Miriam's Journal

This turned out to be very long, so if you'd rather skip the details--know that the main reason surgery is put off for a year is because of a clerical error/typo that made it seem like I was ~5 inches shorter!!!

Part 3. Surgeons Before I saw the surgeon, I had to get some procedures. A longer CT scan to show more and a cardiac catheterization. All of that went fine and the cath doc said the results were expected. Nothing new that they didn’t already know about. I met the first surgeon back in May, and after going over history and such with the nurses/assistants, he came in. He explained major points about my heart, what needed to be done, and then asked about symptoms. He spoke about this being the most common type of heart surgery, we do it all the time, you’ll be fine. Then he said, time to get into the best shape of your life. I’m thinking surgery in the fall. Oh, uh, O...kay…. So my husband and I were processing this for a couple days...then I worked on telling family and friends. At some point, Jerry and I knew we had to start “getting ready.” I wanted to do research, find resources, and finally started thinking about the getting my “affairs in order.” We soon learned that the first surgeon we met with would be moving to Texas. So, I waited a little while and I had a question for the nurse, so I called his office and worked in asking whether or not they had a candidate for the surgeon position, because we really wanted to stay with that hospital, one my family has always had good experiences with and trusted. No candidates. So, I asked for other surgeon’s names from her, and she gave me some that her surgeon trained/recommended. I did research and chose one that specialized in exactly what I had. I contacted them, and the first appointment the surgeon had was September 14^th. So we spent the summer getting educated and organized. I found some of Adam’s videos, discovered this site, and ordered his book, which I and my husband read. Meeting the new Surgeon This was a great appointment. He was smart, funny, yet down to earth. He described how he specialized in exactly what I had (which was why I chose him), and talked in a lot more detail about what that meant and what happens. At some point, he talked about dimensions of the aorta and said, you’re short, 5 feet tall, so that means…. I said wait, I’m 5’5”, with shoes. They all looked surprised and said, wait, you’re how tall? I said, 5 feet 4 and ¾ inches. They said, that makes a huge difference! They said in their records, it said I was 5 feet. Later, Jerry and I thought that was really weird because all the records were from my my cardiologist and my primary care doctor who we’ve been with forever. The surgeon started saying, okay, 1^st surgeon was wrong. He’s a colleague and friend of mine, and I respect him, but he was wrong. You don’t need surgery yet. You’re heart is strong, with a good squeeze, and it’s not time for surgery because you’re symptoms aren’t bad and your height means you don’t fall into the surgery range yet. He said we need to get a better CT scan. The one you got isn’t very good because it isn’t made to take pictures of a moving organ. You need a gated CT scan, which is for structures that move. Also, we want to pin down the exact cause of the shortness of breath with a pulmonary study, because your lungs could be part of that and we need to find out how much shortness of breath is being caused by the heart vs the lungs. So, I got my marching orders, and he said, you’ll follow up with my colleague who does the imaging and I’ll probably see you next summer!

Part 2. Getting back to a regular cardiologist

A few years ago, my GP (he’s super), said, your murmur is louder. Let’s send you back to the cardiologist. When I was younger and invincible, I just went to the cardiologist off and on. So, my reg doc and my new cardiologist helped get me working on healthy eating, regular movement, and put me on a bd med. My cardiologist asked if I had ever had a calcium test. An extremely brief CT scan that shows a calcium score, which would give helpful info about meds for high triglycerides.
The report from that brief scan came back on a weekend. It said calcium score zero, aortic aneurysm. Uh, what? Aneurysm? That was a tough day for me and Jerry. I left my cardiologist a phone message, no doubt sounding panicky. He called me back on Sunday, he’s awesome BTW, and talked me down. Not that kind of aneurysm. He explained it, saying everyone who has this murmur gets this. I means the back flow from the valve not closing all the way is now spraying onto my aorta above the valve, like your thumb on a garden hose (okay, that’s a little yikes), and that is widening the aorta. He said, let’s get you an appointment with a cardiac surgeon, so they can get to know your case, maybe do some other tests, and decide how to monitor you going forward. Oh, okay! That makes sense!
Part 3, surgeons to come...

Okay, will start with a little history.

I was born with a heart murmur. We think my paternal Gpa passed it down to me; he was 4F trying to sign up for WW2. I don’t think he ever pursued treatment, and he smoked 2 packs of camels a day. He died of heart attack in his 60s.

Part 1. Symptoms
The heart murmur was diagnosed when I turned 20. My reg doc at the time said you’re supposed to grow out of the murmur. When I got the ultrasound, the cardiologist came in after and said you have a bicuspid aortic valve. My parents were very concerned and asked about my overall health, and he said, wait until she’s 60. This was over 30 years ago--I know now he was trying to talk my parents down. So, from that time on, we always knew I’d need surgery someday.
I don’t think I had many symptoms until I got much older, but I suspect I may have always had some shortness of breath. Even as a kid, I hated “the running part,” playing tag, other games with running. I played basketball and softball as a preteen, but I even rolled my eyes at having to run laps around the gym during practice for missed jump shots, because it was unpleasant. I was pretty much always short of breath going up steps. I always tried to hide it, to avoid judgment, because I was embarrassed. No one else seemed to have this going on. Eventually, I'd blame pretty much any physical symptom on being overweight. 

Just getting started on this site for info and updates for family and friends. Profile Picture--I wanted to post a natural photo--resting over 50 face. lmao