4th procedure

[Gail in Ca]

I saw the surgeon on Tuesday.
I didn’t need any of the questions I had planned to ask him. He had looked at my TEE, and said if he was me he would go with the TMVR. He’s done thousands of surgeries and felt my case was very high risk for problems like stroke. Also, going through the ribs doesn’t avoid all the scar tissue I have from previous surgeries. He would still have to go through it.
So, even though the TMVR is off label for me, it’s what he said I should do, and hopefully get 10 years from the new mitral valve. I asked why the bovine mitral only averages 5-7 years when aortic gets up to 20. He said the aortic bovine rarely lasts that long.

 

[3mm]

Gail - I pray that everything goes well for you!

 

[tom in MO]

Good luck Gail.

 

[Chuck C]

Thanks for the update Gail.

Wishing you the best of luck with your procedure.

 

[Seaton]

All the very best going forward, Gail.

 

[vitdoc]

Good luck. Similar story. Was about to have 4th open surgery when surgeon changed his mind and pivoted to Mitral clips. Two days later had them placed at Cedars. So far 8 yrs later all good. Also procedure from my perspective was a piece of cake. Infinitely easier than open heart.

 

[tommyboy14]

I always think in complex cases like this, it is best to go with medical advice. Of course there is a question of what happens when the TVMR wears out....

 

[V__]

Thanks for the update, Gail!

and hopefully get 10 years from the new mitral valve. I asked why the bovine mitral only averages 5-7 years when aortic gets up to 20. He said the aortic bovine rarely lasts that long.

Hate to say it, but the numbers might even be consistent. It may depend on how one views/quotes the data. For example, one could hope to live "up to 100", in reality only about 2% of the population gets that old. A typical lifespan is much shorter. Sounds like your current surgeon is a realist.

All the best with the procedure!

 

[dornole]

I’m just glad they have TMVR now and that it’s an option for you, Gail. Are you able to get that locally, or will you need to go to clinic that has that specialty?

 

[Deepak khanka]

All the best Gail

 

[Gail in Ca]

Thanks for the responses all!
Yes, I’m 24 miles from Cedars Sinai and that’s where the interventional cardiologist does his work as well as the surgeon I’ve seen. The NP said that cardiologist is terrific. He’s very particular about pre screening patients, making sure they qualify for his procedures.
I’ll be reaching out to his nurse to schedule the CT he wants which lets him know if this is a yay for me (vs nay).
I’ve been reading about this off label TMVR so I’m not totally clueless when I talk to the cardiologist again.
I would like to wait until my last concert, on June 30, before the procedure.
The surgeon was really on board with the TMVR when I said I was still playing my clarinet and performing many concerts.
I guess that told him I wasn’t in super bad shape, yet.

 

[Earthsciencerocks]

I saw the surgeon on Tuesday.
I didn’t need any of the questions I had planned to ask him. He had looked at my TEE, and said if he was me he would go with the TMVR. He’s done thousands of surgeries and felt my case was very high risk for problems like stroke. Also, going through the ribs doesn’t avoid all the scar tissue I have from previous surgeries. He would still have to go through it.
So, even though the TMVR is off label for me, it’s what he said I should do, and hopefully get 10 years from the new mitral valve. I asked why the bovine mitral only averages 5-7 years when aortic gets up to 20. He said the aortic bovine rarely lasts that long.

Prayers! Godspeed your recovery!

 

[ottagal]

Sending best wishes, positive thoughts and prayers for an excellent outcome.
Godspeed.

 

[slipkid]

All the best. From reading your posts up here all these years you sound like a trooper and will do fine!

 

[dornole]

“said I was still playing my clarinet and performing many concerts.”

At least they know you have that much breath control Gail. Fingers crossed that they have a solution that keeps you playing for many more concerts and enjoying life.

 

[Survived03]

Gail, do you have a procedure date set yet? Wishing you all the best from the run up to surgery all the way through when you are providing us all the details on how well the surgery went.

 

[Gail in Ca]

It took 3 weeks to finally speak to someone in the cardiologists office about the CT or other tests he would want. I called 3 times this past week to schedule the CT, but just could not wait on the phone more than 15 minutes. I’ll try again next week. All I know is if this was Stanford, I’d have had an appointment by now!
This makes me a little nervous.

 

[Gail in Ca]

I have gotten the CT results/summary. It mentions porcelain ascending aorta,
severe atherosclerosis of descending aorta, among other things which are not good. It’s been a week and I haven’t heard from any of my Doctors about this test. It was ordered to tell the cardiologist if I’m a candidate for TMVR off label.
I suppose if I’m in acute danger of a stroke they’d contact me.

 

[pellicle]

I have gotten the CT results/summary. It mentions porcelain ascending aorta,
severe atherosclerosis of descending aorta, among other things which are not good.

well at least you know where you stand and can take that for the second opinion on strategy.

I suppose if I’m in acute danger of a stroke they’d contact me.

IIRC you're already on the drug that is prescribed to dealing with that; so if anything maybe just steer your INR a little higher. What are you targeting anyway? 3.0 or a bit more?