Kurt's Journal

I have just updated my entire experience with Dr Chikwe and staff at Cedars Sinai under My Valve Story. Perhaps a slightly long read, but I would have wanted to read something similar before going to surgery. My DaVinci assisted mitral valve surgery was November 30 taking me from 70% regurgitation to zero!

I’m scheduled for mitral valve repair surgery with Dr Chikwe at Cedars Sinai on November 30. She will use robotic procedures and gives me a 99% chance for repair. Can’t hope for much better. I’m hoping my experience with UHC insurance continues to be seamless.
If anyone has experience with nearby accommodations for my wife, I would appreciate the input.
Cheers,
Kurt

So this last week was the follow up echo my cardiologist had suggested I have before launching into surgery options. Between then (December) and now, my original cardiologist retired. My insurance agent had suggested I might need a referral for insurance to cover the out-of-state surgery I was contemplating, so I was a bit nervous to switch cardiologists mid stream. But the new one is great and is fully onboard with the idea. He also told me that the interpretation results of the second echo were wrong and that I had actually gotten a bit worse in the interval. He noted that I no longer have the audible mitral valve "click" that doctors used to comment on but suggested that was probably the case 6 months ago as well. (I also learned a bit more about the functional differences between TEEs and TTEs. I had thought the TEE was just better quality.) The bottom line was that it is time to start getting on a surgery schedule. 

I'm awaiting imaging data from the two hospitals that did my testing so I can send it off to some clinics. My cardiologist casually suggested Mayo Clinic in preference to Cleveland Clinic, but my insurance doesn't cover them. Likewise a local friend had surgery he was very happy with at Stanford - they don't accept my insurance either. So my initial two candidates are Cleveland Clinic and Cedars Sinai. The later is much closer to me in Oregon, but traveling to Cleveland is not a big issue either. If for some reason my bi-leaflet prolapse proves an issue in either case, I can certainly branch out. Oddly, I'm fairly chill about the actual surgery at the moment, but a bit anxious about uncertainty over travel plans and other near-term commitments. Reading some of the stories here probably makes the whole thing a bit easier to contemplate.

I hope everyone else is doing well and happy with their journey.

Had my consultation at OHSU today. Sort of what I expected except I spoke with the head of cardiac surgery instead of the surgeon I was scheduled to see. Also spoke with the interventional cardiologist who did my angiogram and right heart cath procedures. They indicted they were in favor of putting off surgery because they felt my prolapse involving both leaflets did not have a 95% chance of being repairable. So as the cardiologist said, they preferred to wait until conditions warranted a replacement since from that point on "the clock is ticking" on the durability of an artificial valve. As I mentioned in the last update, OHSU does not appear to be highly rated other than in their own estimation. So I feel like this was phase one before I dig further into determining if this really is a matter of specialized competence or perhaps they could be right. Anyone here have experience with repair of repair of both leaflets?

Hi all. I am new to the group. It's great to find this resource. I am relatively asymptomatic but was feeling my heart racing more than I used to. Exercise has little unusual effect and I am still hiking here in Oregon without any particular shortness of breath beyond what I would normally expect. But I was recently told by my new doctor that my mitral valve prolapse had gotten to the point where I need to do something about it. He ordered a standard echocardiogram and 2 weeks on a heart monitor taped to my chest. The echo shows significant regurgitation but the heart monitor showed no unusual symptoms. He set up an appointment to see a local cardiologist, but my wife suggested I see one in Portland, Oregon where we used to live on the assumption that bigger city hospitals might be better equipped to handle these surgeries. So I saw a cardiologist in Portland at OHSU who set my up for a transesophogeal echocardiogram and an angiogram. Those are coming up shortly. I was also set up with an appointment next month with another cardiologist and a surgeon. In the meantime I began researching what mitral valve surgery would entail. I found the STS database and a few other sources before finding this site. I began to be concerned that OHSU doesn't seem to register with the research sources as a place recommended for mitral valve surgery. I see that places like Cedar Sinai, the Cleveland Clinic and a host of others have good reputations in this area. I wasn't encouraged by the fact that OHSU had to shut down their transplant program at one point. So I'm wondering if anyone has additional recommendations as to whether I should look at traveling somewhere else for surgery. I have the results of the original standard echocardiogram and have asked to receive the results of the upcoming tests so that I might consult with other surgeons. OHSU is apparently known for the their transcatheter research, so I"m a little concerned that they may default to replacement procedures over repair options. What sources are there besides the STS database for researching mitral valve repair outcomes and experience? OHSU does not show up on STS or most other review sources. Cheers, Kurt