My PPCM Journey

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 3 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.  

My PPCM journey begins in February of 2017. At 37 years old, I went in to heart failure with my third baby. The condition is called peripartum cardiomyopathy (PPCM for short).  It is a condition in which a mother will typically go into heart failure sometime in the last month of pregnancy through the first five months postpartum. It doesn't have any other causes or reasons behind why it happens, there are no preset conditions, or predispositions. It is totally random!!! It can happen to anyone, any age, any pregnancy.   

About 5 weeks postpartum, I started having symptoms that were not common for me postpartum; 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 test run, and was told it was dehydration, exhaustion from having the third baby, and anxiety. My heart was ruled out within 24 hours based on a chest X-ray, EKG, and blood-work (all of which had some abnormalities). This was without being referred to a cardiologist.  I got progressively worse over the next 4 weeks.  I was hardly able to eat or drink anything for over 10 days, I was swelling from head to toe, I was having 2-3 hour "anxiety attacks" where I literally felt like I couldn't breathe and needed an inhaler, and I couldn't sleep for days on end. Doctors kept dismissing everything as postpartum anxiety.  Finally additional blood-work was completed. This was a Friday late morning, so results didn't come in until Monday.  When the results were in, the doctor told me to see my primary doctor immediately as many of the numbers were alarming. My mom and I took the blood-work to my primary doctor who sent me to the ER. At this point I couldn't even walk anymore because I was in so much pain and so swollen. When I got to the ER, they began running test and attempting to treat what they thought was wrong with me. It took the hospital over 24 hours to actually diagnose me with PPCM. 

After diagnosis, I was immediately care flighted to a heart hospital 2 hours away and put in cardiac ICU. My organs were beginning to fail (liver, kidneys, lungs were full of fluid), my heart function called ejection fraction (EF), was at less than 10% and I was basically in cardiac shock. Once I got to Lubbock, they worked diligently to save my life, regain organ function, drain my lungs, remove the fluid off my body, and stabilize my heart. The hope was that they could get the swelling/fluid off my body and out of my lungs and then give me medications to help restore my heart. Unfortunately, my blood pressure was too low and my heart too weak for any medicinal treatment. I was in Lubbock 10 days and they were able to stabilize me enough to be flown by jet to Dallas, TX (6 hours away) to a larger, more experienced heart transplant hospital.  

I spent another 10 days in cardiac ICU where Baylor Dallas 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 at this point. No other medical treatments were working. It became an emergency open heart surgery to place an LVAD-left ventricle assistive device (heartmate3 mechanical pump) in the left ventricle of my heart. This would allow the heart to rest while the pump is pulling the blood through my heart and getting it to the rest of my body.  Surgery went very well and my body responded well to the LVAD. I spent 9 days in Cardiac ICU post-surgery floor where basically I was recovering from surgery. I was then finally released to the recovery floor for another 8 days where I was learning to do everything again (walk, get out of bed, stand up from a chair, get dressed, function with an LVAD: safely without hurting myself post-surgery plus I had to gain my strength back). I had to have help to do everything...Daily the physical therapists came to do rehab to help to me strengthen muscles and learn to take care of myself again. I got stronger and stronger each day to where I felt comfortable enough to leave the hospital when they said I was ready to be discharged. After being released from the hospital, my family stayed in Dallas for another 5 weeks for cardiac rehab and additional clinic visits until I was released to go home-home.   

Each week of this journey post-surgery, I have gotten stronger and stronger physically, mentally, and emotionally. I have had to adjust to a new normal and find ways to enjoy life with the limitations (short and long term) that come along with open heart surgery and LVAD. I am hopeful for the future and how my story will play out. This has been a very challenging, scary journey yet God has been with me every step of the way and so faithful. I am thankful to be alive and getting a second change to be with my family and friends. I believe that God will turn all things around for the good (Romans 8:28)! And I believe that He is not done with me yet, my story is not complete, the miracles are not finished.   

If you would like to hear the story in more detail, with the miracles, and the message of Hope, click the link below to listen to the radio broadcast.