“How About An Interactive Chat With A Cleveland Clinic Surgeon?” Asks Adam

I have been diagnosed with aorttic stenosis and the Cleveland Clinic is one of my selections for the procedure when it becomes necessary

sounds great….count me in.

That is a great idea Adam. I have a question I would like to ask……
Is there an alternative medication to Coumadin for anitcoagulant therapy that may become available in the near future ? I have a mechanical aortic valve and of course have to be on Coumadin the rest of my life unless something new and better becomes approved.

GREAT IDEA! WOULD LOVE TO PARTICIPATE..STILL HAVE CONCERNS ABOUT RECOVERY AND THINGS LIKE DIFFICULTY SLEEPING.

My son Jesse is 30 years old. He was born with a bicuspid aeortic valve. He has had a surgery to remove an aeortic coarctation ( Dacron section inserted). He has had two surgeries ( at 5 yrs. & 14 yrs old) to open up his valve to help it work better. In October 2009 he had the defective aeortic valve replaced with a porcine valve. After the surgery a hole suddenly appeared that is allowing blood from one chamber of his hear into another. This hole is very close to the valve in the inside. It is only a few months from his surgery and now they need to go in again and take out the valve and fix the hole and then put in the valve again. They want to put in a mechanical valve now. He does not want a mechanical valve. I would really love to talk to a top surgeon about his case.

Even though I had my aortic valve replacement back in November, I still would like to hear what this surgeon has to say. I may learn some new things and get some tips on how to keep improving my health

Hi Adam
I would be interested but I’ll be 4 months post-op by then so I’d be asking post-op questions such as why my heart beat is still so irregular – something referred to as ?pcp’s – and I want to know if this is dangerous and if my heart beat will ever be regular. I had a mitral valve repair and now my mitral valve still has “trace” but minimal regurgitation, minor AI and mild to moderate tricuspid regurgitation.

Would you want the questions in advance or do you see this session as being totally spontaneous?

Cheryl, Ontario

An outstanding opportunity and I would like to participate. I have mild to moderate aortic valve stenosis without symptoms and therefore would gladly bow out if you have to limit the participation.

Would it be possible to record the session and offer it on your website?

Yes that sounds great Adam. My brother is 43 shortly and is due to have his bicuspid aortic valve replaced in the next month or so and we would like to know what other surgeons think of someone his age having a tissue valve rather than an artificial one as he is quite young.

I would love to be a part of the online chat session. Unfortunately, for 2 reasons, I would be unable to participate. The reasons being, 1) the time slot is during work hours and 2) because I am deafened, and unless the chat is captioned, it would not be available to me. Is there a way I could read a script of the session at a later date?
Thanks.

Yes, I would be interested. I will be facing a second AVR soon and I have questions regarding the ON-X valve. And what about a homograft in place of the aorta instead of the Ross Procedure?

Don

I would also love to participate. Would this be an online chat where you submit your questions beforehand? Or is it a live chat where everyone submits their questions at once? I’ll be 1-yr post of in about 10 days and interested in knowing what could cause my other valves to leak when they weren’t before the surgery as well as the long-term outlook of my repaired aortic valve (since it’s leaking again).

I will be definitely interested. Any chance to move the time? 2PM EST is in the middle of work day in both coasts. Noon or 3PM EST may work better for working people since it would coincide with lunch time on the east or west coast.

Thank you.
Kemal

Thanks Adam for the wealth of info you continue to provide!
Please count me in!!! I would love to participate. I am in need of a re-repair of my mitral valve. I plan to go back to Cleveland Clinic (Ohio campus) to have my surgery. I am in search of the best and most experienced Dr. there to do my surgery for this re-repair. Dr. Cosgrove did my first surgery 2/25/98. I was so thankful for my local Dr. at that time that sent me to Cleveland Clinic to Dr. Cosgrove. If anyone has had a re-repair of the mitral valve at Cleveland I would love to talk with them. Trusting God will provide and guide me to the expert in this surgery!

I would LOVE to have this opportunity. i have some specific questions about bicuspid valves, aortic aneurysms and genetic disorders that I think might be very useful for many of us to hear about. I’d also just be interested in answers to any questions others might ask. This seems like a fabulous opportunity!

Yes indeed. Thanks Adam!

I had an aortic valve replacement at the Cleveland Clinic in May 2009. Dr. Pettersson was my surgeon and he was wonderful before, during and after my surgery. The entire staff at the Cleveland Clinic took excellent care of me and my wife. I would welcome an opportunity to participate in the online chat on Feb. 3rd.

Bob

It looks like there is great interest for this session and that there would be plenty of participants. I am also working at that hour, but also will be one year and one month post-op for my AVR at Cleveland Clinic.

I would still be interested in some of the topics sure to be discussed. I think the comment from “dmhs” above would be a great idea — to possibly have a transcript available after the session for others to read and learn from. What’s the chance of that, Adam? Thanks!

I’m interested.

PS: to M.Montgomery:

yes there are a number of new anticoagulants in the pipeline.
Google “new anticoagulant to replace warfarin”.

Tom

Can you discuss the statistics on the success rate of non-intrusive surgery versus more traditional open heart surgery for aortic valve replacemnt.

I would very much like it, but happen to be already scheduled for a telecon at work at that time..

Thanks

I had Aortic Valve and Major Aorta repair on Sept 30.

Rich,

It sounds like a great idea. I had my surgery in June 2009 but still would like another opinion on some of the issues I am dealing with. I’d even take the afternoon in order to participate.

I’m in!
Though I’m Canadian and had my aortic valve replaced July 24, 2009, I still find myself struggling through recovery….I get exhausted sometimes seems out of the blue and have to just go and sleep…pain in my chest if I don’t wear my binder when driving or anything strenous, and lately lots of trouble sleeping….so ..lol..yes lots of questions but I’m sure I’d learn even if I didn’t get to ask one….
And Cheryl glad to see another Canadian on here!
debbie, North Bay, Ontario

I also think it is a great idea, however I would have to read it at a later time if that is possible. My dr recently told me that I am among the very few patients where the nerves will never completely heal in my chest. This after 14 months post op. open heart mitral valve repleacement, and a continual sore chest.
So many people, so many topics — It would be a huge endeavor, but very interesting and a great service to heart patients.

I would be interested.

yes i would be interested in the web chat. Dr Sabik replaced my aortic valve on 12/01/09. He and the cleveland clinic are the best

Hi Adam,
I have communicated with you previously regarding my daughter needing heart valve surgery sometime in the future. She just had a check up at the Cleveland clinic and it looks like she can wait a couple of years, so good news. She is 19 now. Anyhow, I would be interested in being a part of this. They are talking about the Ross procedure for her.
Jim

I HAD A MITRAL COMMISSUROTOMY AT AGE 36, IN MAY, 1972 AND A MITRAL VALVE REPLACEMENT IN JULY,2001. MY AORTIC VALVE, WHEN LAST CHECKED. SHOWS A MODERATE STENOSIS. I AM DUE THIS WEEK FOR MY ANNUAL ECHO-CARDIOGRAM. I MAY NEED SOME ENCOURAGING WORDS AND WELCOME THIS OPPORTUNITY COME FEBRUARY

I would be interested in participating in the web chat. Dr. Sabik replaced my aortic at the cleveland clinic on 12/01/09. Dr. Sabik and the clinic are just wonderful.

I would like to participate.
How long would the sessions be?
30 to 60 minutes would be best for me.
Blaine

Yes, I’m definitely interested.

I am interested….I had an AVR and a Maze procedure on 10/08/2009. This sounds like a great idea……

It would be a wonderful opportunity and very informative.

I would like to participate. I had an aortic valve replacement on October 2, 2009 at the Cleveland Clinic. Dr.Edward Soltesz was my surgeon and I was very pleased with my surgery results.

Adam, Judging from the responses prior to mine, you have an overwhelming YES, we want a live chat. I will be facing replacement for my bicuspid aortic valve before too long, and though Cleveland Clinic will likely not be the place for me, I would be interested in hearing from those with such a wonderful reputation. It seems that there is something new every month and I want to be sure I know as much as possible when talking to surgeons and looking at options. Thank you for once again finding another way in which to educate those of us in this situation. You are a true friend!

I look forward to this. I have been “released” Until my first anniversary of my heart valve(porcine) replacement at the end of March. My problem is that I live about 30 miles from my surgeon, and it is too much of a hassle to get to the man on an “ad lib” basis if I have questions, concerns, etc. I intend to ask a pharmacy-related question, if the chance presents itself.

A live chat would be great

What a wonderful opportunity. Would love to participate or at the very least ‘listen’ in! Thanks!

I would be interested in a chat. I have a bicuspid Aortic valve and a 4.3 cm ascending Aortic aneurysm

I would be interested
Randy

absolutly – this would be great to listen to a doctor from the world’s leading heart hospital.

Yes! would like to participate….my husband will be having Aortic valve replacement soon, and we’re trying to prepare mentally, physically, and spiritually. Being the caregiver, I’m also hungry for information on how to care for him & what to expect. He’ll be having the surgery at Swedish Hospital in Seattle.
thank you,
Judy

(pls. let me know what I need to do to ‘participate’ in this event)

What a wonderful opportunity – yes I would be interested in the Cleveland Clinic discussion.

Hi Adam I live in Ballarat, Victoria, Australia and I think this would be of great benefit to people needing heart surgeery. Keep up the great work! Cheers

HI Adam,
I am not sure, I am in a kind of fog right now. Dec. 28th went to cardiologist on recomendation of my primary heath Dr. I see him for diabetes. I’m 60 last july.
he said he thought he heard a murmur and had echocardiogram done on dec 29th and saw associate on 30 dec. Another “Dr. bad bed side manner” introduced self and said “what do you think about open heart sergary” my Father in 1967 had valve replaced and lived 2 days. What could I say I know big changes since then but I think he could have approched me differently. What I got out of the meating is my aortic valve apears to be opening 0.7cm (not real good) and they wanted to do an angiogram for further test the were unable to determin if I had a tri or bi flap valve with the calcium build up.
So I gues that Friday the 15th Jan 2010 I will find out the next set of steps I will take here in cold Connecticut.
Your book is helping me get a good list of questions for the DR.’s and understanding what is going to happen I guess it is more a question if repair/replace when and where. I will do what has to be done and am ready for what is to be done. “don’t worry instead ask the question can I do anything about the situation. if the answer is yes. Don’t worry DO SOMETHING ABOUT IT. If the answer is no. Don’t worry YOU CAN’T DO ANYTHING ABOUT IT.”
TNX
AHB3

I’d love to know the latest thoughts on the Ross Procedure. I know it worked great for you, Adam, but lately I’ve heard it’s fallen out of favor. I have severe aortic insufficiency, a possible bicuspid valve but no aneurysm or stenosis. I’d be interested in considering the Ross Procedure (I’m 42) but wouldn’t do it if the risk of a re-operation is high (for me, 20% is high).

Yes, I would be interested in a live chat with a surgeon. In particular I would like to discuss the pros and cons of mechanical vs porcine or bovine and if the ON-X valve is likely to become a coumadin-free alternative. I’m scheduled for an angiogram for January 22nd for possible aortic valve and aortic root graft within a few months (maybe May). I used to scrub as a tech in open heart during my surgical tech training. I am very active outdoors and if I take coumadin, I’m afraid that I would bleed out within a few months of surgery (I beat myself up terribly ).

Yes, I would be very interested!

Hi Adam, This is so awesome. I would definitely be interested in this. Just let me know.

I’m just beginning my research about mitral valve repair, after determining that the valve is much worse than before. I’m an HCM patient already. So I’d be very interested.
Thanks

Will adjust my schedule; appreciate this opportunity!

Very much interested !

Hi Adam and all…

I will be having my mitral valve replaced on January 29th. Going mechanical. I would be interested in others that went mechanical (I call it bionic) if they hear it or others hear it. I am pretty small but my Surgeon, Dr. Gaudiani at Sequoia Hospital in Redwood City CA is strongly suggesting this. I decided to embrace it and go bionic but realize there are many pros and cons to both.

Wish that you could setup a blog for different categories and people can chat. For example, can people hear their bionic valves, or was your biggest surprise. I follow and read all the ones that you (Adam) sends out.

Janet in the East Bay… California.

I am scheduled for surgery with Dr Gillinov on March 18th. Preliminary report says a mitral and aotic valve plus a MAZE procedure. Since I have not had that procedure discussed in your blog it is a question I had planned to ask you, Adam, so you could contact your wonderful readers. Thanks.

I would be very happy to speak to the famous doctor for an answer to my question

Yes I would be interested in attending this live interactive session.

Would be very interested to participate.

Yes I would be very interested in participating in this forum.

Hello Adam,

And congratulations on arranging a conference with Dr. Gillinov. He is a very remarkable surgeon, as you will see if you visit his bio page on the Cleveland Clinic Website (Cleveland native, worked in the heart OR while in high school, graduated Cum Laude from Yale, etc.) He is still a young man!

I suspect that Dr. Gillinov will be the surgeon that replaces my wife’s aortic valve in 20 plus years hence. Dr. Lytle implanted it six months ago, and by the time it wears out, he probably be retired. We are extremely interested in Dr. Gillinov, and in participating in his program.

Jim and Betsey Hilbe

I would particpate.

Thanks for the opportunity!

I would be very interested.

Doug

Dr. Gillinov performed a minimally invasive aortic valve replacement for me on 10/19/09. I was delighted with the results and with my very speedy recovery. Dr. Gillinov was most gracious with his time and answered all my questions, but over the last couple of months other questions have occurred which I would love to discuss with him and others.

Absolutely interested!!

Really bad timing for me: I will either still be in the hospital, post-op, or just home and unable to climb to my second floor office where the computer is.

Is there a chance you will have a transcript of the session available for us? I know I will be avidly interested.

I am interested as I have moderate/several mitral valve issues……….I am nervous

This is a super opportunity! I would appreciate a discussion of minimally invasive aortic valve replacement for elderly (90′s) patients….such as Core Valve and Edwards Sapien…. any other suggestions for this age group.

Yes. I will participate in the live conversation.

I would love to participate in the live chat but can’t because I would be working at the time, but I have a question that I would like asked. What do think of repairing a faulty aortic valve. My surgeon said that he advises against it because the repair job just doesn’t last. I live in Alaska and we don’t have very many heart surgeons in Alaska, only about seven.

Thank you and the wonderful surgeons of the Clinic for providing us with this opportunity.
Keep on ticking.
Aloha
Paul

I’m not sure if you meant email address or land address. I live in Carmel CA., 74 yr old
woman, anticipating aortic valve replacement. Very interested in knowing what the prognosis is for elderly folks…..and what the recovery time is……how debilitated they are ….
from the surgery. How would the quality of life be ‘improved’? And, yes, I thing this kind of interview with these doctor’s would be great.

Thank you,

Marge Wright

Yes, definitely interested.

Great idea! Count me in!

I would be very interested in this event. Thank you, Adam, for all of the work you do on this site. Both your book and the opportunity to create my online journal have been so helpful, and the outreach I’ve received from you and others is priceless. Thank you again!

I would be interested in the online chat. I have a specific question about the healing of the sternum. Have had some pain, not real bad but I am wondering if its scar tissue. I also have questions about the cow values and how long they will last. Sounds like a great opportunity to hear others who have had valve surgery. I had an aortic value replaced in July of 2009 and I am 54 years old.

Yes I would be very interested in the live web Chat.

Looking forward to it.

Great idea.

yes! and other fam members would attend too…thank you!

I definitely would be interested, but I will be recovering from my mitral valve repair surgery on Jan. 28. Don’t know what kind of shape I’ll be in. What a great opportunity!

I would be interested. Sounds like a great opportunity.

Yes, I would be interested in hearing from and being able to interact with the Doc’s from Cld. I have a 13 yr. old who has had two open hearts for mitral issues. As we move from Ped. Docs to adult Docs we would like to hear about some of those issues and also hear what the Docs see coming in the next 5 to 10 yrs. with mitral valve patients.

Yes, I will be extremely interested to join in this web chat.
I had Mitral valve repair at the Cleveland clinic in August 2009.
It will be great if we could have a transcript.
Thank you very much for arranging this for us.

Qustion. How much additional time is required for a Mayes procedure added to an aortic valve replacement. What are the results for atrial fibrillation with this procedure. Will it reoccur?

very interested in in learning the difference between valve replacement and valve repair…..

We would love to listen in and/or read a transcript. My husband had Mitral Valve repair 12 years ago. Now anticipating Aortic valve replacement for a leaky valve. Maybe you could have some questions ready from readers in advance. I’m sure many of us have similar concerns such as whether to travel for the surgery or stay local? What complications can we expect for a 2nd surgery? Thanks for your blog and books, Adam. They are very helpful!

Hi Adam

I would love to participate but can’t because I will be in India in a remote place where there is no internet connection. But I do have questions that i like to get answered. Can i send my questions ahead of time? Please let me know.
Also is there a way to record/save the interactive webchat so all of us could refer back to the Q&A anytime? Thank you for taking the initiative. God bless!

I am expecting to require aortic valve replacement later this year. I am thinking of having the surgery at the Cleveland Clinic. After reading a lot of the material provided by their web site and in your book, I still have questions. I’d appreciate the opportunity to ask them and to find out more from the questions of others.

Great. What a good opportunity. Thanks.

Please schedule. I would love to hear from Gilinov and Pettersen as these are the two doctors I am targeting for my aortic valve replacement/ascending aortic stent – when the time comes.

Because no surgeons in my area performed minimally invasive aortic valve replacement and because of Cleveland’s 15-year history of doing it with outstanding results and because of Dr. Gillinov’s reputation, I chose my heart surgery there for Oct. 14. Not only did Dr. G. replace my valve but had to rebuild my aorta root and patch the dime-size patent foramen ovale with my own pericardium tissue. My recovery was quick and with less pain than others I’ve met. He is not only technically gift but he and his team are caring and thorough. His physician’s assistant, Deanna Scripture, was meticulous in following my recovery. Even though I am not a celebrity, both of them and their team made me feel like I was a VIP.
Barb Johnson, age 63, Overland Park, KS

To jump on the bandwagon, yes!

I am interestedin learning about about Cleveland Clinic performance of
percutaneous surgeryy to replace valves. I am very interested to learn more,
especially from the skillful surgeons at Cleveland Clinic.

Yes, definitely count me in. I’m scheduled for minimally invasive AVR with Dr. Gillinov at The Cleveland Clinic on February 22. So far everything is going like clockwork including my initial instructions for the required medical records, the doctor’s review and recommended procedure, and the scheduling process. I’ve received a comprehensive surgical packet with a detailed appointment schedule and a wealth of information about The Clinic and my heart surgery. Both The Clinic’s concierge department and Dr. Gillinov’s staff have responded to all of my questions and concerns especially in light of traveling alone from Oregon. The team has instilled such a level of confidence that I am actually excited and looking forward to my operation. I know I’ll learn some more from your online chat. What a bonus. Thank you Adam!

Although I had superb valve surgery and cardiac care in New York, I would definitely be interested in this “live chat” with the Cleveland Clinic. A few years ago several of their cardiologists made a presentation to the public in New York and it was outstanding. One can never learn too much. Looks as though you already have a “full house!” Thank you for planning this, Adam.

Dorothy

Hi, I am very excited in this online chat w/ your doctors. I am a mother of a 2 yo boy, my son had an open heart surgery when he was 5 days old, because of a congenital defect, pulmonary valve atresia. I would like to know more about this so that i can watch over my son as he grows up.

thank you.

jani

Yes, I would love to ask a question, specifically his opinion of which type of valve he recommends as far as longevity for the mitral valve replacement: the pig, or the cow??? And how long does he feel the pig valve would last???
Thank you.

Adam, before my surgery I participated in one of their talks. It was very helpful and the doctor’s advice was NOT to wait to have surgery. It helped me to make the decision to actively pursue a thoracic surgeon.

Dr. Gillinov repaired my tricuspid and replaced my mitral valve last year. My experience at Cleveland was excellent. I had previous repair surgery with multi complications so I have lots of experience to draw from. LOL.

I have been getting PACs for the last few months and would be interested to find out what causes this. How common is it? Do the PACs affect the repairs or cause any future complications. I was also interested in some of the questions asked in the previous postings.

I think it is a great resource for all valve patients. The 2:00pm time is a little diffficult so I may not be able to participate. But I will try. Would there be a chance that the chat could be recorded so that those of us that can’t participate could listen to it later? Can I submit my question in advance in case I could not make it?

Thank you Adam and Cleveland Clinic for giving us this valuable resource!

I am interested in the live chat. I have a bicuspid aortic valve with stenosis. I am not far away from a replacement, probably this year. I am an American expat living in Norway. I have been seeing cartiologists both in Houston and here in Stavanger. My cartiologist’s personal friend had a valve replacement at the Cleveland Clinic and I am interested in having my surgery there as well. I also will be contacting the clinic about this upcoming surgery. I am 56 years old and I have not made a decision abput which type of valve to get. I have been following your site and appreciate the information and support that your site provides.

Brian

i am interested in the chat ive had mechanical aortic valve replacement march 2009.
cant wait . looking foreward.i have a few unanswerd questions.

Count me in!!!

Would love to have a chat with Dr. Gillinov. He performed my heart valve surgery this past August. He is a great surgeon and very personable as well.

Adam, I would be interested in participating as I will likely require another valve repair at some time in the future.

Regards,

Brian Schneider

I would love to listen in or read a transcript of the chat. I had avr and aneurysm repair with Dr. Lars Svensson in July and I am doing wonderfully. I don’t have questions at this point but would love to see those anticipating surgery to get to address their questions to one of these surgeons. What a wonderful opportunity.

Yes. Please keep me informed.

I’m 32, have two children under 3 years old. My mother was just diagnosed with heart valve disease and had an aortic valve replacement 10 weeks ago. I was diagnosed with the same birth defect at that time as well. I’m interested in getting more information about what to watch for, what advances are being made in this type of surgery, and what the future holds for someone after having a successful heart valve replacement.

Couldn’t come at a better time!! Slowly approaching my “third” open heart valve surgery…did my research and know that Cleveland Heart Clinic is the only one equipped to handle my medical needs….because of volume and most importantly results!! Anxiously anticipating the interactive chat!
Thanks Adam

Yes, I am very interested in the online interactive chat.

Would love to join in if possible.

We just found out last year my now 23 year old son has a bicuspid valve in stead of a tricuspid. Last year it was not leaking and this year it is but i guess not enough to have valve replacement right now. His doctor did tell him he would have to have open heart sugery, and valve replacement. They set him up for a appointment in one year. Should they wait that long and wouldn’t it do more damage to wait than to do it now?

My son, Greg Slycord (33), was disgnosed with aortic stenosis and will eventually need a valve replacement. He is trying to make a decision whether to go with the bio (pig) valve or mechanical valve and we are wondering whether it would not be better to go with the pig valve at this time to avoid taking medications and, say 10 or so years down the road, perhaps the options for this surgery would be advanced a great deal, ie., stem cell or something of that nature may be available. What do you advise?

I am very interested in the online interactive chat. This would totally for selfish reasons. I want to get to know the guy that is going to turn off my heart for a while. I need to make sure he has the right jumper cables to get it started again…..Thank you for all the support your book and web site has offered. You are a inspration to us all. You still have a ticket for 3 hour tour of Grand Lake Oklahoma, Gilligan and Mary Ann are always ready.

Sorry about the late response, but I would be very interested in attending. I’m being tested 2x yearly and will be needing aortic valve replacement in the near future. I have some questions for the surgeons regarding activity levels pre-surgery.

What a great opportunity!Would love to participate or at least ‘tune in’ to discussion.
I have a bicuspid valve, a 5.3cm ascending aorta and a 4.0cm arch.
Would love to hear about any DEVELOPMENTS IN ARCH SURGERY.
Many, many thanks.
Toni Gallagher
Sydney, Australia

I would welcome the opportuny to speak with Dr. Gillinov.

Yes, I would definitely be interested as I am facing mitral valve surgery and definitely want to go to the Cleveland Clinic, but am a bit confused about how much testing and workup to have done here where I live (Maine) or whether I should have it all done at the Cleveland Clinic.

Thanks,
Ruth Howell