How I’m thriving after postpartum heart failure

My name is Kyla and I am a heart failure survivor. I am a wife to an amazing husband who is also my high school sweetheart. I am a mom to three beautiful, quirky, fun children who keep me on my toes and going each day. My family is the reason I fought to live and now fight daily to live a good life.  

In 2017, I gave birth to my third child, a beautiful baby boy. My pregnancy was normal, filled with the usual ups and downs, and there was nothing to suggest I’d soon be fighting for my life.

But at 37 years old, I went into heart failure.

About five weeks postpartum, I started having symptoms that were not common for me — shortness of breath, chest pain when lying down, crackling sound in my lungs when lying down and weakness in my legs with some swelling. I went to the doctor, had tests run and was told it was a combination of anxiety, dehydration and exhaustion from having my baby.

But I got progressively worse over the next four weeks. I was finally at the point that I couldn’t keep going. Basically nonfunctional, I went to the doctor again and again, I was sent home. A few days later, I ended up at the ER in our home state of New Mexico. At this point I could no longer walk because I was in so much pain and so swollen.

After 24 hours in the hospital, I was finally diagnosed with peripartum cardiomyopathy (PPCM for short).

The beginning of my PPCM journey

I knew nothing about PPCM at the time, but I’ve learned a lot since. PPCM is a condition in which a mother goes into heart failure sometime in the last month of pregnancy through the first five months postpartum. This condition weakens the heart muscle and causes the heart to become enlarged. As a result, the heart can’t pump blood properly to the rest of the body. This is what was causing all my unusual symptoms — finally, an answer.

PPCM is one of the leading causes of maternal death, but early detection and correct medical management of the condition can make a difference.

After my diagnosis, I was immediately care-flighted to a heart hospital two hours away and placed in the cardiac intensive care unit (ICU). My organs were beginning to fail and my lungs were full of fluid.

PPCM is one of the leading causes of maternal death, but early detection and correct medical management of the condition can make a difference.

Once I got to this second hospital, they worked diligently to save my life, regain organ function, drain my lungs, remove the excessive fluid off my body and stabilize my heart. The hope was that they could get the swelling and fluid off my body and out of my lungs, then give me the necessary medications to help restore my heart.

Unfortunately, my blood pressure was too low and my heart too weak for any medicinal treatment.

I was at the hospital for 10 days before I was stabilized enough to be flown by jet to Dallas (six hours away) to a larger, more experienced heart transplant hospital — Baylor University Medical Center. This transport resulted in the moving of my husband, children and parents to Dallas to be with me.

Related: What it’s like to have a stroke at 30 and pregnant

My emergency open heart surgery

I spent another 10 days in cardiac ICU, where my care team continued stabilizing me and working to get my body and heart as strong as possible to endure open heart surgery. This was the only option left to save my life. 

My condition continued to decline to the point that it became an emergency and open heart surgery was performed to place a left ventricle assistive device (LVAD) in the left ventricle of my heart. The device would allow my heart to rest while pumping blood through my heart and the rest of my body. 

I got stronger and stronger each day until I felt comfortable enough to leave the hospital once doctors said I was ready to be discharged.

Fortunately, surgery went very well and my body responded well to the LVAD. I spent nine days in cardiac ICU while recovering from surgery. I was then released to the recovery floor for another eight days where I had to learn to safely do everything again. Normal activities like how to walk, get out of bed, stand up from a chair, get dressed — in essence, how to function with an LVAD. All this while trying to gain my strength back. 

In the beginning, I had to have help to do everything… Daily, my amazing physical therapists came to do rehab to help to me strengthen muscles and teach me how to take care of myself again. I got stronger and stronger each day until I felt comfortable enough to leave the hospital once doctors said I was ready to be discharged. Finally!

After being released from the hospital, my family stayed in Dallas for another five weeks until I was finally released to go back home to New Mexico.  

Adjusting to life with an LVAD

Coming home as an LVAD recipient to a husband and three young kids has been challenging to say the very least. We have had to make many adjustments to our routine, find our new normal and continue to figure out what I can and cannot handle. 

This challenge changes on a daily basis, as some days I feel better than others. The first year was the hardest because I had to regain my strength and manage the pain before I could even function as a wife or help take care of the kids. As I got stronger, my mommy responsibilities increased little by little.

Now, almost two and half years post-surgery, I am able to do most of the things I need to do as mom to my kids. I still have limitations with my energy level, can’t go swimming with the kids or do water activities, or be outside in the heat for extended periods of time. 

Coping with the emotional side of this journey has been difficult. But we, as a family, have found a new normal that allows us to live the best we can with what we have and me to do what I can to be there for my husband and kiddos.

Related: 23-year-old faces congestive heart failure post-pregnancy

Another part of my journey with the LVAD was participating in the research study for the Heartmate 3 device. When it was determined that I needed an LVAD, the device was still in the trial stage and not fully FDA approved. This meant that if I was to be implanted with this newest device, it would have to be as part of the research study as a clinical trial participant. My doctors felt that this device was the best suited for me in my situation due to factors like its smaller pump size. Plus, if I did in fact recover, this device could potentially be explanted with greater ease.

I trusted my doctors’ judgement and chose to be a part of the trial. I just wanted to get the best chance to survive and live a good life with my family. So, we opted to be a part of the trial in order to have the latest and greatest technology.   

There are no words to express my gratitude to the cardiac teams who fought so hard to save my life. 

I would not be here today if it wasn’t for an amazing group of doctors, nurses and LVAD technology. There are no words to express my gratitude to the cardiac teams who fought so hard to save my life. I am thankful for the technology they used to save me and allow me a second chance to be with my family. 

Every day is a battle. But I am still fighting to live life and make the most of the time I have been given. I am hopeful for recovery, whether that is my heart recovering, long term LVAD or a heart transplant. The future is uncertain, but I am determined to keep moving forward one day at a time… believing that I have been given a second chance for a greater purpose.

I am a walking miracle! 

This blog post was written by Kyla Davis, mother of three and survivor of peripartum cardiomyopathy (PPCM).