this is the freaking craziest disease ever!

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youngmom

Well-known member
Joined
Apr 7, 2010
Messages
56
Location
north carolina
well went to cardiologist got the echo results heart is strong. my valves are leaking severe aorotic and mitral. here is the catch.....I have a choice to do surgery now or later. he said my heart is strong so its able to compensate for the valves but i feel terrible. he stated if i could tolerate feeling bad we could hold off because of my age. dang it. wish they would not give me the option. part of my family is saying hold off others are saying now. so confused. have an appointment on the 17 with the surgeon. keep me in your prayers
 
Sounds like you're going to be a double valver, like me. I would say get it done now. You'll only get worse, and the recovery is worse the more ill you are. Been there, done that (though the delay was from misdiagnosis, not by choice). More delay means more heart damage, more risk of a-fib and other electrical problems, and less strength in your heart long term.
Good for you for scheduling an interview with a surgeon.
 
You might find that a surgeon is more likely to want to go in there and fix it before permanent damage to your heart is done. Some of us have found that cardiologist can take more of a wait and see approach. If your heart is having to compensate for all of that, at some point it is going to start causing damage to your heart overall. If I were in your shoes, I'd have to give serious thought to going ahead and taking care of it. As Laurie said, you'll only get worse, not better, with time. The healthier and stronger you are, the better outcome you'll most likely have.

I'm in NC too, what part of the state are you in?

Kim
 
Youngmom: You do not have a choice! You need the surgery real soon! Time is not your friend. Time is an enemy that is stalking you! You are symptomatic. That means the chances of permanent damage being done to your heart gets more likely with the passage of time. Fear and denial will get you nowhere.:thumbd: If I had had the advice that you are getting from my cardilogist I would have gotten a new cardilogist. I understand the fear.:thumbd: I understand the denial.:thumbd: MEANS NOTHING! TIME TO SAVE YOUR LIFE! Is your ascending aorta dililated? Are your family members who are telling you to hold off medical professionals? I doubt it!!! I am now 15 days post-surgery, I just had my follow-up with my cardilogist. I feel fabulous and my cardiologist could not have been more optimistic about my full rapid recovery. Sixth months ago I shared many of your thoughts and feelings. Allowing emotion to dominate tough choices would not have resulted in the significant success of my very complex surgery. What kind of doctor would tell a patient "if you could tolerate feeling bad we could hold off surgery". This makes absolutely no sense!!!! You are in far greater risk by not having the surgery than by having the surgery! Time for a second opinion!:thumbup:TIME TO HAVE THE SURGERY!:thumbup:
 
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If the valves are leaking to that extent it can only mean the heart is having to compensate which over time=damage.

If you have surgery now your heart will remain strong and possibly ten years down the road if you need future surgery
the techniques used will probably almost be to Day case level.

If you have your surgery now your heart will be strong and you will have all the energy you need to enjoy your children and not be a cardiac cripple.

Best wishes:cool:
 
So many of us here have learned the worse the valve, the faster it gets worse.

That was the case for me.
By all means, consult with as many doctors as you need to in order to feel comfortable with whichever decision you make.
 
Once I was fully diagnosed I could not wait to have the surgery. I was fully diagnosed 10/26/12. Surgery was 3/18/13.
This was the longest 4.5 months of my life! However, it blessed me with the ability to fully understand my condition. It gave me time to learn what remedies were available to me. I was able to determine what I felt was the specific treatment and valve that were right for me. I was able to predetermine that my surgeon was very experienced in my desired procedure. My surgery was extremely successful and my recovery is right on schedule.:angel:
 
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As has been said, you can go down hill very fast. With me they said that I had the two leaking valves and to wait and see, that was late April, by early June I was in severe heart failure and was told that I needed surgery within a couple of weeks, they operated at the end of June. I wish that they had just done it once they realised that it was likely.
 
I have had my Aortic (Bovine) and Mitral (Porcine) valves replaced at 19. I am now 28 and have lived the last 9 years happy and healthy. I am right around the time when I need to get them replaced again, plus they just noticed a pseudoanerysm.
Stay positive. :)
 
I also had Dr. Bavaria, for an aortic valve replacement. Small world! My surgery was last October, and I'm doing well. I wish you continued recovery!
 
This thread seems to be jumping to conclusions without data. You may very well need surgery, but typically Cardios will go by the numbers. Based on two valves, I would not know where to start. Overall, I concentrate on my ejection fraction (EF).

I would start with get a second opinion, and not necessarily a surgeons. I was tired before my first surgery, but I did not have the data to back it up. My Cardio said it was not time. I got second opinions by seeing multiple Cardios and they all agreed that it was time. At the CCF, the cardio said for people below 50% EF, we suggest surgery.

Your Echo and other tests should give the data as to the status of your heart and the probabilities of damage by delaying surgery.

With all of that said, for peace of mind, I would probably have surgery sooner than later. Verify the surgeon is well versed on procedures for both valves as well as doing both at the same time. This is not something to let a surgeon get experience doing, but rather to have an experienced surgeon do. Ask questions. Ask how many. Ask how many had problems.

Stay Well,
Scott
 
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