New - So many questions and Concerns

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elliottj

elliottj

Active member
Joined
Nov 1, 2006
Messages
27
Location
Juneau, AK
Greetings all,
My name is Jay, I'm 45 years old and have been diagnosed with a bicuspid aortic vlave. As you can imagine this came as a shock to me and the family. Cardio has me on a six month check-up to evaluate my progression, he says it will be sooner than later for me. I'm must admit Im very nervous, ok just down right scared to death about what is ahead for me. I have so many questions and concerns and would like any feed back on what lies ahead.

Any suggestions on finding a surgeon ????

Thanks in advance,
Jay
 
Jay - I have been having 6 month check-ups for a few years now and I am getting ready for surgery in probably Feb. I am 44 yrs old. Yes, it is quite a shocker at first but sit back and ask questions and all these neat people here will help you along your way. Once you start to get answers and talk with everyone here you will be more at ease.(well, more at ease than you are now). They all say that the waiting is the hardest part. Do your homework and once you understand things clearer, you should feel better. You will have someone come along shortly and help you with a surgeon choice or at least where to go to find one.

Good luck and stick with us here. I believe it is the best medicine for those of us in the "waiting room".
 
Welcome, Elliot- scared is normal, but hopefully you will feel much better after reading many of the pre and post surgery threads here. I notice you are from Alaska- what are the surgeon options there and how far are you willing to travel? If travel is an option, you might check out US News and World's report on the best cardiac surgeons:http://www.usnews.com/usnews/health/best-hospitals/tophosp.htm
As you draw closer to surgery, I'm sure many questions will come up as to valve selection, the surgery itself, and recuperation at home. Just take your time and browse all the forums and then come back with any questions you may have. The fact that so many here have been in your position and are posting here to tell all about it should be reassuring. Best wishes to you,
Phyllis
 
elliottj said:
Greetings all,
My name is Jay, I'm 45 years old and have been diagnosed with a bicuspid aortic vlave. As you can imagine this came as a shock to me and the family. Cardio has me on a six month check-up to evaluate my progression, he says it will be sooner than later for me. I'm must admit Im very nervous, ok just down right scared to death about what is ahead for me. I have so many questions and concerns and would like any feed back on what lies ahead.

Any suggestions on finding a surgeon ????

Thanks in advance,
Jay
Click to expand...

Welcome Jay,

Start with your otptions for valve replacement types. There are a vast range of options; believe it or not. I found it very hard to understand all of the choices when i was facing my surgery six years ago at 27.

The choices are basically mechanical vs. tissue.
Many different types of each.

Once you have narrowed your choice, find a surgeon who specializes with a BAV and is profficient in the use of the valve of your choice.

Hope this helps,

Keep the questions comming.


BTW, Waiting is the hardest part.
 
Hi Jay!

Welcome to the club!:eek: So, are you regurgitant or stenotic or some of both? How's your aortic root and ascending aorta look? How were you diagnosed? Do you have any reports you can share?

There is certainly a lot of information to absorb out there. I'd recommend visiting www.bicuspidfoundation.com and http://www.clevelandclinicmeded.com/diseasemanagement/cardiology/aortic_valve/aortic_valve.htm and http://www.csmc.edu/3893.html. Also, read http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct

It is frightening and can be all-consuming for a while to find out you are headed for open heart surgery. While I'm sure there will always be an element of fear, I have found great comfort in the experiences of others on this website and I really have gotten to the point where I just want to get it over with (but in my case, apparently it's more prudent to wait). So hang in there and get comfortable asking questions and learning from those who have or have had surgery.
 
Welcome Jay!
although I'm sorry that you have had to join this forum.
I too am in the "waiting room" with a leaky mitral valve and on 6 month check-ups with the cardiologist. I too can relate to the shock and fear of getting the news "totally out-of-the blue" in August 2004. I was then and still am asymptomatic and find it hard to comprehend. Be thankful that you found VR.com. I have learned lots from reading here but more importantly it is wonderful to be able to connect with others who have or are experiencing exactly what you are going through and are so willing to share their knowledge or offer a shoulder to lean on. I hope that you get the support that you need.

Best wishes,
Susie
 
Glad to meet you Jay, even if it's not under the best of circumstances!

Just read away on the various forum threads, and whenever you have a question that you can't find an answer to, ask away!

We do have a search feature and a reference forum that will prove invaluable in your search for information . . . when you have time, you might check them both out.

Stay with us, and we'll help you meet this new challenge in your life.
Mary
 
Mary said:
Glad to meet you Jay, even if it's not under the best of circumstances!

Just read away on the various forum threads, and whenever you have a question that you can't find an answer to, ask away!

We do have a search feature and a reference forum that will prove invaluable in your search for information . . . when you have time, you might check them both out.

Stay with us, and we'll help you meet this new challenge in your life.
Mary
Click to expand...

Mary , you think you could make that print a little smaller. It is so big it is blinding me.
 
Hello Jay, most will have a similar story but i can say from experience that spending some time reading through this site and asking questions will hopefully make you calm about the situation.

I've known about my valve all my life but got the bomshell 6 weeks ago that i needed surgery due to a dilated aorta, that was totally unexpected as the valve was working fine.

I've gone from tears in the car at the hospital to an almost uncanny calmness with my surgery only 3 weeks away.

Take an alternative look at the situation as i have, if it hadn't been found i'd be dead in ?-5 years from an aortic tear....now i've just got to endure two days of crap and 4 weeks of rehab before i'm almost normal again..

It aint no biggy when you consider the alternative.

Best of luck with your research, make this place your second home until you are happy with your decision....at least it looks like you have six months to research rather than the six weeks i had.

Regards.
 
elliottj said:
My name is Jay,
Click to expand...

I am really happy to meet you. My lifelong best friend all the way back to seventh grade, and that's a really, really long time ago, is named Jay and immediately I saw a familiar face when I read your name. Every time you post, I will have a pleasant memory pop up.

We are happy to have you come in as a new member. You have found a place where you need to be to hear much that you won't hear from your doctors - you know, the sideline stuff. Hang out here and you will be prepared when the time comes, and a lot less frightened. It's an awesome life saving surgery. We are concerned and caring of our members and will be with you all the way and over the mountaintop to the good side.
 
Good Morning, Jay (at least it is morning here. . . ),

And the usual "Welcome to The Waiting Room -- the virtual room in which many of us await our own turns at valve surgery."

I'm glad you've decided to become more active and bring your questions up, as the answers will certainly be here. As P.J. asked, you will need to know whether your bicuspid valve is insufficient or regurgitant (leaks backward), stenotic (stiffened and not opening fully) or bits of both. Knowing which condition you have will enable people to help you understand the inevitable avalanche of data you should glean from your first echo report. It will also help people to predict which readings will be most significant to your condition so that you can be better prepared to evaluate changes over multiple tests. After a while on this site, many of us become so aware of things and ask such pointed technical questions that the docs think we too are doctors. If you have a cardiologist who cooperates in this, it can make your case management ever so much easier and can help you to maintain your sanity (unless you're like some of us who never had much sanity anyway. . . ).

So, feel free to tell us a bit more, and then stay with us. Help is here, and so are we.
 
Jay and Phyllis

Jay and Phyllis

Best Wishes Jay...you will get LOTS of help here for those wiser than me !!!!

PHYLLIS THANK YOU SOOOO MUCH FOR THOSE WONDERFUL SITES YOU ALWAYS COME UP WITH...DONT KNOW HOW YOU DO IT, BUT THANK YOU. 8)
 
surgeons? Any suggestions?

surgeons? Any suggestions?

I don;t have a date set yet and not even sure when it will be. Cardio says sooner than later I will need my Aortic valve replaced. I have many questions in regards to surgeons and what questions to ask and when is the proper time to begin looking for one? Where do I look for one and what questions should I be asking and what information will they offer... ?
 
Jay, you can wait to see a surgeon until the cardio says it is time, although many on this site, feel that cardios are conservative and it is better to get an opinion from a surgeon as to how close your surgery is. One good thing about doing it early is that you have time to research surgeons, interview one or two and make your decision. You want one that has done LOTS of valve replacements. You will want to ask if they do minimally invasive and what valve they suggest using. You can ask your cardio for a surgeon recommendation and if you are willing to travel, you can look at the sites, I suggested to you in your other post. Hope this helps. Hopefully time is on your side to become an informed consumer!
 
Elliott:
If you post your echo results here, perhaps some of our members can give you some assistance in understanding them. I thought you had good news yesterday when you shared the reports with Randy. As I recall, Randy said that you probably would not be needing surgery for a long, long time...based on the echo results. I sure hope this is true and you can celebrate the good news.
Blanche
 
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