The Diagnosis

This is the start of my journey to open heart surgery.

THE DIAGNOSIS

I have known that I have a bicuspid aortic valve. This is a defect from birth. It wasn't until 20 years ago that a midwife found a murmur when I was pregnant. At that time the murmur was so hard to hear that she had to lift my arm and listen closely. She wanted to have it checked out just to be safe. So she referred me to a cardiologist for an echocardiogram. I went to the cardiologist and they did the echo. It's like a sonogram for the heart. That's when they found the bicuspid valve.

Normally a valve has three chambers to allow blood to flow freely. My valve only had two. This meant that the heart was going to have to work harder and harder as time went on. I was told that the valve would wear out eventually - probably by the time I was 60 years old and it would have to be replaced. The murmur was so insignificant then and so the choice was to follow it every 3 years or so.

Every three years I went for another echocardiogram, and everything was fine. The murmur was getting louder, but the heart was compensating for the defect, which I was told again in 2011.

In 2015 I realized that it had been a while since my last echo. I made efforts to get a referral from my doctor an appointment was made with the cardiologist. In November I went in for that.

The technician had me put on one of those paper gowns. We all love those, right? She had me put it on with the opening in the back. I did it wrong, and she got a little short with me. She seemed annoyed. She asked why I was there and other questions. I got the feeling that she thought the echocardiogram was overly cautious since my exam in 2011 was usual. Then the exam started...

She started out taking measurements and moving the sensor around. About two minutes into the test, the technician started getting really friendly. She talked about her family, her children, where she lived when she was a child, etc. All the while the exam was taking far longer than I ever remembered before. She had me twist and turn, breathe, hold my breath. She pushed so hard on my breast bone that I wondered if she was going to break it.

Then it was over, and she was going to take the results to the cardiologist, and then he'd call me in his office as soon as he looked them over. I asked the technician, "You can't tell me the results can you?" She replied, "No, but I can say that it's a good thing that you came in."

The cardiologist came in and said that the echo did not look good at all. He said I was going to need surgery soon. He wanted to take the echo results back to his office and study them closer. But he was confident that I was going to need open heart surgery within the year. I left the office in tears. How could the valve have deteriorated so quickly when it was fine in 2011?

The next day he called me and sounded a lot less serious. He said I hadn't noticed any symptoms, so he thought it would be safe to wait and evaluate again in May. He wanted me to have a stress test before that appointment.

I got a phone call from the cardiology office to remind me of my appointment. They also set up a stress test at that time. I was to arrive at the hospital at 1:15 and the stress test would start at 1:30.

The technician took me back to a room where they had a treadmill. I was then hooked up with sensors, my blood pressure checked, breathing exercises, etc. Then I got on the treadmill.

He started it way too fast! I was walking at a very fast pace even from the beginning. Then he raised the level. I was having to jog a little bit. My heart rate climbed from 72 to 160 very quickly. I only lasted 3 1/2 minutes before I had to stop. I was seriously out of breath! I thought I had exercise-induced asthma. Boy howdy, was I out of shape! I couldn't catch my breath and I was wheezing. I thought I was going to pass out. The technician had me sit down and try to breathe. After several minutes my breathing calmed down a little. My heart rate was still up over 120 when the technician disconnected the machine and took the sensors off.

He walked the print out over to the clinic with us. He personally handed it to the cardiologist himself. He didn't give it to a receptionist, or to a nurse. Then he told us to wait and they'd call me back soon. I sat there in the waiting room and kept coughing. We got called back and waited for the cardiologist to come in.

The cardiologist had me sit on the table while he listened to my heart. He put the stethoscope up near my neck and jumped a bit and said, "Wow! That's loud!" He did the rest of the exam and then had me sit in the chair.

"You need to have surgery soon. Most likely within the next 4-6 weeks." That wasn't the news we were expecting. He said that the stress test looked really bad. I tried to insist that I was just out of shape, but he said no. The EKG went crazy while I was on it. My blood pressure plummeted. Normally blood pressure is supposed to rise while exercising. Which means, the heart was stressed. It's not because I'm out of shape. It's because the valve in my heart is slowing me down. He said that the lessening of activity happens so slowly that it goes unnoticed, dismissed as being out of shape, or just getting older. He had four verifications: The echocardiogram, the stress test, the blood pressure, and the EKG. It was time to schedule the surgery.

I started crying.

He handed me a tissue and said that it was hard news to absorb, but it has to be done or I would have a heart-related incident normally in about two years. Since I was so young, it could possibly be three years. But my activity would slowly deteriorate even more and we don't want it to get to the point where going to the store wears me out. By then we could be looking at heart failure.

"So if I don't get the surgery, I will die soon?"

"Yes. Probably in two years, maybe three. This surgery will not only prolong your life, but you will feel better. You will notice very quickly the amount of energy you could have been having if your valve was working properly."

He took the papers himself to the receptionist. She noted that the cardiologist had informed that an appointment to have a heart catheterization needed to happen immediately - as soon as possible. But, the offices were closed by then. She said she would call me the next morning.

I cried again on the way home. Actually, no I didn't. I sobbed.

We were going to have to clear our schedules and remove absolutely everything. The heart surgery took priority over anything else. My husband told me that he would have to call his boss and let him know that he wouldn't be able to fight fires this summer.

That realization hit me hard. My husband was going to have to give up his passion for fighting fire, and therefore eliminating much of our summer income...for me. I sobbed again.

The rest of the evening was spent making phone calls to family and friends. I couldn't speak to anyone. My husband did all of the calling. I was still trying to process it all.

That night I couldn't sleep. I kept waking up several times, each time thinking yesterday was all a dream and then in the next instant realizing it wasn't. It was real. And it was terrifying.

Yet, it has to be done. I don't want to die yet.

The next morning I took the initiative to call the hospital myself to schedule the catheterization. They could get me in May 12. It was the soonest available. Then I was transferred to the surgeon's office where they scheduled me for a consultation with him. I would see him May 18. I was told at that point the surgery would be scheduled.

I couldn't believe the amount of anxiety that I felt. The whole weekend was spent doing that. I kept thinking that two days ago my world was fine, and now I was facing open heart surgery that was imminent! I tried to watch TV to distract me, but all I kept seeing was people running and jumping and playing and thinking, "At least their heart is fine."

I went to church and felt like the whole world was going on without me. Sooo many people were so supportive and so full of comforting words. I soon felt I was not alone.

Until the Sacrament. The song just happened to be, "I Stand All Amazed." Since it was Dayna's favorite hymn I felt that it was her way of letting me know that she was there and that it was going to be all right. I couldn't sing, however. I couldn't even open my eyes because the tears were flowing into my mouth.