Learning To Embrace My Story
Growing up, I loved watching sports with my dad. Weekend afternoons we would watch a game together, until we had to go back to the farm and milk the cows. My dad was a dairy farmer and I had the privilege of being raised in a family that values faith, family, and hard work. So, when we would go back to parlor to milk, we'd sometimes tune into a game on the radio then too. That is where my love for basketball started. I dreamed of being the first woman in the NBA as a young girl, but then the WNBA was created and that dream was dashed quickly!
The summer between my sophomore and junior of high school, I had my routine sports physical. Everything was redundant until my family physician stated that she heard a faint heart murmur. My doctor assumed it was nothing, but I went to see a specialist just to make sure. It was while at that appointment, that we learned my life was about to change drastically.
During that appointment at the Helen DeVos Children’s Hospital in Grand Rapids, Michigan, the medical technician stepped out of the room while performing my ECHO, which caused my mom and I to be alarmed. Soon a doctor stepped in and he asked us to meet him in a conference room afterwards. As I sat at the head of the table, the cardiologist proceeded to tell me that I had a rare heart condition called ALCAPA (anomalous left coronary from the pulmonary). It’s a fancy way of saying that the pulmonary and coronary arteries were connected and the left side of my heart was only receiving deoxygenated blood. I was 17 when it was found and according to statistics, it was a miracle that I even made it that far in life, since many did not make it past the first year of their life.
The only way to fix the congenital heart defect was to have open heart surgery. It wasn’t the fact that I needed open heart surgery that devastated me, but that I needed to basically be a couch potato until surgery, which meant I had to quit the sport I became obsessed with and hoped to play in college (I am 6’ 1”). An hour after that appointment, I went to my basketball team’s end-of-season party and it was then that the tears flowed, knowing it was the last time I was ever going to attend a basketball event as a basketball player.
On January 17, 2001 I had a successful open heart surgery. The recovery went extremely well and I was back to school full time in 1 ½ weeks after surgery. Over the next few years, we learned that my mitral valve started to leak slowly, which caused some concern about me having children in the future. Not that I was worried about another surgery, but I feared finding a husband who would choose to marry me, despite the possibility of not being able to have our own children.
Well, I found that man. Dan and I got married in 2006 after meeting in college and we began our life together. About 4 years into our marriage, we decided we wanted to see if it was possible for me to have children. After a round of tests, it was a gray area. The pregnancy could go really well or it could possibly be deadly. For me and the baby. It was a risk we were not willing to take, so we grieved what we would and could not have – our own biological child. Meanwhile, a dear friend of ours prayed that God would heal my heart so we could have our own children. Little did she know that she felt God calling her to be a gestational carrier for us!
It was quite the conversation to have with her and her husband since she was 50 at the time, but we knew that that was the next step we were to take – walk the road of IVF with our friend, where she would eventually carry twins for us. It took about a year since that first conversation to when we found out she was pregnant with twins, but it was completely worth it. We were FINALLY going to be parents to two little babies.
On September 18, 2012, at the 3-week ultrasound, it was time to see their hearts beat for the first time. As the doctor gently moved the probe over our carrier’s abdomen, it was clear that the babies were not in there. She had miscarried both of them. We were all incredibly devastated. This was not how we envisioned this whole process. The pain and grief were so deep, as we each grieved in our own way. How could this happen?
After about 5 months, my husband and I ended up moving to Minnesota, not because of the miscarriage, but because we felt God calling us to a new beginning. Our friendship with our carrier and her husband had so much depth, so leaving them was incredibly difficult. But we knew we were meant to move. Minnesota was a place of healing for us mentally, emotionally, spiritually, and physically.
A year after moving, in 2014, at a routine heart appointment, we learned that my mitral valve, the very valve that was moderately to severely leaking my appointment prior, was only mildly leaking. My husband leaned forward and asked what that meant for pregnancy and my cardiologist said, “I see no problem with it!” Our hope was restored. And a year later, on March 17, 2015, I gave birth to our daughter, Mazy Grace, who is now 3 years old.
After a few years we desired to live close to family again. Our families have always been such a large part of our lives that we wanted our daughter to experience having grandparents and cousins around. In 2017, we moved back to Michigan and I was referred to the University of Michigan to follow up with a cardiologist for my heart issues. My cardiologist in Minnesota recommended an old colleague of hers, Dr. Monica Colvin. After meeting with her, it was that summer I learned I would need another open heart surgery to repair my mitral valve. So, on October 20, 2017, I had my second open heart surgery done at the University of Michigan and it was very successful. It was a painful surgery since I had it done via a right thoracotomy, but I was told the recovery would eventually be quicker.
About 4 days after being home, I started to feel ill. The visiting nurse assumed I was just getting the flu, but by the next morning, I was lethargic, nauseous, in an incredible amount of pain, short of breath, and my vitals were all over the place. My friend, who happened to be a nurse, took me to the ER and within 15 minutes, I learned I had to be flown via helicopter back to the U of M. Doctors first thought I had gall bladder issues, but after numerous test, it was evident that the repair done on my mitral valve had blown because the tissue where the sutures were, had calcified. My valve was not working at all. As a result, I needed yet another open heart surgery to now replace the valve. It was an emotional and trying time, but the nurse practitioners and nurses on the CVC ICU floor helped me get through those times when I thought I could not get through it. It was a grueling 6 days in the ICU before I was healthy enough to have another surgery and my organs even started to fail. But after many tests and medications, I was finally able to have the open heart surgery, now going through the sternum, to replace my mitral valve and repair my tricuspid valve.
I was in the hospital for 16 days that round, since my body and heart had so much healing to do. I started to experience PTSD from all that had occurred, but again, it was the nurses and nurse practitioners that helped me gain the confidence I needed to work through those fears.
Returning home did not prove to be easy, as I ended up back at the University of Michigan two times before my post-op appointment. Though after a month of visiting nurses and in-home physical therapy, things were looking up. I finally graduated to cardiac rehab at Holland Hospital, where I went 3 times a week to get my heart and body back in working order. By the end of rehab, I was jogging and thought I had a new lease on life. Little did we know that 2 months later, at a visit back at U of M, we learned that my ejection fraction was only 20% and it has been an uphill battle ever since.
I have been in the most amazing care at the University of Michigan. From the surgeons, to the cardiologists, electrophysiologists, nurses, and medical assistants. I do not feel like a number, but as a patient who they really care about. They seem to work tirelessly to get my heart healthy again and I could not be more thankful for the care they have given me.
In September, I learned that my PVC burden had increased to a severe rate. So, in February of this year, I had a subcutaneous ICD implanted because I am at a severe risk for going into cardiac arrest. I then had ablations done in May, but didn’t prove to be successful, and am now on a medication to help control my PVCs. As for the low EF, my prayer is that through continuous medication therapy, I can slowly increase it, though nothing has proved to work thus far. Being a mom and wife, living with advanced heart failure is not always easy, but it has given me the opportunity to relate to others who have gone through a difficult medical journey as well.
This is a bit of a reader’s digest version of my story, but because of the depth of what I have experienced, I ended up writing a book about my story the summer of 2018, called “A Heartbeat of Grace.” It is an emotional extension of my heart and faith journey. I also blog regularly about my story at www.kristinsterk.com