Got my answers today!

[Steph]

Well I met my cardio today to go over the TEE report. I guess it is time to go surgeon shopping. He did not say it is time to cut yet, just get prepared. We had a wonderful appt. and I feel so very calm and level headed about all of this now, and I only have this forum and all of the wonderful people here to thank.

My thickening and the other findings of the TEE lead him to believe that repair will not be possible. But he did have positive things to say about tissue valves. I am very glad about that because that would have been my second choice. He did remind me however that that is a discussion for the surgeon and I need to interview a couple and start to get their opinions.

I guess at this point he is telling me to get ready. Take care of any other work that needs to be done. Find a surgeon that I am comfortable with and wait for the go ahead. He felt that I know my body well, and that with my level of activity it will be noticeable when the time is right. He will be following things every three months with an echo himself. He knows that timing is important to prevent damage, but his conservative side will not call for surgery before he has to. He did not think my current valve would last a year though.

Thank you all again for being there!!!!!!!!! I will post more and have many questions but now I have to go make dinner!

Steph (Today life is still good!)

 

[Karlynn]

I'm glad he gave you the go ahead to find a surgeon. I'd find one and run past your TEE results and other test with him/her. They may have a different view on when the time is to operate.

Some people notice symptom changes in what they can do, others don't. You won't want to go completely by how you feel. We have people all the time that join and say "I'm supposedly in bad need of surgery, but I feel fine."

My question to your doctor would be = if he's worried enough to do an echo every 3 months, what magical change is he looking for? You may also want to check out the number of echos your insurance company will cover in a year.

 

[Nancy]

Sorry you are facing an operation. I do like the way your card. is handling it, he sounds to the point and careful, and not wanting to stretch it out indefinitely.

 

[EireCara]

Best of luck.....

Best of luck.....

*Sorry to hear you need surgery Steph but glad to see you and your cardio are on top of things. Best of luck for the future. 8)

 

[susieq14]

Dear Steph,
I'm not sure whether to say I'm sorry or I'm glad (guess I've been in this silly old waiting room for too long ) that you received the go-ahead for your surgery but it is good that you feel confident with your cardiologist's decision.

I sincerely wish you all the best as you start the process of meeting surgeons and preparing for what lies ahead.

Continued Positive Thoughts and Peace!
Susie

 

[Steph]

Karylnn,
To answer your question, my cardio is watching the ejection fraction and LVIDs. The ejection fraction to him (in my case) is the most important. I do not think I can clearly explain it here but when he explained it to me I understood why he felt that was the most important. ( Sorry I can not be more clear). As far as echos, I do not know how many I can have! But I did get the feeling that he does not think we will need many. He wants me to tell him if I have any SOB. To date I can not say that for sure. Time will tell!!

I do plan to get at least one more opinion!! I do not expect to get a different response but I want to get a couple more suggestions for surgeons.

Thanks for all of your well wishes!!

Steph

 

[kodi]

Steph, I liked your cards comment about knowing your body well. From one of your other posts you are extremely active and in good physical shape. I was asymtomatic because I was in good physical shape. But this summer my running got really bad and I inherently knew something was going wrong. I hope you will listen to your body and also the card.
Good luck
Mel

He felt that I know my body well, and that with my level of activity it will be noticeable when the time is right.
Steph (Today life is still good!)

 

[aussiemember]

Steph,

Sounds like you and I may be in a similiar situation as I have a feeling my cardio will recommend I start talking to surgeons when I see him in early December. I agree with you that this forum has made me able to cope with the situation a lot better than I would have if I was on my own. Let us know how you go with the surgeons and what their advice is. BTW - is your regurg still classified as mod/severe?? Good luck with it all - Jeanne

 

[Rush20]

Glad to hear you had a good, straightforward conversation. Good luck with your upcoming decisions and we're here for support...

 

[Magic8Ball]

From someone 9 days post op for AVR i'd say you will be glad when it's over and no longer hanging over you.

I thought i was asymtomatic but the energy i feel within now is really weird, i'm having trouble holding back and pottering around the house this week. I'm gonna start my walking program a few days early.

I realise that your body doesn't 'sleep' much if you have done nothing but i used to sleep loads and i worked in IT sitting at a desk all day....i'm now buggering around the internet all day (just like work) and i have little need for sleep or rest....i guess i wasn't really asymtomatic then....

It's gonna be weird turning into one of those people who gets up and does stuff BEFORE they go to work.

You'll be fine, i'm 36 and a non-smoker but not exactly an athlete and i have got through this easily....if you are younger and fitter you will be out in less than a week....

Best of luck with the surgeon hunt, getting a good one makes all the difference.

 

[StretchL]

Hi, Steph!

Hi, Steph!

As was said above, I don't know whether to say "sorry you're going to have surgery," or "glad you're getting this taken care of..." Magic8's post is intriguing...

In either case... BEST OF LUCK!

 

[Steph]

Thanks all for your support!! I wanted to let you know that I have another cardio appt on December 11, (a second opinion) just to put my mind at ease. I also hope I can get more information on surgeons. I do not know where to start with that one. The "perfect" doc I had found was in Boston but his big thing is minimally invasive repair. My current cardio is not big on minimally invasive and does not think I am a candidate for repair. It was also a teaching hospital, he reminded me that I want a surgeon that was SKILLED and speculated in MV replacement. His words ?the surgeon is key?! He did not want me to end up as some ones practice patient. (Not that they would do that but he wanted me to be open minded).

Jeanne, to answer your question, on the TEE my regurgitation was classified as mod-severe. However, that is at rest. My stress echo?s show my regerg is much worse with activity. That is one of his concerns. That and that 2 ½ years ago it was mild. I stayed mild for 12 years then BAM, life changed.

Magic8ball, I am so glad you are doing so well. I can only pray that I will recover as quickly as you have. You give me hope. I do have a couple of years on you, I am 44. However, I am a young 44 and in great shape. Let?s keep our fingers crossed!!

Everyone else??.thank you! I really makes me feel good that you are there!!

Oh and StretchL??.I think your Ross is coming up soon. )))hugs((( AND GOOD LUCK!!

Steph

 

[SumoRunner]

> I stayed mild for 12 years then BAM, life changed.

Yeah, that's exactly what happened to me. It was being monitored for many many years and at two different times there was no change, no change, no change, BAM! The problem is the second BAM occurred while I was in the middle of running a 15Km road race. Not that there was a collapse or anything, just midway through the thing I ran out of steam and was reduced to a slow jog. Then I could not recover for weeks afterwards. These things do not worsen gradually or incrementally. It's the BAM scenario you worry about.

Got it fixed, no more BAMs, happy puppy, went back to run that 15Km many times since.

 

[Rush20]

Thanks all for your support!! I wanted to let you know that I have another cardio appt on December 11, (a second opinion) just to put my mind at ease. I also hope I can get more information on surgeons. I do not know where to start with that one. The "perfect" doc I had found was in Boston but his big thing is minimally invasive repair. My current cardio is not big on minimally invasive and does not think I am a candidate for repair. It was also a teaching hospital, he reminded me that I want a surgeon that was SKILLED and speculated in MV replacement. His words ?the surgeon is key?! He did not want me to end up as some ones practice patient. (Not that they would do that but he wanted me to be open minded).

Jeanne, to answer your question, on the TEE my regurgitation was classified as mod-severe. However, that is at rest. My stress echo?s show my regerg is much worse with activity. That is one of his concerns. That and that 2 ½ years ago it was mild. I stayed mild for 12 years then BAM, life changed.

Magic8ball, I am so glad you are doing so well. I can only pray that I will recover as quickly as you have. You give me hope. I do have a couple of years on you, I am 44. However, I am a young 44 and in great shape. Let?s keep our fingers crossed!!

Everyone else??.thank you! I really makes me feel good that you are there!!

Oh and StretchL??.I think your Ross is coming up soon. )))hugs((( AND GOOD LUCK!!

Steph

My surgeon performed the minimally invasive procedure and I could not be happier with the cosmetic results. I have a pencil thin scar the length of my pinky finger in the middle of my chest. Luckily, being a man, the chest hair grew back and you cannot see it unless I point it out. The Florida tan also helps so if you are a candidate, try to find a surgeon that is qualified and has performed the procedure with success.

Obviously your health and long term prognosis is more important than cosmetic concerns, however the recovery and post operative stress was much better as well.

Good luck.

 

[ALCapshaw2]

I LIKE your Cardio's approach.

He's not being overly aggressive or conservative. It sounds like he would be open to hearing the surgeon's input as to timing but (correctly) states that finding the RIGHT surgeon is key.

I agree, it's time to go surgeon shopping, hopefully with some guidance from your cardiologist or someone he / you trust.

'AL Capshaw'