My PPCM story

After a year of trying to get pregnant (with temping, acupuncture, fertility monitors, blood tests, fertility drugs, etc.), my husband and I were finally successful. We would be having a baby girl February 7, 2012.

Tuesday, January 10, 2012
I had my 36-week appointment and received multiple compliments on my fabulous BP.

Thursday, January 12, 2012
I came home from work with a fever and was wheezing. There was a cough going around at work though, so I thought nothing of it.

Saturday, January 14, 2012
I was so short of breath and not improving. I canceled all my plans and just kept trying to chug the liquids to help loosen my cough. When I tried to sleep that night, I felt like I was drowning each time I tried to lay down. I moved to the glider in the nursery, but even that didn’t help. I decided to just stay up the entire night and watch TV. Even walking the 7-feet from my bed to the bathroom was exhausting and I had to catch my breath afterward.

Sunday, January 15, 2012 (Hospital Day 1)
My breathing was getting worse, so my OBGYN on-call doctor told me to go to urgent care and get my lungs listened to. At urgent care, my blood pressure was out of control and we were told to go straight to the hospital.

I was checked into L&D. My blood pressure was nowhere as high, but the hospital decided to do a 24-hour urine test. As for my difficulty breathing, I was put on an antibiotic to get the “yuck” out.

Monday, January 16, 2012 (Hospital Day 2)
I was diagnosed with early stages of pre-eclampsia and given the induction date of Tuesday, January 24. I was released from the hospital and put on bed rest for the week. None of my symptoms were gone when I was discharged. I was told I felt the way I felt because I was pregnant.

Tuesday, January 17, 2012 (Hospital Day 3)
I was lying on the sofa when I thought I peed myself. When I stood up, I found an alarming amount of blood on the sofa – so I went to labor & delivery.

My OBGYN decided the baby wanted to come and broke my water a little after 1 p.m. Within 10 minutes my contractions were already 3-4 minutes apart.

The biggest issue was my breathing and coughing. I lasted 90 minutes (4 cm dilated) without an epidural. Sadly, I had some epidural drama. The first one did not go in well at all. I could still feel everything on my right side. The anesthesiologist clearly knew something was wrong, because he hung around for about 45 minutes. He fidgeted with the needle after that, and it didn’t get better, so he had to redo the entire process. The second epidural stayed in my system for about 90 minutes, but after that the pain returned and didn’t go away – even with several redoses.

I started pushing around 9 p.m., so about 8 hours later. Instead of taking breaks between pushing though, I was coughing and spitting up mucus and trying to catch any breath that I had left in me. I just knew that something was not right. After about an hour my doctor was paged. Before she arrived though, another RN came in to help. At this point, I was begging for a c-section and the new RN kept telling me to keep on going – how it’d be better for me and the baby. The new RN tried to put an oxygen mask on me, which I’m too claustrophoebic for and started freaking out even more, which made my breathing even worse. During the pushes at this point, they would lower the bed for the push positioning, which made the coughing even worse and my pushes got weaker and weaker. Then they'd raise the bed so I could cough and attempt to get any air I could. Brent’s job during all of this was to give me something to spit in to during my “breaks.”

Thirty minutes later, I had so little air that I was seeing spots and close to passing out. When my doctor walked in, she offered me a c-section in less than a minute.

Everything else that night is a blur. I had epidural #3, but I was so exhausted, I fell asleep on one of the doctors holding me up. I didn’t even realize I had been strapped down. I don’t remember Brent coming into the room or even really hearing my daughter, Audrey, cry. When Brentwas holding Audrey, I took one look at her, smiled and passed out. Audrey was born at 11:38 p.m.

Wednesday, January 18, 2012 (Hospital Day 4)
While in the c-section recovery room, I got to hold Audrey and attempt to breastfeed her in between coughing fits and a chest x-ray. Brent and I were busy loving on her, and the grandparents stopped in to see their first grandchild. I was on oxygen and getting blood drawn while Audrey and I were having some skin-to-skin time.

The RN was having some difficulty with drawing my blood (didn’t really have a lot of desirable veins left), so I started paying attention to the abuse of my hand. Then Audrey made this alarming noise, I looked over at her and see her turning purple. The RN grabbed Audrey and ran out of the room with her.

I’m not sure how much time passed. Probably only 5 minutes, but it felt like a lifetime. The RN returned and told us everything was now fine. Audrey did stop breathing, but her heart was still going. She was now admitted into NICU.

When Brent and I woke up that morning, we got wonderful reports on Audrey. So, the new focus was on getting me better. I was still on oxygen and having breathing treatments.

That night, I finally got to see Audrey.

Saturday, January 21, 2012 (Hospital Day 7)
I was released from the hospital that night. Audrey developed a little jaundice though, so we boarded at the hospital since she was being released the following day.

This was my first night off the hospital c-section pain killers, and I got bad fast. The coughing and breathing difficulty increased again…as did the tears. At this point, I chalked it up to hormones and just being hospital stir crazy. It hurt to be at any form of an inclined positioned because I couldn’t get air – so therefore I couldn't sleep.

Sunday, January 22, 2012 (Hospital Day 8)
We were discharged from the hospital on Sunday. Audrey still had some jaundice, but it was improving – so home health services provided us with the necessary equipment.

That morning I cried a lot. I just assumed it was hormones and possibly some post-partum warning signs, so I didn’t read much into it. I still couldn’t get enough air, but I thought that going home would solve that issue.

I went downhill rather quickly once we got home. I was in tears the entire time because I knew something was wrong, but I didn’t know if it was real or in my head. Less than 4 hours later, I was back in the ER.

The ER doctor (Dr. Miller at Shawnee Mission Hospital) was wonderful. I’m pretty sure he knew what was wrong with me just after talking to me. After chest x-rays, an EKG and cat-scan – they discovered I had an extreme amount of fluid in my lungs and I was admitted into the hospital that night and started lasix right away.

Monday, January 24, 2012 (Hospital Day 9)
I met my cardiologist, Dr. Malay, that morning. She said I’d be getting an echo to see if I had post-partum cardio myopathy (PPCM). She briefly described what PPCM is and that if I had it, pregnancy wouldn’t be an option. Then she said she was getting ahead of herself.

Two hours later I was diagnosed with PPCM..

Post-partum cardio myopathy is a pregnancy-induced form of congestive heart failure that happens to 1 and every 2,000-4,000 women. It's a disease that effects the left ventricular ejection fraction (basically you don't produce enough oxygen for your body, causing your heart to work overtime). The cause is unknown, but the strongest theory is that something hormone related happens to the body between the last month of pregnancy and 5 months post partum.

My ejection fraction was at 15%. A normal person's EF is somewhere between 50-60%.

After hearing m diagnosis, my first thought wasn’t about my heart, but about being told another pregnancy wasn’t an option. It was all I could think about. I cried a lot that day.

I was started on a nitro drip.

Tuesday, January 24, 2012 (Hospital Day 10)
I’ve already lost 3 liters of fluid, and most excitingly, I can recline at a position lower than 90 degree (not much lower, but it's a start). I’m also done with the nitro drip, but I did go back on the oxygen.

My cardiologist decided to put me on a LifeVest when I do go home for about a month.

Wednesday, January 25, 2012 (Hospital Day 11)
I started a beta blocker today, and I seem to be doing well with it so far.

Today was the first day I heard the term “congestive heart failure” about my condition. Emotionally, I took a big step backward coming to terms with everything.

I also met up with the nutritionist to start going over my new low-sodium lifestyle.  (2,000 mg a day).

Today was the first time I started thinking beyond the "one and done pregnancy thing" and started thinking about my life and how it would never be the same. I cried myself to sleep most nights in the hospital, but tonight was definitely the worst.

Thursday, January 26, 2012 (Hospital Day 12)
My cardiologist said I'd have a 50/50 shot of going home tomorrow. This is the first time she's mentioned the word "home" so I am taking that as a good sign. This is also the first morning I haven't had to go in for a chest x-ray.

While there’s nothing bad about a chest x-ray itself, it’s just hard. I go into that unit, and I’m surrounded by people at least 40 years older than me. It’s not a fun perspective and it doesn’t make you like life.

Dr. Malay talked to her friend from Yale, who is studying PPCM and decided to put me on the hormone Bromocriptine, which has to shown in studies to help strengthen the heart.

Friday, January 27, 2012 (Hospital Day 13)
I woke up not feeling like myself this morning. I felt more tired and sluggish than I have in awhile. Apparently, I have been given too much lasix, which has worn me out and significantly dropped my BP to 85/58. I’m given an IV to help get liquids into my system, which basically improves my condition instantly.

I’m told I can go home today after the LifeVest people arrive.

While listening to the LifeVest lecture and set up, it’s really hard to focus. I just kept thinking – this is my life now, wearing a stupid vest with 3 defibrillators to keep me alive. The vest is awkward and scary, and you have to carry around a battery pack at all times. My new countdown became when I can get this vest off of me.

Friday, February 10, 2012
I had my follow-up echo today. At this point I was feeling a lot better, and really optimistic about a good EF and losing the LifeVest. Sadly, my EF only went up 6% to 21%.

My cardiologist couldn’t hide her disappointment, which did not help matters. She said she was expecting to see my EF above 40%. She also mentioned that if it wasn’t above this by my 3-month echo, she wanted to start discussing pacemakers. And with my low EF, she wanted me in the vest for 10 more days.

I’m pretty sure I cried the most after this appointment. Brent took the rest of the day off, and we just laid in bed while I cried.

Saturday, February 18, 2012
I am LifeVest free. It felt amazing getting rid of it. The only time I was allowed to go sans vest was when I was showering, so taking baths became my favorite pastime. Sleeping on 2 defibrillators with another one at your side, does not make for a peaceful sleep. The flip side of this was the paranoia of sleeping now, because now I could technically die in my sleep with nothing to save me.

Being without the vest is the best thing for me though. I feel better without it, because I don't have the constant reminder that I am sick.

Thursday, April 26, 2012
I had my echo today and will go over my results with Dr. Malay on Monday.

Monday, April 30, 2012
My appointment with Dr. Malay went as expected. My EF was only between 20-25%, and she wants me to get a pacemaker by the end of May. Thankfully, I had joined a wonderful PPCM support group, and I knew getting a pacemaker this early on is extremely uncommon – so I'll be seeking 2nd and 3rd opinions.

May 2012
I met with a cardiologist at St. Lukes South, and he was in agreement with my support group – since I am improving (even though slowly), getting a pacemaker at this stage isn't the correct path. Dr. Giocondo doubled my beta blocker to see if that would help.

At this appointment I was also informed about a bundle branch block that I have. Basically, your heart has 2 electrical wires – and one of mine doesn't function properly. Dr. G says there's no way of knowing if this was from PPCM or something I was born worth.

June 12, 2012
Today, I had my 3rd-opinion appointment at KU Med. I was the most excited for this one, because Dr. Mulhern actually specializes in pregnancy and the heart – so my condition is common for him.

Dr. M was extremely impressed with how I was feeling and said that multiple times. He said the best treatment for PPCM is medical therapy and time. Starting tonight, I will be on all new medicines (2 new ones, 1 at a stronger dosage).

As for the pacemaker talk, he said that people fail into 4 classes:
- Class 4: getting out of breath while resting
- Class 3: getting out of breath walking across the hall
- Class 2: getting out of breath with minimal/moderate exercise
- Class 1: getting out of breath with exercise

He said he only puts pacemakers in people who fall into classes 3 and 4, and he'd place me somewhere between a 1 and a 2. So for now, he doesn't want to have this discussion.

It was definitely a good appointment. This was the first appointment I've had where I didn't cry afterward, so a big step there. Brent and I both really liked him and are excited to move forward with him.

July 18, 2012
Things are still going great with Dr. Mulhern. I actually see him (or his nurse) every couple of weeks for a medicine dose increase.

Today, after just listening to my heart, he said I was improving. My heart does a gallop thing, where the right side beats slightly faster than the left. When he listened today, he didn't hear it at all. I left today's appointment all smiles.

In medicine news, I'm changing from an ACE-inhibitor to some sort of ARA. The ACE was giving me a dry cough (which only 5% of people get – I love beating the odds).

July 22, 2012
Well, that was fun. I had a bit of a cold, the quickly escalated into a fever – a 102.98 fever that wouldn't break with Tylonel. I started freaking out, because I've never asked any of my cardiologists about what to do with a fever – so Brent called the on-call cardiologist. Thirty minutes later, we were at KU Med...and soon after, admitted into the hospital.

I had pneumonia. I was in the hospital for 3 days. Apparently, with a weakened heart – you're more likely to catch things. And of course, with a weakened heart – you're less likely to fight things off as well.

I got a pneumonia vaccine before checking out. So hopefully, I can cross that off my list for awhile.
September 2012
This was my best cardiologist appointment yet! My EF is now in the low 30s, so my ejection fraction has now doubled. It feels amazing to know that I am actually improving. The pacemaker talk still isn't off the table yet, but I'm feeling more confident I won't need one.
My good days are really outnumbering my bad days now. And while I don't know if I'll ever get all my energy back, I'm catching glimpses of it and loving it.
April 2013
Today's echo showed that I'm still in the low 30s. Dr. M and I decided to double the dosage of my ARA and see if that does anything. My next echo will be in September, and if I'm still flat lined, the official pacemaker conversation happens.
I'm not going to lie, there were a lot of tears tonight. I guess I always just thought I was going to make that full recovery. I never thought when hearing the PPCM recovery statistics, I'd be one of the ones who, well, failed and needed help from a device.

August 2013
I was a guest on the Baby Instructions podcast and discussed PPCM for 45 minutes. It felt absolutely great to get the word out. If I can save women from my own story, I feel like I'm accomplishing something.

September 2013
I've spent the last 18 months running from a pacemaker, and today, I asked for one. Life is weird.

Dr. M didn't know what to do. He considers my energy level to be impressive and not in need of a pacemaker, but my EF has not improved and so my heart could use one. He said that my type of scenario are always the hardest.

I asked him the question I've been avoiding since my diagnosis – how much more likely I am to die right now. He said he couldn't answer that, but somewhere between 1-10%. That is quite a range, and 10% is way to high. That was all the convincing I needed, and I told him I was ready for a pacemaker.

I'm meeting with the doctor who will do my surgery next month.


  1. Ashley thanks so much for sharing everything! You know how much we love you and how strong I think you has thrown challenges at both of us but we have so much to fight for... I am praying that you get good news on Monday

  2. Thank you for sharing your story! Also, I love your blog! We just bought a new house so I'm scouring it for ideas.
    Annette, another PPCM heart sister

  3. Awesome story that I found by accident. I will be a 4 year survivor of PPCM this coming July. It is so nice to connect with other women who have gone through the same thing. There is actually quite a few facebook groups dedicated to PPCM...please join us. I was very upset to learn that I could not have another baby too...but I have learned that you can, in fact, have another baby safely after PPCM. Many women have gone on to have 1 or more babies with no relapse. BUT you need to make sure you pass 3 criteria. 1) Your EF needs to be at least 55% 2) Off all meds for one year and 3) Stress echo with a normal contractile reserve.

    I was back to normal within a year. I have been off all meds now for 2.5 years. The only criteria that I have left is the stress echo. is a great place for support. I hope all is well with you and baby. Don't give up hope. Much love from one heart sister to another.

  4. I wanted to say hello. I have been through it twice. My son Charles was born almost 10 weeks early and I was on a vent for 7 days. And I was on bed rest for 5 weeks with Arianna and a week after she was born, they released me and 12 hours later, I went into the ER, they diagnosed me with pneumonia and then my heart stopped. Wanted to let you know we are out on facebook.

  5. I want to say thank you for posting this as I am going through exactly the same thing as we speak. It is comforting to know things CAN get better. I don't go in to see the cardiologist until Monday so as you can imagine, my mind is racing all over the place with whatever possibility could happen at this point. I had just recently went to the ER complaining of chest pains, shortness of breath, and tightness that wouldn't let up. They had a CT Scan run, a chest X-Ray as well as me being hooked up to the EKG machine and blood tests run. It was not fun at all. Said there was fluid built up on my heart, lungs, liver and gallbladder as I have been diagnosed with Cholestasis of Pregnancy as well. All they told me to do was take an anti inflammatory. Hope all is well with you guys!!