Jul 16
Jrohe
Jrohe , Posted on SUPPORT NETWORK Blog

A New Baby, A New Heart - A Peripartum Cardiomyopathy (PPCM) & Heart Transplant Story

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I had never heard that pregnancy could cause heart failure. That is until one week after the birth of my second child when I was told I was in end-stage heart failure.

My story begins in November 2017. I was 30 years old and had just given birth to my second child, a daughter, with a fairlyeasy labor and delivery. A few days after returning home from the hospital, however, I noticed I was feeling extremely tired. I was a new mom to two children so I assumed it was normal to feel fatigued while caring for a newborn and chasing around a toddler so I didn't worry about it too much. 

One night when I was nursing my daughter, I found that I was having trouble breathing. Having no history of heart issues, my initial thought was a panic attack. Eventually, I calmed down and was able to go to sleep. The next day, however, my symptoms were much worse. I was so exhausted. The last straw came when I was trying to climb a single flight of stairs and only made it halfway up before I had to get on my hands and knees, crawling the rest of the way up. By the time I made it to my bedroom, I had to l lay on the bed for several minutes before I felt I could properly breathe again. 

I knew something was terribly wrong so I packed up my daughter and headed to the hospital where she had been delivered. They checked my vitals and my heart rate was 150. I was admitted that night and after many tests including an echocardiogram, it was discovered that my heart was only functioning at 18% and would likely need a heart transplant to survive.

In the early hours of Thanksgiving morning,  I was transferred to a hospital that was better suited to care for me. While in surgery to place an impella, it was discovered that the right side of my heart was functioning worse than expected and I was placed on ECMO life support. Due to the many complications that can arise from being on ECMO, the team had to work quickly on figuring out the next course of action. Ultimately, I would either be getting a left ventricle assist device (LVAD) or a total artificial heart (TAH). The LVAD was preferable to the TAH because at least I would get to keep my heart. Unfortunately, during the surgery, the right side of my heart was functioning so poorly that they had to move forward with the removal of my heart and replacing it with a total artificial heart. I was then placed on the waiting list for a new heart.

Although the total artificial heart saved my life, it was very scary to have in my body. Not long after getting it I started having internal bleeding that almost took my life had it not been for emergency surgery. Also while I had the TAH I suffered from a bilateral stroke which was a truly terrifying experience.

A little over a month after getting on the waiting list for a new heart and living in the hospital that whole time, I finally got word that there was a heart available for me. It was not, however, a very smooth experience. 

The day I was supposed to receive the heart transplant, the heart was unable to be flown to my hospital due to weather issues. This was discovered while I was already sedated in the OR so they had to tell me that the surgery was a dry run.

The next day when I finally did receive the transplant everything was looking really great. The surgeon went to visit my family and told them how well the heart was beating and that it would just be a couple more hours before they could see me. A couple of hours turned into many hours. My family was eventually informed that right as they were about to push me into the elevator to go up to my room, my heart had suddenly stopped working and that I was being placed back on ECMO life support.

For the next few days, I stayed on ECMO with my chest left open with a wound vac. They were hopeful that the heart would recover on its own but if it didn't soon, I would have to get a new heart ASAP.

Fortune was on my side this time, however, because after doing a washout they found my heart was back to working at close to normal levels. They were able to take me off ECMO. I recovered from the surgery fairly well with no further complications.

Finally, after 70 days in the hospital, I was able to go home at the end of January 2018.

I am over a year out from my heart transplant now and live a fairly normal life. Yes, there a many pills and doctor visits but life is good. I get to care for my children every day, spend time with family and travel.

One of the biggest takeaways I got from this experience was a great appreciation for life. I am so grateful for every day that I get and plan on having many more to come.

I blog about my experience at This Mommy's Heart. Check it out for a more detailed look into my story.

3 Comments
  • JeffBoyce
    JeffBoyce,

    What an amazing story thank you for sharing. You have such a beautiful family!

  • Micgibson
    Micgibson,

    Thank you for your amazing courage in sharing your story and for thriving after your ordeal. HF can happen in women for so many reasons and too many of us are unaware of these cardiovascular conditions that can affect us. Please keep sharing your experiences as life after the first encounter with HF is a new normal for many. All the best to you and your lovely family. 

  • Loscalistar
    Loscalistar,

    Thank you for sharing. You went though so much, I commend you for keeping your spirit through it all. 

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