About Me (In My Own Words)
Entry #1
I've had a heart murmur all my life, or since very very young anyway. It was never deemed to be a problem until January of 2017 when my BP got very high (I blame it on work stress), which made the murmur more pronounced. That, along with arrythmias, landed me in a hospital in Kansas City (home), with my very own new cardiologist, and soon getting echo, stress echo and transesophageal echo procedures.
Diagnosis was mitral valve (MV) regurgitation, moderate to severe. I have a weird little MV - doesnt look like degeneration, or rheumatic fever damage-- maybe congenital or some infection when I was tiny. I was told I would need surgery someday, but for then (Jan 2017) we would just repeat echos annually. Annually became every 6 mo, and in early 2019, I was told we should proceed with surgical consults.
I was utterly TERRIFIED of open heart surgery, so very soon after diagnosis I had started looking for minimally invasive options. In that search I found Cleveland Clinic, and their achievement of doing the vast majority of their mitral valve sugeries by repairing vs replacing, AND via minimally invasive and robotic approaches! This was the place, I told my cardiologist, and she supported the choice.
I sent records to Dr. Gillinov, initially hoping for a robotic repair. Soon after, for some reason that was never quite clear to me at the time, my case was sent to Dr. Kapadia for evaluation for a mitraclip procedure. This sounded even better! A visit was set for July 23, 2019, to have testing (blood, EKG, CXR, echo, TEE, and CT), and appts with Drs. Kapadia and Bakaeen (surgeon) - just to present me with all the options. Everyone at CC was absolutely great.
So Im now home from that visit, still spinning a bit. As I understand at this point, my valve is scarred and thickened enough that it is not amenable to robotic repair. The size of the refluxing area is too big to be handled with one mitraclip - and two would likely block too much of the flow. The scarring and thickening of the anterior leaflet is such that repair in general may not be an option, and btw, my acsending aorta is about twice as wide as it should be. More than likely the dreaded sternotomy picture is in my near future. Oddly, Im not as terrified as I was at first.
Dr. Bakaeen would like to try repair, with replacement as the default plan. And take a look at that aorta while he is in there.
The docs spent a lot of time with me, but I realize now that it was mostly ruling out options one by one with each test result rolling in. I still have plenty of questions about what we will actually be doing. What incisional and valve options do I actually have, how will he attempt repair, impact of time on pump, which REALLY ends up being more painful - sternotomy or partial sternotomy, or the 4 inch between the ribs under you right arm approach? I've read Adam's book twice now, and Gillinov's, and lots of other stuff. I'm just now entering the world of valve options, and entering this community. I thank you all in advance for your support and stories of your own experiences.
Here we go!
Jennifer
08/03/2019
Entry #2
I don't have a lot to add, but yesterday I had a LONG, yet unrushed, conversation with Autumn, Dr. Bakaeen's nurse. She is just great. We even ended up laughing and joking a bit and looking forward to meeting each other.
She clarified a lot that was still fuzzy for me, like the fact that when they found the aortic aneurism, that knocked robotic, clip, and minimally invasive off the table. So it is pretty clear that I'll be having full sternotomy.
I also learned more about Dr. Bakaeen and feel very comfortable with him as my surgeon. I haven't had any atrial fib, so there is no need for any ablation procedures.
Autumn raved about the attention that was given to infection control on the units and their very low infection incidence. Also reassurring.
I had stumbled onto this in my own research, but she affirmed that there is a chance that I have some genetic aspects of a connective tissue disease spectrum, signs of which include the thoracic location of my aortic aneurism, the mitral valve abnormality, some of my blood vessels being "tortuous" in nature, even having had a lot of nosebleeds as a child. Intriguing!
I finally have a real surgery date - Sept. 10. I need to get a heart cath done here, then the day before surgery will include bloodwork, pulmonary function tests, ultrasound of my carotids, the genetics consult (regarding the connective tissue disease link), meetings with Dr. Bakaeen and the anesthesiologist, and an educational session with pre op nurses. Then comes the big day!! My nephew Jake and my best friend from nursing school will be with me.
So Im getting my "affairs in order," and planning with friends and family for my before, during, and after surg needs, there and back home. We are having fun, actually! Lol!
I am very fortunate to have a wonderful support system! If you are reading this, you are part of it!!
Love you all,
Jennifer
More Info About Me & My Heart
More About Me
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I am from:
Kansas City, MO
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My surgery date is:
September 10, 2019
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I was diagnosed with:
Mitral Regurgitation
Aortic Aneurysm
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My surgery was:
Aortic Aneurysm Replacement
Mitral Valve Replacement
Mitral Valve Repair
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My hospital is:
Cleveland Clinic
