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J

juliek

Well-known member
Joined
Mar 31, 2007
Messages
58
Location
fort worth texas
A little over a month ago I was feeling very tired and went to see a cardiologist. I was aware that I had an aortic valve insufficiency. The doctor, who I like very much, told me that it was severe- "that valve is wide open" and I would need to have it replaced. After a TEE he found that it is borderline severe. He consulted with other heart specialists at St. Luke's in Houston and told me I can postpone replacement for a while and monitor with echo every three months. I was relieved of course, but the thing that also helped me so much was this website. When I first learned of my situation I was stunned and terrified. I was too afraid to look at anything on the website for fear of what I might find out. Finally, I did and found this support group. I read for hours and found peace of mind. Now it is the place I go to for information, comfort and assurance. I registered on valvereplacement.com so I could say thanks to all you wonderful people!!
 
Welcome and thanks for registering. Now you can give as well as get reassurance. We look forward to hearing from you!:D
 
Welcome to our family. Please stay and help and/or let us know how we can help you.
 
Welcome! Having the problem diagnosed and corrected really is not to be feared. The rate of success is amazing high. What's terrible is that so many people with undiagnosed heart problems leave us suddenly so often.

Look forward to your reports. If they're echo-ing you every three months, they are watching closely. Continue to let us know how you are doing.

Cheers,
 
Me too, Juliek! I'm new to this and in kind of watch and wait mode. Next week, I see the surgical team at Shands teaching hospital for a consult, but I hope surgery will be a ways off.

John
 
Welcome to this wonderful group, Julie! Thanks for joining us.

It's good that you are feeling more settled about the whole notion of valve replacement. Since your cadiologist has granted you a reprieve, of sorts, why not use that time to search out the perfect heart surgeon and go have a meeting with him to discuss valve choices and timing.

While it may be true that a surgeon's job is to do the cutting and he will be anxious to have you as a client, and the cardio's job may be to keep you healthy with your native valve for as long as possible, it is a GREAT idea to go visit with the surgeon and see what he thinks about timing. Oftentimes these valves go down rather quickly toward the end of the waiting period (not so dramatically as to be a rush rush to the Operating Room.....but surprisingly quickly, nonetheless). Please use this time you have to find a surgeon you are condifent with and to choose a valve you will be happy with.

Best wishes to you. We all feel the same about this place.....the support is a magnificent thing. Glad to have you here!

Marguerite
 
To: Juliek

To: Juliek

I am also new to this forum (Feb., 2007), but not to valve replacement. I can't help with the protocols or procedures of modern heart surgery. I don't even understand much of the lingo I read in these posts. I leave that to my doctors. But there are many here, like myself, that can help answer the other BIG question......what about afterwards ? I have been fortunate enough to have lived a normal and non-restricted life for almost 40 years after surgery. One of the most positive things I've gotten out of this site is that I AM NOT the "Lone Ranger". There are many here, who have many years of recovery, that go about living their lives as they wish.

Surgery, when it becomes necessary, beats the alternative !
 
Welcome Julie,
I'm sure you will find, as I did, this forum has lots of valuable information, much of which can help ease fear of heart valve surgery. I just had my mitral valve repair surgery in February. I was in your shoes, where I did not have my cardiologist telling me I needed surgery immediately. I took the time to make sure I found the best surgeon for me. Once that was done the rest was not so hard.
 
Welcome, Julie. You will find people here that can answer just about any question you have from their personal experience. It is really amazing.

Good to have you aboard!

Ruth
 
I appreciate the kind words and good advice. I didn't think about finding a surgeon "just in case", but I agree it is a good thing to do and not wait till the last minute. One of the best things I learned from this site is that being on coumadin wouldn't be the end of my life, but I would like to know about options besides mechanical valves. I read about Edwards Carpentier tissue valves on the Cleveland Heart site and can see that some of you have those. So, I'll start looking for a surgeon that I am comfortable with. Thank you for taking the time to write me.
 
Julie just jump over to valve selection and read the first two stickies at the top, then ask away about valves. ;)
 
Hi Julie -- Welcome to the site; glad you found it! Take care and post again.
 
juliek said:
A little over a month ago I was feeling very tired and went to see a cardiologist. I was aware that I had an aortic valve insufficiency. The doctor, who I like very much, told me that it was severe- "that valve is wide open" and I would need to have it replaced. After a TEE he found that it is borderline severe. He consulted with other heart specialists at St. Luke's in Houston and told me I can postpone replacement for a while and monitor with echo every three months. I was relieved of course, but the thing that also helped me so much was this website. When I first learned of my situation I was stunned and terrified. I was too afraid to look at anything on the website for fear of what I might find out. Finally, I did and found this support group. I read for hours and found peace of mind. Now it is the place I go to for information, comfort and assurance. I registered on valvereplacement.com so I could say thanks to all you wonderful people!!
Click to expand...

Hey Julie!

Welcome... I can relate to a lot of what you wrote above.

VR.com is a pretty powerful resource.

It helped me out a lot when I was diagnosed.

Best,

Adam
 
Julie,
I've said that from the moment I opened the forum, I felt like Alice falling down the rabbit hole and waking to a different world.
The responses to my initial question were informative and encouraging. From that time, I've felt many different types of emotions when reading member's posts. Sometimes I've found that the information I read is scary; sometimes it is reassuring. But the common thread is that we've all experienced the same emotions and many members have stayed with the website to pass on the information and support that they received when they joined. Thank goodness Hank started this site, and thank you for joining the group.:)
Mary
 
Welcome

Welcome

Welcome aboard Julie!

While you are waiting, please make better decisions about having your condition monitored than I did. Avoiding doctors for twenty-seven years probably didn't do me a lot of good. It sounds like you've got a good plan for monitoring your valve.

Good luck with your search for a great surgeon.

-Philip
 
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