I was 26 and pregnant with my second child. It was a planned C section due to my first child's failure to progress and the complications I had faced. I was overweight and my doctor and I closely monitored my weight gain. I had only gained 15lbs. My entire pregnancy was normal. I had no chest pain or no shortness of breath. I even worked until the day before I went to the hospital. The surgery went fine and I was placed into my room after recovery.

None of this is from my own memory. I only have one piece of memory from being in the hospital. In my room, with my husband, best friend, and 5 year old daughter, I was talking and laughing and then flatlined after taking a sip of juice.

Sudden cardiac death.

If my husband wasn't in the room I wouldn't be here. The nurse had just made her rounds and checked my vital. Everything was normal. He pushed the call button and told them they needed to send someone now. A code blue was issued to my room. I was shocked a lot of times. I can't remember the exact number I was told. I was revived after 11 minutes. They were still having trouble stabilizing my heart rhythm ; so they lowered my body temperature with an ice bath and I was placed in a chemical coma. When I was stable enough, I was careflighted to a cardiac specialist hospital. I stayed in a chemical coma for a week. They tried to wake me once but I pulled the line out of my neck and was placed back in a second time.

When I finally awoke, I panicked. I pulled the intubation tube out. I didn't know where I was or why. My dad had placed pictures of my daughter and my son above me on my bed. I had no idea who my son was, but I knew my daughter. When he told me that it was my son, only then did I realize I was no longer pregnant. I had no recollection of going to the hospital for my son's birth.

The doctors told me they had diagnosed me with peripartum cardiomyopathy. I have an ICD implant that saved my life 4 years after the implant when I had an arrhythmia at work and my heart stopped.

Due to the Hypoxic-Anoxic brain injury from 11 minutes without oxygen, I have had a variety of other health issues other than my heart. Short-term memory  loss, decline in executive functions,  difficulty with words, mood disorders, anxiety and severe depression. Just this past March I was admitted to the hospital because I had so much water retention around my heart and lungs I passed out walking around the store.

This whole thing is like a nightmare I can never wake up from. It feels like no one quite understands all the suffering I have gone through. I just want to be normal again, and that will never happen.

My Details

• Date Diagnosed: 02/12/2008
• Child: 2
• Initial EF: 20
• Current EF: 40

Story By

I was 36 years old and over the years I had heard just about every labor and delivery story from all of my friends, family and coworkers. Even though everyone said my story will be my own, I never thought mine would be so unique and dramatic that it reminded me of a really bad Lifetime movie. Everything was so severe and so urgent there was really no time to process the magnitude of what was happening; which eventually ended in a final diagnose of Postpartum Cardiomyopathy (heart failure). Something I found out afterwards is that Postpartum Cardiomyopathy is often referred to as the “Silent Killer”. When left untreated it can lead to death. The days ahead were a whirlwind of emotions, physical pain and mental anguish. I experienced the best day of my life and some of my worst days all within an 11 day period….this is my story

On the evening of Sunday, May 21st I had two episodes of extremely sharp pains in my lower abdomen that lasted for about 15 minutes each. Since this was my first child and I was unfamiliar with the labor pains, I originally wondered if I was having contractions. “Do all moms feel like this?” was my initial thought. Little did I know this would be a reoccurring thought and the constant question nagging at me throughout the next 11 days. Once the second episode started I quickly realized there was no way in hell this is a contraction, women wouldn’t have so many kids if every contraction was this horrifically painful! In addition to my uncontrollable tears from the pain I was also unable to sit down or find a position even remotely comfortable. Because of this, we decided to call the on-call OBGYN who, after hearing my symptoms, recommended we go to the hospital and be seen as it’s hard to know without seeing me in person. On the way there I kept thinking “oh great I’m probably not in labor and I’ll add to the statistics of all the expectant moms that go in and it’s a false alarm”.

Upon arriving at the hospital, they placed us in a temporary room and of course at this point the pain had completely gone away. We were in the room for about an hour when the nurse walked in to tell us that I have Preeclampsia. Preeclampsia is a potentially dangerous pregnancy complication characterized by high blood pressure. They said the on-call doctor was on her way in because we are having this baby tonight! This is when the drama of my very own Lifetime movie became our reality.

We were stressed but even more excited to meet our baby. We wanted the gender to be a surprise, so we had no idea what we were having. We welcomed our very own miracle and little angel baby girl Nia Dawn Bredenberg at 11:06pm on Sunday, May 21st 2017 via C section. She was a very healthy baby weighing in at 8 lbs 14oz. My life-long dream of having a child and becoming a mother had come true! No one can prepare you for the moment you see your child, hold them in your arms or hear them cry for the first time. It is an absolutely magical experience and beyond any words I could describe. Sunday night and Monday morning were filled with so much excitement and love from all sorts of visitors including our parents, siblings, in-laws, grandparents and closest friends. I had my hemoglobin tested on Monday morning which showed I had lost a significant amount of blood loss. Normal hemoglobin levels for women ranges between 12.0 grams per deciliter to 15.5 grams per deciliter; I was only at 6.3g/dl. As a result, the doctor highly recommended a blood transfusion. Since I really knew nothing about blood transfusions except the scary stories from the 1980’s where HIV could be transmitted, I was quite nervous. My family helped me ask the doctor and nurses questions to increase my understanding and Google quickly became my best friend for knowledge. In the end, it seemed like the best decision to move forward with the blood transfusion in order to increase my hemoglobin count. We tried to keep the severity of everything light by joking that maybe I would get a little Kardashian and Adele blood. Unfortunately, I didn’t get either. By Monday night my hemoglobin had only increased to 6.8g/dl. With my visitors there, I was wheeled frantically down for a CAT scan with contrast dye of my abdomen. The cat scan showed that I had two abdominal wall hematomas. Abdominal wall hematoma after a C section is the more common complications after surgery, if there is a delay in diagnosis it can lead to serious complications and even be life-threatening. The term "hematoma" refers to a mass or collection of blood (blood clots). At that point they checked my hemoglobin again which had now decreased to 5.5. By Tuesday I had also developed an ileus. This basically means my bowels had shut down. I had severe distention; my stomach was so bloated it looked almost like I was pregnant again. It was super scary to not only feel awful but to also see the horrible physical changes my body was going through because of this ileus.

By Wednesday morning the doctor was very concerned about the two hematomas, blood loss and ileus and said we needed to go back in to have a second surgery to take care of the hematomas (blood clots) right away. Again, I was wheeled down frantically (insert Lifetime movie visual) to surgery. During the surgery they didn’t see as much blood as they thought they would with the hematomas. They were able to repair the area where the abdominal wall hematomas had formed.They gave me two more blood transfusions during surgery to help increase my hemoglobin count. After the surgery my hemoglobin count had now increased to double digits which was very promising! Now I needed to recover from this surgery and the ileus, so I was transferred from Postpartum to the Med-Surge unit of the hospital because they decided the next best steps to help with the ileus would be inserting a NG tube through my nose to help with the distention. We were told the Med-Surge unit has a lot more experience in inserting and monitoring a NG tube compared to Postpartum so we made the move. During all of this we also found out Nia was being discharged from the hospital because she no longer had a medical necessity to be there. At that point we decided to keep her in the hospital as a visitor. We just couldn’t bear the thought of being away from her at this point so she stayed and her dad was able to care for both her and myself. At only 4 days old her new home was the Med-Surge room with us.

Thursday was one of the hardest and worst days of my life. In addition to the discomfort of the distention, I started experiencing shortness of breath and pressure on my chest. Little did I know, it was only going to get worse…..it was time for the NG tube. The nurse on duty had shared with us how she has never actually inserted a NG tube. This of course made me very anxious before even getting the NG tube inserted. I had to suck through a straw while my sister in-law (who is a nurse) helped the nurse on duty assemble the NG tube that went through my nose, down my throat and into my stomach. The discomfort of the NG tube combined with the shortness of breath and chest pressure I was experiencing was almost unbearable. It hurt so bad to even try to talk, I thought I was on the verge of having a major anxiety attack. I begged my sister in-law to talk to the nurse about getting me something to knock me out because I couldn’t handle the discomfort of the NG tube. They were able to drug me up enough that I eventually feel asleep and the misery of Thursday was gone. Looking back at it all, I now know it wasn’t anxiety; this is when my heart start failing.

Even though I was hardly talking because of the discomfort of my throat and shortness of breath, Friday was a lot better than Thursday. I remember writing a note to my mom saying today is going to be filled with all positive thoughts and conversations because I’m determined to recover and get this horrible NG tube out. Believe it or not, that horrible NG tube was removed later that day. Regardless of how uncomfortable it was, it had removed a fair amount of junk which helped decrease the distention, so it did its job. Saturday was even better because my bowels started working again. The excitement of me finally going to the bathroom was felt by all! I was however still experiencing the shortness of breath, the chest pressure and they heard some light crackling in my lungs, which were all chalked up to being common symptoms of someone who just gave birth and came out of surgery. None of us knew these symptoms would escalate to the unimaginable events that were about to unfold.

Sunday started off great; my doctor came in to conduct my exam and she determined based on what she was seeing that I should be discharged by late afternoon. I did end up being discharged around 4pm that evening. Again, everyone was thinking the symptoms I was having were normal based on what my body had been through in the past week. As we were leaving the hospital and I was walking slower than most elderly people I recall thinking “is this really what moms feel like after giving birth?”. This was a constant mistake throughout the whole ordeal. I assumed this wasn’t abnormal, this must be what most moms go through after giving birth. How was I to know? Nia is my first child, all of this was so new to me. I looked over at Nia and cleared that thought out with a new one, I need to be strong enough to continue breastfeeding and take care of her; but just walking out of the hospital is exhausting!

When I arrived home, the shortness of breath got a lot worse. Thinking I was overly exhausted from all the activity, I took a nap with the prescribed pain pills that were helping with the discomfort I was still having from my recent surgery. I woke up from the nap to see my friends that had come over. It took everything I had to walk down the stairs, sit on the couch and have a conversation with them. I was breathing even heavier at this point and the chest pressure was increasing. When I spoke to my friends after the whole ordeal they said they thought I was just out of it from the pain pills and exhausted from everything I had been through in the past week. A couple hours later my sister and her family came over. My shortness of breath and discomfort persisted, but I knew I had to try to pump so my milk wouldn’t dry up for baby Nia. I was able to pump and get some breastmilk but it wasn't as much as I had been able to produce in the previous days. My symptoms and thoughts again pointed in the direction of anxiety. At this point we were all thinking that I was anxious because this is my first night home with the baby. I was now having a very hard time even laying down on my back. It started to feel like I couldn’t breathe whenever I leaned or tried to lay flat; I felt like I was drowning. This started to freak me out even more, which probably did lead to some anxiety. My sister, who is a massage therapist, gave me a massage to try and relax me. As she was massaging me she hit a pressure point which felt incredible and I finally had some relief. She told me it was a pressure point connected to the lungs. At that point we didn’t realize I had a lot of fluids building up in my lungs, heart and extremities. Since I couldn’t lay down to go to bed, we tried propping me up in a chair. I was breathing very heavy and wheezing even when I was sitting up. We finally decided to call the on-call doctor to get their advice; it quickly was becoming evident this was not anxiety. The doctor we spoke to said they couldn’t really say what might be going on over the phone and recommended that we go to the emergency room to get checked out. So, we packed up and made our way to the hospital, leaving baby Nia at home with my sister.

We proceeded to the emergency room upon arriving back at the same hospital I had been released from just a few hours earlier. My symptoms had escalated, I was exhausted and frightened to say the least. I literally couldn’t lay back without feeling like I was drowning. I was sent in for another CAT scan with contrast dye, only this time to evaluate my heart and lungs. They then drew my blood to check my BNP levels which shows the amount of fluids that are in your lungs, heart and extremities. I was told a normal BNP level is under 100 and I was measuring around 3,000 for the levels of fluid. This led the ER doctor to the conclusion I most likely have Postpartum Cardiomyopathy (heart failure). Postpartum Cardiomyopathy is a condition where the heart enlarges and becomes unable to pump sufficient blood to support the body. With Postpartum Cardiomyopathy the heart cells become damaged through an inflammatory process. A woman can go from healthy to complete heart failure in hours, days, weeks or even months after giving birth; sometimes while still pregnant. When the doctor said this is very serious and some people die, I remember almost chuckling and thinking “well I’m not dying from this!!”. It was just a ridiculous thought to even consider. There was no way in hell after all of this and finally having my baby girl Nia that I was going to die! They immediately started me on some diuretics to help with the removal of some fluids and sent us via ambulance to another hospital’s ICU where they had Cardiologists and the proper equipment necessary to help me. I remember making the terrifying call to my sister who was home with Nia and my parents. I had set her up as my health directive 10 years earlier. I had to tell them how serious this was and remind them that they will need to make decisions on my behalf in the event I become unable to do so.

In the ICU it was really hard to even have people in the room because I still felt like I was drowning and was completely claustrophobic. After
they completed an echocardiogram that took pictures of my heart the Cardiologists confirmed the ER doctors diagnosis, it was Postpartum Cardiomyopathy. This was a very scary diagnosis, but at the same time I was relieved to get some answers and a name to what was going on. This confirmed it was not just anxiety from being a new mom. Although they don’t know for sure what caused my Postpartum Cardiomyopathy, they believe it was due to the acute stress my heart and body was under with the pregnancy complications including: preeclampsia, blood loss, abdominal wall hematobins, blood transfusions, ileus and the two surgeries within a few days of each other. I stayed in the hospital for the next few days until we could get enough fluids removed. When I was released from the hospital my BNP was closer to 500 instead of that whopping 3,000 it was at in the emergency room.

I am now on the road to recovery with a low sodium diet, fluid intake management, cardiac rehabilitation and with prescription drugs that are working on repairing my heart. My heart was pumping blood between 30% to 35% due to the enlargement and stress whereas a normal heart would pump around 55% to 70%. I will be getting this checked again after three months of being on the medications.

I sincerely believe I will be one of the lucky ones and fully recovery from this. However, not everyone does. Thank you for all of your thoughts, prayers and amazing gestures you have shown to both myself and my family. I hope my story sheds some awareness on Postpartum Cardiomyopathy. I now know it’s a very rare disease which a lot of healthcare professionals don’t immediately look for since it mimics so many of the same symptoms as a regular 3rd trimester of a pregnancy.

I had been very lucky for 36 years to never experience a serious illness or hospital stay. During my time in and out of the hospital I couldn’t stop
feeling so bad for other people that have to go through something this traumatic and life changing without the support around them that I am so very fortunate to have. We were told that within an average 3 day stay in a hospital a patient will see 47 hospital workers. The amount and type of information being thrown at you can be completely overwhelming to someone in good health let alone someone with a serious illness. Here are my top 5 tips that I hope you will find helpful if you ever find yourself staying in the hospital longer than you expected:

#1 No one knows your body like you do

-A medical professional can take and read your vitals. They do not know your symptoms, only you do! Listen to your body and be able to describe
your symptoms with the most detail possible. If something isn’t helping you feel better be vocal and describe what your experiencing. Again, no one
knows your body like you do!

#2 Take control of your care, be your own advocate

-Since you’ll be receiving a lot of new and unfamiliar information you will want to make sure you have a pen and notepad or cell phone to take notes and complile questions. You can also use your cell phone to record the conversations so you can go back and listen to them. Googling all these new terms you have probably never heard of in your life will help you understand what the doctors and nurses are saying. You can track your medications to help you grasp how much and when you are taking them. Tracking is extremely helpful for pain medication management to help you wean down or off your pain medications during or after your hospital stay. Don’t feel stupid asking the doctor to repeat themselves or even to spell something out for you. Remember, knowledge is power and a key factor in your recovery. Ask 1 or 2 family members or friends to join you in the hospital when your doctor is meeting with you the more ears the better. Plus, they might have a better grasp or more experience on medical concerns than you do.

#3 Stay positive no matter what

-I know this is easier said than done, but staying positive is crucial for your future recovery. Whether you think you can or you can’t, you are always right. This Henry Ford quote couldn’t be more true when you are fighting a serious illness. You’ll have low points that will try to shake you. You might even have some healthcare professionals that are horrible…learn from them. You will have some amazing healthcare professionals…cherish them as those are the ones that will be your support in this fight. You need to stay focused on your recovery. A positive mindset is one thing that is completely in your control when so many other things are spiraling out of control.

#4 Let go of control outside of the hospital

-This is the time where you need to learn to trust your support squad if that is friends, family, neighbors or co-workers. Again, your main focus needs to be on your recovery. Don’t feel bad about everything that your support squad is doing for you and your family. This is when you’ll start to understand that people genuinely want to help and asking for and allowing help will help you recover faster.

#5 You can say NO to visitors and updating everyone on your progress

-This is the time where you should appoint 1 or 2 people to update your main support squad. You can also have them start a Caring Bridge page if that is easier for everyone. You don’t have the time and energy to update everyone and yield all the questions when you are still trying to seek and understand the answers. Your focus again needs to be on your recovery. Don’t feel bad about being selective with your visitors. You can’t spend time and energy comforting others about your diagnose. Remember this your crucial recovery time in the hospital.

****INCREDIBLE UPDATE*****

I RECEIVED THE INCREDIBLE NEWS ON 12/6/17 THAT MY PUMPING FUNCTION HAS FULLY RECOVERED!!! IN JUST OVER 6 MONTHS MY HEART'S EJECTION FRACTION (EJ) WENT FROM 30-35% TO 60-65% WHICH IS IN THE NORMAL EF RANGE!

As the nurse read me my results as I was on my phone sitting in the parking lot of the hospital to go to my regular cardiac rehab workout, the tears poured down my face. These were tears of the utmost gratitude. The recovery period is different for every woman that has PPCM and some lose their battle or never recover. I'm so grateful to be one of the lucky ones to get these results. I hope to continue to build awareness and help other moms fighting the PPCM battle. Thank you to all of you that have supported me through this!

Here are my top tips to help you in your recovery:

#1 Believe you can and will recover

#2 Don't wait to take action

#3 Build a support team that will help you through your recovery

#4 Speak up about how you are feeling

#5 Keep adjusting your medications until you have the perfect combination to get you feeling your best

#6 Switch to and stay strict on a low sodium diet (2,000 MG and lower)

#7 Start cardiac rehabilitation as soon as possible

#8 Stay positive no matter what

#9 Do not drink any alcohol

#10 Educate yourself on PPCM & Help others where you can

My Details

• Date Diagnosed: 29/05/2017
• Child: 1
• Initial EF: 30%-35%
• Current EF: 60%-65%

Story By

Katie Farley

Contraception and reproductive counseling in women with peripartum cardiomyopathy https://www.ncbi.nlm.nih.gov/pubmed/28578148

and Depression and health behaviors in women with Peripartum Cardiomyopathy  http://www.sciencedirect.com/science/article/pii/S0147956317300146

And she extends her heart felt thanks and wants women know that their time and participation in the study led to new information that will be used to inform healthcare professionals about the health and quality of life issues PPCM survivors experience as well as facilitate the development of new and effective treatment interventions to improve the quality of life for women and their loved ones.

Lindsey's email below -

Good morning, About a year and a half ago, I contacted your organization regarding my study at East Carolina University titled, The Peripartum Cardiomyopathy Quality of Life Registry. Your organization was very enthusiastic about the research and allowed me to post about the study on your website, and played a critical role in study recruitment. Your efforts allowed us to collect important quality of life data from one of the largest samples of PPCM survivors in North America and conduct an in-depth examination of the emotional, physical, interpersonal and quality of life needs of PPCM survivors. Since the study ended last year, we have been busy going through the data and preparing manuscripts for publications based on registry data.

I am pleased to inform you that we just had two manuscripts accepted for publication in peer-reviewed medical journals. I think it’s incredibly important to let women know that their time and participation in the study led to new information that will be used to inform healthcare professionals about the health and quality of life issues PPCM survivors experience as well as facilitate the development of new and effective treatment interventions to improve the quality of life for women and their loved ones. We hope that these papers and future papers based on registry data will fulfill this important goal. If you have any additional questions or comments, please don't hesitate to contact me at any time. I am now a fellow in Cardiovascular Behavioral Medicine at the Yale School of Medicine.

Again, I cannot thank you enough for your enthusiasm and support.

Warm regards,

Lindsey Rosman, Ph.D. Research Fellow,

Cardiovascular Behavioral Medicine Department of Medicine Yale School of Medicine New Haven, CT 06520

I should have been more assertive. I should have been that patient that raises hell. I should have called my mom.

But let’s go back.

Everything with my pregnancy was going spectacular. Yeah, I couldn’t sleep, but who can while pregnant? While my belly was big, I had only gained about ten pounds. My blood pressure was good. My cravings were fruit and milkshakes, fairly innocuous and also delicious.

All that changed when I went to my 34-week appointment.  On of the doctors in the practice came in and said that she wanted me to lay down on my left side for a while, because my blood pressure was 160/102. I did, and it went down to 140/88 in the next couple minutes. Just in case, she wanted me to go to L&D to get some labs to make sure I didn’t have pre-eclampsia.

The blood pressure went up again once I got the hospital (170-something/something), probably in part due to the fact that they were asking me questions like, “So I don’t think they’ll induce you tonight, but do you have a car seat just in case?” But, it dropped. Urine good. Blood panel good. Liver enzymes good. Perhaps this was a freak occurrence.

It wasn’t.

Over the next six weeks, I went to the doctors nearly twice a week for regular appointments and blood pressure checks. 136/90, 142/96, 126/82, 138/80, 183/121, 150/90,  170/110, 180/120. These are the blood pressures I recorded in texts between myself and my husband and parents. Twice I took myself to L&D. Each time, I was sent home as soon as the pressure went down and blood panels came back clear. The others were taken during my doctor’s appointments. I got very familiar with “Lay down on your left side, and we’ll see if this goes down.” At no time did anyone mention blood pressure medication. At no point did anyone mention inducing early, or even just inducing on my due date. At no point did anyone note that I gained five pounds in one week, when previous to this, I had only gained thirteen pounds over the entirety of my pregnancy.  I should have been more assertive.

Rory was eleven days late. She arrived via C-section. She was perfect.

Two nights later, my last night at the hospital, I sent my husband home to be with our dog and get his last good night of sleep. I sent Rory to sleep in the nursery, and unknowingly, prepared for one of the worst nights of my life. It started with a cough. A really bad cough. A deep, from the bottom of my lungs cough. Then came a pressure in my chest. When I tried to lay down, it felt like there was a giant bowling ball sitting on my chest. I could. not. get a deep breath. And the coughing! Between the two, I couldn’t really breathe.

I tried every position. I tried every location in the room. I was not going to sleep. Soon, that was the least of my worries. I was getting scared, because breathing is, ya know, essential.

My nurse came in to get me to nurse Rory. I told her something was wrong, I couldn’t breathe right. She gave me Rory and said she was sorry I was getting a cold.

You know what you don’t want on your chest when you can’t breathe? An eight-pound, three-day old baby.

But I tried to nurse her. When the nurse came back in, she took Rory and I said, no seriously, this cough is really bad. She said she’d tried to get me some Robitussin.

While she was gone, I did what any modern woman would do. I googled it. You know what comes up when you google “postpartum shortness of breath”? Yep, peripartum cardiomyopathy.

When she came back in with my Robitussin (and tea!), I showed her my results. She ignored them and left. Side note: Robitussin and tea really do not cure heart failure. I should have been that patient that raises hell.

At this point, I was really scared and also feeling stupid at the same time. Up until this point, I really trusted medical professionals. My mom is a nurse, my husband was a clinical technician. I come from a nursing family. So, if she said I had a cold, I probably had a cold. But I couldn’t ignore my gut feeling that I needed to see my husband, because I wasn’t going to make it through the night.

I called him. The phone didn’t wake him up. He still feels awful about that to this day.

I should have called my mom next. It wouldn’t have been quite Terms of Endearment. But she would have got. shit. done.

Instead I waited it out til morning. Once I gave up on sleep and sat up for a few hours, I started to feel better. I ignored that nagging voice in the back of my head that said that the article I read about peripartum cardiomyopathy said people felt worse at night when they tried to lay down.

We took Rory home that morning.

I was surprised how much the C-section was kicking my ass. I could only take two laps around the living room with her before needing to sit down. I had to pause at the top of the steps and take a breather before getting something from her nursery.

The cough started again in the early evening.

It continued all night. I tried Robitussin. (Still doesn’t cure heart failure.) At two in the morning, my husband had finally fallen asleep on the couch, when Rory was fussy again. I couldn’t sleep anyway because of the damn cough, so I decided to take her upstairs to her nursery and rock her in her rocking chair. The bone deep, rattling cough woke my husband as I started up the steps. Part way up, I felt something wet come up the back of my throat.

At the top, I took a few steps to bathroom and spit out blood into the sink.

I very weakly called down to Ryan, and things moved quickly from there. He saw the blood, took Rory, and pushed me into the rocking chair. He put her in the crib and told me not to get up, even if she cried. He ran around the house, looking for a phone and his pulse-ox while I coughed violently into tissues, soaking a couple dozen with blood.

The pulse-ox read that my pulse was in the 140s and my oxygen level was in the 80s.

The ambulance took me away just a few minutes after my parents arrived to take care of Rory. I’ll never forget the look on my mom’s face.

We went to Sewickley, the hospital I delivered at.  After weakly trying to get out the bed with about a dozens wires and tubes coming off of me to get to a bedside toilet to pee with two minutes of the Lasix, I was never more thankful for a catheter. Doctors determined that I needed an echocardiogram like NOW, and I was not going to be able to get one at Sewickley at three AM on a Saturday night. So, I was back in the ambulance being transferred to Magee Women’s Hospital to see their specialty doctors.

At this point, things get a little blurry. At one point, I fell asleep in the middle of talking to a specialist. (Mind you, I had been up for nearly 48 hours straight at this point, and just had like a gallon of fluid drained out of me.) She asked questions that, perhaps, you too are asking. Your blood pressure was how high and they didn’t do anything? You gained how much weight in such a short period of time and they did nothing? You told them you couldn’t breathe and they gave you tea!?

Questions asked and answered, and she told me that she had a tentative diagnosis of peripartum cardiomyopathy. The diagnosis became definite when they echocardiogram came back that my ejection fraction was 35.

I spent five days in Magee. I was poked and prodded by teams (TEAMS!) of cardiologist and maternal fetal medicine doctors. As you all know, PPCM isn’t something you see every day, so I was a good teaching case, which meant 15-20 people in my room at any given time. I can’t remember how many times I was told that my C-section looked amazing.  I had no clue who my official doctor was. Honestly, I didn’t even care. Being taken from my daughter while she was only four days old hit me hard emotionally. I cried a lot. I was afraid she’d forget me. I was a mess.

And it was only just the beginning.

I went home. Ryan doted over me furiously. I slept a lot. I still looked like hell, but I was starting to feel a little better. Less than forty-eight hours later, I was even going to my friend’s baby shower in my pre-maternity clothes! Well, that is, I was going until I sneezed. Remember all that coughing I did? Remember how amazing my C-section looked? It’s all coming back here.

I need sound effects to truly describe this, but I’ll try. I sneezed and felt a pop, then an unzipping sensation across my lower abdomen. In my bra and underwear, horrified, I pulled up my fabulous postpartum belly-shelf to see my C-section incision. Instead of stitches, I saw stomach fat. My entire incision had ripped open, and now my insides weren’t inside anymore.

Stunned, truly and honestly in shock, I called down to Ryan, who came upstairs anticipating a water leak. He was sort of right.

Parents called, dog put in the back yard, we waited. He told me to get dressed. HOW? I asked. Something tight and stretchy. Hello, maternity leggings! I hobbled down the stairs and waited leaning against the couch, hoping I wasn’t going to puke. It didn’t hurt yet, but it would. Oh, it would.

My dad didn’t want to see. My mom, being a nurse, did. This is how I knew it was bad. My mother, the nurse, lost all professional cool. She yelled, she gasped, she turned away. It would have been a little hilarious if the pain hadn’t been starting. Between the only time I looked at it and then, there was more stomach fat and a little intestines out, and there was bleeding.

They helped me hobble out to my husband’s truck, and I climbed in (!!!). We drove down the bumpy (!!!), construction-ridded (!!!) road that took me to Sewickley again. I hobbled down out of the truck (!!!) and got into a wheelchair.

To add insult to injury, while I patiently waited my turn in the waiting room, a 20-ish-year-old bro came in because he had a scratch on his arm, yelling loudly on the phone about being a doctor’s son and how he needed to be seen. They took him first. Before he went in, I wanted to pull down my pants and show him need-to-be-seen.

I was quite the sideshow in the emergency room. Half the people used to work with my husband, so they came to visit (while I looked my very best!) C-section evisceration is really rare, too, so some fellows wanted to come see it. One of my OBGYNs came down and ended up talking about dogs. I was entirely used to the poking and prodding by now and just waited desperately for the morphine to kick in.

That surgery would have kept me in the hospital only one day if it hadn’t been for my heart issues. I ended up there for three days, again sobbing over missing my little girl. The pain was worse, too. They really went to town making sure that C-section didn’t open up again. I couldn’t sit down to pee without shaking from pain for weeks. While I was there, I had chest heaviness at night again and the monitor showed non-sustained ventricular tachycardia (thanks for the lingo, mom), which led them to a second echo. My EF was at 30, and I was recommended to wear a life-vest in case I went into cardiac arrest. Thankfully, that was deemed a little too aggressive after only a week.

That’s about the end of my story. We did the math. The chances of both peripartum cardiomyopathy and a C-section evisceration is about 1 in 14 million. (I feel so special!) I can’t have anymore children, which will probably make me sad some day, but not today. I am on very aggressive doses of Coreg and Lisinopril. Even so, a year later, my EF is only back to 45.

So I leave you with the same advice I started with.

Be assertive. Be that patient that raises hell. And, if you can, call your mom.

My Details

• Date Diagnosed: 28/05/2016
• Child: 1
• Initial EF: 35
• Current EF: 45

Story By Blaire Lasko

They switched me to Labetalol during pregnancy because propranolol isn't recommended. My whole pregnancy was great. Minor swelling in my ankles, blood pressure was always good. Delivery went well also, it was actually the easiest delivery I've had. The only difference was I had strep-b during this preganacy and was given 15 BAGS of the medicine that they have to give you. They started the meds as soon as they started the induction process (which took a while). My daughter had jaundice so I was in the hospital for 5 days total. After I went home my BP increased. I took at Walmart and it was 170/110. Got a home blood pressure machine and called my OB the next day. They brought me in and increased my Labetalol, told me to follow up with my primary care. My primary care dr. put me on lisinopril. I felt AWFUL.

Went back and asked to be put back on the propranolol that I was taking post pregnancy. I was taking 10 mg lisinopril once a day and 10 mg propranolol 3 times a day. I also went to see an endocrinologist because I knew my tsh levels were dropping again. Sure enough they were, but my t3 and t4 were fine. My endocrinologist suggested that I saw a cardiologist because she couldn't blame my heart problems solely on my thyroid. Well yesterday I found out I have cardiomyopathy with an EF of 45%. My cardiologist didn't seem too concerned about it. Im 5 months postpartum and really the only symptoms I have are pvc's and sometimes shortness of breath. He did increase my propranolol to 15mg 3 times a day. And I go back in a week for a stress test.

What's aggravating to me is since giving birth, I've been to the ER twice. The one dr. flat out told me that I didn't have cardiomyopathy. That he has seen PPCM before and I didn't have it. I will say they gave me a chest x-ray and my heart size was normal. ECG results came back with possible LVH. Which in now know was more than likely the cardiomyopathy. I'm so blessed that this has now been diagnosed!! My life is without a doubt in the Lord's hands. I give him all the credit in keeping me safe and alive to be a wife, and a mother. I'm praying that with lifestyle changes (exercising, juicing, supplementing) and taking my medicine I will make a full recovery. Has anyone else experienced thyroid issues along with PPCM?

My Details

• Date Diagnosed: 23/03/2017
• Child: 3
• Initial EF: 45
• Current EF: 45

Story By Sarah Rutherford

The entire pregnancy was rough. I was 40 years old, been on all types of IVF meds, got gestational diabetes so bad that even the insulin wasn't enough, and diagnosed with preemclampsia towards the end.

Fast forward to week 35, I was dilated 3cm for a few days until BAM, barely made it back to the hospital, having the twins naturally within 20 minutes of arrival. so the birth was traumatizing enough. It all went down so fast I had major anxiety.

the next day I went home since I had no babies to take care of. I was still on the blood pressure meds. The day after that I couldn't breathe. I chalked it up to bad anxiety, being the surrogate and all, having to give the babies up, etc... so my friend took me in to the ER.

Right away they did an EKG and ruled out heart attack. Then came the news, originally they had told my husband the wrong EF stating if I even pulled through I would need a transplant, to get family out there for goodbyes, etc... imagine his reaction let alone mine. I thought I was going to die and thought, I just gave the gift of life, what kind of karma is this?

well, my EF was actually 25-30%, spent a week in ICU and finally went home with my lifevest. I'm now mere weeks away from getting retested and seeing where my EF is now. I'm very hopeful that I'm on my way to a full recovery as I notice I can run up my stairs now, i'm fully functioning at my full time job, things like that where I know I'm not as bad as when I first came home and couldn't move for weeks.

I'm happy to share my story as it's been a rough few months and i'm hopeful I can live a normal life someday. I still have nightmares each night and can't sleep well, i'm hoping that passes with time as well.

Thank you all for the stories as it really helps me cope.

I have so many questions for those who have fully recovered if anyone can reach out to me.

Love to all my heart sisters,

Jill

My Details

• Date Diagnosed: 24/12/2016
• Child: 3
• Initial EF: 20-25
• Current EF: 40-45

Story By Jill McGee

I drive there to get the bad news. He tells me you have peripartum cardiomyopathy, congestive heart failure. I had a blood clot on my heart, my heart never shrunk back to normal from my pregnancy, my whole body was failing on me, I was retaining water in my lung. He said it would be best to be admitted to the hospital and asked did I have somebody to watch my son. I'm so glad i have My family for support. I was admitted For a week. I was put on about 8 different meds. Water pills, blood thinners, heart meds, even had to do injections in my stomach. Good thing I was going to medical school, one thing my family couldn't help me with  because they are to screamish. I had to have a life vest just in cases. Months go by, my blood clot has gone away, stopped retaining water. Check my heart again, I'm at 20-25. My doctor tells it's time to get defibrillator. I'm 19 at the time so of course I don't want that. I ask can we wait longer and see if it continues to improve. Well it didn't. October 2015 I get defibrillator implanted. I'm very small I don't even weight 100, that was the worst thing ever. I was in bed for about two weeks. I couldn't get out of bed without assistance. I'm glad my family and boyfriend was there  help me. I finally recover from that. I'm young and I haven't even had any time to live. It's  really depressing to know you have a heart condition at such a young age.

I pray and pray that I can get a miracle and my heart would be heal. June 2016 I get another echo done. August I get my results. My heart improved a little more. I  am now at 40-45. That is Like the best news I had gotten in a while. I pray one day my heart will get all the way better. I love kids and I've always wanted to have multiple. I'm so grateful for my son now, but I would love to have more. The feeling of being pregnant was the greatest feeling ever. I hope one day, I will get that feeling again and be able to have another child with no complication. ppcm is such I rare condition and it isn't talked about enough. If we caught this early on, maybe I would have got the treatment I should have gotten and I would have never been so weak and struggling to recover now. But that is my story. I have faith one day my heart will be back to normally and I can live my life how I want to live my life. Keep fighting and never give up.

My Details

• Date Diagnosed: 30/12/2013
• Child: 1
• Initial EF: 5-10
• Current EF: 40-45

Story By Netia Smith

i have a icd placed aug 15 2016. Still being treated

My Details

• Date Diagnosed: 24/04/2016
• Child: 1
• Initial EF: 10
• Current EF: 10

Story By Kristin Mau

I don't remember anything about my baby the first year. I remember pain, exhaustion, doctor's appointments, gall bladder surgery and a host of friends who lifted my baby for 8 weeks while I recovered. I look at pictures of him and think, "wow, he's so cute! he was a good sleeper too. what was it like to hold him?"

I eventually healed physically and emotionally, with the help of my therapist and time, and vowed to never get pregnant again. I would hold all the babies at church, teach preschool Art for my toddler fix, and then go home to meet my only child--the third generation "only" in his Dad's line.

12 years later I finally thought I might be able to do this. Older, heavier, but infinitely less worried about the non-essentials of infant care. My pregnancy was mostly uneventful until the last month, when my blood pressure went way up(the same as the first time). Two weeks before my due date, we decided to induce labor because of preeclampsia. Things progressed almost the same way, step for step, except this time I didn't dilate at all. Meanwhile, my BP would skyrocket, then go back to normal, then crash when magnesium was injected--to prevent a stroke.

The baby came into the world via c-section, stretched his full length for the first time, and seemed to be relieved to be out of his cramped apartment. My recovery, stitches, etc was so much better, with daily monitoring of my blood pressure to be safe. I was so happy that relatively little had gone wrong--sure, I hated being hooked up to 13 different tubes and monitors for so long, but that was a small price to pay for not having a stroke and getting a baby out of the deal.

6 weeks later it was thanksgiving week, which to be frank, I overdid it with family visits and late nights. I thought I was just getting a bad cold--bronchitis, maybe, when we got home from dinner at my parents' house. I coughed all night long, sitting propped up in an armchair and breastfeeding every couple of hours. I went to my GP that morning, and was told I had asthma, and that my lungs sounded fine. It felt like a wad of phlegm was stuck in the very back of my throat that would not go away.

I spent another sleepless, miserable night coughing until I retched, with nothing to show for it, only being able to say one word at a time before taking another breath. I called my doctor again to say this wasn't normal, and she recommended going to an urgent care center if decongestants didn't work. I nursed the baby one more time, then drove myself to the closest urgent care. I didn't want to wake up the baby and my husband to make a 10 minute trip.

It was like an exponential deterioration. Getting from the car to the front desk was agony, giving my name and information was nearly impossible. almost right away, thankfully, the staff took me back and determined I needed to go to the hospital asap. My first ride in an ambulance, yay! In the ER, my O2 levels were very low, my lungs were full of fluid and I thought I just had really bad pneumonia.

It wasn't until that night in the ICU that a cardiologist said I had peripartum heart failure. I was hooked up to a cpap machine to fill my lungs, which made me panicky and claustrophobic, and I was scared about not being able to pump and getting sicker with mastitis, not having enough pumped milk for the baby at home, scared I might die. A nurse said it was "really important for me to calm down." I couldn't answer with a tirade of expletives because I couldn't breathe, so I said GIVE. ME. XANAX. THEN. They got a breastpump from the maternity ward, and notes from the lactation consultant about how often to use it, but it was another two days before I was able to talk to an actual person, in person about how to wean myself, because the medications for my treatment were not safe for breastmilk. "You could pump until you don't need the medications any more, and then resume..." she said. No, I said. Best decision of my life.

My heart is back to normal now, praise God. I have a lot of other health problems because my body REALLY HATES BEING PREGNANT and tells me so. This time I will listen, and enjoy two boys who made all this suffering worthwhile.

My Details

• Date Diagnosed: 28/11/2015
• Child: 2
• Initial EF: ? 30
• Current EF: 53

Story By Marykate Newcomb

Please feel free to reach out to me.. my email is taraareyes@gmail.com

My Details

• Date Diagnosed: 13/10/2015
• Child: 1
• Initial EF: 26%
• Current EF: 60%

Story By Tara Reyes

Having an undiagnosed pregnancy (aka Cryptic pregnancy or hidden pregnancy)  is horrible and I wouldnt wish it on anyone. It also puts me in the precarious position of trying to be taken seriously when I question medications and procedures which could adversely affect the baby, ok fine, if there is a baby. My ob/gyn has sent me back to the PCP for Medical Clearance because of the blood pressure. The ekg revealed the heart attack and now Im being scheduled for a stress test and echo sonogram.

In addition to all that I am about to turn 57 and before this was in relatively good health.

My concerns for undergoing a stress test when my body is in obvious stress already is uppermost along with nuclear crap I have to have to do the diagnostics. Of course a pregnant woman wouldnt be expected to go through this. I am just here for info and support. I know my story is unbelievable but it is my experience as honest as it gets.

Thanks for listening

My Details

• Date Diagnosed: 19/10/2016
• Child: 4
• Initial EF: 50
• Current EF: 50

Story By Jill James

After my 5 days in the hospital I came home and resumed recovering from a c-section, adjusting to being a first time mom, and processing my experience.  I vacillated from terror to disbelief to confidence I would get better.  After all, I've never been sick, had no previous heart problems (and had a totally healthy echo 6 years ago!), have no family history of heart problems, and am thin, healthy, active, vegetarian, etc...I just couldn't believe it. Then I would have moments of total darkness and fear, where I would imagine my heart slowly getting worse and dying and leaving my new son.  It was definitely the first time I'd really had to confront my own mortality in any real way. There were some very overwhelming and scary moments. Slowly, over the past 6 months, I've shifted away from obsessing about my heart and my health to trying to resume my normal life. I had a cardiac MRI about 6 weeks after my diagnosis, which thankfully showed normal EF (50), no scarring, normal heart size, and normal heart function. All my doctors concurred my case was very mild, luckily. I am due to have a follow up echo this month (now almost 7 months post partum).  I feel totally normal with no symptoms at all, so hopefully it will be normal. I'm still on my medications but my doctor says I can go off after my heart function has been normal for a year.  That seems like a long time to be on meds when my heart is back to normal, but I will trust my doctor, and I'm on tiny doses so hopefully there are no adverse effects.

My newest struggle is that I've always wanted two kids, and now I am faced with having to decide whether to attempt a 2nd pregnancy.  I would wait at least a year anyway, but I'm an older mom and need to move things along if that's what I want.  I just don't know if it's worth the risk.  Chances are things would be fine, but what if they aren't? Do others of you struggle with this as well?

All in all, I am happy that I appear to be healing and will just try to be grateful for that, and for my beautiful, healthy son.

My Details

• Date Diagnosed: 14/04/2016
• Child: 1
• Initial EF: 47
• Current EF: 58

Story By Amy West

My name is Lacey. I live near Portland Oregon. I am a wife and a mother. I have a 3 (soon to be 4) year old son and a 4 month old daughter. I was diagnosed with PPCM on July 5th 2016. I have had no prior heart complications nor have I had any inclination that I had a heart problem. I have been a pretty healthy person my entire life. I love to workout, play catch with my husband and kids, go camping, fishing, running, lifting weights, riding my bike. I used to ride my bike 5 almost every day as a teen living with my best friend. I grew up in the country doing country girl things. I got married when I was 20 years young :) I was one of the lucky ones who got to marry her first and only boyfriend and best friend. We have been married for 8 wonderful years. almost 3 years into our marriage we (well more or less my ovaries) decided it was time to have a baby! We got blessed with my amazing son who is the light of my life. He has such a dorky and outgoing personality just like his dad. Then 3 (almost 4 years) later we decided to add to our family because we both felt like God had someone else he wanted to bless us with and that's when we got pregnant with our daughter who is currently 4 months old. She is beautiful and a diva just like me lol. She's a high maintenance little thing ;)

Flash forward to a month ago, we were all packed to go on a 3 week road trip with my husbands family to go to the Dakotas with many stops along the way. We started off in Mt. Rainier, Wa and stayed 4 nights 5 days there and we had a blast! We have many great memories from that first stop along the way. Then when it was time to head to our next destination (Spokane, Wa) we packed all of our stuff up and got on the road. We were a few hours into our drive when my brother in law got into a roll over car accident pulling his camping trailer. In the truck was also my sister in law (bff) and 3 of my nephews- aged 6-9 years old. Everyone sustained injuries- some worse than others, but bad enough for my husband and I that we decided to end our trip with the family and head back home with everyone who was in the accident to help care for them. We got to Washington on the 2nd of July. **I don't remember getting to my sister in laws house, which is where we stayed. So I asked my husband. I don't remember the days between the 2nd of July to the 8th maybe the 9th of July. I get little bits and pieces of things that happened but not much.**

Flash foward again to July 5th, sometime during the evening I got up to use the bathroom at my sister in law's house. Someone had plugged the downstairs toilet and we couldn't find the plunger so she just sent me upstairs to her master bath connected to her bedroom. I closed the door to use the bathroom and the next thing she heard was a soft thud. She called out my name and I gave no response. She found me just laying there unresponsive. She called for my husband who was downstairs to call 911 because I had collasped. He dialed 911 and they instructed him on giving me CPR. He gave me CPR until the paramedics showed up. The paramedics said if my sister in law hadn't of heard me or they couldn't for some reason call 911 and perform CPR I would have been lying there dead. I was close to going into heart failure. I was admited to the hospital and I was put through many tests and they confirmed that I suffer from PPCM. I was unconsious for 3 or 4 days just in and out of it. I finally started to respond to tests they were giving me, like squeezing my hand, asking me to move my foot. Asking me if I knew where I was, if I had any kids and what their names were. I remembered my husband right away, I remembered I had a son but not his name. I didn't remember my daughter. I thought my sister was a cousin. I kind of remember when Jason told me where I was and why. He told me I was diagnosed with PPCM and that Addy was on formula because I could no longer breastfeed because I was in the hospital and because of the medications I was on. I remember I was more sad about not being able to breastfeed than finding out I had PPCM. When I started breastfeeding I knew in my heart that she was going to be my last baby so I was really looking forward to breastfeeding her but we had complications with it any way so I had a feeling I wouldn't be able to continue but I really pushed for it. I changed my diet for her and everything but her tummy is just so sensitive. She's now on Gerber Gentle for tiny tummies, and she's so much happier than on my breastmilk.

While I was in the hospital I was given an MRI of the heart and it showed I was positive for an enlarged heart. My world fell apart in that hospital. I was trying to stay so strong and not fall apart because that's just who I am as a person. I don't let things bring me down. I have God lifting me up so much with so many other things that I didn't have time to feel the truth that I really do have PPCM. I had never felt the presence of Christ so strongly before I was in the hospital. My husband said he kept praying that I would feel at ease and like I was being hugged by Christ and everyone who was praying for me. That is exactly how I felt. I tried and tried to explain how I felt so many times and I just couldn't. Then he told me what he was praying for and that was exactly how I felt. I felt warm safe arms around me the entire time I was in the hospital.

Its a day by day adjustment getting used to the fact that I DO have PPCM and that I will forever have it unless I take good care of myself. I am now on a low salt diet- no more than 2,000mg a day and I am restricted to one cup of coffee instead of the 2 or 3 I was drinking before. I can't exercise on my own any more unless it is low impact. But I am not restricted to how much I can play with my son, or how many kisses I can give my daughter in a day. I am not restricted to how many times I tell my husband thank you or call him my life saver. I get to wake up every morning and see my little divas whining face because she's hungry. I have the luxury of getting up "too early" with my son, or sleeping in with my daughter. I get to help put my scared 3 year old back to sleep at night. I get to walk on the beach and breath in the salty air. I have so many things that I get to do still. I am alive. I have air in my lungs. I have Christ in my heart. I am surrounded by so many people that love me and were there for my family and my home when we were away. I have so much to live for that God knew it wasn't my time to go to my holy home. I am so thankful for that.

My Details

• Date Diagnosed: 05/07/2016
• Child: 2
• Initial EF: 20
• Current EF: 20

Story By Lacey Atwood

My name is Trina and I was diagnosed with PPCM in April 2015. I was 33 years old and 9 months pregnant. In the mid of my pregnancy, I was diagnosed with bronchitis and pnemonia. I was given an antibiotic and an inhaler. I got better rather quickly and continued my pregnancy. By 7 months, I was always told how swollen I was, more than I should be but my doctor kept dismissing my concerns.

By the time I was 8 months pregnant, the list of symptoms kept growing. Neither my intended delivery hospital or doctor would take the time to listen to what I had to say. Finally at 9 months, I had enough. It was 2 days before my due date and I needed to find out WHY I was unable to breathe laying down, very swollen, and this nasty cough that wouldn't go away. Initially I suspected the bronchitis had returned.

My hubby was taking me to the hospital but instead of going to my intended delivery hospital, we instead went to a different one just to see if they could figure this out. On the way to the hospital, it became impossible for me to breathe and an ambulance had to pick me up at the grocery store parking lot. The ER doctor said he thought I had a blood clot in the lungs and took me to get a scan. The results showed no blood clot but something must have caught his eye as he admitted me to L&D. Now shockingly, L&D must've heard something from the ER doc because they ordered an echo and sure enough, results came back that I had PPCM. The dr said I would need a c-section the following morning.

Now somehow, someone disagreed with that dr and was told to get me out of there and to a hospital more equipped. St Joseph's ended up responding to that and said paramedics would be sent over to pick me up. Instead of just paramedics, they sent flight for life. I was taken over to St Joseph's and once again told they would do a c-section the next morning. Well the next morning comes and a high risk dr wouldn't do it. He said he wanted to get my heart rate back down as it was initally in the 150's. The next day was my due date and I was given cervadil which came out later that night. On April 13, they slowly administered pitocin and gave me an epidural. 7 hours, 51 minutes, lots of screaming, begging, and cussing - I gave birth to a healthy 7 pound 3 ounce crying baby in the operating room (no c-section needed). I was later moved to the cardiac unit and 3 days later, sent home.

Now my ppcm has never fully recovered but I'll be going in on August 3 for an S-ICD. My story is far from over.

My Details

• Date Diagnosed: 10/04/2015
• Child: 1
• Initial EF: 20
• Current EF: 30

Story By Trina Hattell