About Me (In My Own Words)
[PLEASE NOTE: FIRST PART HERE IS FROM 2018; 2023 UPDATE BELOW]
In 1987-88, I was treated for Hodgkin's Disease with radiation and chemotherapy.
Thirty years later, at age 55, though very fit and very active, I developed severe aortic stenosis (AS) and was told I need a valve replacement. I also had moderate stenosis of the mitral valve, which is likely to progress. The doctors say I have a classic case of radiation heart disease.
All the doctors said that radiation survivors should not do two open surgeries because the adhesions that occur after the first open procedure lead to poor outcomes for second open-heart surgeries. The Valve Center at Massachusetts General Hospital (MGH) recommended an open procedure at that time to replace the aortic *and* mitral valves with permanent mechanic valves; this was proposed as a "one and done" procedure followed by longterm blood thinners. The doctors I consulted at the Cleveland Clinic proposed a transcatheter aortic valve replacement (TAVR). This is a so-called minimally invasive procedure which avoids open heart surgery. Cleveland has been a leader in performing TAVRs on people with radiation heart disease as a way of managing our risk factors more strategically. In my case, doing the TAVR assumed the need for additional procedures down the road when the the tissue valve wears out and when my calcified mitral valve needs intervention. So I had a lot to think about. I struggled to decide which treatment path to choose, but ultimately settled on TAVR in 2018 for the aorta, holding onto my native mitral valve and saving the option of an open surgery for later.
The surgery went well, with no complications. The OR at the Cleveland Clinic was a sight to behold, and Dr. Krishnaswamy is a master of his craft. My TAVR procedure was on a Monday morning and they sent me home Wednesday. With twilight sedation, I hoped I would remember the actual procedure, but even though they say I asked some questions, I don't remember anything after they started my IV.
My aortic area went gone from 0.74cm to 3.3cm, and measured velocity and pressure are dramatically improved. Slight para-valvular leak but the doctor says that amount is common and not problematic. The most likely complication would have been a pacemaker, but I didn't need one, which is especially fortunate given my right bundle branch block. Amazingly, the sound I hear when I lie down to sleep changed from a loud whoosh to a pronounced beat--the first time I heard that was stunning. Hard to believe I had valve surgery and a week later week I was already feeling great.
So, was I'm really happy about this outcome, and have had some good years with my new aortic valve.
[UPDATE JANUARY 2023:]
Hi HVS family. I hope you are all well and managing alright. It's been a while since I was active here. Mostly just been living life comfortably with my TAVR for almost 5 years. Of course the pandemic has added a lot of anxiety for someone with a heart condition. Now I have a serious update. As expected, my radiation heart disease has progressed, and while my TAVR is still working perfectly, my mitral valve now needs to be replaced. The only viable option is open-heart surgery, and I have scheduled it for January 16th at the Cleveland Clinic (though we still live in Massachusetts). They will remove the TAVR, sew in new mitral and aortic valves, repair the heart wall (commando procedure or similar), bypass one artery, and maybe exclude the atrial appendage. Scary. My surgeon will be Dr. Shinya Unai. I would be interested in hearing from any and all of you. In particular, I would love to hear from you if want to share your experiences with this operation, Dr. Unai, the ICU/hospitalization, and later recovery. Thanks.
Wish me well!
More Info About Me & My Heart
More About Me
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I am from:
Cambridge, MA
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My surgery date is:
January 16, 2023
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I was diagnosed with:
Aortic Regurgitation
Aortic Stenosis
Mitral Regurgitation
Mitral Stenosis
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My surgery was:
Aortic Valve Replacement
Mitral Valve Replacement
Transcatheter Aortic Valve Replacement
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My surgeon is:
Dr. Amar Krishnaswamy Shinya Unai
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My hospital is:
Cleveland Clinic
