling/popping in the lungs is obvious pulmonary edema (significant left-heart decompensation). Pitting edema (when you made indentations by pushing on your ankles) is a classic sign of right-heart failure. The combination of left- and right-heart failure is called congestive heart failure. CHF is the most common reason for hospitalization of adults in the United States. CHF, especially that which is progressive through latter stages of pregnancy, is most certainly suggestive of dilated cardiomyopathy (DCM).

    The best initial diagnostic test for DCM, whether in relation to pregnancy or not, is echocardiography to look at ejection fraction. That should have been performed once your pulmonary symptoms ensued and you should have been put on beta-blockers and diuretics early. Although diuretics in DCM decrease severity of symptoms, beta-blockers decrease mortality. None of your physicians will admit it, but they know it was a mistake that this wasn’t diagnosed earlier. It happens all of the time. No doctor is perfect. And life is a constant learning curve.

    Nobody is entirely sure why autoantibodies are produced against myocardium in relation to pregnancy. We do know that there’s a genetic link to it because certain populations, like Haitians, have higher incidence. On the other hand, any subsequent pregnancies would be a tremendous risk, since your autoantibody response would be more salient.

  5. Latavia Singleton says

    I gave birth to my daughter on10/30/2013 i was considered an high risk anyways due to an earlier miscarriage, other then that i was pretty healthy or at least i thought. After our first three days home i notice that i had some swelling in my feet, ankles, and Calvs i just thought it was some fuilds that just retain and i started to move around the house till the fuild went away, little did i know that my heart was failing. Over the next week my breathing started to get labored i thought i develop a case of asthma went in to the er and was admitted to icu heart because of chf the i was told i have ppcm it’s very scary… I’m home now on meds to slow my heart beat down and to keep my blood pressure under control..

  6. Krystle says

    I had CHF and DCM in 2008 with my 2nd child. Symptoms began in the hospital but I thought I had a cold and was just tired due to having a new baby. Finally one night I took my pulse as it felt like it was beating out if my chest and it was 32! I was treated and diagnosed right away but because I let it go I was left with a decreased EF around 40 to 45 6 months after pregnancy which remained at that same efficiency. I had another child in 2010 and was treated with steroids the first day my pulse dropped(again around 10 days post partum) into the 30’s. Within 2 weeks my pulse and Echo were back to my normal. I had another child in 2013. My symptoms took a little longer to appear this time and it took a higher dose of steriods to bring my pulse back up. Interesting fact was that my first child was with another partner. I believe it was the steroids which prevented the CHF/DCM from recurring. I hope this helps someone! I was seen by Dr. Sample at Billings Clinic.

  7. Lucy says

    I was diagnosed with peripartum cardiomyopathy on April 20, 1997. My 2nd child was born on January 20, 1997. I developed a cough the week after my pregnancy that wouldn’t go away. I started noticing a popping noise when I was laying on my back from my lungs and I needed extra pillows at night to sleep. I was extremely exhausted but blamed it on just having a baby. I finally went to the doctor who said it was allergies and put me on allergy medicines. A few days later I went back because I was now coughing so hard I was breaking blood vessels and coughing up blood. I demanded to see my nurse practitioner who helped me through my prenancies. She took one look at me and knew something was wrong even though they couldn’t hear anything in my lungs. She took chest xrays which showed my heart to be 2x its normal size.

    I was sent to see a cardiologist the next day with orders to go to the hospital if my breathing got worse during the night. The cardiologist ordered an echo which showed my EF down to 7%. I was put on medications and bed rest. I was the first peripardum cardiomyopathy patient he had seen. He said I was in CHF and extremely close to having a stroke. I was told that I had a 33% chance of getting better, 33% chance of staying the same on medications, and 33% chance of dying or needing a heart transplant. He said it was likely a virus was triggered by my pregnancy that attacked my heart. I was put on bed rest for a couple of months.

    It’s been 17 years. My EF is 56%. I take medications for blood pressure and cholestoral….I can live with that.

    As a side note I was given a steriod shot about a 2 months before I delivered due to my starting to dialate early. I ended up have my daughter 2 weeks early…but she was still 8lbs 8 oz. I always worndered whether the steriod shot had anything to do with the cardiomyopathy.

    I also have a family history of cardiomyopathies….both my father and brother got them at young ages. My Dad was 38 and my brother was 31 when they were diagnosed. My Dad passed away at 59 from an infection he recieved while in the hospital for his heart. He was on the heart transplant list. My paternal grandfather died of a stroke at 62 and a paternal aunt passed away from a heart attack at 45. I was 30 when I had my daughter and was diagnosed. I’ve already had both of my kids checked by a cardiologist. They are both very healthy and active in sports (soccer and dance). With all athletes that die suddenly from cardiomyopathies I decided it was better safe than sorry.

  8. Susan says

    My beloved daughter-in-law is in the hospital after delivering twins and being diagnosed with PPCM. I am glad the nurses and doctors caught it early (upon her insistence that something was wrong) and is being treated. Your comments give me great hope that she will make a full recovery. Again, I emphasize that she and my son were strong advocates for themselves and this, to me, is extremely important if the death rate with PPCM is to be reduced.

  9. Treva says

    Ok first let me say I’m glad I’ve found you all because I thought I was alone in this! I was diagnosed with postpartum cardiomyopathy on July 22nd 5 days after I had my daughter. I was discharged from the hospital on Friday and returned via ambulance the following Monday. I had gestational diabetes and preeclampsia while pregnant. 2 days before my OB would have me induced I was lying on my couch completely swollen EVERYWHERE. I thought I was dreaming but I was dying. I saw a shadow type figure kneeling beside me on the floor. I remember saying get out of my house and the figure left and I sat up gasping for air. I thought it happened bc of all the weight I was carrying…oh no my heart was failing. I gave birth to my baby via cesarean 2 days later bc my blood pressure was really high. When I got home I was feeling bad but I figured it was bc and the hard labor and delivery. My aunt is a registered nurse so when I called her that morning and told her how I was feeling shortness of breath and my chest was really tight. I could also see my pulse just by looking at my wrist. So she told me to call an ambulance and she would be there shortly. When the ambulance arrived they did the normal and put me in the back. I guess things started getting worse so they gave me some baby aspirin. I was now having a panic attack because I was realizing I was having a heart attack or something. I remember getting to the hospital…the same hospital I gave birth at 5 days ago and it liked like every doctor in the ER was waiting on me. I was so confused and they kept asking me if I had asthma and the answer was no. I was so
    Out of it I didn’t know what was going on I remember they tried to get an X-Ray of my chest but I screamed bc I couldn’t lay down so they gave me LASIK and took and ultra sound of my heart. I remember them saying she’s to young…I was 27 years old at the time. Then the head cardiologist came in and said you have congestive heart failure due to your cardiomyopathy. I was terrified. I stayed in the hospital 5 days without away from my baby girl. Then I went home on several meds and was told I should recover fully.
    However I didn’t my EF went from 35% to 20% I was at risk for sudden death so in dec 2013 I got an pacemaker/defibrillator implanted. So far it’s only shocked my heart 1x I’m on this journey and it’s good to see I’m not alone! I will pray for each one of you!!
    Be blessed
    ~ Treva

    • Stephanie Douglas-Jackson says

      Hello Treva, I am a survivor..having my PPCM a little under three years ago. I had my cardiac event seven days post partum. I avoided a difib because I just didn’t return to my cardiologist…..so irresponsible and risky, but I am a work in progress. Thankfully, my heart has improved, as my EF is now around 45/50.

      I so wish that we had better, more heavily visited sites, forums. I will forever be defined by this life changing event, and my little son who saved my life. Had we not kept me up that night I would have probably expired in my sleep. Good luck to you..to us all..this sisterhood that proves how wonderously amazing women are!!

  10. Ashleigh says

    My sister went through the same thing. We thought it was her asthma, then it was panic attacks but everything was normal. My sisterg gave birth to my fourth nephew December 23rd 2013 and I was so excited! I was right there helping her push him out!!! Exactly one month after she had him her heart started beating really hard again, she couldn’t breath and she was exhausted just doing everyday activities. On March 29th 2014 I got a call saying my sister was in the hospital bc of her gallbladder and liver. I got on the highway the next morning and I went to the hospital. My sister could barely talk and you could see her heart beating through her gown. I gave her a kiss, brushed her hair and put lip gloss on her bc her lips and skin looked so rough and dry. 2 minutes later the nurse came in and said we are gonna do some test. We are gonna stick a little camera down in your stomach to see what’s going on. It will be real quick she said. I rode down the elevator holding my sister’s hand bc I’m terrified of elevators. They rolled her out of the elevator and into pre-op. We waited and I made her laugh. I kissed her and told her that I was gonna see my nephew at preschool and by the time I got back she would be done. She told she loved me and she lived a short life. I told her that she would be ok that they were just gonna see what’s wrong and fix her all up. So I left but my dad was there. Shortly after I got a call saying my sister went into cardiac arrest. Her heart wasn’t strong enough for the exam. So I went back to the hospital and the doctor told me they revived her and it took 21minutes. She went 21 minutes with no oxygen to the brain. I looked at my sister and she was lifeless it wasn’t her. She was cold, swollen, dark, hooked up to a ventilator. My family and i sat around her bed crying and begging God to let her survive. The next day the doctor told us that due to the lack of oxygen to her brain she had 0% brain activity and het heart was working off of 3%. We prepared the rest of our family, but were so confused. The doctor came back in and said she had peripartum cardiomyopathy and explain to us what it was. It all made sense after that. She was tired, out of breath, her heart kept beating fast, she had fluid in her lungs and her skin changed. The next day April 2, 2014 my sister died. She was 28 and she found out too late. I love her and each day I have to manage to live without her. Please don’t wait if you have these symptoms demand help and don’t stop until you get answers. Don’t settle for this is normal bc it may not be! It’s been a little over a month since my sister passed. Rip Jasmine N. Blount.

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