Finding out I needed heart surgery at 24

Earlier this year, February to be exact, I had a regular check up with my primary care doctor. What was meant to be like any other yearly physical, turned into an unexpected road to heart surgery.

My doctor heard a loud heart murmur and proceeded to have me listen to her heart compared to my own. Hers sounded normal with a regular beat and rhythm, mine sounded more like a machine. I left that appointment with orders to get some tests done, starting first with an echocardiogram. Which is an ultra sound of the heart.

Based on my echo, they could tell that I had severe Mitral Valve Prolapse.

My Mitral Valve was prolapsed (wasn’t closing correctly) and therefore was leaking severely back into the chamber, creating a loud sound known as a murmur. It essentially sounded like a machine, not a heart beating.

The first time I met with the Cardiologist, he showed us the severe leakage from the echo and told my mom and I that I would need open heart surgery this summer.

I know, I was shocked too.

He explained that I wouldn’t die from this immediately, but with every heart beat, my heart was being damaged. I would probably drop dead sometime in the next ten years if it wasn’t ever caught or fixed.
It seemed so casual for him to tell us that, but it is his everyday job to deliver news like that. But obviously with no prior major health issues, I was pretty stunned.

​I had to get a few more tests done to confirm the diagnosis. One of them was a TEE (Transesophageal echocardiography). It was the first time that I’ve been admitted to the hospital for a test/procedure. They put me under and inserted a camera down through my throat to see the back of my heart and confirm that it was as severe as they thought.

After the procedure, while the morphine was wearing off, the doctor went out to talk to my parents. He urged them to not get my heart repaired in California and go straight to the Mayo Clinic or the Cleveland clinic. He said, “If this was my daughter, I wouldn’t trust any surgeon in California to do this repair. You need to find someone who is 100% confident they can repair the valve and the best is at the Mayo Clinic/ Cleveland clinic.

After that conversation, what we thought was going to be a simple, easy road to surgery, turned into hours of my mom doing research on the best surgeon out near us to do the repair so we could stick with my parent's HMO insurance and not use my PPO insurance from work.

A lot was on the line. They made it very clear that there was no guarantee that I could get my heart repaired. They wouldn’t know the actual severity of it until they got into my heart. If they went into repair it and it was too difficult of a repair they would have to replace the valve.

If I ended having to get the valve replaced, I had two options. A mechanical valve or a pig valve. The mechanical valve would last me 15-20 years, but I wouldn’t be able to have kids because I would be on Coumadin for the rest of my life and my lifestyle would have to change dramatically. Which is a lot to process for my 24 year old self. The second option, a pig valve, I was told would only last 5 years because my body would break it down very quickly. The pig valve lasts longer on older people because at that age your body isn’t regenerating as often. That means every 5 years I would need to have some type of heart surgery to get it replaced. Boy did that sound fun.

We saw a surgeon out of Hoag who does Mitral Valve Repairs, but he’s not well versed in robotic surgeries, so he said he would have to perform open heart on me. Which is fine, but if there was a better option, we were going to seek it out. He reassured us that he could repair it, but it was a difficult repair like we thought.

After seeing the surgeon at Hoag, we continued to do research of our best option. And by "we", I mean my mom. I was just trying to keep my head above water.

My mom was on a facebook group for people that have had mitral valve repair surgery, or are about to have it. It was very helpful and I’m glad she stumbled upon it. Most people in the group were 50+.

If I was older it would have been no big deal if they had to replace it, but because of my age, we wanted to find someone who was confident they could repair it and also do it non invasively.

The non invasive surgery had its benefits. The recovery was a lot faster since they didn’t have to go in and break my sternum. The scars are in a place that is pretty hidden. But what I didn’t know is that the recovery in the hospital is more painful because of where they enter through your lungs. More on that later.

Thankfully through the facebook group my mom heard of Dr. Alfredo Trento and started doing some research on Him. He’s a cardiac surgeon based out of Cedars Sinani and he’s done thousands of repairs and he also does heart transplants along with other various heart surgeries, so he’s very skilled to say the least. We set up an appointment with him and waited.. again.

This entire year has been marked as a season of waiting. Finding answers and then waiting to see them through. I could’ve been out of recovery by the time we figured this all out, but things take time with insurance and doctor's schedules. We have definitely become more patient, relying on God and His timing. Not our own.

During all this craziness, I was finishing up my thesis, interning at H.Hendy Associates and trying to keep my head afloat with my new diagnosis.

I started to notice my symptoms getting worse. Extreme fatigue and heart pain.
We met with Dr. Alfredo Trento and decided that he was the best option on this coast. He was confident he could repair it robotically, which is what we wanted to hear. Now the waiting game continued, as we scheduled the surgery for beginning of September.

About 14 days before my surgery I got a call from my surgeons scheduler. Dr. Trento had been out of the country for the last few weeks, and apparently needed surgery when he got back. They canceled my surgery and pushed me to the end of October. I got off the phone in tears and called my mom. After so much preparation, mentally and spiritually, it all got canceled.

After I hung up with my mom, we were both in tears, she called the scheduler back to hear it for herself and said we were going to look back into going to the Cleveland Clinic and reevaluate our other options because waiting wasn’t an option as my symptoms were getting worse.

I guess calling on the phone in tears works. They called us the next day and said, “okay we can pencil you in on Tuesday September 10th, at noon.” He was adding me in on a day he only had one surgery scheduled for the morning. I was going to be the second surgery of the day. He was arriving into the country the night before and going out for his own surgery after he performed my surgery. We only had a few days to prepare, get a hotel and I had to let my work know that the surgery got pushed up and I was now suddenly going to be out starting the next week, for 6 weeks.

​Thankfully I had my amazing family and friends supporting me through this diagnosis. My friend Emma also has health issues, so we would meet every week and get Pressed Juicery (frozen yogurt) and talk about our doctor's appointments, every victory and disappointment. Most people my age haven't gone through something like this personally and don't fully understand, so it was a huge blessing to have Emma be such a constant through this last year.

If you know someone that is going through health issues or dealing with any type of grief, nothing you say is going to make things better, they just want your support and presence and to know you care. I know it's hard to show up in situations like this, but it's the small things that matter and people will remember you being there.

Even though this was by far the craziest year, with so many highs and lows, I didn’t let fear take over. I felt led to this point. Mainly because I had a lot of other weird health issues in the years prior, that this diagnosis just made me laugh. I truly knew that at the end of the day, it was in God’s hands. Spending any time or energy stressing about it was just going to take away God’s sovereign place in my life by trying to control something that was out of my hands completely. That’s the cool thing about knowing Jesus. There is no place for fear and I really got a taste of how that looks in a health crisis. Coming face to face with death really puts things into perspective. This whole experience has changed my life forever. I have way too many words to formulate about that in a few sentences. It also brought me a lot closer to my family. So sometimes, finding out you need heart surgery at 24 isn’t that bad.

​P.S. I’m going to do another post about the actual surgery and recovery. There is just too much to write. Thanks for your patience ;)
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