About Me (In My Own Words)
I had my son when I was just 18, and when he was about 6 months old, I developed a cough that just wouldn't go away. I made an appointment with our family doctor, and by some luck he was out of the office that day so I saw his partner instead. That doctor asked me if I had ever been told that I had a heart murmur. Though I had been to several doctors many times during my pregnancy, and even had palpitations during my pregnancy which was attributed to a med to stop pre-term labor, no one ever detected my heart murmur before that. My mother has a murmur that has never caused problems, so of course it was assumed that mine would be nothin too. But I was sent off for an echocardiogram to be sure.
It was quite devastating for me to find out that I had two diseased heart valves; I had both aortic valve stenosis and regurgitation and mitral valve stenosis. I was referred to a cardiologist right away. Her opinion was that it was rheumatic heart disease, though it was odd because it doesn't usually show up in people until they are much older than I was. And I also was never sick enough as a child to think I could have had rheumatic fever. The doctor thought that my pregnancy may have exacerbated it. It was all quite puzzling. My condition wasn't severe enough to warrant surgery then, luckily. I lived a fairly normal life, though I was never as active or energetic as people my own age.
2005:
It wasn't until I was 29 that I finally needed surgery. I admit to skipping a few years of cardiology follow up. I was trying to finish grad school and started to feel truly terrible and I knew I needed to see a cardiologist asap. I couldn't do laundry or walk across the room without being short of breath. I was sent in for a TEE, and sure enough, the aortic valve was leaking severely. I was living in PA at the time and was sent to a surgeon in Philadelphia. When I went in to see him, he told me I was in heart failure and that this surgery needed to be scheduled within 6 weeks. It's not a moment I can ever forget. After a long and tearful discussion, my husband (at the time) and I decided with the surgeon to go for a tissue valve because I was still so young and didn't want to be on coumadin for life yet. I also wanted to have the option of having more kids.
The surgeon said they'd consider repairing the mitral valve while they were in there if they could. So much is blurry from that period of time, but they didn't do anything to the mitral valve and I don't remember why. The aortic valve was successfully replaced with a bovine valve.
I never felt amazing after my surgery like many people do. I mean I certainly felt way better than when I was in acute heart failure, but I have never had a lot of energy, and have always had a baseline shortness of breath on inclines. I believe that is because I haven't had full cardiac capacity in many years since my mitral valve was also diseased.
2016:
Well, fast forward 10 years and my yearly echo showed that the tissue valve was declining and my mitral valve was worsening. I hoped and expected my tissue valve would last closer to 15 years, so I was pretty distraught about this.
I've been through a lot of changes in my life since my last surgery, including a divorce, re-marriage, and relocation across the country. I have a 6 year old step daughter now. I started a business last year with my husband. I just turned 40 this year and was feeling so good about my life. I really didn't anticipate needing open heart surgery this year!
Well I sought out the opinions of 3 different surgeons, all of whom were skilled in minimally invasive surgeries. I assumed with all the advances made in the last 10 years, I'd have some other alternative than open heart. I was so upset to learn that I was not a candidate, plus my mitral valve was too diseased to be repaired. After talking with these surgeons, when I first met with Dr Barnhart in Seattle, I knew he was "the one" to do this surgery.
I decided on 2 mechanical valves, which was highly recommended by my surgeon. Though I had big concerns about being on Coumadin for life, I felt very strongly that I did not want to go through the emotional and physical toll of having open heart surgery again. Plus my risks would be much higher if I needed another surgery.
So on April 8th, 2016 I had my aortic and mitral valves replaced with On-x valves. The surgery was more intense than expected because tissue from my bovine valve had grown all around and into the wall of my heart, and ended up requiring them to replace my aortic root too. My surgeon said he'd never seen anything quite like it.
Well, I am now recovering from surgery, it's been a bumpy ride but each week I get stronger. I am grateful to have found this group for the ongoing support I've received. And I'm so inspired by everyone I've met here!
-Updated 2025: sadly I'm back here again because my mechanical On-x aortic valve has severe stenosis. It seems that pannus or tissue overgrowth has obstructed the opening of the valve. I had no idea this was possible so I'm still in shock but slowly coming into acceptance and am looking for a surgeon. I was already told by one surgeon that my risks are very high due to it being a 3rd surgery, now having a brain cavernoma (stable and small, found incidentally on an MRI), and because I now have mild pectus excavatum. Really hard to take all that in at age 49.
October 2025: on July 21, I underwent a third open heart surgery to have both of my On-X valves replaced with two St. Jude valves. I also ended up needing a pacemaker (dual chamber leadless). I went with mechanical valves again because of my risks and honestly, I feel very lucky to be alive. Another surgeon I saw did not give me a lot of hope that I would live through this. It would not be good for me to need another heart surgery particularly because I have two affected valves. I know now that there are no guarantees with how long these mechanical valves will last, but I wanted to give myself the chance that these will last a lot longer than my other ones. I was pretty upset to learn that my previously implanted On-x valves were too small, which is likely why they became stenotic and why I was never able to increase my cardiac capacity without getting pretty symptomatic.
Since we happened to have had to relocate again this year from WA to CA, I needed to find a new cardiologist and surgeon here. Sometimes things happen for a reason I believe because it was my new cardiologist that discovered there was a problem with my valves. I’ve had several cardiologists in WA over the years and was always reassured that my valves were fine and that I just needed to work on my cardio. When I look back on past echos, I saw that my gradient on my aortic valve has been high for quite a while. I even have an email where I asked my last cardiologist why my gradient was so high and I told that it was fine for a mechanical valve, but it wasn’t. Neither valve had a normal gradient for years.
So my body adapted to having this crappy level of heart function over the years and I just adjusted to it as my normal. I am always one to encourage patients to advocate for themselves if they feel like something is wrong. I know there was part of me that was in denial that anything could be wrong with these valve since I was convinced by my last surgeon that they would last me a lifetime.
My new surgeon here was actually able to do a mini sternotomy, which was a huge benefit due to the extremely close proximity of my heart to my chest wall. My sternum was still cut open but it is about half the size of my previous incision.
I am recovering well now and started cardiac rehab a couple of weeks ago. I was a little slow to start that because I got set way back with pleural effusions. I’ll be seeing a pulmonologist this week due to some ongoing issues with my lungs so hopefully I will get some answers.
I hope that someday, now that I have the right fitting valves, that I’ll be able to really do the things that I love without getting short of breath or fatigued quickly. I hope that I will become stronger than ever now in my 50th year of life.
More Info About Me & My Heart
More About Me
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I am from:
Redwood City, CA
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My surgery date is:
July 21, 2025
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I was diagnosed with:
Aortic Regurgitation
Aortic Stenosis
Mitral Stenosis
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My surgery was:
Aortic Valve Replacement
Mitral Valve Replacement
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My surgeon is:
Dr. Luis Castro
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My hospital is:
Marin Health
