New to the site, and in the waiting stage. AVR

[Pat in NH]

Jkm7,
Yes, very lucky I agree.

Broken Hearted,
You know, I'm starting to think I've been having mild symptoms for a while and have just been denying it. I went to the park with my boys yesterday and had a little chase game going. I got winded a bit faster than I thought I should, which made me anxious and then I felt worse, lol.

I just made an appointment to see Dr. Bolman at BWH on 4/23. Guess the ball is rolling now...

 

[Broken Hearted]

I know just how you feel. I think I probably get out of breath sooner than I used to, too. Now I'm just trying to decide when to do it, but I don't think there's ever going to be a 'good' time...
Maybe I'll see you there!
Let me know how it goes, and keep in touch.

 

[nngbwh]

Hi Pat in NH

Just want to say Hi and welcome you aboard.

 

[Pat in NH]

nngbwh,
Thanks for the welcome!


Well I'm just waiting for my 4/23 appointment at BWH. I'm very curious at this point. Still not sleepy very well either...

 

[nngbwh]

Keep us updated. I know it will be hard not thinking about it but try to relax.
You will be fine.

 

[Pat in NH]

Keep us updated. I know it will be hard not thinking about it but try to relax.
You will be fine.

I'm trying, lol. Keeping busy with work and the family helps. And I noticed that exercise helps the most. It clears my mind and makes me feel better about myself physically.

I just noticed your signature line and that you chose BWH. Did you interview more surgeons there or was Dr. Shekar the one for you right away?

When I called the BW valve center I was transferred to Dr Bolman's office, I think that's what happened anyway. So I made the appointment to see him. My thinking was that at least I've got the ball rolling and I can talk to others later on if I wanted.

 

[nngbwh]

Pat,

My Cardiologist recommend Dr.Shekar @ BWH. When I spoke to him I felt comfortable and complete confidence in Dr.Shekar. I had a gut feeling he was the right one so I did not seen other surgeons. Dr Bolman is the Chief Cardiac Surgery at BWH so you can't go wrong. My mind was set @ BWH but take your time and do your homework you have other hospitals like Mass General Hopsital and others. When you interview surgeons ask questions and go with your gut feeling.

 

[Allisoninoz]

Hi Pat. I'm in a pretty similar situation but across in Australia. I'm also 41 and have know since I was a teenager I'd need my bicuspid valve surgery when I "was about 40". Seemed a lifetime away then, of course. But now I'm here!!! I had heart surgery twice as a child (age 4 and 11) but don't remember a lot. I've had yearly echoes for about 15 years but last visit my cardio said see you in nine months. Like you, my stenosis has been increasing but I don't know the figures.
It's only five months since I've seen him but I've booked in to see him this week because of some symptoms (?) starting - coughing at nigh (started suddenly about eight weeks ago), some dull aches in my left chest/back that I've always put down to neck/back soreness from computer work and feeling 'blah'. I don't have the other symptoms such as swollen feet or dizziness. But I do also have well-controlled mild epilepsy so sometimes it's hard to discern if my tiredness and occasional zone-outs are due to heart or dippy brain and its medication. A big part of me wants the op done and over with so I can stop worrying about it and always having it hanging over me (I have an 8yo daughter and want to stop worrying about the impact on her) but when I've raised that in the past with my cardio, his response has been 'well, we don't operate on people who don't need it'. It'll be interesting if his view has changed this week.
Try not to be too anxious (HAH!). My late dad always told me that if you're going to have something wrong with you, it's great that it's your heart because they know and can do so much. I like to remind myself of that. There's also some really encouraging posts on here about how much better people feel after surgery (not day one obviously but definitely within weeks and months) ...

 

[Pat in NH]

Pat,

My Cardiologist recommend Dr.Shekar @ BWH. When I spoke to him I felt comfortable and complete confidence in Dr.Shekar. I had a gut feeling he was the right one so I did not seen other surgeons. Dr Bolman is the Chief Cardiac Surgery at BWH so you can't go wrong. My mind was set @ BWH but take your time and do your homework you have other hospitals like Mass General Hopsital and others. When you interview surgeons ask questions and go with your gut feeling.

Thank you. I'm collecting quite a list of questions, lol. I'm going to try and widdle it down to just the important ones though. My wife will be with me, she has a better memory than I and she has her own questions too.

 

[Pat in NH]

Hi Pat. I'm in a pretty similar situation but across in Australia. I'm also 41 and have know since I was a teenager I'd need my bicuspid valve surgery when I "was about 40". Seemed a lifetime away then, of course. But now I'm here!!! I had heart surgery twice as a child (age 4 and 11) but don't remember a lot. I've had yearly echoes for about 15 years but last visit my cardio said see you in nine months. Like you, my stenosis has been increasing but I don't know the figures.
It's only five months since I've seen him but I've booked in to see him this week because of some symptoms (?) starting - coughing at nigh (started suddenly about eight weeks ago), some dull aches in my left chest/back that I've always put down to neck/back soreness from computer work and feeling 'blah'. I don't have the other symptoms such as swollen feet or dizziness. But I do also have well-controlled mild epilepsy so sometimes it's hard to discern if my tiredness and occasional zone-outs are due to heart or dippy brain and its medication. A big part of me wants the op done and over with so I can stop worrying about it and always having it hanging over me (I have an 8yo daughter and want to stop worrying about the impact on her) but when I've raised that in the past with my cardio, his response has been 'well, we don't operate on people who don't need it'. It'll be interesting if his view has changed this week.
Try not to be too anxious (HAH!). My late dad always told me that if you're going to have something wrong with you, it's great that it's your heart because they know and can do so much. I like to remind myself of that. There's also some really encouraging posts on here about how much better people feel after surgery (not day one obviously but definitely within weeks and months) ...

Wow! Our lives do sound very similar. And yes, I'm also surprised that the time has come so quickly.

It does sound to me like you are starting with the symptoms that my Drs. keep asking if I'm having yet.

I haven't actually talked to my kids about surgery yet. I notice them listening when my wife and I are talking, but I don't think they really understand yet. I've been trying to think of the best way to talk to them about it.

Thanks for your encouragement and best wishes to you with your surgery.

 

[Allisoninoz]

I'll let you know what my cardio says after my visit (assuming I'm not admitted there and then ... that's a joke ... i hope ...).

 

[Pat in NH]

I'll let you know what my cardio says after my visit (assuming I'm not admitted there and then ... that's a joke ... i hope ...).

Please do

 

[Pat in NH]

Well I had my appointment at BWH with the surgeon Dr. Bolman today. I brought along my 3/09 echo report and video as well as the report from this years 3/10 echo. His opinion was that I should have my valve replaced soon, even before feeling symptoms. And after talking to him, I agree. One good point he had was that the worst symptom in my case would be valve failure. Sobering.

The Dr suggested I have another echo while I was there and luckily they were able to fit me in. He said he would call me next week with the results and further recommendations.

So it looks like this is going to be sooner than later, lol. I was kinda hoping he'd say I had a year to think about it!

Anyway, I know earlier I had said I was considering the Ross Procedure, but my wife and I have decided against going that route for a few reasons. Higher risk, more invasive surgery, and because of afib I will probably end up on coumadin anyway.

I will update when I learn more.

Thanks all!

 

[nngbwh]

Thanks for the update, Pat. Better to do surgery sooner than later.

 

[ALCapshaw2]

Pat -

Have you decided NOT to have a Ross Procedure? (FYI, Dr. Stelzar appears to be the most prolific practicioneer of the RP. If you are still interested, check member "StretchL" signature line which has a link to his Photo-Journal of his RP.

Be sure to ask the surgeon at BWH if he is willing to use your valve of choice.
(Note that most surgeons typically only use one or two valves of each type).
Since you mentioned an interest in the On-X valve, you can call the company (888-339-8000) and ask which surgeons at BWH use their valves. Also note that some (Many?) Hospitals put their Valve Business up for competitive bid. It is my understanding that MGH does not yet use On-X.

'AL C'

 

[Pat in NH]

Pat -

Have you decided NOT to have a Ross Procedure? (FYI, Dr. Stelzar appears to be the most prolific practicioneer of the RP. If you are still interested, check member "StretchL" signature line which has a link to his Photo-Journal of his RP.

Be sure to ask the surgeon at BWH if he is willing to use your valve of choice.

Al C,


(Note that most surgeons typically only use one or two valves of each type).
Since you mentioned an interest in the On-X valve, you can call the company (888-339-8000) and ask which surgeons at BWH use their valves. Also note that some (Many?) Hospitals put their Valve Business up for competitive bid. It is my understanding that MGH does not yet use On-X.

'AL C'

Hi Al,

Correct, we have decided not to go with the RP. We decided that the benefits for me personally, do not out weigh the risks. I had planned on using Dr. Stelzer if we decided it was the right procedure for me. Thanks for the info anyway. Who knows, I may change my mind again, lol.

I will be sure to ask about valve choice. We haven't had that conversation with Dr Bolman yet. To be honest, I'm not even sure which valve is best for me. I like the design and benefits of the On-X (possibly using less coumadin) but is it too new to the market? I might want to play it safe with something more time tested. I just don't know yet. I guess I have some research to do!

Thanks again for the info, I will call On-X and ask some questions.

Oh, and I forgot to mention, the wife and I really like Dr Bolman. He's very easy to talk to and very understanding. Made us both feel more at ease.

 

[Dale 1]

Hi Pat,

I'm a neighbor in Massachusetts. I had BAVR and aortic grafting at Tufts Medical Center in Boston in November of last year. My surgeon was fabulous -- Dr. Duc Thinh Pham -- and I really recommend him. I'd had a heart murmur since I was about six or so, but was always told it was nothing to worry about. I started having some symptoms last August that I thought were due to acid reflux or some other digestive problem. My gastroenterologist sent me to get a stress echo, which showed stenosis. Four days later I was in the ER feeling really awful (seemed like it was time to stop ignoring those pesky symptoms), and two weeks after that I had surgery. I didn't really have time to do much research. Which I'm not complaining about, it is what it is. Every patient's experience is different, I guess. I chose to have a bovine tissue valve, and it's working beautifully! I will have to have it replaced in 12-15 years, but my doctor feels pretty confident that they will be able to do that surgery in a much less invasive fashion.

Welcome, and good luck. Keep us posted!

 

[Pat in NH]

Hi Pat,

I'm a neighbor in Massachusetts. I had BAVR and aortic grafting at Tufts Medical Center in Boston in November of last year. My surgeon was fabulous -- Dr. Duc Thinh Pham -- and I really recommend him. I'd had a heart murmur since I was about six or so, but was always told it was nothing to worry about. I started having some symptoms last August that I thought were due to acid reflux or some other digestive problem. My gastroenterologist sent me to get a stress echo, which showed stenosis. Four days later I was in the ER feeling really awful (seemed like it was time to stop ignoring those pesky symptoms), and two weeks after that I had surgery. I didn't really have time to do much research. Which I'm not complaining about, it is what it is. Every patient's experience is different, I guess. I chose to have a bovine tissue valve, and it's working beautifully! I will have to have it replaced in 12-15 years, but my doctor feels pretty confident that they will be able to do that surgery in a much less invasive fashion.

Welcome, and good luck. Keep us posted!

Thanks Dale for your encouraging story

 

[ALCapshaw2]

Hi Al,

Correct, we have decided not to go with the RP. We decided that the benefits for me personally, do not out weigh the risks. I had planned on using Dr. Stelzer if we decided it was the right procedure for me. Thanks for the info anyway. Who knows, I may change my mind again, lol.

I will be sure to ask about valve choice. We haven't had that conversation with Dr Bolman yet. To be honest, I'm not even sure which valve is best for me. I like the design and benefits of the On-X (possibly using less coumadin) but is it too new to the market? I might want to play it safe with something more time tested. I just don't know yet. I guess I have some research to do!

Thanks again for the info, I will call On-X and ask some questions.

Oh, and I forgot to mention, the wife and I really like Dr Bolman. He's very easy to talk to and very understanding. Made us both feel more at ease.

FYI, the On-X Valve was first introduced to the World Market in 1996 (? - I need to double check that date) and approved by the FDA for use in the USA in 2001. When I last checked, On-X had produced over 70,000 valves.

 

[COLLEEN S]

Welcome Pat! I had a Ross done and a AVR and aneurysm repair. Why the Ross? Click on the 'search' feature and type in Ross. You'll see why I ask.