About Me (In My Own Words)
Many thanks to the folks in this group who have shared their stories. I have been tracking my AS since my PCP detected a heart murmur in a routine exam about 7 years ago. I follow several groups related to valve replacement but I’ll admit my following the TAVR group was somewhat aspirational because when I first received my diagnosis my cardiologist laid it out for me with the best information available at the time which suggested that I would not be a suitable candidate for TAVR. Before ever scheduling my first Echocardiogram my cardiologist told me that at my age (then 58) I likely had Aortic Stenosis, probably a result of a congenital birth defect (Biscuspid Aortic Valve), I would in all likelihood need a new heart valve by the time I reached 70 (I made it to 65). He then went on to tell me that I would eventually require open heart surgery and that the transcatheter procedure I had heard about was not going t be available to me – due to my bicuspid valve, my age, and otherwise good health.
Lots of progress ensued around TAVR since my first AS diagnosis and my new cardiologist felt that I would probably be a suitable candidate for TAVR, which gave me lots of hope. I was living in a town with a good teaching hospital, but I always knew that when my disease advanced to the point of needing an intervention I would seek care at one of the leading centers for excellence for heart care.
The first one that I chose, Cleveland Clinic, let me down. I scheduled an appointment with them in the summer of 2024 and the earliest appointment I could snatch was in December – but I took it because the care offered by Cleveland Clinic is often referred to as the gold standard. That was not my experience.
The cardiologist I was scheduled to see was listed as having both an MD and PhD. I felt comfortable knowing that the physician I was consulting had experience in viewing my disease from multiple perspectives.
I arrived in Cleveland a day early. It was December in Cleveland and they were forecasting lake effect snow. I have lived in the Midwest long enough to know that I might risk losing the appointment I had waited months to get so I went a day early – just to be safe.
I showed up at the clinic an hour early, I went through registration and EKG appointments early and was brought into my appointment with my cardiologist early as well. Our meeting was shown in my chart to have lasted 90 minutes. I wasn’t in his office for 20. I was met by a Fellow on the doctor’s staff who was interviewing me about family history, symptoms, etc. when the doctor I was to meet walked into the room and interrupted our interview to announce that based on what he saw I was in serious condition and in need of SAVR. He said he would have the surgeon contact me the following week.
I was a little stunned as I had expected to have at least been told that further tests were needed for the best intervention for me. It appears TAVR was taken off the table and I was being told to report to surgery. I wasn’t prepared for that, but I accepted it, thanked them for their time, and headed home preparing a list of questions for the surgeon.
So, I knew that my condition was serious and in need of treatment. I had one doctor tell me I would likely qualify for TAVR and a doctor at the institution where I would have liked TAVR telling me that SAVR was my only option. Surely, I thought the surgeon would have more to say about whether I would benefit from further testing to see about my suitability for TAVR.
I was sweating bullets waiting for that call the following week, but it never came. Cleveland Clinic totally dropped the ball. After having been told that my condition was serious and I was in need of surgery, it would be another 27 days before I received a call from them. I quickly developed a plan to seek treatment at another institution with an outstanding reputation for heart care: Northwestern Medicine and the Bluhm Cardiovascular Institute of Chicago. I reached out to Northwestern and within a day my call was returned, and I was set up for appointments and tests. Everything was handled with so much thought and precision that it instilled in me the confidence which had just been shattered by the Cleveland Clinic.
The first test was a CT scan where I learned that I would qualify for TAVR. But there were other concerns my cardiologist and surgeon mentioned about my situation – an opening larger than one suited for even the largest of 3 TAVR valves, a large annulus – combined with my otherwise good health made me a good candidate for a less invasive procedure known as an Upper Hemisterotomy – essentially a smaller incision, less hospital time, and faster recovery time. Doing this procedure with a tissue valve would allow them to set me up for TAVR if/when my new valve needs replacement. While it wasn’t TAVR it wasn’t full-on SAVR and knowing that if TAVR doesn’t go right, going into repair it via SAVR creates more risk.
The team at Northwestern gave me confidence. Trust was critical because I was being told that without showing symptoms, I was going to subject myself to open heart surgery which held the promise of fixing this ticking time bomb and setting me up for a better outcome. The trust threshold they needed to meet was extraordinary. They passed with flying colors. I spent the 4 weeks after learning that I was having this procedure not worrying but preparing myself. I felt good about trusting Northwestern with my health – and my life. I went into surgery with a smile on my face. What’s that worth?
My hospitalization and start of recovery went off without a hitch. There must have been hundreds of things that could go wrong, and this team made it seem as though they were equipped to deal with every single one of them. I am deeply grateful to Northwestern for throwing me a lifeline.
The surgeon’s office at Cleveland Clinic finally reached out to me 27 days after my appointment there. I let them know I had already reached out for help elsewhere.
I received a “request for feedback” from my Cleveland Clinic cardiologist immediately after our appointment but I held onto the link because I felt I needed to have more information about what was going on before leaving a possibly unfair review. Unfortunately, by the time I was ready with data the link had expired. I contacted Cleveland Clinic to see if they would re-open it – I think it’s fair to let other people read about bad experiences. They declined to do this but instead referred me to their ombudsman, which is like an internal watchdog group. I reached out to them for answers about what might have happened in my case, how I fell through the cracks. The Cleveland Clinic and Northwestern are supposed to be comparable in terms of medical centers for excellence. The only response I received from Cleveland Clinic was a phone call from the cardiologist I met with who seemed annoyed that I reached out to the ombudsman, and he told me that the surgeon I was referred to was extremely busy. I guess that means everyone with a serious condition in need of surgery should expect to wait 4 weeks for a call? He didn’t say why I never received follow up from his own office.
Suffice it to say that I can say with absolute certainty that there is no way I could have fallen through the cracks at Northwestern. They left no stone unturned from the time I reached out to them for help through the most difficult decision I’ve ever had to make, and it continues. I will be forever in their debt.
Today is day 9 following my surgery – every day feels better and better. In some ways I already feel better than I have in years.
My advice to anyone who might not be a great candidate for TAVR is to look for other options. It turns out that sometimes even the centers for medical excellence make mistakes. And for anyone trying to decide which center for medical excellence they want to handle their care, online reviews only go so far. I mean – why wouldn’t Cleveland Clinic have just refreshed the review link and allowed me to share my story with prospective patients?
More Info About Me & My Heart
More About Me
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I am from:
Summerville, SC
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My surgery date is:
February 13, 2025
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I was diagnosed with:
Aortic Stenosis
Bicuspid Aortic Valve
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My surgery was:
Aortic Valve Replacement
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