How Long?

[HeatherT]

I am reading alot of posts. Probably all out of order etc etc..
My question of the moment for you folks of experience is...

From diagnoses to Surgery how long do you all end up waiting? I realize that many have different issues. Ultimately the surgery happens. We are hoping to put the surgery off. Bob is 44, and even with the success stories i am hearing from you folks... I am afraid of the Surgery. Its enormous to me. I am sure at some point years after he is recovered I will laugh at my concerns.

They have him on an ase inhibitor (bad spelling probably) that the Doctor is stepping him up higher and higher on. Now at 20mgs, how long can one go with Acute MR and not have symptoms?

 

[Ross]

There really isn't an answer here. Some can go years, some go weeks. It's something that has to be monitored closely and action taken when need be. I know that's not what you wanted to hear, but there really isn't anyway to predict in terms of length of time.

 

[nadi]

Hi Heather,

I don't think my story is the norm, I was misdiagnosed for nearly 2 years with Chronic obstructive pulmonary disease. I ended up in a urgent care one Sunday with trouble breathing, that was March 23rd of this year. Was sent for other tests and the MV prolapse was found early April and had surgery May 5th. It would have been sooner if I hadn't need to get a tooth pulled 1st. So I probably had symptoms 2+ yrs before it was taken care of.

I hope this helps, but remember each person is different.

 

[Nancy]

Hi Heather-

No one can predict how long before surgery, or even if surgery will happen. About the only thing that can be done is to have your cardiologist keep checking on the progression of the disease with the proper testing and taking a careful history of your husband's symptoms. There are highly technical measurements that are taken during echocardiograms or TEEs (transesophageal echocardiograms), and other tests which help the cardiologist determine when surgery is necessary.

If you go to the Reference section of this site you will find some excellent learning tools. I posted some from the Texas Heart Institute. It explains a great deal about the heart and valve disease. To get you started, here's a link:

http://www.tmc.edu/thi/valvedis.html

But also look through the other references. When you go to that forum, use the bottom of the page to expand the list. Where it says "last 30 days", click on it and change it to "the beginning", then "Go", there will be many more references.

I don't think many of us are willing to wade through this terribly technical treatise on the management of patients with valve disease, but here's a link.

http://www.acc.org/clinical/guidelines/valvular/dirIndex.htm

If nothing else, it helps us all to understand just how much can be learned about our hearts from the various tests and why there is no real answer for the question of how long.

Happy reading We give you a test when you're done.

 

[EVELYN]

Hi Heather

As everyone here said so well, there really isn't or doesn't seem to be a norm. Tyce, my husband, was diagnosed with stenosis and didn't have to have surgery for about three years. However, when he had the afib symptom, our cardio wanted his surgery done within a month. I do think the most important thing is to keep monitoring with your cardio. Pre surgery, Tyce went every 6 months.....matter of fact, his last visit before he went into afib, the cardio told him it would be within a year as he thought the valve was closing.

I, too, was scared to death of the surgery. However, everyone here got me up to and through it. This list is a wonderful site. You, too, will get through it, as I did. One important note, don't put off your husband's surgery if it is needed because of your fears.....if and when he needs it, get it done. You would never want to damage the heart even more by waiting.

This truly is a great place, and we will all be with you through it! I know I will always be grateful to everyone here because they got me through it. If you want, my VERRRY old thread was in presurgery.....I think it was entitled "A wife's questions." You surely will be able to see the wreck I was, so I surely understand where you're coming from.

Good luck.

Evelyn

 

[ALCapshaw2]

Heather,

I want to second Evelyn's comment about not postponing surgery too long. Cardiologists like to postpone surgery as long as possible but surgeons like to operate BEFORE there is PERMANENT DAMAGE to the heart muscle / wall. This can be determined by measuring the chamber size in echo or TEE tests.

ACE Inhibitors reduce pressure inside the heart which helps postpone surgery by reducing the undesired effects of the valve problem. In my case, I had Aortic Stenosis and my cardiologist put me on an ace inhibitor hoping to get another 3 to 5 years before surgery.

One year later, my symptoms worsened and surgery was scheduled for 2 months later due to the time it took to get an appointment and fit into the surgeons schedule. Two days before surgery I had chest pain, went to the ER, and was taken to the surgery hospital by ambulance where they inserted a 'heart pump' to help take the load off my heart before surgery.

I've had some pressure issues between my heart and lungs since surgery that *may* have been prevented if surgery had taken place sooner, before my heart walls / muscles thickened from compensating for my valve closing down.

Bottom Line: I would recommend learning about the valve options and interviewing surgeons BEFORE your husband becomes critical. Also, involve the surgeon in reviewing the echo / test results to determine the best time to proceed with surgery.

YES, heart surgery is a BIG DEAL, but it is a highly refined art with excellent success rates, typically better than 97% for first timers in otherwise good health when performed by very experienced surgeons at hospitals which do a LOT of heart surgeries. You can check Hospital ratings at www.HealthGrades.com

When the numbers show that his heart is beginning to enlarge, it is time to proceed. Sooner is better than later once muscle / wall thickening presents itself. Recovery goes a LOT smoother when the patient is NOT critical.

Remember, everyone on this list (or their family member) is a Heart Surgery SURVIVOR. We've ALL been afraid but we've all reached the point where we were more afraid NOT to proceed than to go ahead and have surgery. At that point, a peaceful feeling often comes as we accept our fate and look forward to a better life after surgery.

Best wishes,

'AL Capshaw'

"I Took a Lickin' but Kept on Tickin'"
(Lewis Grizzard book title)

 

[HeatherT]

Checking W/ The Surgeons

Checking W/ The Surgeons

Thanks for the input everyone and I will check those links that were shared as well.

A whole host of questions now crop up. The cardiologist has said that Bob would have to be ill (really ill) before Surgery. Our first instinct when we received the diagnosis was fix it fix it now.

A little more education and we agree it is in Bob's best interests to wait as long as possible but not waiting too long. The concern about his health being "too" poor is the big issue for sooner as you all agree. The other side of the coin of course being that the valves do not have a "lifetime warranty" (more humor). Of course there are also the mortality issues of the surgery itself. Then hope for continued advances in the technology that saves so many lives.

Our Cardiologist has not sent us in the direction of a surgeon at this point. Which is a nice relaxed way to be right now. Still testing etc, figuring out where we are. Eventually she will send us. You survivors and your wives... what is the one question you wish you had known to ask?? Should we start checking out Surgeons now, so that when the time comes we are prepared well in advance?

My type A personality would like to have this all planned out. My sensible side knows that just won't happen.

 

[HeatherT]

Not a TEST!

Not a TEST!

Hi Heather-

No one can predict how long before surgery, or even if surgery will happen. About the only thing that can be done is to have your cardiologist keep checking on the progression of the disease with the proper testing and taking a careful history of your husband's symptoms. There are highly technical measurements that are taken during echocardiograms or TEEs (transesophageal echocardiograms), and other tests which help the cardiologist determine when surgery is necessary.

If you go to the Reference section of this site you will find some excellent learning tools. I posted some from the Texas Heart Institute. It explains a great deal about the heart and valve disease. To get you started, here's a link:

http://www.tmc.edu/thi/valvedis.html

But also look through the other references. When you go to that forum, use the bottom of the page to expand the list. Where it says "last 30 days", click on it and change it to "the beginning", then "Go", there will be many more references.

I don't think many of us are willing to wade through this terribly technical treatise on the management of patients with valve disease, but here's a link.

http://www.acc.org/clinical/guidelines/valvular/dirIndex.htm

If nothing else, it helps us all to understand just how much can be learned about our hearts from the various tests and why there is no real answer for the question of how long.

Happy reading We give you a test when you're done.

 

[EVELYN]

Hi Heather

It's Evelyn again. I'm thinking of two things to answer your questions. One is that I do think you have to TRUST your cardio completely. Secondly, you have to make absolutely sure THEY know that you DON'T want to wait too long. Every time Tyce had his echo, we asked our cardio......"Is it time yet?" How long do you think? etc. I do think he was sick and tired of hearing us.

Your cardio will also direct you to surgeons when that time comes. Ours gave us three that he would use for himself. that was another question....who would you use? Out of those three, we picked a great one affiliated with a heart hospital. I truly feel that "heart specialty" hospitals are the place to go because they've seen it all and done it all.

When you ultimately meet the cardio thoracic surgeon, ask him lots of questions. One we asked was "Which valve do you think is best?" He recommended the way we were planning to go anyway, with the mechanical. Coumadin is not and has not been an issue and my husband did not want to possibly have another surgery again, if at all possible.

Don't know if that's a help, but it certainly will give you something to think about.

Evelyn

 

[weekycat]

Welcome!

Welcome!

Hi Heather,

Just wanted to add that not ALL cardiologists want to wait. The first one I saw, after a routine physical, told me about my MVP and said I had moderate to severe regurg. I had no symptoms and was totally unaware of this condition. He told me I might need surgery in 5-10 years or... maybe never. However, 6 mos. later I went back to get cleared for a totally unrelated surgery, and ended up seeing a different card at the same clinic.

This guy was a lot younger than the first, and said he thought I should have my mitral valve surgery FIRST and worry about the hysterectomy later! (This was before I told him I'd had some SOB and chest pressure that "coincidentally" started the night before this appt.) He also looked at the same echo, and called it "severe".

He said the NEW school of thought on the subject was to do it "sooner rather than later". He immediately sent me for a TEE, where they discovered that two of my chordae tendenae had ruptured and my leaflets were pretty much "flapping in the wind". It was definitely time for a repair. He also put me on an ace inhibitor that day, and said he thought the other guy should have put me on it 6 mos. earlier.

So, as Al said, it might be a good idea not to put it off, and you might even want to get a second opinion. They don't all tell you to wait until you're really sick. It also might make the difference in whether or not he has a repair, (like me), or a replacement.

 

[HeatherT]

RE: NOT A TEST

RE: NOT A TEST

My reply was supposed to say... quoting Nancy



As long as its an open web test I should do fine!

 

[Nancy]

No, no Heather, you have to memorize EVERYTHING, we're tough here.