Web research on surgeons , medications

[Jay]

Hello-
This is my first posting. Been reading for a few weeks. Great web site. Lots of info and support. It?s nice to see so many of different ages, especially baby boomers , doing well after surgery- whether you chose mechanical or tissue. I?m 51. Feel fine. I have BAV. Heart and aorta a bit enlarged and with increase leakage, I?ve been referred to surg consult.

Didn?t know where to fit these two questions in so I just picked this area. 1) Are there ways to do some web research on the surgeons? I?ll come loaded to my consult with lot of questions for sure, thank you all very much, but want to feel like I?ve ?shopped around? in the Kansas City Missouri area for surgeons who have work with different types of valves.
2) I?m wondering if after valve replacement there are chances for reducing some meds like Digoxin, Lisinopril, and the wonderful new beta blocker I just started. I do understand you folks are not medical experts by the way. But your patient perspective and experience is appreciated. I found the info on this web RE anticoagulants encouraging.

This has been the same roller coaster ride that you all have been on, but I sure feel more encouraged and informed after reading your stories. Thank you much. And if it takes me more than a day to reply back on any comments, have a great new year!

 

[JaneBerm]

Welcome to our group, Jay. I'm in much the same boat as you, BAV, asymptomatic, and looking at surgery now sometime by the end of February. I don't have too many answers for you, but there is a wealth of info in this site and you can find lists of questions to ask surgeons, etc. I've had one consult with a surgeon, and now must have several more tests (CAT scan and cardio cath) before he finializes everything. In the meantime, my cardio doc left for another state and now I have to make a new connection in that office. I've learned that these things happen all the time! Sometimes I think this site is the mainstay in keeping me sane as I face something I didn't even know about until a few months ago! Keep reading and learning, you'll be amazed at what you can pick up from the good folks here. Welcome and continue to share your story as it unfolds.

Jane

 

[Duff Man]

I've read quite a few members say that Dr. Kouchoukos is one of the great ones. http://www.healthgrades.com/directo...fm?tabphysprofile=phy_inf&tv_lid=btn_physprof

Missouri Baptist Medical Center
3009 North Ballas Road Suite 266C
Saint Louis, MO 63131

 

[Phyllis]

Welcome, Jay. I'm glad you found us before surgery. I have a few suggestions for your first question. Check out this site for the best hospitals and see if there are any in your area: http://health.usnews.com/sections/health/best-hospitals
Next, you can check out the hospitals in your area that you are interested in and find the surgeons on their website and then proceed to "Google" them. You might also do a search here for "Missouri" and see who else here has used surgeons in your area. I'm sure some of them will be along to advise you as well.
Best wishes to you and I hope your find this site helpful and informative.

 

[Jkm7]

Are you near St. Louis? Washington Univ. has a great hospital affiliation. Barnes-Jewish Hospital ranked in the top ten in the country for heart surgery 2008. That might be a place to consider for your surgery.

Sorry for the reason but happy you found us. Let us know how we can help you get through this.

 

[Jay]

Thanks all!

Thanks all!

You know, with as open as everyone is on this web site, I felt like I was eavesdropping for a few weeks. I absolutely appreciate the openness. When I posted a note, it was like I was taking a cloaking device off, becoming more visible. Which would make all of this crazy heart stuff all that more real. Thanks to all who replied. So helpful to be in touch with others who have been in this situation. To be honest, the first three weeks knowing that the surgery was going to be sooner than later (will know more after the Jan 15 consult) was pretty difficult, partly due to some history of losing some family/ friends way too early in their lives due to health problems. They left suddenly. I have for years been able to use rational thinking and know that this doesn't have to be the case with me. But it has worked on me. So when I see a few forum folks spilling out their panic and also stories of surviving for years I do feel so much more encouraged. It all really has done an amazing job settling me down. There were days in December when I didn't seem to go more than ten minutes without having it all come back to me if I didn't have my mind occupied.
I am an extremely lucky guy. Lots of support. Have a great wife and son, have some fantastic friends and family. I try to let them all know how much I appreciate their support. I'm coming along and I'm glad to be past a few weeks ago when the timetable and status of my heart/ aorta suddenly changed. There is something special that seems to have occured with my rather humongous fears from seeing so many cyber stories of people that are surviving quite nicely. Seems like I've joined a quite a nice valvey family.

I ended 2008 on a much higher note because of family and friends. Hope your first week of 09 is a good one.

 

[zipper2]

BIG hello and welcome Jay,

You gotta luv us this valvey community sounds like you been

busy reading up and so glad you joined.

Happy New Year!!!!


zipper2 (DEB)

 

[ALCapshaw2]

Dr. Kouchoukos is one of the TOP Aortic Surgeons in the country.

If your BAV is also accompanied by an Aortic Aneurism (or 'dilation' as some like to euphemize), Dr. Kouchoukos is probably the Closest Aortic Surgery Expert you will find.

Re: Surgeon Searches, there are some Fee Based information sites but Free Information on surgeons is hard to come by.

Google their name, and if you are lucky, you may come across their own websites or a listing of their educational and professional background if they are associated with a large group or university.

With BAV, Dr. K (above) is probably your best bet.

'AL Capshaw'

 

[ottagal]

Hi Jay,

Glad that you took off the 'invisible cloak' and officially joined the VR family. This wonderful and supportive site has helped me and many others stay sane. Unfortunately, I can't help you with the surgeon search question as I live in Canada and it works differently here.
Good luck with everything and keep us posted!

 

[Jay]

Hello again- thanks again for the tips. I live about 4 1/2 hours from St. Louis. Only 30 minutes away from Kansas University Med Center which seems to have a sizable cardio dept. I can see that St.Louis hospitals mentioned are recognized more on internet searches. I believe I have aortic anuerysm so will see if the KU doc has experience in correcting that, what his experience is with different types of valves. I did get into the for a fee sites that offer some kind of reviews on docs but won't do that yet. The no-fee sites don't seem to offer much info. Jan 15 for surge consult at KU which isn't too long from now. I'll add on here if I find some valuable info.
Thanks again to all of you!

 

[Lynlw]

Have you checked http://bicuspidfoundation.com/index.html ? Since you are bicuspid with an AA you really should go to a surgeon that specializes in aortic surgery. (Dr K is on the foundations med advisory board http://bicuspidfoundation.com/Medical_Information.html )

 

[Jay]

Hi Lynlw

Hi Lynlw

I checked one of the web sites you gave me. Very thorough and understandable. Thank you. All saturated with info again. Shall read some more and absorb some more!
Jay

 

[Mary]

Hey Jay!
I'm from Cape Girardeau, long way from you, but I'm familar with cardiothoracic surgeons in Missouri.
Columbia also has good heart centers, but frankly, if you're going to have this type of surgery, you want to go with the best surgeon you can get.
That's the reason you're getting so many replies mentioning Dr. Kouchoukos who's now at Missouri Baptist in St. Louis. He performed my replacement in 2005, and he has put together an excellent team.
Best wishes, and hope to hear more about the surgical consult after your meeting.
Oops, I almost forgot to mention that you need to visit the sticky thread, Where in the world are VR members? in the Small Talk forum and indicate that you are a Missourian!We're getting beat in numbers!

 

[Jay]

from Missouri

from Missouri

Hey Cape

Thanks for your note! I've heard a few times about Dr. K. Glad to hear from another MO person. Will go to small talk soon. Jay

 

[piehole4]

Also try www.vitals.com which provides the biography and number of surguries by surgeons.

 

[Curtsmum]

Hi Jay, don't have any answers for you but wanted to say welcome to the forum and to wish you all the best.

 

[Jay]

Thanks Curtsmum for the welcome.
Each day is a bit different. With each hello, welcome, bit of info at times, I feel like I've found my way through another day in better shape. 1 week until surg consult .

And thanks again to all those who replied. There are weeks now that I feel I haven't been facing this stuff alone. Forum is making a difference. Jay

 

[Freddie]

Hi Jay and Welcome (sorry I'm late) to your new cyber family.
We're here to help you to take a load off your mind.....well at least we try And sooner or later we'll put a smile upon your face.
Take Care

 

[Jay]

Thanks for the welcome! Jay