I have a surgery date Nov 9th

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breakofdawn2000

Hello Again,

After my first initial post I have been on a whirl wind of information and mis-guided information and have come to the realization that I do need to have this surgery.
Finding out in July that there was something wrong with my valves threw me for a loop and after having the T.E.E. was told by my cardiologist surgery should be scheduled within a 6 month period....as they are leaking pretty badly. I then went in for a Heart Catherization and the doctor who did this procedure on me told me that he could barely hear my Heart Murmur (as if I would make this UP?) and when the procedure was over and done with told me and my husband that everything was fine and would be okay for another 10-15yrs and not to worry about surgery.!!!!
So ELATED that I was (who wouldn't be) I went skipping along to my cardiologist and told her that I was fine and that my heart cath looked good to the doctor who did it and that I don't need to worry about surgery.
She was a little confused by what I was telling her and when she read my heart catherization results agreed that the numbers were good, no blockages etc.....However she still felt that because of the T.E.E. and the Echo that I should definately make an appointment with a surgeon and see what he/she would say. I did and he did say my valves were leaking and that even though the Heart Cath looked good that the conclusion is my valves are leaking and that they will need to be fixed and that timing would be everything with me because my heart could begin to enlarge and that I really didn't want it to get to that stage..??
Not truly believing him either, I went to another Heart Surgeon and he told me I should seriously get this done within the next 3month period.
So I went back to the first Heart Surgeon and scheduled my surgery.

I am really frightened about all of this I need my Aortic replaced and a possible repair on the Mitral as my surgeon seems to think due to the lack of calcification on the Mitral it should be a succesful repair.

He does do minimum invasive but not on double valves......!!!

I guess all I can do now is move forward and get what needs to be done overwith.

I really am still confused about what valve to have and have read and read until I can't read anymore....I am leaning towards the Tissue Valve because I don't want to take Coumadin for the rest of my life and this surgeon seems to think I will still have longevity of life no matter which decision I make!!!

Thank You for all the posts and this forum for being available for information that you would not find on a regular web site....real people are what give us insight into what you really have to deal with and it has been really helpful to have all the knowledge prior to having this surgery.

I just hope it all goes well...Eh??:eek:

Breakofdawn2000:
 
Hi there - sounds like you really have had a few ups and downs lately - especially considering the different information that you have been told by the medical specialists. All the best for November 9th - there is certainly a lot of usual information on this site and also many people who can offer great advice!!
 
What conflicting reports you have had! My TEE was what pushed me over the top, since it proved to show more deterioration than my echoes. They used the cath. just to basically make sure my arteries were all clear so I wouldn't be needing bypass at the time of surgery. The GOOD thing from your standpoint is that you'll have a much better outcome by taking care of this before your valves become more damaged. All the surgeons seem to be in agreement about the early intervention thing.

Good luck, and please post any questions you may have about your upcoming surgery.
 
I put you on the calendar for November 9th and we will all be here ready and waiting to help in any way we can between now and then. Best Wishes to you!
 
Hello! I guess I missed you when you first joined up in July. Please accept my belated welcome....I wasn't on as much over the summer as all 3 kids were home from college.

I wonder if the doctor who performed the heart cath was talking about the fact that your arteries were all clear. They always want to know if there is going to need to be any by-pass work on a patient once they are in there already for the valve replacements. I know that the heart cath also gives good measurements, but do you suppose the thumbs up was for clear arteries?

It is always a good idea to have the surgery before the heart has begun to enlarge. There is "remodelling" of an enlarged heart post surgery, but it is not always enough to bring it back to the normal range, so your cardiologist is proper in stating that to you. You see, with the heart having to work harder because of your defects, it can cause the heart muscle to grow. It overworks the heart. The heart can compensate for the defects for quite awhile, but eventually, it gets tired. Yours is showing itself to be getting tired, as the numbers are far enough out of range from your diagnostic exams, to alert your cardiologist. Fortunately, modern medicine is well equipped to identify and correct this problem. You are actually very lucky that your astute physicians are leading you now to correct this problem.

You are probably flooded with anxiety and questions. We all were!!!! Please feel free to ask us anything and let us help you prepare for this surgery. It honestly sounds uglier than it is. You will be fine!! :D so, ask away!

Keep posting!

Marguerite
 
Yes, what a rollercoaster! I wonder just what the dr. that did the cath was looking at?? That's quite a discrepency to say you have 10-15 years and then be told next 3 months.

What is your age, and do you have children still at home? Please take a read through this thread, it may give you more information about Coumadin than you have now. http://valvereplacement.com/forums/showthread.php?t=17116
 
Many schools of thought. My 1 question is how old are you? Do you pass the stress tests with ease? I'm not a dr. so don't know, but I had different reactions from diff. doctors, one of whom said my bicuspid valve would be fine for years.

Three others told me otherwise, so I went with the surgery. LISTEN to your own body. If you feel fine, no problems at all, then waiting might not be foolish.

I had a slow-developming aneurysm which I didn't want to burst (John Ritter, poor soul).

I chose the On-X valve because, even though you need to take coumadin, there's some very promising studies indicating that maybe you don't need to take as much, or maybe not at all eventually. What this does for me is give me a comfort zone, knowing that the study in south africa shows that a number of patients with NO coumadin didn't keel over with blood clots.

So, if my INR is a little low, it's probably really well within the On-X range.

And I do not want to go back in and have the surgery done again. Some people go in two or three times.

Good luck, either way you will be fine! But once your heart starts to enlarge, it can't repair itself, so keep that in mind.

Hope this helps.:cool:
 
updated information

updated information

I am 41yrs old and hopefully have many years ahead of me yet.
I am extremely tired and I don't know if this is due to the blood pressure medication as I don't have high blood pressure and my blood pressure on a normal day will now read 90 over 60 which could be making me very tired also.
I am feeling an aching in the left side of my heart which the heart surgeon told me could be the Mitral reguritating and causing pressure in my heart and is only noticable when I am stressed out.....which right now is most of the time.
I am now having nightmares about the surgery and had a terrible one last night it is really scary as it is the unknown......kind of how I felt when I was due to have my first child but the second time it was easy...so I guess that is kind of what i'm relating it to.

I know I am in good hands but I keep thinking maybe they are wrong and even thinking maybe they got my records mixed up with someone elses....however my Cardiologist DID my T.E.E. so she was there when I had the procedure done and is totally adamant that the surgery needs to take place A.S.A.P.....she even had 2 of her colleges look at my Heart Cath and T.E.E. and she said they were in agreement with her.

She is a very persistent Cardiologist and is definately looking out for my best interest....I am just still finding all of this hard to believe.:(

Thank You for your posts it is nice to know other people have gone throught the same thing.


Diagnosed July 2006
Aortic valve replacement and
Mitral repair or possible replacement
Due to Severe Aortic insufficiency and
Sever mitral regurgitation
 
It sounds like you are in good hands. If you weren't scared, it wouldn't be normal. If you are feeling like you are stressing out too much over it, then don't hesitate to ask your doctor for something to help you with the stress. I'm sure this is going to be a case where your nightmares are worse than reality. But the way you are feeling now might be something to consider when choosing your valve.

Continue to do your research here and go with what feels best for you. Coumadin is not the nightmare that some in the medical community make it out to be. I've lived an active, normal life on the drug for almost 15 years. Statistically Coumadin and reoperations are pretty even. We have people who would rather face a deteriorating valve, more surgery and recovery in order to stay away from Coumadin, and we have people who would rather take Coumadin the rest of their lives than have to be faced with the certainty of more surgery. The reality is that neither choice guarantees you anything, it just give you good odds your reasons for your decision are going to prove out.
 
Believe me, we've all been through this one way or another. Like Karlynn said, you seem to be in capable hands. We're all pulling for you and hoping things are successful for you. While only my mitral was the regurgitant one, I also felt pressure and aches from the time I was diagnosed to my surgery date. There's something about being highly cognizant of your "condition" once you're made aware of it.

Keep us posted and take good care of yourself--rest!

Debi (debster913)
 
Tina,
wow what an unbelievable story - I can't imagine what you have been going through with so many different opinions. It sounds like your cardio is right on top of things though.

I am sending you lots of positive thoughts and best wishes as you prepare for your surgery date. Don't beat yourself up for feeling scared - I think it comes with open heart surgery.

Take Care!
Susie
 
Hi! I read your story with great interest. I've known about my aortic stenosis for ten years now and then four years ago I also developed mitral stenosis. I was able to keep the aortic stenosis in the moderate range and the mitral stenosis in the mild range until this past biannual visit to the cardiologist whn he determined that both had advanced. The aortic stenosis is now in the severe range and the mitral in the moderate range. So, to make the story short I am now scheduled for a doule valve replacement surgery on Nov. 1st. I am 53 and don't relish having to go through this type of surgery again, so I have opted for mechanical valves. I'm scared too, but some days are better than others. I've found that all of the supportive people on this site help me a lot. I am at the point where I just want this to be over with.

I hope all goes well for you. You're in a good place to talk about any questions or concerns you may have.

Best wishes. Marcie
 
MarcieMarine

MarcieMarine

Hi, I just want to send you Best Wishes for your surgery and recovery. I will remember you in my prayers. :)
 
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