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 attac
k. 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 deat
h. 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.
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!
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.
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.
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.
Hello- thankfully I was able to have a successful 2nd pregnancy and now have 3 year old twins. Leah T.
Hi Leah! just read your story today! i had a baby in 2009 and had peri partum cardiomyopathy with the same condition as yours. My heart function was normal after treatment. Its been 6 years and I havent planned a second child after all this. Did you experience this in your susequent pregnancy??? Im so worried that if it happens again it would be terrible but knowing that you have more babies motivates me to think again.
Hey Both same here.. I had a baby in August 2014 and had peripartum cardiomyopathy with the same condition as yours. My heart function was normal after treatment. Its been 6 years and I am planning to have second child after all this.Did you experience this in your subsequent pregnancy??? can you please mail me more details at rajemahendra111@gmail.com
Leah thank you so much for sharing your story!
Medstudent, it’s great to hear your concern. However, I want to point out that the reason Leah’s providers thought she was normal was because these symptoms are very common for pregnancy. Most women with the same exact symptoms do not have heart issues.
Hershey is a great facility and it sounds like everyone was very caring and attentive. I think it’s very important for everyone to consider how difficult it is to diagnose something like this in real life. Rather than losing faith in medical professionals, we should be educating and informing others.
Being aware of this condition will help affected mothers-to-be communicate about their symptoms in a way that sets them apart. For example, being out of breath is very common among pregnant ladies, but gasping for breath is a different ball game.
We won’t be able to help future moms if we cast blame instead of recognizing the difficulty of the task that we want to improve (recognizing the condition).
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..
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.
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.
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.
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
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!!
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.
I am so very sorry to hear about the loss of your sister. I know this is an older comment but it makes me sad every time I hear this. Bless you!
I have EF of 45% I got diagnosed after 2 weeks of delivery. I was discharged from hospital but after a week and half I while my ob kept saying I need time to heal and thought my symptoms were just normal for a woman delivering baby , but when i couldnt breathe i went to ER, still very scared, they did Ct scan echocacardiogram ,xray ruled out i had mild cardiac arrest stayed in ER for 2 days ,gave me labitalol 300 MG and lasix 20mg and I’m still on it.
I hope you’re healing and recovering well. Leah T
I am overwhelmed with the number of responses since I last read this article. I am the author of the original story. You can find additional support on myheartsisters.org and on Facebook.
There is a big community of us on facebook. Search Peripartum Cardiomyopathy or PPCM. Also http://www.myheartsisters.com and http://www.ppcmsassys.org
I found this article after a Google search from popping in my lungs while pregnant. I’m now even more nervous. I’m 37 weeks pregnant and have noticed tachycardia at times and serious skips from my heart. My midwife sent me to the cardiologist who did a24 hour monitor and diagnosed me with PVCs and said it was totally normal during pregnancy and they’d do a echo after labor. My mom has mitral stenosis as well. I’m not really sure how else to advocate for myself or if I should. I’ve had no swelling but feel those PVCs everyday, multiple times a day. Have any suggestions?
I would continue to voice your concern about the popping in your lungs until someone gives you a reason it’s happening. It’s true that PVCs can be normal in pregnancy and that some people feel them more than others but I would still voice concern. I really wish I had been more vigilant and listened more closely to my body, maybe then my EF wouldn’t be as low as it is. Have you had your baby yet? (P.S. CONGRATULATIONS!!) How about the echo?
It’s nice to read this article and some of the’s responses! I have felt so alone since being diagnosed with PPCM with an EF of 20% on October 1st. I was 5 weeks PP with my youngest son and honestly didn’t feel “right” the entire last month of pregnancy. I had preeclampsia with my 1st son so my nurse midwives suspected that I might have it again after my complaints of being exhausted and just feeling off, so I was induced and welcomed my youngest son into the world on August 23rd. He spent a little time in NICU for some blood sugar issues, but all in all things seemed normal. When we were all discharged to home, I felt very anxious. I would wake at night and feel breathless, but I chalked it up to anxiety. After all, I wasn’t sleeping much at all, and breastfeeding was a challenge. I thought my nerves were just shot.The first half of my pregnancy and before this pregnancy, I was EXTREMELY healthy and active. I lifted weights, did at-home Beachbody workouts, and felt great. All that stopped the last half of my pregnancy, but 2 weeks PP I felt like maybe I could get back into the swing of things. My mom came to the house to watch the boys so I could take a walk. I started down the road and my chest felt very heavy. It seemed no matter how slowly I walked, I couldn’t catch my breath. I really thought “Wow, I’m REALLY out of shape now. I let myself get bad during that pregnancy.” I had NO IDEA at the time that my heart wasn’t functioning properly. On October 1st, I laid both of my kids down for a nap and decided to rest myself. I laid down and instantly felt like I was drowning. My lungs were crackling when I breathed in and out, my heart was beating out of my chest, and I started to get disoriented. I called my husband while he was at work and told him we needed to get to the ER (I didn’t even think of calling 911 at the time). They gave me IV Lasix and I was almost instantly relieved of my breathlessness. I lost 15 lbs of fluid overnight in the hospital. My cardiologist strongly suggested that I stop breastfeeding and said that even if I recover fully from this, another pregnancy will most likely kill me.
Long story short, I’m still living this. My EF is 20% (at least it was 3 weeks ago… I REALLY wish they’d do those a little more often, at least for my peace of mind.) I’m on a beta blocker, an ace inhibitor, aldactone, and lasix as needed. I’m weighing myself every morning and watching every mg of sodium that goes into my mouth (I’m on a 2000 mg sodium restriction). I’m not allowed to work out and the cardiologist wants me to nap daily. I want to live, guys. This was so terrifying… I want to raise my babies. I’m only 28. Married to the love of my life. With two beautiful sons. I feel so blessed to still be alive but I’ve got to admit I’m scared. 20% seems SO low. I’m scheduled for my next echo in January and have been praying for drastic improvement. Honestly, besides the fact that my blood pressure runs REALLY low sometimes and I almost pass out when I stand up a lot, I truly feel great now. I have more energy and my family says I’m smiling more than I have since my 8th month of pregnancy. I’m really hoping I’m part of the blessed group that gets to reverse all this and live strong for my family.
Thanks for listening er, uh, reading guys. I’m gonna check out the other support groups that have been posted.
Tara
Hey Leah! Reading your story brought tears in my eyes..it was my story in your words…exact same feeling..exact same pain..same fear….even right now, thinking about those days, I am becoming restless and having trouble to breathe properly…..
I was diagnosed with PPCM just 6 months back. It was so hard for me to explain these feelings to my OB and was getting tired of of hearing that it was all normal. Only I knew, that it was never normal. I am also working on raising awareness about it among my friends, relatives and society. I haven’t recovered yet and I still have all the symptoms going on. It gets worse at night. I am so week all the time and need family support to take care of my kids. Feels better that I am not alone fighting this disease. I hope to recover as soon as possible and live with my beautiful daughters.
Sifat
Am in this condition right now, praying favently for a complete recovery
I recently had a LSCS for my twin girls. Before the pregnancy everything was well, my BP, everything, but during my pregnancy i experienced some problems breathing especially when i brush my teeth. About 30 mins after the c section, my BP rose to 240, i experienced neck pains and headaches. A few minutes after i was unconscious. I was rushed to ICU. The following day i was told that i had a mild heart attack and part of my heart was damaged. I was given medications but i still feel discomforts at times. Problems to sleep because i often jump out my sleep feeling scared and as though i cant breathe, slight dizziness/ imbalance, unable to swallow sometimes. I am so scared at times.
Hello my name is michelle I was diagnosed with dilated cardiomyopathy after I had my daughter 14 years ago a month aftrr I had her I got where I couldn’t breath and coughing felt like a ton of bricks on my chest I went to the hospital the next morning they thought o had phenmona and I remember them saying they were putting me in room 2 something next thing I know o woke up in ICU with three burns on my chest I ask what happened and they said I went in full cardiac arrest and hd to be shocked three times I had a difibulator put in that was 2001 2007 2008 they took it out and put a pacemaker they left the wires to the difibulater in me first anyone know if that is normal and told I can’t have nomore kids
Hi, my name is Mandy. I am a mother to a beautiful daughter who is 7 years old. We decided a year ago to try for another baby. It took us over 9 months to get pregnant, so when we found out before Christmas we were expecting, we were so excited. Shortly after I found out, infact 4 days to be exact, we lost our baby. I was devastated. A little over a month later we found out we were expecting again. (I still wonder how, because we weren’t trying..but clearly Gods plan was bigger than our own.) Shortly before we found out we were expecting Twins I found out that I had a erratic heart beat. We set up an appointment with a Cardiologist who diagnosed me with Premature Ventricular Contractions (PVC) and Cardiomyopathy where my left ventricle of heart was dilated. My world flipped upside down. It wasn’t caused by my baby because I lost it at 6 weeks and they claimed it wouldn’t have affected my heart at that early of a stage. Clearly this is something that I always had. A week after the diagnosis I was sitting in the ultrasound room awaiting our first opportunity to make sure our baby was okay. To our surprise we saw 2 sacs and realized we were having fraternal twins. I am currently 32 weeks pregnant and been on heart meds since I was 16 weeks. This has been the most challenging, amazing, remarkable, stressful, scary time of my life. Every day that goes by I feel my heart working harder for these 2 miracles. I am terrified of what is to come, but It helps to share my story in case someone out there has been through the same thing. I have learned that you never truly appreciate your health until its in question and you will never come out of something like this the same person you were going in. I don’t know what my future holds other than I will be having my Cardiologist go into my heart shortly after the babies are born to try and shock the PVC in hopes that they stop so my heart muscle can regain its strength. It isn’t a guarantee but for now the medication helps me not feel the symptoms as much. I am so happy to come across a site that offers support and to hear all of your stories. It makes you feel a little less alone.
Hi my name is Dawn. I’m 39 years old. My baby girl was born Sept 3rd and I was diagnosed with peripartum cardiomyopathy 3 days after giving birth. It started with shortness of breath the day I was released from the hospital. I just thought it was stress from coming home with a new baby. I had just went through 32 hours of labor and still ended up having a CSection. 3 days later it felt like someone was sitting in my chest and I couldn’t take a deep breath. I called my OB and was told to go to my local ER. I was 2 hours away from my hospital as I moved to a rural area. I was told a had CHF and I was then flown in a helicopter to the city. I was so scared I wasn’t going to see my baby girl or husband ever again. My EF was at 26%. After days of lasiks I had lost almost 20 lbs of fluid. When discharged from the hospital after having a stress test done that morning I was up to 45%. I was also advised not to have anymore children. I have a follow up appt next week and I hope my numbers show improvement. It’s very scary to me and I felt so alone until stumbling upon this forum. Any different feeling I have in my chest I start to panic but I’m trying to stay positive. I’m eating heart healthy/ low sodium diet and watching my fluid intake. Reading these stories has helped me more than you know.
Thanks!
Dawn
My daughter died 6 days after child birth, to what they claim is or was PPCM. She never had or complained about any of these symptoms. How did we miss this.
I’m so so sorry to hear this. I wish I had answers for you, but I don’t 🙁
Mine happened suddenly after birth.
I went through this. Not to this extent… But I thought I would die too. 3 days after being discharged from the hospital after giving birth, I woke up with the crackling in my chest, severe back pain, weakness, and couldn’t get air into my lungs. I am not an alarmist by any means but I knew something was wrong so I called my on-call doctor who told me that I needed to go to the ER immediately and he was calling ahead. They got me right in and started the battery of tests… Blood, Irvine, ekg, chest x-Rays, ct scan. Came back telling me I had a moderate amount of fluid in both lungs and surrounding my heart: pulmonary edema and congestive heart failure were the diagnosises thrown out at me as they wheeled me upstairs to be admitted… Leaving my toddler and 5 day old home with their daddy. The cardiologist I met with ordered ultrasounds on both legs and an echocardiogram and told me his biggest concern at this point was pregnancy induced cardiomyopathy. My blood pressure has skyrocketed so I was put on medication, given lasix, and nebulizer treatments. I couldn’t lay down so I had to stay sitting Indian style from the pain and so I could breathe. The next day the results came back and thank God, my heart was functioning properly. I wasn’t diagnosed with cardiomyopathy but I was put on medication and only released once my bp had stabilized. I’m terrified to think what could have happened if I didn’t act as quickly as I did… Or if the doctors blew me off… Or if the hospital staff didn’t think to check me for PPCM. Reading your story makes me realize how truly blessed I was that the doctors and hospital staff who took care of me knew what they were looking for.
I’m still on medication (3 months ago this happened), but expected to make a full recovery. I hope all remains well with you!
Thnx for sharing i also went thru dat,i strtd coughng blood,swelling,i even went to hospital for more dan 5 tyms n tld me dat i was fyn,i couldnt walk for 5 min without being tired,so aftr 3 months of being like dat i wet to pta den i went to a clinic n explain evrythng to a nurse n xe said my thngs were complicated den referred me to hospital coz i had a crious problem.then i went back home n i ddnt sleep dat night i coughd the whole night n thot i was dyng.de next morning my sister took me to hospital and we went streight to emergency coz we had a referal letter,thats were they did ECG n send me to poly clinic,and anada doctor came in took my file with him n read all de infomation was in it and send me to xray,and wen i cme bck with the results,they told me that i have congestive cardiomyopathy and palmonary edema,and i was admited instantly n gave me lasix to drain de water.i stayed in hospital for two weeks.and now my heart is stable but probably will take meds for the rest of my life.and its been 3 years now,so i just wana knw if i wil b able to be pregnant again or not coz im only 24 years old please help if some1 knows smethning,thnk you.
Was your sons birth defect related to the PPCM do you know? I read this article after feeling like I was getting pneumonia (I am only 4 months pregnant however and am 25 years old but I have a very high heart rate around 98-99 like you mentioned) & lately I have been feeling like I can’t breathe. Thanks for your post by the way!
I have ppcm right now I’m 25 yrs old an had my second son December 7 2016… I had no symptoms of this except having trouble breathing.. I woke up December 16 2016 an feed and changed my baby put him back to sleep… I then layed down and it felt as if someone stabbed me in the chest i started sweating really bad so i walked over to my mothers house and asked her for help she called 911… when I got to the hospital I remember saying hi to the nurse that had walked into my room next thing I remember after that is a doctor pulling a tube out of my throat…… when I got to the hospital I had a seizure then coded they shocked me andown then I coded again so they shocked me again and tubed me and then sent me to a bigger hospital that was more equip to handle what was going on……. I was in a medically induced coma for 2 days when I woke up they told me that I had a heart attack that was caused from the ppcm and I was severely tachacardic and I only had 25% heart function … I was in the hospital in icu for 7 days then on the 8th day I was able to go home finally I got to see my babies…. I was only able to leave the hospital if I agreed to wear a external difibulater ( a life vest) which I have to wear for 90 days so I go back to the cardiologist March 20 2017… hopefully I will have more then 40% heart function an will b able to remove my life vest….. if not then they will put in a internal difibulater…… but I really hope my story helps someone else cuz this ppcm doesn’t care what age you are it can still happen.
Also My heart rate got up 225 bpm
My mom died from this… she was 28. I was barley 5 months old.
I’m so sorry 🙁
I delivered my first son at age 35 and went into CHF 4 days later. I then got pregnant at 40 and was told it would be fine to have the baby. I did, he was delivered by c-section 3 weeks shy of my 40th birthday. 4 days later I went into CHF again. From this. Its a terribly scary thing that I will live with the rest of my life. I’m now 16 and 10 years removed from each episode, but I cried when I read this post. I never felt so alone, scared and like I was dying as I did at those times. I’m presently waiting on test results from the most recent testing.
Yesterday I had an echocardiogram, ecg and stress test, my sister has a genetic heart condition so I was being tested for that. Turns out I don’t have the genetic condition but I may have peripartum cardiomyopathy. The echo showed fluid around my heart, left side was larger and weaker than the other. I’m 6 months postpartum and had never heard of this condition before! There’s so much I didn’t tell the doctor and now I feel so stupid. I was signed off work at 7 months pregnant because of headaches (more a feeling of pressure that started in my neck and spread up to my head, usually when laying down), I was extremely breathless through the end of my pregnancy and my legs and neck were extremely swollen and got worse after baby was born. Immediately after delivery I thought I was dying, I couldn’t breathe and I was shaking and felt so cold, I couldn’t speak at all. We spent a week in the hospital as baby had suspected sepsis and I was so weak I couldn’t carry him or pick him up, I needed help to breastfeed him, I would feel faint and my heart would pound in my chest when I stood up or walked at all. When my blood pressure and pulse was high the midwives didn’t believe the monitors and did the tests manually and said I was fine. Whenever I told them I felt like I was having a heart attack they said it was due to blood loss and low iron levels. I was discharged a week later though I still felt awful but I thought all of these symptoms were normal but now I’ve read about this condition I’m 100% certain I’ve experienced it. I’m so worried now that there will be permanent damage where it hasn’t been diagnosed and I feel so silly for not telling the doctor all of my symptoms so I’m worrying even more that it won’t ever be diagnosed. I feel so anxious and sick about it all now! Will my heart go back to normal? Will this affect future pregnancies? I’m terrified!