Aortic Regurgitation

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A

AsaBabe

I was lucky enough to have someone recommend this site and what a relief!! I am a 34 yr old female. I was diagnosed with AI, MI and TI in June of 2000 and since have been having yearly echo's from the local fairly rural cadiologist, I was told that I will need a repacement (aortic valve) but they were just watching the progression of the damage (contradiction isnt it?). The thing I notice most is lethargy and exhaustion after even the littlest things, the cardiologists have been blowing this off. I have been told to go to a big city cardiologist but I am not looking forward to having my chest split open and afraid they will tell me they need practice....:D

I guess I am just here for support. I have read some of the stories and thank you for sharing them!!!!! I have to admit reading some of them made me weak...LOL I have been feeling some occasional chest ache more SOB than normal but keep saying to myself that cardiologist blew it off and so shouild I and quit worrying. I am on no meds and do what I want to do (activity) and just stop when I get too SOB or tired.

So far this is better than getting my chest split and all that good stuff...LOL

Thanks for reading!!
Cindy
 
Cindy

Cindy

Let me be the first to welcome you to this site. Here you will find support, encouragement, and many people who have gone through similar experiences. If you want it to be it can be your heart home. We are here for you. Just jump in, read and ask questions. Peggy
 
Welcome, Cindy. You'll find this is a great and loving bunch. They're also hugely knowledgeable about this whole valve thing and I'm sure you'll get a lot of good advice.

Re: your cardiologist: if you feel like he/she's a country hick, and you don't have any confidence in this person, it's time for a change. You're really young to be so short of breath, etc. Heck of a way to live.

There are fine medical institutions in Missouri where you can find a good cardiologist. You need to take control now. You don't want to let your condition deteriorate until you're in poor shape before surgery. Your age is a great asset when undergoing such surgery, because you heal so much better and more quickly than us oldsters.

Please don't put off getting a good doc because you're afraid of what the new one will say. Since you're not on any medication it's entirely possible that they won't want to operate at this time; a lot of medical control is possible.

There's always someone lurking around here who can help with requests for specific information or just a cyberhug.

Again, welcome.

Georgia
 
Thanks for the welcome!!!! :)

I have been saying the last two years I should at least get a second opinion from another cardiologist but just havent gone yet... :rolleyes:

The one and only person I ever met face to face that had a aortic valve replacement was my age in 2001ish and at THAT time I was seeing a cardiologist she had seen and that one told her she has time before it had to be done and she decided to go see one in St Louis and a month later she had the surgery....LOL THAT cardiologist since committed suicide amazingly enough and I saw the one that replaced the guy that replaced him. (They come and go fast here).

ANYWAY, I am glad to be here. I used to be a medic for 8 years but not that familiar with this besides the internet research I have done.

I guess I am most curious about this exhaustion thing, the girl I met said the same thing. I want to know why AI makes a person exhausted all the time, anyone know?? The only thing I can think of is not enough oxyen getting to the rest of you because some of it gets regurgitated back into the left heart chamber?? :confused:

Thanks all, God Bless-
Cin
 
Cindy you hit the nail right on the head. It's the oxygen flow that is regurgitated back into the heart. The other bad thing-Your heart will start increasing in size to a point where it can become inoperable. Given the symptoms you present, I'd be running to another Cardiologist for a second opinion as fast as possible.

I'm not telling you this to scare the daylights out of you, but mine enlarged rather rapidly once those same symptoms were present. I had my AVR surgery in July 2002 and I almost waited too long. I'm still having problems because of it and an underlying lung disease. I don't want to see this happen to you. ;)
 
Get a second opinion...

Get a second opinion...

I managed to get a second opinion on my AI and had the valve replaced two weeks ago tomorrow.

One of the things my angiogram showed was that the left side of the heart wasn't doing much work, and that the majority of the pumping action was taking place in the right side of the heart. The right side of my heart was pumping the blood into my lungs, but the left side wasn't pumping it out to the body. I hadn't been able to take a full breath for years, although I could walk for miles without a problem.

See about getting some more definitive tests. My echos hadn't changed in years, but the new cardiologist ordered a TEE, which led to the angiogram, which led to the surgery. There is moderate enlargement to the ventrical, but with luck that will reduce.

We're here to help you through this, Cindy. Many of us have been through just what you are going through now.

Cheers,

Will
 
Cindy - Sorry to hear your difficulty with symptoms. I was faced with the same decision as you. I had no symptoms and my cardio suggested a second opinion. I went to one of those big city hospitals (in Cleveland) and eventually had my surgery there. Things have worked out well. I no longer have the regurgitation and I live a great life. They did split my chest open, but it wasn't as bad as you might imagine. I have a 3 inch vertical scar on my chest that never seems to bother me (mitral valve repair and aortic valve replacement). Good luck with your decisions.
 
Cindy,

I am just a little farther along than you. I was diagnosed with moderate AI six years ago. Stayed asymptomatic all that time while I got annual echos. My last one in January showed a much-enlarged ventricle now with sever AI. I have an excellent cardio so I didn't feel the need for a second opinion but sounds like you should look to St. Lousi for one. Should be several good ones there. I have just recently showed signs of fatigue and shortness of breath. I get my chest "cracked open" in two weeks. I may not be looking forward to it but I would look forward to the alternative even less. Welcome to this community that has helped me immensely.

Paul
 
asababe

asababe

Hi and welcome to VR.

I live between 2 big cities NYC & Philadelphia, just like St Louis they have all the up-to-date cardiac equipment.

They will do testing on you before deciding on surgery, Like a TEE and cardiac cath, these will help the doctors diagnosis your condition. The final decision will be up to you, but there is a real danger in waiting too long.

So I'm with the rest here, get a second opinion ASAP, and ease your worrying!

keep us updated,

Terry40
 
Hi Cindy, I was about a dozen years older than you 17 months ago when I had the surgery, and I came through fine.

But -- I may not have had much more time if I had not had the surgery done when it was done. I think my remaining lifespan would be measured in weeks.

SOB is quite a feeling. I still enjoy taking a full lung-full of air, something I certainly couldn't do before surgery.

Please make sure that you are confident in your cardiologist and in his evaluation of your situation. If you aren't, a second opinion is the way to go. Perhaps even if you are confident, a second opinion wouldn't hurt.
 
hi cindy!
welcome to this wonderful site. as you can already see, everyone here is very informative, helpful and kind.
i have very little to add to what all the others have said. maybe you just needed to hear it from others and i also think you might have suspected it was time to seek a second opinion.

the tests mentioned will give you and the doctor more info regarding the severity of your condition. the test results will give the cardio some direction in terms of treatment.

please let us know what you decide to do and how things go. ask any questions, we are here to help.
be well, sylvia
 
Hi Cindy,
I am so sorry to hear that you have to go through this. I am also a 34 year old female and just had an AVR and anuerysm/dissection repair, 6 months ago. My situation came along rather quickly, but I have to agree with everyone else here. You should definately get a second opinion as soon as you can. You don't want your heart to start deteriorating. It sounds like you already have symptoms. Again, nobody here wants to scare you, but the sooner you get this taken care of the better. You will actually bounce back from the surgery quicker than you think. I was totally petrified when I found out I needed surgery. I felt like I had one foot in the grave and that is the farthest thing from the truth. Once you take care of this you will wonder why you ever waited so long. I know it is hard right now, and hard to believe anyone can relate, but all of us here can. Please come here for support or just to vent. We are here to help.

Take Care!
Gail
 
Hi:
I am a new member of this website,My son is 16 he has had two open heart surgerys one in England uk where we live, and his last one at Miami Childrens Hospital America in july 2002. They did a konno procedure and put in a artfical aortic valve( staint jude valve)He has to take blood thinning medication for the rest of his life to prevent blood clots. he is doing very well thanks to Dr burke at Miami. I would love to tell you his story. He has been though such a lot for such a young man. Like to talk others who has had a saint jude valve
regards Loz:)
 
Hi Loz-

Welcome to valvereplacement.com. You'll find loads of kindred spirits here. There are many folks with St. Jude valves. My husband has one in the mitral position, and he also has a Bjork-Shiley in the aortic position. He's been on Coumadin (warfarin) for 25 years.

Sorry that your son has had so much medical trouble so early on, but it sounds as if he's doing well in spite of it all.

We're all here to help you with any questions you or your son might have, and to just be your friend, as well.

Take care and hope to see you here often.
 
Re: wonderful

Re: wonderful

Hi Nancy
Thank you Thank you
Talk to you all soon.
Regards Loz
:)
 
You're Safe In Missouri

You're Safe In Missouri

Good to see you here. Where are you from in Missouri? I live about fifteen minutes from Lake of the Ozarks.

Rest assured there are many fine cardiologists in our fair state. I had my aortic valve replaced and had both a pacemaker and a defibrillator installed in Springfield and, even after seven cardiac arrests, I've survived with their help, expertise, and care.

If you're looking for great, skilled, caring doctors, check out mine listed below. They'll sure take care of you.

I will keep you in my prayers. If you wish to talk about my doctors and what they can help you do, call me at 573-765-3413. I'll help in any way that I can.

RON P.
 
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