50 Years Ago Today: My First Open Heart Surgery

I'm tired today. And a bit stressed. I've been dealing with trying to get approved to go to Mayo to get my pacemaker replaced and it hasn't been fun. But today I'm also thinking about how it was 50 years ago today that I had my first open heart surgery. It was called a Waterston shunt and was supposed to improve blood flow and cyanosis. It didn't help my cyanosis much, though because I still had blue lips and fingernails afterward. 

Me as a baby with my parents and brother. 

Me at 5 1/2 months old, 2 weeks before my first open heart surgery. 

It's amazing that my parents were even able to navigate the medical world at that time. They lived in rural Montana and then western North Dakota. Somehow, they managed to find a pediatric cardiologist in Bismarck who referred them to the University of Minnesota. Up until I had a heart catheterization, they had no idea what was going on with my heart. 

The doctors just thought that I had a hole in my heart, which is why I wasn't getting enough oxygen. They were stunned to learn that only one of my ventricles was fully functioning as my pulmonary artery and aorta both ascended from my right ventricle. I also had other septal defects and pulmonary stenosis. Eventually I was given the diagnosis of Double Outlet Right Ventricle.  

My parents weren't given much hope back then following the first surgery. Doctors had no idea how long I would even live. Four years later in 1978, I had another surgery called the Blalock-Taussig (BT shunt). This procedure has been renamed the Blalock-Thomas-Taussig (BTT shunt). Watch the movie Something the Lord Made and you'll see why they renamed it. It's pretty amazing! 

I even made the news after my 2nd heart surgery! 

Me on the left at four years of age exceeding expectations and home for Christmas! 

Even though my first 2 surgeries were successful, I was still not able to do much physically as I would tire easily and get excruciating headaches. I also still had cyanosis, and my oxygen levels were much lower than normal. I tried my best to keep up with my siblings, though! 

When I was 10, I was able to receive a life-changing operation called the Fontan. The first thing I noticed after this surgery was that my fingernails were pink instead of blue! My lips were pink, too! I wasn't too excited about the scar down the middle of my chest, but I did love that I wasn't getting sick all the time and had much more energy. So much so, that I was able to become a cheerleader for the Watford City Wolves! 

Watford City has always been such a supportive community! 

Me getting ready for my first airplane ride following my Fontan. 

My cheerleading days in high school. 

At the time, doctors thought that the Fontan was the final surgery for us with single functioning ventricles. I found out the hard way that's not the case. When I was 19, I was hospitalized with congestive heart failure. Although I did go on to graduate from college, I still was not completely well. It didn't help that I was not taking good care of myself and drinking much more alcohol than I should have been.

When I was 25, I was working in Bismarck and discovered that a few Mayo cardiologists who saw adults with congenital heart defects came to Bismarck every month. In April of 1999 during my appointment with them, they surprised me by telling me it would be best to come to Rochester for a Fontan revision. They explained the Fontan I had as a child needed to be revised for my adult body. 

I had that surgery in May of 1999 and 3 months later needed to return to get a pacemaker implanted. At the time, I thought it was the end of the world to need another surgery. All of my summer plans were ruined! But God worked it all out as he used that experience to bring me back into relationship with Him. For that, I'll be forever grateful! 

Recovering at home after my Fontan revision (with Malachi)

Thankfully, since then, I haven't had to have any more open-heart surgeries. I did have an emergency c-section in 2003 with the birth of Faith. I was told growing up that I would never be able to have a baby due to my heart condition. She was born 11 weeks early, and it's hard to know whether that was due to my heart condition. According to studies, some women who have had the Fontan miscarry within the first few months of pregnancy, so I'm grateful I was able to carry her for 29 weeks. 

Since having Faith, I have had to go back to Mayo to get my pacemaker battery replaced 5 or 6 times. I'm paced 100 percent of the time at a high voltage, which means I burn through batteries much more quickly than is normal. My parents have accompanied me to many of these appointments, just as they did with all of my surgeries. 

Mom and Dad in 2017 during a trip to Rochester

My sister and I after my battery and lead replacement. 

My "baby" sister helps look after Faith when I'm gone!

In 2021, I had my most recent battery replacement, along with my lead. It was my hope that replacing the lead would help my battery last longer. Before the lead change I was barely getting 2 years out of the battery, but after, I was able to get 3. Soon I will be getting it changed again. I'm just not sure where or when at this point! 

Even though I need to get my battery replaced on a regular basis, I am very thankful that I am doing as well as I am. I feel blessed to be on the receiving end of so many prayers prayed for me through the years. 

Sadly, this isn't the case for many children and adults with single functioning ventricles and similar diagnoses. Some of them are in heart failure or have even had transplants. And those with the Fontan have liver issues as well. Some have even undergone a heart and liver transplant. Thankfully, although I had a setback with my liver 7 years ago, it is doing well. 

In May, of this year I posted the following on Facebook in one of my heart groups: 

Underneath the post, someone made the comment, "Doctors saved you, not God." My reply could have been very lengthy, but instead I simply replied, "I would say that God used doctors to save my life. After my Fontan, the surgeon told my parents he felt as though something was guiding his hands. God has definitely given me the grace and strength to get through many difficult circumstances in life, and not just heart related." 

And that's why I will never stop "celebrating" these milestones in my heart journey. It's not to draw attention to myself. Instead, it's to give God glory for all He has done in my life and to maybe provide others with congenital heart defects (or their parents) with a little bit of hope. 

Me with Faith celebrating my 50th!