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Diagnosis: Aortic Regurgitation, Mitral Regurgitation, Tricuspid Regurgitation

Member Since: August 21, 2016

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Marie Leighton posted an update

9 years ago (December 1, 2016)

First thank you all so much for the prayers and concern. I'm here at Mayo in MN. It is the most amazing medical complex I have seen. The level of precision and care was inspiring. Yesterday I had the most comprehensive and impressive echocardiogram of my life, and I have been having them for over 20 years. It took an hour and a half and many images, and was done by not just a tech but also a cardiac intensivist, and another MD was next door, also reviewing the films and consulting with the intensivist. I also had other tests as expected. Today I saw a cardiologist and the top cardiothoracic surgeon here. They were delightfully kind people. ( I can't believe I'm saying that about doctors.)The Mayo echo, blood work, and all other tests here confirmed one another. Much different results were found than my LV cardiology tests, and some different results than Cleveland. All were reviewed and compared side by side. Differences between the 3, and the trending of the numbers and previous tests were all done. I do need valve surgery, and it will need to be full valve replacement, possibly 2 valves, and not repair because of the type of leak...someday, but not yet. It might be a year from now, or 10 years, but now is not the time. Had I stayed in Cleveland, and had the original surgery, or accepted their substitute surgeon, or proceeded with treatment in Las Vegas based on the test results there, I would be recovering now from needless open heart surgery. These were gentle and knowledgeable clinicians, who took time to review, explain, and answer every question - who really want to help people and actually live by the Hippocratic oath rather than the almighty dollar they get from cutting. They don't cut needlessly. For now, You may think that I am crazy and might be right. but we trust this, (and I never trust doctors) and I am more grateful to God than I can say. Why we had to go through all this, and take you along for the ride, I do not know. Someday He will tell us. Isaiah 55:8-9 ESV For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

👍 Someone, Darlene Smith and reacted to this

Catie B

Wow, Marie! That is very, very impressive. I'm so thankful to hear after the difficult times you had in the last few weeks, that the outcome is now so positive. And that you found doctors you can trust. Wonderful!

Phyllis Petersen

I'm glad that you have found peace and confidence with the doctors there. How will you be monitored going forward to make sure you know when the time is right?

Marie Leighton posted an update

9 years ago (November 5, 2016)

For those of you having surgery on Monday and Tuesday: may God keep you in perfect peace, guide each surgeon's hands and thinking, and bless the patient and the entire care team. I pray for a quick and complete recovery, an excellent inpatient experience, and a happy and fulfilling life... Read more.

👍 Ed Miskovic, Jody Adams and reacted to this

Robert D'aurora

Thanks Marie, good luck and prayers to you too.

Patti Kinsey

I am not having surgery but an angiogram on Tuesday and you just gave me s smile and a sense that I am not alone. ðŸ’–

Jerry Grimes

Thanks Marie. Confident and optimistic about the future.

Marie Leighton

Patti, you are never alone in this group. We are all in this together. I did have the angiogram already, it was not bad at all.

Marie Leighton posted an update

9 years ago (October 19, 2016)

Well Dr Gillinov is going on vacation tomorrow and I no longer have a surgery date, a surgeon. Or a hospital. He has decided that "trust has been compromised" and if I am lucky he will suggest another surgeon, possibly NOT at Cleveland clinic. All this because my poor frustrated... Read more.

👍 Someone reacted to this

Darlene Smith

What??? That's terrible!!!! I think you should absolutely not go back to CC. There are many, many more wonderful surgeons and hospitals. I know that will be rough on you at first, but you need to put your absolute trust in this person and that includes every member of his... Read more.

Diane Zeigler

What on earth happened? I feel so badly for you. I had such a wonderful experience at CC and it makes me sad that you have had this happen. Seems like Dr Gillinov, being the renowned surgeon that he is, maybe has gotten a little haughty. There are many excellent... Read more.

Wanda Mroz

Wow! How uppity is that? There are many hospitals and surgeons that are highly trained to do these surgeries. They don't hold the only knowledge out there. I think it's pretty irresponsible to leave someone hanging who needs surgery. I truly lost respect for CC. TOTALLY UNACCEPTABLE. I'm praying you... Read more.

Civita Fahey

Wow that is unacceptable! being in healthcare, the patient comes first and always first!. I would definitely bring this up to the Chief Medical Officer or whomever heads the CC.. There are many, many hospitals in this country that could and would do your surgery and would understand frustration from... Read more.

Marie Leighton

Still not sure what we are going to do. Can't get a flight home until Saturday. This morning The nasty mean staff member grudgingly gave us the name of another surgeon we never heard of, who's list of experience says nothing about open sternotomy

Marie Leighton

As it turns out Dr Gillinov is leaving this afternoon for this sudden vacation. Right now however someone slipped and told us What they didn't want us to know: that he is in the OR doing another persons surgery this morning! His team is now hanging up on us when... Read more.

Marie Leighton

The chief medical office dumped us to the ombudsman.

Catie B

I am soooo sorry, Marie! My heart aches for you.

Ellen Leng

Wow, Marie, that is awful! You have had such a road. I think it would be hard for you to trust Dr. Gillinov at this time, so you probably should seek a different surgeon. There are other great valve surgeons at CC and elsewhere. I cannot imagine what you are... Read more.

Ellen Leng

Please know that we are all in your corner

Marie Leighton

At this point we are making plans to get home as soon as possible - Saturday- and to pick up again with Mayo Clinic who I had also originally sent my records to. We have been diverted, given conflicting information, avoided, put off, and spoken to in a most disrespectful... Read more.

Marie Leighton

Thank you all for letting me vent and cry, I will keep you posted on new surgery pace and date. ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”ðŸ’”

Marie Leighton

I wouldn't necessarily say anyone else would have the same experience. I hope sincerely that they do not.

Phyllis Petersen

I've known from other experiences in my life that sometimes one person can create an avalanche of problems and attitudes that you just can't seem to get out from under. It's especially hard when you're new to them and their staff member is part of the fabric. I'm shocked how... Read more.

Ben Hyman

Sounds like CC is getting too big for their britches. I'd look at Mayo in Rochester MN- I'm having a consult there in a few weeks. They're ranked #2 in the nation for Heart Valve surgery right behind CC. You may also want to look at Minneapolis Heart Clinic headed... Read more.

Marie Leighton

Thank you. The new plan is Mayo in MN. More to come.

Marie Leighton

I love my â¤ï¸Brothers and sisters - each of you have helped with your insights and I will keep you posted.

Chris Vereb

My surgeon is Dr. Kevin Greason of Mayo Clinic Rochester Minnesota. You can look him up on YouTube...ðŸ˜‰

Marie Leighton

Chris thanks for the MD suggestion, I will research that MD. I guess the biggest thing I have to pass on would be to ask "what is plan B?" Ask what happens in case an emergency comes up.