Aortic Valve Replacement Needed

[Blnmakerr]

I am a new member to this site. I was told a couple weeks ago, after a heart cath, that my bicuspid aortic valve now needs to be replaced. I scheduled an appointment with the surgeon my cardiologist suggested and did NOT like his negative approach to the risks involved...His first words to me were "you realize you could die during the surgery".....He then went on with the "stats" for complications and mortality....I would have liked to hear something positive....

I am now seeking a second opinion with Dr. Lars Swensson at The Cleveland Clinic. Hopefully he will be more positive and explain all the alternatives, so I can make an informed decision. I would like to schedule the surgery by the end of this month....

I am 64 years old, had a pacemaker implanted in February for heart block. I am in generally good physical shape, except for the aortic valve. I have not yet been able to decide of which valve (tissue or mechanical)....

Thank you for your help,

Douglas Kerr

 

[Cooker]

Hi Douglas,

Welcome to VR.com. This is a great place to get the information that you will need. Everybody has their own story and some are a incredible store house of facts (I am not one of them).

I hope all goes well for you.

Cooker

 

[ALCapshaw2]

GOOD MOVE Douglas !

I'd be wary of any surgeon who STARTS out with the negatives!

The Cleveland Clinic is the #1 Rated Heart Hospital so I'm sure you will be in good hands there. I've heard of Dr. Swenssen and believe it's all been positive. Do a SEARCH (click on Search at the top of this page) and type in keyword "Swenssen" to find links to posts where he is mentioned.

The 'other' Good News is that First Time Heart Surgeries are HIGHLY SUCCESSFUL, typically 98% with a 1% risk of death and 1% risk of stroke so the odds are HIGHLY in your favor, especially compared to the odds if you DID NOTHING and waited to 'see what happened next'.

We have LOTS of members who have had AVR because of BAV so you are in good company. Do a SEARCH for BAV or "bicuspid" and you will find links to those posts.

FYI, Bicuspid Aortic Valves are often the result of a 'connective tissue disorder' so it would be wise to have your Aorta checked for possible aneurisms. This may require something more than an Echocardiogram which I 'understand' cannot properly view the entire aorta. I 'think' that a CT is used for those evaluations. This has been discussed many times in past posts. Your cardiologist should also know what tests to do.

Please feel free to ask any questions as they come to mind. Welcome Aboard !

'AL Capshaw'

 

[Ross]

Hi Doug and Welcome.

While he should have saved the negatives for last, he was just being fair and honest with you. Now a days, the risk is very low, but it's a risk nonetheless.

At your age, it's difficult to decide between tissue or mechanical. The new tissue valves look promising for longevity but haven't been out long enough to really tell. Mechanical would be the most likely to avoid any more surgeries, but then you'll be taking Coumadin the rest of your life. Not that it's a bad thing, it's not. Many of us are on it and it has not affected our diets or lifestyles at all, but some people just don't want to deal with it.

See Lars and discuss it with him.

 

[DeWayne]

Heck they told me I could die from the catheterization. Of course its rare that it happens but it can. They tell you these things to protect themselves, I am sure some lawyer told them they have to.
As with any major surgery the chances of dying are present, anytime they put you under the chance exists. But as my cardiologist told me we don't dwell on the negatives, we take a positive outlook with us to the operating room. Thousands upon thousands of these operations take place every year and people come through them just fine. The healthier you are going in the better your outlook for a full recovery are.
Still I had a living will, a will and other things in place prior to surgery, to do so would have been remiss to my loved ones. But I knew that I would be fine.

As far as mechanical vs tissue everyone has an opinion. The only one that counts is yours. Weigh the pluses and minuses to your lifestyle then choose and don't think about it again. I know people will say mechanical valves will last a lifetime, but that is not always the case. So I did not consider that as part of my decision. As far as coumadin, some people are just fine on it others have problems. I went from experience of my mother who had trouble with it and my Neice who worked in the Mayo cardiac care.
Noise was a factor in my decision. Along with the fact I was also having a dacron aortic graft. I was 52 and I went tissue, knowing full well that at some time it may have to be replaced. But then again they told me I would need a valve by the time I was 30-35 and I made it to 52.
As the cardiologist said when checking in on me after surgery. "I guess we will see you again in 40 years!" lol
I was told and my research tended to confirm that 80% or more valve replacements today are being done with tissue valves. I figured there must be a good reason for that. Although if I had just had to replace the valve I more than likely would have choosen the on-x mechanical valve.

But again, make the decision YOU are comfortable with, once you do a huge weight will be lifted from your shoulders and you will be much more ready to make it to the otherside of the mountain.

 

[BackDoc]

It's called "informed consent". You have to be told of all know possible risks.

It is obvious the first surgeon you consulted with just has a more matter of fact attitude and doesn't believe in sugar coating things. It also appears as if he didn't put the risks in perspective.

Always, always, seek the 2nd and 3rd opinion in matters as important as this. Not only must you be feel comfortable with the surgeon, you must also be comfortable with the hospital. Not all hospitals are "created" equal. Any local community hospital can call itself a "heart" hospital and many do, not necessarily rightfully either.

 

[dick0236]

Hi Doug

Hi Doug

I really agree with the earlier posts and I can't offer much more. There is always a risk with ANY medical procedure. When my aortic valve was implanted I asked the surgeon for my risk of not coming off the table. He told me I had a +/- 6% chance of dying. That was in 1967. Actually, I may have come closer to dying when they did a Cath prior to the surgery. They punched a hole in my heart and I bled into the peri?????(sack around the heart). Judging by the number of "crash carts", docs and nurses that were hovering over me, I think it was pretty serious.

I have seen a lot of docs since my surgery and some have good "bedside" manners while others do not. Just the nature of the breed.



Thank God I didn't have to make a valve choice. I probably would have worried my self into an early grave by "second guessing" my choice. Read, ask questions and have frank discussions with your doctors.

 

[Phyllis]

Welcome, Douglas. Can't add anything to all the good advice you've gotten here, but you are going to one of the best hospitals for AVR and I am sure you will have a much more informative and satisfactory visit with Dr. Swennson. Best wishes to you.

 

[Marguerite53]

Welcome to this wonderful community.

Good choice seeking a second opinion and setting it up at Cleveland Clinic....they won't miss anything there.....you'll get a good looking over.

This is serious surgery, but as you can see by our member numbers, it is likely to be very successful surgery. The more you learn, the more questions you'll probably have. Use the Search button here to help sort out some things, and then please feel free to start new thread and ask whatever questions you may have.

Let us know how the second surgical consult goes!

Marguerite

 

[Lynn-D]

Aortic Valve Replacement

Aortic Valve Replacement

I feel that you are going to the best place for heart surgery, The Cleveland Clinic.

I am one of those who survived an aortic valve transplant. The valve I opted for was the bovine valve
which is supposed to last 25% longer than the pig valve. If not for the replacement I doubt I would
still be alive and active.

There are dangers with this surgery just as there are with any surgery. I found that the surgery itself
was a snap but months later I got hit with A-Fib and then months after that I almost bled to death due
to the blood thinners. It was difficult but I did come through it.

My husband also had heart surgery to replace his aortic valve last November. Three days after
surgery he died due to intestinal bleeding. I doubt that would have happened if he had been at
the Cleveland Clinic though. They have a reputation of being if not the best at least one of the
best in the world.

If a surgeon talks negatively I would get another with a more up-beat bedside manner. You have
to feel confident in your surgeon. It will help you to be optimistic which is a definite aid in preparing
you for that worrisome day. I will say a prayer for you.

Good luck,

Lynn-D

 

[temp69]

coumadin no big deal for me

coumadin no big deal for me

i have a mech valve, it's kinda strange sometimes,but so is life at 56. i would go tissue if I were you, but you might have to go back in in 10-15-18 years, so go ahead and be optimistic and get the on-x. it's great, and i feel terrific after my surgery a year ago. good luck!!!

 

[WayneGM]

Not sure how I missed your post before, but belated welcome to the VR community. Glad you found us. Sounds like the doctor flunked "Bedside Manner 101". Best wishes.

 

[hensylee]

welcome to VR. I had quad bypass; they gave me a tape to watch at home and the only thing I remember from that tape is 'you could die or have a stroke'. My, my, what a shocker. I was just fine. I was 68, in good physical condition other than the heart and came through just fine and no complications. I think they must tell us all the facts and the dying thing is just one of those unfortunate things that we can have - even with tonsil removal. Good luck and keep us posted.

 

[Praline]

My surgeon was very optimistic when I first met him. He came across as confident in his skills and very nice. He did discuss risk factors and danger but he was very positive.
But I remember the day I went to Preop and had to sign all those consent forms and having them explain all the things that could possibly go wrong. When we were done, my husband looked at me and said," Are you sure you want to do this?"

 

[njean]

Dear Douglas,

I know how frightening it is to hear that you are in need of this type of surgery but you are among hundreds of us that have undergone this type of surgery, some of us not once, but twice or more & are still here to help one another!

Doctors sometimes, have to be rudely honest which can be both good & bad. They're trying to protect themselves if something goes wrong, yet sometimes this only horrifies and scares the patient more! I know; I've been there several times myself!

Remember that the medical technology is so advanced these days, not like it was 40, 30 years ago when some of us went through our valve implants! And there were no computers, so there were no forums, no one to communicate your fears to & get some soothing advise from!

I have mitral & aortic mechanical valves (St. Jude & Cooley-Cutter) myself and have been on coumadin (warfarin) for 34 years. It may be a little annoying to have to check your blood (INR) regularly but it's a small price to pay in order to keep healthy.

Whatever valve(s) you decided to go with, I'm sure that you will do just fine! You are going to one of the most acclaimed places in the nation so that's a plus right there already!

Good luck to you & keep us posted on what's going on with you! God Bless!

 

[Susan BAV]

Same comment as Wayne, here, Douglas. Welcome to the site; glad you found it! The surgery is, as has been noted, highly survivable. Hope all goes well for you too.

 

[njean]

To SusanBAV,

I see your a "Cooley" patient too! It's always great for me to run into one of my "Hero's" patients!

I just saw Dr. Cooley about 2 months ago in Houston as a matter of fact. He told me he was 92 years old but he looks like he's in his late 70's at least! He is still the main man there; he doesn't do any surgeries any more but he's still very much involved with the goings on at St. Luke's! He's wonderful!

Good to meet you & I hope you continue to stay well! God Bless!

 

[Lynlw]

My surgeon was very optimistic when I first met him. He came across as confident in his skills and very nice. He did discuss risk factors and danger but he was very positive.
But I remember the day I went to Preop and had to sign all those consent forms and having them explain all the things that could possibly go wrong. When we were done, my husband looked at me and said," Are you sure you want to do this?"

Justin HATES the preop testing days. I can still picture the horror on his face His surgery 2 years ago when he was 17 they were explaining since his heart was fused to his sternum, they would only use the power saw to cut thru the top layers,then use strong sissors to carefully cut thru the rest of the bone.
This last surgery ended up being postponed 2 weeks, after he had all the"fun talks' to think about as he likes to call them.
Lyn

 

[Susan BAV]

To SusanBAV,

I see your a "Cooley" patient too! It's always great for me to run into one of my "Hero's" patients!

I just saw Dr. Cooley about 2 months ago in Houston as a matter of fact. He told me he was 92 years old but he looks like he's in his late 70's at least! He is still the main man there; he doesn't do any surgeries any more but he's still very much involved with the goings on at St. Luke's! He's wonderful!

Good to meet you & I hope you continue to stay well! God Bless!

You too. I haven't seen Dr. Cooley's name mentioned on this site very much. My surgery by Dr. Cooley was in Houston and I think it was a children's hospital; I was 17. That is really Cool (ey) that you got to see him again! I remember him as being very personable. My most recent heart surgeon had met him shortly before my AVR and spoke about him with enthusiasm. Post-op, I bought an old 1st ed. of Dr. Cooley's biography and sent it to Dr. Cooley to sign it for/to my second heart surgeon, Dr. Estioko. That was fun. Take care.