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onthego3
@onthego3

Posts: 1
Joined: Dec 14, 2016

Aortic Stenosis & Valve Replacement

Posted by @onthego3, Dec 14, 2016

Anyone have this non operable problem according to doctors and tests.its called aortic stenosis

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@divmercy

In addition, I had yearly 2d echo with Doppler tests done almost every year since 2007. Each time the opening of my aortic valve is reduced.LAst October 2016, the measurement is already 36 cm2.

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You should definitely find a surgeon that has done many valve replacements, whether by the less invasive procedure or via open heart surgery. One website you may want to visit to talk to others who have been through similar is valvereplacement.com. I used their message boards alot when preparing for open heart surgery myself. Can you ask your primary doctor for a referral to a good local cardiologist? Otherwise a local university teaching hospital is a good place to start.

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Hi @tavrm, welcome to Connect.
I moved your message to this existing discussion of the same name. I encourage you to read through the past messages to learn more from others. In this discussion you’ll meet mentors, @cynaburst @hopeful33250 and @predictable as well as other members who can provide insight.

You might also wish to read this discussion about TARV where you’ll meet @cb91764 and @ch246cf10
– My heart Dr talking about doing a TARV stent http://mayocl.in/2j1NjqV

You can read more here about Mayo Clinic’s approach to transcatheter aortic valve replacement http://mayocl.in/2j1GhSY and animation explaining the procedure http://www.mayoclinic.org/vid-20303159

I understand the urgency, but commend you on doing your research to find the best care that’s right for you. Have you called Mayo Clinic, Jacksonville and spoken to anyone yet?

@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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I’m also tagging @sauvee and @pbo2016 so they can share their experiences of Mayo Clinic, Florida with you.

Wherever you go make sure that your physician does lots of these procedures. I am not sure whether everyone who needs an aortic valve replaced is a candidate for TAVR or transcatheter valve replacement but you should certainly make sure that you are a good candidate and that the interventionalist you are seeing thinks that you would be a good candidate. Otherwise you may need to look at open heart valve replacement. I think it is always best to research your options for a few days at least and not just jump into anything unless it is immediately life threatening. Valve replacements are usually considered elective surgery so you should have a little time to find the best for your case.

Have you visited the website valvereplacement.com? They have a very active community over there and may be able to give you some good feedback.

Best of luck to you.

@cynaburst

Wherever you go make sure that your physician does lots of these procedures. I am not sure whether everyone who needs an aortic valve replaced is a candidate for TAVR or transcatheter valve replacement but you should certainly make sure that you are a good candidate and that the interventionalist you are seeing thinks that you would be a good candidate. Otherwise you may need to look at open heart valve replacement. I think it is always best to research your options for a few days at least and not just jump into anything unless it is immediately life threatening. Valve replacements are usually considered elective surgery so you should have a little time to find the best for your case.

Have you visited the website valvereplacement.com? They have a very active community over there and may be able to give you some good feedback.

Best of luck to you.

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I am 62 years old, BUT also a 40 year survivor of terminally staged cancer, in which I was on a clinical trial and study for 3 years, from age 22 to 25. My ENTIRE a body was radiated from head-to-toe, 5 days per week, over a period of nearly one year. I've been in menopause for 40 years, with NO estrogen in my body. I have SEVERE osteoporosis. I also have no spleen. I would NEVER be able to have my fragile chest cavity sawed open. "Open Surgery," as you call it is NOT AN OPTION FOR ME. I would NEVER agree to that. The Dr who I'm considering for my TAVR procedure is the director of the TAVR Program, and has performed hundreds to thousands of TAVR procedures, AND has a prolific record of published medical articles. He is at the Nation's #1 hospital for cardiology AND TAVR. I bet you can guess the name and location of that hospital.

@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Thank you, Colleen. I did call Mayo Clinic, Jacksonville, FL… AGAIN today. This is the 3rd time calling them to try to get answers to my questions. I spent SIX HOURS on the phone today with Mayo Clinic, Jacksonville, FL; and have never been so frustrated and disappointed in my life. I was constantly connected to the APPOINTMENT-MAKING line, which I said countless times I did not want. I WANT TO GET SOME QUESTIONS ANSWERED BY THE TAVR DEPT BEFORE I MAKE EVEN ONE APPT. I am livid at the run-around I got — how I could NOT be connected to the TAVR Dept., not even a secretary. Ohhh, and please do NOT mention "BRAD," the person "hired to answer TAVR questions." I tried that in December 2016, got voice mail, and he NEVER CALLED ME BACK. I tried again after holidays, got voice mail, and he NEVER called back. I tried yesterday. NO call back. I tried TODAY, 1/24/2017, THREE TIMES. Voice mail. I left THREE PRIORITY/PRIVATE VOICE MAILS TODAY FOR "Brad." At 4:00 pm today, I learned that Brad isn't in today, AND I WAS FINALLY CONNECTED TO A CARDIOLOGY DEPT. SECRETARY who could not answer one of my questions. Upon speaking to her supervisor, at 4:30 pm today, her supervisor said, "All of your questions will be answered at your first appointment." For the hundredth time today, I explained to this supervisor that I am NOT making an appt. at Mayo Clinic, Jacksonville,  FL, a 7-hour drive from my home, UNTIL I GET SOME ANSWERS TO MY QUESTIONS. The "supervisor woman" then HUNG UP ON ME! (Sorry for the all-caps,  but I am so frustrated, so angry, that I'm surprised my aortic valve hasn't exploded today.)

@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Colleen? Any comments or replies about my post here? 

@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Hi @tavrm,
Indeed. I’m afraid that my response did not go through yesterday.
Your frustration is understandable and I’m sorry you felt your requests for information were handled this way. The Florida cardiology department has likely contacted you directly by now, as your message was forwarded to them.
Did you get answers to your questions?
Colleen

@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Thank you, Colleen. I did receive a call this morning, which my Caller ID identified as coming from the Mayo Clinic, FL Cardiology Dept. But, I promptly refused the call. I did not want to answer; I'm definitely not ready to speak to anyone there, and I don't know if I ever will be. After that horribe day trying to get some answers from the "enigma" that is the Mayo Clinic Cardiovascular, i.e., TAVR DEPT., I spent 7 hours, late into that night, researching OTHER FL Hospitals, as well as researching more about the TAVR PROGRAM AT CLEVELAND CLINIC OF OHIO. Further, I watched the video of the director of Cleveland Clinic's TAVR program (who, himself, has performed over 1,300 TAVR procedures, with only a 1.1% mortality), AND read every one of his published medical articles concerning TAVR, dated 2012, 2013, 2014, 2015 and 2016. He even has his first 2017 published medical article on TAVR completed; and it awaits inclusion onto the Cleveland Clinic of Ohio Website. Colleen, I have a very high IQ, am a sum cum laud graduate (2002) of BW University with a BA in English, and am a published writer with a gift for understanding and deciphering the written word, including technological medical publications. Also, I am a sum cum laud graduate of the Teacher Licensure Program of Notre Dame College, AND a sum cum laud graduate of Notre Dame College's Masters in Special Education  Program. All of those college degrees, I accomplished as a full-time working student who owned her own business, after 40 years of age. Also, a former fitness franchise owner/instructor, having run my own successful business for 18 years, and a former published and featured newspaper reporter, AND an executive in research & development in marketing, I am not one to kow-tow to any sort of unprofessional and rude treatment, such as given me by that Cardio Department manager. The runaround I received for one complete precious day of my life, the unreturned phone calls, and the countless misconnections to wrong departments frightens me to entrust my very life to the Mayo Clinic of Jacksonville, FL. That said, there was ONE EXCELLENT MAYO CLINIC OF FL EMPLOYEE, NAMED "Stacy." I'm not sure of the proper spelling of her name, but she works in the "Appointments and Insurance Coverage Verification" Department. She went above and beyond, sensing my fears and continued frustrations, taking extra time to call the Cardiology Dept. herself. Then, she did all that her job description dictated, creating a file for me, researching my medical insurance and inputting all newfound information into my file. She was professional, respectful, helpful, and followed through on every one of her promises and ideas, all within that one day. And, I have no doubt she had many other tasks and calls that day. SHE is the only empathetic person at Mayo Clinic of FL who made me feel cared about, important, human, and as if I were the most important patient on her que that day. BRAVA, Stacy!So, please DO forward this email to "The Powers that Be," Colleen. I hope they will use my experience to put in place an empathetic, informative, and quick-working system for prospective cardiology and TAVR patients. People facing the life-threatening conditions that are the number one killer in our nation, if not the world, i.e., cardiovascular disease, are most often ticking time bombs who certainly cannot afford the disorganization, delay-tactics, and unprofessionalism I experienced for an entire, previous day of my life this week, via the Mayo Clinic of Florida.It bears mentioning that the Main Mayo Clinic Cardiovascular & TAVR Department Heads, as well as the CEO and CFO of the Mayo Clinic Corporate Headquarters NEEDS to be made aware of this. Colleen, thank you.TAVRM

@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Tavrm, I will certainly forward your message. Should you wish, you can call the Office of Patient Experience to talk about your experience. They can be reached between 8 am and 5 pm CST at this number 507-284-4988.

I applaud your due diligence in researching for the care that is right for you. Above all, I wish you all the best with your upcoming procedure and for a quick recovery.
Colleen

@tavrm

Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….

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Thank you, Colleen. You are very sweet. I'm glad there's been YOU through all this.

I am a 73 yr. old woman diagnosed about 5 yrs. ago with Aortic Stenosis. Last week my cardio said it was time for my replacement. He said because I was still “young” and in good health (walk 3 miles a day) that I should go for the traditional (open sternum) procedure. He also suggested I do it locally but decided to find the best doc and hospital available and am planning on making an appointment at Mayo. I live in OR, so logistics are complicated, but still think getting the best is worth it. And after doing all my research, it is so comforting to have finally made a decision. Good luck to all those going through the research process now. Sometimes I think it is probably more anxiety producing that the actual operation :).

@eugeneo Congratulations on having made your decision. I’m sure it feels good to be on the road to better health. Keep in touch and let us know when you will be having your surgery. We are looking forward to hearing from you soon. Teresa

@hopeful33250

@eugeneo Congratulations on having made your decision. I’m sure it feels good to be on the road to better health. Keep in touch and let us know when you will be having your surgery. We are looking forward to hearing from you soon. Teresa

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Teresa, could you please advise me of the phone number I can call to check out the costs of the various AVR procedures. Need to know a ball-park figure of hosp. and doctor costs from admittance to discharge. Thank you so much for any information you can provide. pat

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