Newbie Intro

[Yvonne]

Hi Everyone...I've been lurking around the forums for a few weeks now - great information around here. I finally decided to introduce myself.

I'm Yvonne and had my aortic valve repaired when I was 9. I'm almost 50 now and never had a problem or restriction. The doctors thought I might be able to go the rest of my life like this - I'll always have a heart murmur and a leak, but the leak was livable.

The past couple of years the echo has shown the leak to be increasing. My yearly checks ups went to one every 6 months. Last year I had a TEE and the doctor who performed that felt I would eventually need a valve replacement and it should be done sooner rather than later. In May my echo showed the leak at moderate/severe and in September it showed it increased to severe (4+). My cardio said I was in a gray area because I'm asymptomatic. My heart is mildly enlarged and the leak is severe. So, he sent me to a heart surgeon.

The heart surgeon felt I should have surgery and if I have it now - while I'm healthy - the success rate is excellent. They sent me for a stress which showed my arteries are fine. The heart surgeon and my cardio discussed the case and both agreed this isn't an emergency, but should be done.

I'm scheduled for surgery in January. The weird thing is that I feel fine. I guess I'm having a hard time wrapping my mind around surgery when I have no symptoms. I certainly would rather have it now then be in an emergency situation.

I didn't get any other doctor or surgeon's opinions as I had three (the doctor who did the TEE, my cardio and the heart surgeon). If I got another opinion and he said I didn't need surgery, how could I be sure that was correct? Also, I've had the same cardio for years and trust him. He's the one who recommended this surgeon and the doctor who did the TEE was part of his group as well.

I guess I'm just going through many stages - denial, fear, anxiety...I'm sure you all know what I mean. It's great to see a forum with people who are going through or have gone through a similar experience.

 

[DebbyA]

Welcome, Yvonne! I had my surgery in Jan, too.

I know what you mean about having no symptoms and facing surgery. I did finally have some in the year before surgery, and can assure you that you don't want them.

It sounds like you have everything lined up. My own non-expert opinion is that you're better off having the surgery in a devoted cardiac center because of the experienced after-care.

Best wishes,
Debby

 

[Yvonne]

Thanks for the welcome Debby.

Logically I do understand not wanting symptoms. When I had the valve repaired when I was 9, my mother tells me I was asymptomatic then too. Slowly, I began to show symptoms like being very tired. Back then, this was very rare and it was an emergency.

I'm glad to hear you are doing well. Did you have any problems after surgery, did it take long for you to recover?

 

[Duffey]

Yvonne,

Hi and welcome.
Cardiologists typically drag their feet when it comes to recommending replacement, so the fact that your cardio is on board probably means it is getting close to time to have the replacement.
You might read some of member Tobagotwo's posts concerning his recent second AVR. He pushed to have the surgery done to prevent future heart damage. If your heart is mildly enlarged, some damage is occurring.

 

[Cooker]

Welcome! Glad you found us!

 

[WayneGM]

Welcome to VR. Sorry for the circumstances but glad you found us, I had my heart surgery at age 50 and was asymptomatic at the time. In fact, it was only a couple of years earlier that my heart murmur became noticable to my GP who first recognized there could be a problem during my annual check-up. I decided to have the surgery sooner rather than later and have no regrets. Best wishes and good luck.

 

[Danny]

Welcome Yvonne! Sounds like your doing everything you need to do. Your definately in the right place to find answers.....Ask away!

 

[jax]

Welcome yvonne. This is the perfect place to be for people like us. I had my surgery almost 5 months ago. I am still tired a lot but other than that feel great. You definitely don't want the symptoms. I went to the doctor with shortness of breath that's when she heard the murmur that had never been there before so she sent me for an echo which came back moderate to severe mitral regurgitation. That same week I was in the hospital twice with really high blood pressure. I had to stop working immediately because I just couldn't do it. It got to the point I couldn't walk to my mail box or even carry a laundry basket through two rooms without being out of breath and I'm not even going to start with the dizzy spells I got that felt like they would knock me over. I was light headed all of the time and exhausted all of the time. I couldn't get enough sleep before surgery. Now I am back to work and doing everything I used to before surgery. And the only thing I still notice is by the end of the day at work I am ready to go to sleep.

 

[Superbob]

Yvonne,

Welcome to the forum! Sounds like you've got conscientious doctors who have been closely monitoring. I went with the advice of my cardio, who followed the progression of my aneurysm very closely, and surgeon, who is one of the best. Just reading what you've said, it does sound like the time is drawing near to have this done. If you have any doubt at all, though, it wouldn't hurt to get a second opinion. You can get your tests on a disk and copies of reports (always get those anyway), and arrange for another doc to look at them.

Nervousness/anxiety is completely normal in the waiting period. Talk to these wonderful people here and they will help you through it. They certainly helped me, and continue to do so.

All best wishes....

 

[ALCapshaw2]

AH Yes, another symptom-free patient who is wrestling with the Question of Why Now? We've seen many ponder the same dilemma.

The Problem with SYMPTOMS is that Symptoms are a sign of DAMAGE to the Heart. Most Surgeons prefer to FIX your heart BEFORE there is any Permanent Damage to the Heart Muscles and Walls. The Key is to look at the 'numbers'. Surgeons usually have a pretty good feel for 'when to proceed'.

BTW, MANY of our members who "thought they were symptom free" reported that after they 'got fixed' (by surgery) that they discovered some of the non-symptoms that they had attributed to getting older or being out of shape DISAPPEARED. How about that.

The Surgeon is right about Low Risk for first time surgeries. The National Average for First Time Valve Replacement Surgery in patients under age 60 is 1% risk of morbidity and 1% risk of mortality. Those numbers are even less when performed by Very Experienced Valve Surgeons at the Major Heart Hospitals.

One more observation from our members is that they often find a Sense of Peace once they come to accept their condition and make the decision to 'get it fixed'. I hope you will have the same experience.

'AL Capshaw'

 

[dick0236]

.....I'm Yvonne and had my aortic valve repaired when I was 9. I'm almost 50


......The heart surgeon felt I should have surgery and if I have it now - while I'm healthy - the success rate is excellent.
.

Welcome Yvonne. You got many years out of your successful repair in 1969. There is every reason to believe that a valve replacement will add another 40 years. Your surgeon gave you the right cue..."sooner is better than later".

 

[Johan]

Yes, Yvonne, I am one of those who felt I did not have symptoms and had to be pushed by my cardio and surgeon to seriously consider surgery based on the numbers they got from echo's and endocardiograms. Still managed to postpone surgery for a couple of months. Had a third and fourth opinion based on the CD's and reports. All suggested that surgery was indicated. Now I know that I in fact HAD symptoms for many years. As Al said I ascribed it to just getting old! The surgery was done at the right time before damage to the heart and I can now do things which previously left me out of breath, no more tightness in the throat etc. Believe in your dr's and then leave it in their hands, it brings a lot of peace eventually. Johan

 

[BDMc]

Hi Yvonne! Welcome aboard! You sound very "normal" and emotionally healthy in terms of your reactions to news of a need for OHS. I also think you are fortunate to have doctors in agreement to do it sooner rather than later. Your recovery will be shorter, and fuller. All the best, Brian

 

[Marguerite53]

Hi Yvonne. Welcome to this wonderful place!!

You sure had an excellent repair done when you were 9!! You should look up that surgeon and let him know how long his repair lasted!!

Now that you mention that your heart is beginning to enlarge I would think it is very important for you to get things taken care of. You don't want your heart working so hard (to compensate for the leakage) that it permanently damages itself. January sounds like a great time -- the holidays are over and it's smooth sailing toward spring.

Have you decided on what type of valve you will be getting? That tends to be the main source of anxiety for many of us who are in our 50's. It also tends to be a controversial topic around here, so may I suggest that you do a search on some of the valves and do some reading here (not to mention get some good advice from your surgeon) before you start asking in a different thread.

My bicuspid valve (apparently a birth defect) was discovered when I was in my late 20's. I watched it (echo) every 4-5 years as recommended, had 3 children, a great life -- didn't worry about it at all. Then when I did start to get symptomatic, the echo results matched my symptoms (stenosis for me -- the opposite of a leak) and we just waited 3 years (ha! just -- waiting is not fun!) until the valve had closed down enough to warrant surgery. I never minded waiting the 20 some years... for some reason, knowing that it might be necessary was okay to live with! But once I knew it had to be done the waiting was very hard!

Be sure to come here with any and all questions. Don't be shy!! We're here for support if you need it.

Marguerite

 

[njean]

Just wanted to say hello & welcome you to the forum.

Seems to me that you have a great group of drs looking after what they believe is best for you & if surgery is in your near future to avoid further damage to your heart, then have it done!

Wishing you all the best & please keep us posted!

take care!

 

[Eva]

Welcome aboard, Yvone,

Even if you have symptoms, you would not accept at first the news you need surgery...I knew one day I needed surgery for many long years and when the cardio told me, I did not want to believe him though I had many symptoms (fatigue, shortness of breath, lethargy, which I thought I was becoming lazy and having stress and tension).

For your peace of mind, though I encourage you to do it sooner rather than later while your heart muscle and you are healthy, see other cardiologists and surgeons so that you want always have the doubt whether you needed it or not. Many of us have good insurance plans and it is a privilage to be able to seek second opinions.

Good luck and keep us posted. This period will be very difficult to accept and to go through, but stay calm and think of all the positive results most of us are enjoying after the surgery.

 

[Mentu]

Yvonne, I was pretty healthy and without prominent symptoms until a few months ago then in July I began feeling bad. Troublesome symptoms can appear quickly and if you can avoid them you are better off. When we got referred to our surgeons, I think we all worried first about risk and then about the difficulty of recovery. As your Doctors have told you, surgery when you are healthy puts you at far lower risk of complications. It also makes recovery much easier. At five weeks post surgery, I am looking forward to driving and returning to work late next week. You will be surprised at how good you feel shortly after surgery and how soon you will feel that you are getting back to normal. Welcome aboard, Yvonne.

 

[Yvonne]

Wow - thank you all for the many responses! This is a great forum and it helps to relieve my mind a bit. I knew hearing from others who have gone or are going through this would help me alot. Family and friends are very supportive, but hearing from others in this situation is having a calming effect on me.

I picked up copies of my last 3 echos from my doctor today...just for my own records. It helped me to look at the numbers myself - even if I don't know exactly what I'm reading It helped me to see the change in the echos.

As for the type of valve, my cardio recommended the tissue valve. The surgeon said he would talk to me after the catherization which is only the day before, but he did say that the tissue valve would last maybe 15-20 years and by then they would be able to replace it using the new less invasive catheter procedure. I'm leaning towards the tissue valve, but I still have time to look into it more.

Thank you, thank you, thank you all for making me feel so welcome and calming me down a bit.

 

[hall]

Welcome Yavonne! Nice to know your doctors are all on the same page. Best of luck. We will be here for you.

 

[TXGal]

Welcome Yavonne! It sounds like your doctors are on top of your health and I'm glad you are taking their advice. You've come to a great place for info, advice and experience! Best of luck and definitely keep us posted!