Rebecca's Story

My name is Rebecca Stewart and I am a heart failure and cancer survivor. 

Eight years ago, I got the shock of my life... I took a pregnancy test, and it was positive.  So many mixed emotions went into that test. It was a happy first week of marriage followed by the next 8 years being one heck of a roller-coaster ride!    I almost lost my life while delivering a new life. Pregnancy is so hard on the body- more than what most people realize.   We are making tiny humans! We have to make 40- 50% more blood to sustain that life.  I was sick 24/7 from literally week 3 to week 38 at my delivery. I had heart palpitations, high blood pressure, and was borderline of having preeclampsia. I was diagnosed with gestational diabetes and was going to the doctor twice a week for non-stress tests. At thirty-seven weeks and six days, I went in for a non-stress test for Victoria.  I remember I had not slept all week. I was coughing a lot. They were going to give me cough syrup and an antibiotic because they thought I might have had bronchitis.

But before the doctor decided to write out the prescription, a second opinion was offered. The second doctor advised a chest x-ray and an electrocardiogram of the heart (EKG) in the emergency room.  The doctors spotted pneumonia and they saw my heart was enlarged and failing.   I was diagnosed with peripartum cardiomyopathy which is a rare occurrence of heart failure in the late stages of pregnancy and up to 5 months after delivery.  The doctors then induced me and at 6:40 p.m. on November 8th, 2013 and with eight pushes, Victoria was here.

Instead of staying on the labor and delivery floor where mothers and new babies rest, I was taken to the cardiovascular floor at Forsyth Medical Center. The nurses brought Victoria upstairs about 3:30 that morning, I looked at my husband and said, ‘I can’t hold her because I’m so exhausted.” Within twelve hours of delivering Victoria, I went into cardiogenic shock.  I don’t really remember the next couple of days as I was in and out of consciousness.  My heart was not pumping enough blood. A typical heart pumps 55-75 percent of blood to other organs. My heart, however, was pumping at only 10 percent. I was given a 10 percent chance to live.  My husband was told to call the family in and say their goodbyes. 

The nurses made Victoria take a picture with my husband and I just in case I didn’t make it.  The doctors worked tirelessly trying to save me. They put in an aortic balloon pump that was beating my heart every other heartbeat. I was then transferred to the vascular center at Wake Forest Baptist Hospital. I was taken by ambulance while my newborn remained behind. There, I spent 10 days before the team of doctors decided I needed a left ventricular assist device (LVAD). 

Complications can follow. For instance, my lung collapsed after the procedure twice. One of the arteries in my neck ruptured from all the lines going in and out of my neck. A subclavian artery stent was placed to stop me from bleeding out.  The original LVAD became clotted and had to be replaced. Nonetheless the doctors were able to address all these issues. By the end, the LVAD worked. I finally went home with my new baby. 

About 6 months after getting the LVAD implanted, I had noticed that when I laid on my left side my heart would beat erratically. This scared me but this was also along the same time discovered that my own heart had decreased in size instead of still enlarged from PPCM. I started undergoing many tests at this point. The doctors would turn the machine down so they could see how my own heart would work. The doctors noticed that my heart was fighting with the LVAD and harming my kidneys.  I was scheduled for removal after 8 months of receiving the LVAD. 

At home, I began to mentally struggle. When I was first diagnosed with everything, it was hard to look at Victoria because I thought, ‘If I would not have had her, would this have happened?’ It was a lot of guilt. I was given antidepressants which has helped me a lot. It has helped the guilty feelings and anxiety of almost dying because of the pregnancy. The PTSD is still there, and I struggle with it daily.  I have a lot of ‘what if’s.’   If I hadn’t gotten pregnant, we wouldn’t have found out I also had thyroid cancer or that heart issues run in my family.”  I was also diagnosed with thyroid cancer and had my thyroid removed. 

When I discovered I was pregnant, I went to the doctor to confirm the pregnancy and a large nodule on my right thyroid was found. The biopsies on my thyroid were coming back inconclusive; so surgery to remove the nodule was scheduled after delivery but PPCM happened, the LVAD happened, the LVAD removal happened...recovery from my heart happened then finally my thyroid surgery could happen. Surgery happened about 2 years after the nodule was found.

About 5 years after having the diagnosis of PPCM, I also had a stroke.  I had gone to work like any other normal day, but I remember not being able to think clearly along with many other symptoms. My Mom called me at work and that was odd for her to do that, and I told her I was going to the hospital because something just wasn't right. I must have been talking funny because my sister-in-law showed up and told me she was there to take me to the hospital. By the time we got to the hospital, and they ran all these tests- MRI's, CT's, blood work; my mom had gotten to the hospital. She had had a break down crying at home from our phone call and she knew something was seriously wrong from my voice.   I finally get to a room and that's when the doctors tell us that I had had a stroke.  We all were seriously surprised.  I didn’t have any of the normal symptoms associated with having a stroke.

The best explanation that the doctors can figure out is that I had a small defect in my heart, a hole between the two chambers, and I threw a blood clot which landed in the thalamus region of my brain.  It was decided to perform a PFO closure on my heart or to place a stent between the two chambers of my heart. I still have some things to work on to get better cognitively and physically and the words to write are not there as freely as they once were since the stroke.

With my heart recovered and the LVAD explanted, I was left with a large hole in the bottom of my heart.  A plug was developed and used to patch this hole in my heart.  I noticed an abscess under my breast on scar tissue in June 2020.  This is 6 years after the LVAD was explanted. The abscess was lanced on July 3, 2020.  The hole that was left from the abscess would not heal.  After 7 months of weekly visits with my primary doctor, to the wound care clinic, and to cardiothoracic surgery; finally, a CT scan was completed and that was when the fistula tract was found.  In my case, a fistula was an abnormal connection between organs.  The fistula went from the LVAD plug to the scar tissue and showed that I have a staph infection. This particular kind of staph infection is related to devices implanted in the body like a port or ICD. 

So with this surgery, in February 2021, the surgeons had to figure out the best way to fix the heart; either by removing the fistula tract or the LVAD plug and patching the heart.   This this is a unique case also as it is the first of its kind.  What they decided to do involved cleaning the fistula track and using the latissimus muscle in my back as a cover for my wound.  I have a long incision down my back from my underarm to my waist (latissimus flap) and across half my chest (thoracotomy).  This operation was much harder and a much larger surgery than the others to recover from. 

I had 8 weeks of IV antibiotics and oral antibiotics with going to many doctors’ appointments.  I am now taking oral antibiotics indefinitely.  Because of the health issues, I am tired the majority of the day. It is hit and miss being able to physically do things. 

I was one of the lucky ones who had a doctor that knew things didn’t add up to a normal pregnancy and sent me to the hospital.  I was extremely lucky to still be in the hospital after delivery when I collapsed. It was by chance to have student nurses checking in my room and seeing me in distress. I was fortunate to have a neighboring hospital that could and did perform life saving surgery on me to allow my heart time to recover. It was heaven-sent to not need a heart transplant. I am blessed to have an amazing, compassionate, loving 8-year-old daughter that is healthy and happy. Victoria is the best thing that could have ever happened to me. Victoria will be my one and only child due to the complications from that pregnancy which were nearly fatal for me. She is so polite and considerate. She is smart, sassy, and beautiful. She has the biggest heart of anybody. I couldn't have asked for a better child.

PPCM is no joke, it's nothing to brush aside for a pregnant woman.  Heart failure is real and it happens in not only the old but also in the young...in mothers with newborn babies. It happened to me and thousands of other women who often get misdiagnosed with anxiety and not discovered until the mother is almost at death's door. I am happy and willing to talk about peripartum cardiomyopathy and my story so that it might help others.