I am often known as “the girl who has heart issues”. I have a rare heart condition that led me to have open heart surgery at age 17. Several years later, I had to undergo two more open heart surgeries in just a three-week period. And last year, I was about to undergo a fourth heart procedure, but doctors were concerned about my blood count and discovered that I have leukemia. So, I’m currently in the midst of some very difficult chemotherapy treatments.
I believe everyone has struggles and a story to tell. Some may look different than others; my struggles are all medical. What God has allowed to happen in my life is something that I want to share in order to encourage others. I want to help them as they walk through their own difficulties. So, I started to document my challenges in a blog to help encourage others that might be in a similar situation, and to give the glory to God alone.
My blog has become the journal of my life, but also one of my biggest blessings.
I started blogging when my husband and I got married and I moved away from my family. I initially found it to be a great way to keep in touch with family and friends and let them know what was going on with my life. When our miscarriage, through a gestational carrier, happened, which you’ll read about more below, I really opened up and became completely vulnerable on the blog. Sometimes people can put on a façade and hide their feelings. I chose to be completely open and didn’t hold anything back. I started to really share what God was doing in my life and somehow, I started connecting with people I didn’t even know.
I’m not blogging for fame or glory, but for God’s glory alone. If one person can be encouraged and have their faith strengthened by something I post, then it’s totally worth it.
Here is my story:
In 2000, when I was 17, I was diagnosed with a rare heart condition called an anomalous left coronary from the pulmonary (ALCAPA). Doctors said I needed open heart surgery.
When you are confronted by such a grim diagnosis, your faith is really tested. I had grown up in a wonderful Christian home with loving Christian parents who led by not only words but by example. I asked Jesus into my heart as a young girl, but my faith was not really strong. I had a choice to make when confronted with this open heart surgery: I could either choose God or the things of this world. I chose to follow Him completely and Jesus became the center of my world.
A month later, on January 17, 2001, I had open heart surgery to correct the problem. By God’s grace, I survived.
At that point, my mitral valve was leaking just mildly, so doctors didn’t want to touch that valve because most healed after the surgery. But the leaking in my mitral valve had increased to a moderate/severe stage, and by 2010, after I was married, it would be very risky for me to have my own child. My husband and I felt it was not worth risking my life, which meant we had to grieve what we would not have: our very own child.
Little did we know that as we were grieving this “loss,” God was working in the hearts of our friends, Tim and Brenda. On October 10, 2011, Brenda offered to carry our baby. After much prayer and tears of humbleness at their offer, we accepted. After a long journey in planning for this process, we found out Brenda was pregnant—with TWINS–on September 5, 2012. Though, that same day, Dan also learned he had been let go from the church he worked at as a youth pastor because of some decisions we had to make around the gestational carrier process. Three weeks later, Brenda had her first ultrasound and we learned that God had taken our two babies to their eternal home. It was extremely hard to let them go, but in our hearts, we believed God was sovereign and would continue to work His plan to perfection.
Then get this. In May of 2014, at my routine heart checkup, we found out God had miraculously healed my heart, enough to the point that my heart was healthy enough to carry a child. God had restored our hope of having our own children!
A month and a half later, we found out we would be having a child in March 2015. Words could not even express the joy and humility we felt; that God would choose to act in this way in our lives. On March 17, 2015, our baby girl, Mazy Grace was born! She was 8 lbs. 2 ounces and 22 inches long. Our little miracle.
Even though my pregnancy and the birth couldn’t have gone better, I went into heart failure just days after her birth. It was a trying and scary time for us and our families, but a year after having her, we received the news that God had healed my heart once again!
Unfortunately, later that year, we learned that my heart had once again declined. We were set to move back to Michigan, closer to family the next month, so we waited to meet with a cardiologist at the University of Michigan. After many tests, I finally had my open heart surgery scheduled for November 30, 2017, but my heart proved it could not wait that long. It was bumped up to October 20, where I had a right thoracotomy to repair my mitral valve. Five days after being home from the hospital, I landed in the ER and was flown via helicopter back to the University of Michigan, with yet again, a failing mitral valve. The sutures had blown, after the tissue surrounding the repaired valve had calcified. It was a very uncertain time for our family, knowing that I was not even healthy enough to have another open heart surgery, but needed one desperately.
At one point, during that week in the ICU, my organs started to fail. If I didn’t show improvement, I would need a heart bypass pump. This was a very risky surgery and I might not survive. As difficult as this was, as my husband put it, if God would get greater glory through me not making it, then we had to trust that plan. We just wanted to give God the glory. Thankfully by that next morning, my numbers had improved enough to the point where they allowed me to even eat some food (it had been 4 days since I could). I truly went from survival to life overnight, thanks to His grace.
By November 6, I was finally healthy enough for a second open heart surgery in less than three weeks, this time through the sternum, to replace my mitral valve with a cow’s valve and to repair my tricuspid valve.
It was a bumpy road after those two surgeries, especially after spending 16 days in the hospital for that second surgery. But I did recover. God proved Himself faithful once again, even when my medical diagnoses were not favorable.
But unfortunately, I have now been labeled as being in Stage 3 advanced heart failure and am on the brink of needing a heart transplant. I also thought heart failure was enough of a journey to walk through, but God had a different idea.
On September 15, 2022, I went to the University of Michigan hospital for my fourth ablation. This was to try and decrease the number of extra beats my heart was having. It felt like it should be relatively routine, but nothing about this procedure ended up being routine. I was already put out when the surgeon double-checked my blood counts. Some seemed a little off, so they retested my blood, and the tests showed several numbers were even worse, including my white blood cells. Thus began a journey we never saw coming.
When I came to, the doctor said they were not able to do the procedure because of my blood counts. A few hours later, a hematology doctor began to explain that they think I might have cancer and then an hour later, I was told it was acute myeloid leukemia. By that night, I was brought up to the cancer floor where I would spend the next three weeks. It was an incredibly difficult time as I was limited to the number of visitors I could have. In addition, the chemo made me feel fairly sick, and there were times I wanted to throw in the towel because of the pain I was in. I basically went through nearly every stage of grief during that time, but God continued to provide our daily bread.
I didn’t think God would allow cancer in my body on top of my heart failure. But God had a completely different plan, even though I didn’t always like it. After much prayer and realizing that God would use this for His glory, I realized if He could get us through my heart problems, He could get me through cancer.
I have to do four consolidation treatments, which means I will have to go back every month for four months, for a week at a time, to receive chemo treatments. After that, we are hoping that I will stay in remission so that we can go back to addressing my heart failure.
But until then, we are just taking it step-by-step, and continuing to follow God’s lead.
At times, this has all felt overwhelming, but I believe God wants me to use my trials as a way to help others. When we are able to walk together, we are able to encourage one another. It’s the body of Christ working together.
The people that read my blog encourage me when I’m going through these tough medical challenges and that truly strengthens my faith. They bless me and I hope I bless them by sharing my life journey.
Through it all, I hope that my readers will embrace the story of God’s grace in their own lives through simple grace-filled living.
2 Comments
Abi
March 2, 2023 at 6:15 pmThank you for sharing your incredible journey. God bless you!
Epiphania
April 16, 2024 at 5:26 amThank you for sharing your story. This is so encouraging.