Aortic Valve Replacement for a 76-year-old Woman

[TBeats]

Unless you are completely in charge (legally) of her medical decisions, I can NOT imagine a 2nd opinion doctor, letting you come to the appt and not the patient. Also For 2nd opinions you need actually CDs or tapes of the procedures doneand not just the paperwork. Once you decide who you want the 2nd opinions from, you contact them and see exactly what they need, and then the patient fills out the forms from the place that has the records and has them sent.
I've taken care of all my sons medical decisions since he was a day old and needed heart surgery, all of his doctors know we always get the records ect, BUT as soon as Justin turned 18 HE had to sign the forms not me, so I would imagine it works the same way for a parent, as long as they are legally in control of their lives THEY have to sign the forms. They also can sign HIPPA forms so you are allowed to talk to the doctors also, but they have to decide that

Thanks very much for the explanation.

 

[Lynlw]

What exactly does "trials for valve replacements by cath" mean? And how does that differ from a regular balloon procedure?

Thanks!

A balloon procedure basically just opens the valve up, using a balloon cath. where the valve replacemnts by cath, replaces the valve in the cath lab instead of surgery. it is fairly new and still in the trials tbut there is a link to a story about it as well as links to the actually trials with list of centers ect in this thread http://www.valvereplacement.com/forums/showthread.php?t=28676


actually here is a direct link to the info about the trials, hwhat includes or excludes the patients as well as the centers participating http://www.clinicaltrials.gov/ct/show/NCT00530894?order=4

 

[TBeats]

If she needs an aortic valve replaced, this could be largely impacting on her physical well-being.

Yes, that's exactly what she needs. The Dr. said that the aortic valve is "very calcified."

If it is only giving her extra years without improved quality of life, is it something she should go through?

To let her just live with the disease until she dies just doesn't sit right with me. I understand your point, tho'.

This is obviously a difficult decision to make and I wish you good luck with it.

I appreciate your words, advice, and the overall help. Thank you!

 

[TBeats]

A balloon procedure basically just opens the valve up, using a balloon cath. where the valve replacemnts by cath, replaces the valve in the cath lab instead of surgery. it is fairly new and still in the trials tbut there is a link to a story about it as well as links to the actually trials with list of centers ect in this thread http://www.valvereplacement.com/forums/showthread.php?t=28676


actually here is a direct link to the info about the trials, hwhat includes or excludes the patients as well as the centers participating http://www.clinicaltrials.gov/ct/show/NCT00530894?order=4

I'll look into those links right now. Thanks!

 

[azpam]

since she is of sound mind, she needs to make a decision. If she were to get a new heart valve, she might not be so chair/homebound. She might perk up,feel stronger, and have another 15 plus yrs ahead. this might have been creeping up on her for quite awhile and that is why is slowly deconditioned.There was an article recently that they replaced a valve on a 91 yr old through the artery done like a heart cath. so you can search that thread for it.

 

[Lynlw]

Here are the participating centers in Ill
United States, Illinois
Evanston Northwestern Healthcare Recruiting
Evanston, Illinois, United States, 60201
Contact: Ted Feldman, MD
Contact: John Alexander, MD
Principal Investigator: Ted Feldman, MD
Principal Investigator: Pat McCarthy, MD
Northwestern University Recruiting
Chicago, Illinois, United States, 60611
Contact: Patrick McCarthy, MD
Contact: Charlie Davidson, MD
Principal Investigator: Patrick McCarthy, MD
Principal Investigator: Charlie Davidson, MD


I took out the email and phones numbers but you can get them http://www.clinicaltrials.gov/ct2/show/NCT00530894?show_locs=Y#locn

 

[olefin]

I don't expect them to accommodate our every desire, but a language barrier I would assume is a common thing that an established hospital should have control of? Or am I off on this?

Yes, I think you are way off!
Every hospital in the USA can't provide translators for every language. That is your responsibility. That's the way I would feel if I was out of the USA.

 

[TBeats]

Here are the participating centers in Ill
United States, Illinois
Evanston Northwestern Healthcare Recruiting
Evanston, Illinois, United States, 60201
Contact: Ted Feldman, MD
Contact: John Alexander, MD
Principal Investigator: Ted Feldman, MD
Principal Investigator: Pat McCarthy, MD
Northwestern University Recruiting
Chicago, Illinois, United States, 60611
Contact: Patrick McCarthy, MD
Contact: Charlie Davidson, MD
Principal Investigator: Patrick McCarthy, MD
Principal Investigator: Charlie Davidson, MD


I took out the email and phones numbers but you can get them http://www.clinicaltrials.gov/ct2/show/NCT00530894?show_locs=Y#locn

Just finished reading that GMA article and wow!!! That is really, --really-- exciting news and am beyond grateful that you mentioned it.

Two questions I'm wondering whether or not you could answer for me:

1.) My grandmother is "very sick", yes, but is she "high risk?" What constitutes a "high risk" patient? According to her surgeon, the mortality rate is 10%. I'm hoping that won't be a barricade.

2.) Are you saying that Northwestern performs this operation? If so, what exactly is it called? The "Breakthrough Heart-valve Procedure?"

I'll be giving them a call tomorrow, but would love an answer tonight if you have one.

Thank you once again!!!

 

[TBeats]

Yes, I think you are way off!
Every hospital in the USA can't provide translators for every language. That is your responsibility. That's the way I would feel if I was out of the USA.

You're right! I don't understand how people do it, tho'.

 

[Lynlw]

Just finished reading that GMA article and wow!!! That is really, --really-- exciting news and am beyond grateful that you mentioned it.

Two questions I'm wondering whether or not you could answer for me:

1.) My grandmother is "very sick", yes, but is she "high risk?" What constitutes a "high risk" patient? According to her surgeon, the mortality rate is 10%. I'm hoping that won't be a barricade.

2.) Are you saying that Northwestern performs this operation? If so, what exactly is it called? The "Breakthrough Heart-valve Procedure?"

I'll be giving them a call tomorrow, but would love an answer tonight if you have one.

Thank you once again!!!

percutaneous aortic valve replacement
as for the other, did you read the inclusion criteria (Oh BTW yes to Northwestern) and the other info in the 2nd link? I think in the end it is up to the doctors running the trial. BUT the last conference for CT, heart surgeons
had alot of forums on percutaneous valves and the last was about who really is "inoperable" THIS MIGHT take you right to that webcast (IMO the fact she doesn't get around well and had previous surgery might help her get in the trial)
http://www.aats.org/2008webcast/sessions/player.html?sid=08050104.19 (it's 25 min) if it doesn't work go to http://www.aats.org/2008webcast/ and scroll down to Sunday, May 11, 2008
AATS/STS Adult Cardiac Symposium
and the last talk in that section is the most info I have found.

NOw please do not get your hopes up, I believe for the aortic trials right now IF you get in the trial there is no guarentee you will get the cath, (But I could be wrong) any way I certainly think it is worth looking into, the worse they can say is no and then you are back where you are now. and IF she is not a candidate for the cath, please remember having 1 previous surgery isn't that uncommon and most major centers, like North western, operate on people that have had MULtiple redos all the time, Granted my son is alot younger, but he has had 5 OHS as well as 2 heart related surgeries that didn't require the heart lung machine, but had all or part of his same incision open.

 

[TBeats]

You are truly an angel, Lynlw. It's impossible to thank you enough. I will definitely keep you and your son in my prayers and will ask my mom to do the same. Thanks a million for your incredibly meticulous and detailed help! I'll be sure to post an update soon.

 

[TBeats]

And a BIG thanks to Ross for his kindness and effort.

And to everyone else that helped, as well.

 

[Lynlw]

You are truly an angel, Lynlw. It's impossible to thank you enough. I will definitely keep you and your son in my prayers and will ask my mom to do the same. Thanks a million for your incredibly meticulous and detailed help! I'll be sure to post an update soon.

Thank you, no problem. but I'll be sure to tell my husband someone thinks I'm an angel, he might not agree lol. but I'm always glad to have more prayers (Justin is doing well right now)

 

[ALCapshaw2]

Dr. Patrick McCarthy at Northwestern is one of the Leading Heart Surgeons in the country. He is Ross' Hero (our moderator) when he was at The Cleveland Clinic (#1 Rated Heart Hospital), before he was recruited by NWestern.

Since 10% morbidity and mortality is the 'standard' risk often quoted for Second Surgeries, I'm guessing that your grandmother would not be classified as 'High Risk' in the terms necessary to participate in the catheter placed tissue valve (but it never hurts to ask!).

When it comes to Heart Surgery, "Local Doctors", GP's, PCP's, and even many Cardiologists, etc. often know Very Little about the procedures or the risks, especially in the hands of a Top Rated Surgeon such as those at NorthWestern.

IMO, your grandmother needs to consult a High Risk Surgeon with experience doing re-do's, especially in the elderly. SHE needs to understand the Benefits vs. Risks of Valve Replacement Surgery.

Believe me, Top Surgeons are NOT going to 'push her' into surgery for the money. They have more patients than they can handle and are not going to force their services on an unwilling patient. One of the KEY components to a successful recovery is a Positive Attitude. Without that, the surgeon will likely decline the patient.

'AL Capshaw'

 

[catwoman]

TBeats:

My father-in-law was 74 when he had his 2nd MVR surgery in 1989, 10 years after his first one. He was very ill -- he had stopped his annual cardio checkups several years before (didn't like doctors).
He also needed his AV replaced, another valve repaired, the aorta repaired and a quad bypass. He was in congestive heart failure because his heart was failing. I saw R.C. get teary when one of his doctors told him he didn't think he'd make it, that he really needed a heart transplant but he definitely would not survive that.

But -- he did make it, his double VR + quad CABG despite a long convalescence! He was only 2 years younger than your grandmother.

And this was 19+ years ago. There have been many advancements in cardiology and cardiovascular surgery in the meantime.

 

[Adrienne]

I know of 3 women who had AVR in their late 80's. All of them lived several years after that.

 

[Herb M]

Being 76 is not very old today. If she is extremely limited in her activity and the problem is the valve, an operation may be desireable. If she has more than one serious medical problem,such as by-pass needed, in addition to a valve replacement, then I would consider the risk as great, especially if she is very weak now.


I am not a doctor.

 

[TBeats]

TBeats:

My father-in-law was 74 when he had his 2nd MVR surgery in 1989, 10 years after his first one. He was very ill -- he had stopped his annual cardio checkups several years before (didn't like doctors).
He also needed his AV replaced, another valve repaired, the aorta repaired and a quad bypass. He was in congestive heart failure because his heart was failing. I saw R.C. get teary when one of his doctors told him he didn't think he'd make it, that he really needed a heart transplant but he definitely would not survive that.

But -- he did make it, his double VR + quad CABG despite a long convalescence! He was only 2 years younger than your grandmother.

And this was 19+ years ago. There have been many advancements in cardiology and cardiovascular surgery in the meantime.

That's great to hear! I'm glad he made it out okay.

And thanks very much for the positive words.

 

[TBeats]

I know of 3 women who had AVR in their late 80's. All of them lived several years after that.

That's good to know. Thank you!

 

[BigOwl]

TBeats: about the translation problem. You don't mention (at least I couldn't find it if you did) what language your grandmother speaks. But if you're a member of a church or synagogue with a congregation that includes immigrants or second-generation folk who speak the language, there may be volunteers who could help out. Immigrant community centers are also a source. Chicago is home to so many languages and ethnic communities that there are probably a number of sources, including elder-care services, that might be able to help out. Good luck with all this!