hello

[Rivet]

Hello,
Just found this forum today. I guess you can find just about anything on the Internet these days.
Anyway, I am 34 years old and had coarctation of aorta surgery when I was young (8). After that, saw a cardiologist regularly. When I was on my own, stopped going to doctor for long period. Went to cardiologist in 2001 and everything seemed ok - just a moderately leaking bicuspid aortic valve. He said I would need surgery sometime down road. I never really thought much about it and didn't return to the doctor as I wasn't having any problems.
Just went to cardiologist last month to have things checked out. Found out from echo that my aortic valve was leaking severely and surgery was recommended. Wow, that was a shocker. I was generally feeling fine. I hiked all last summer, fall and winter (some hikes as long as 18 miles) and didn't have problems. Some shortness of breath - but that's to expected when hiking uphill.
Anyway, they did a cath study and it didn't seem to leaking as bad as the echo showed. A TEE was done and I have to go back for an MRI.
I guess it's more a question of not if I need a surgery, but when. At what point do doctor's decide to operate? Is this something that can be put off for a while. I'd rather do it over the winter than mess up my whole summer with recovery.

 

[McCln]

When I had my replacement done, late summer, early fall, it was hard. Here in the midwest, it can be still hot till October. So it was hard when I first came home to recover. So good luck on the tests and welcome. We are all friends.

 

[Ross]

If it's leaking severely, they are going to recommend surgery as soon as all your testing is done. Count on it! You do not want to wait for heart enlargement, which I'm sure to some degree, it already is. Make sure to get copies of all of the testing results and keep them for yourself. It's a must with us people.

Welcome aboard. Keep us up to speed as the tests move along.

 

[Heather Fisher]

I had a coarctation done at age 4 and valve replacement done at age 46. Don't put it off for too long. I know the summer is wonderful. I thought I was great till diagnosed and then started feeling shortness of breath, etc. I just wanted to get it over with. Listen to your doctors and do it when they say, otherwise you can do more damage. Best of luck and welcome here!
Heather

 

[hensylee]

welcome, Rivet. You have found friends here in VR. Most of them have been there, done that. Lots of information for you to read. People to walk with you all the way up and over the mountain when your time arrives. Read on, they are coming.

 

[Laurz]

Yes, Rivet-----LISTEN to Ross and Heather---If the docs say it is needed it is gnerally for a pretty good reason. IF you can avoid becoming to terribly symptomatic that would truly be a blessing. The shortness of breath and fatigue and very very frustrating when you think it could have been avoided. But whatever you decide and when you decide we are here for ya. Laurie

 

[Rivet]

Make sure to get copies of all of the testing results and keep them for yourself. It's a must with us people.

Why is that? Do you change doctors a lot?

 

[Ross]

Why is that? Do you change doctors a lot?

No, but you'll need them for second opinions, possibly disability, and it's just a darn good idea to know where your at during a specific time. Nothing like having the old to compare to the new and look for changes. A running history if you will.

 

[tobagotwo]

Recovery won't mess up your whole summer. At your age, you'll bounce back pretty fast. However, the knowledge of what's going on, and the symptoms that you will come to realize are from your heart, not the trail, will weigh heavily on your good times.

One thing you want to avoid is damage to your heart. The more enlargement you have, the less likely it is to return to normal after surgery. If the leak is severe, your heart will respond to it fairly rapidly, enlarging to try to handle the extra workload.

If your cardiologist says go, you should. And soon. Why? Because most cardiologists wait too long. Surgeons tend to want to do the surgery sooner, because they know they will get better results. Cardiologists tend to wait, because they don't want anyone to think they rushed their patients to surgery, and because they see the surgery as a danger to their patients, even if it is inevitable.

Best wishes,

 

[Rivet]

Thanks for your support everyone.

Part of me wants to just get it over with.... (Part of me wants to ignore it and hope it goes away )

I will get the surgery done when the docs recommend it.

Playing hookie from work tomorrow to go hiking.

 

[Sherry]

Hi, Rivet. Wow, your post really caught my eye because I attended Rivet High School in Vincennes, IN. Just checking to see if there is any connection.

However, to the matter at hand, I would agree with the others in that you don't want to wait until the heart is enlarged before making a move. Better sooner than later. Keep us informed.

 

[tommy]

Hi Rivet. Glad you found us. The goal is to replace/repair the valve before permantent damage is done. The docs will tell you when.

Be of good cheer. The overwhelming evidence in here is that those that enter surgery in good fitness, recover quicker than those that are not in good fitness.

 

[Granbonny]

Hi..Welcome

Hi..Welcome

About the time of the year to have OHS..Winter would be tough where you live...Because, after, 1 week at home (Inside your home) You will need to get outside for more walking.....walking, walking..Helps get the Nasty drugs out of you.. .......Of course, you could always go to a Mall. but, must have someone to drive you the first 6 weeks. Good luck. Bonnie