Longevity after Aortic Valve Replacement

[Sean L]

I was hoping for some input from you longtimers here as I am new. I am skeptical about what my doctor told me regarding my life expectancy. Two weeks ago I had a pacemaker put in, then three days later had an aortic valve replacement with complications after, they had to open me up fifteen minutes after the first surgery to stop my aorta from bleeding but where able to fix the problem. My Dr. told me that he expects me to live as long as a would have had I never had a bicuspid aortic valve.

My questions is if this could be correct? Don't get me wrong, I am all in favor of positive thinking but I am also a realist. How in the world can someone like me (35 yrs old) after going through all I have be expected to have the same life expectancy? I am also on coumidin for life.

Any input would be appreciated. Also I would love to here from people who have had their mechanical valves a long periold of time without complications...this would help me to not worry.

Thanks,

Sean L

 

[tobagotwo]

Assuming no major concurrent heart issues, and no further BAV complications (notably aneurysms), the chances are very high that your doctor is correct. You'll just have to wait and die of something else at a ripe old age.

Best wishes,

 

[Nancy]

Sean-

My husband Joe lived to be 75 years old with multiple medical problems, two mechanical valves and a pacemaker. He had had 3 heart valve surgeries (had to have a small repair too), and two lung surgeries, and so many other things, his medical history is 4 pages long in a small font. He got his first valve (aortic) in his 40s, and his second (mitral) in his 60s, and was on Coumadin for all that time.

It wasn't his valves that caused his passing, it was just the combination of all of his medical problems that decided to get critical all at once.

I would say he lived a normal lifespan considering the severity of his problems.

I would expect that you will surpass his age easily.

So, go, enjoy your life, don't waste a precious minute.

 

[Sean L]

Thanks, this gives me hope

Thanks, this gives me hope

Nancy,

Thank you so much for telling me about your husband. This gives me hope that I may live to see my two sons marry and have grandchildren. (They are only 5yr and 5 mos old now).

Sean L.

 

[Arlyss]

Hi Sean,

What everyone with BAV needs is life-long follow up. I sincerely hope that you have just had the only surgery you will need - but how will you know? You will know by being followed.

Now that you have a new valve, you should have a baseline echo. Every echo you have after this should be compared to that baseline. If there are any changes, you and your docs have a way of knowing what is happening and how significant it is compared to what you were right after surgery. This is recommended in the following paper, which describes how to follow prosthetic valves (either tissue or mechanical).

http://bicuspidfoundation.com/Evaluation_of_Prosthetic_Heart_Valves_Van_den_Brink.pdf

Your entire aorta needs to be baselined now and followed for your entire life also. Those with BAV have had wonderfully successful aortic valve replacements, only to lose their life later to an undiagnosed aortic aneurysm. There is no need to let that happen!

I don't want you to be frightened by what is in my signature line regarding my husband. Yes, he did have a complication from his mechanical valve. But the link to the paper above contains information that could have helped prevent it - it just wasn't out there at that time.

There is more knowledge now, and it continues to grow - I hope you and others reap the benefit of it.

Just don't hesitate to share information with your doctors and be sure that together you follow your valves and your aorta going forward.

Best wishes,
Arlyss

 

[Arlyss]

One of the reasons I emphasize being followed is because of what we were told 18 years ago after my husband's first valve replacement.

We were told he was "fixed" and to go on with his life. He returned to a busy life, and feeling well, he was not followed like he should have been. It is easy to avoid the doctor's office when someone is feeling well.

His aorta was not followed at all! It was a fortunate discovery that found that aneurysm 11 years later. No one was looking for it.

You can imagine that he is followed very thoroughly now. He just had an echo today.

Best wishes,
Arlyss

 

[ALCapshaw2]

One point that Nancy left out was that some Doctors told her husband Joe that they didn't think he would live past age 50. He made it to 75 in large part due to his determination to live and Nancy's vigilence in getting the care he needed when he needed it, including recognizing when some providers were simply at the end of their rope and greater expertise was needed.

Changing Horses, here is the Signature Line of member "RCB" which pretty much says it all:

The first child, the fifth patient to survive valve replacement surgery and the world's longest surviving heart valve recipient
1st AVR- Oct. 27th 1960, Dr. Kay/St. Vincent, Clev.,Kay tri-leaflet teflon prototype
2nd AVR- Feb. 1964, Dr. Kay/St. vincent, Clev., Starr-Edwards/early prototype
3rd AVR- Jan. 1982, Dr. Kay/St. Vincent, Clev. Bjork-Shiley 60 degree tilting disc
4th MVR, TV repair, ASD repair and Maze,June 2004, Dr. Pettersson/CCF, Clev., 27 mm CarboMedics
bi-leaflet valve.

Another long time valve recipient and Coumadin user is Gina (a.k.a.) GeeBee who received her mechanical valve in 1980.

See their Personal Data in the Member List section.

'AL Capshaw'

 

[Philip B]

Long Life?

Long Life?

After going through OHS and having critical parts of one's heart replaced, it's natural to have concerns about one's mortality.

Life certainly has no guarantees after valve replacement surgery, but then life itself comes with no guarantees anyway. Odds are pretty good that your life would have been shorter if you had not had the overhaul work done.

As noted in other's posts, regular monitoring of your heart and its new parts should become routine. Your cardiologist and surgeon probably feel the same way about the work that they did on you as mine feel about the work they did on me; they expect me to be around a long time. Mine claim that my new aortic valve and aorta will out last the rest of me. I hope they're right; actually, I counting on them being right.

-Philip

 

[Cooker]

My PCP and my cardiologist both agree that stress and worry end life prematurely more than anything else....I use to worry about my business and when AVR came into the picture I worried about that.....now I don't worry or stress over either....I try to live my life one day at a time with gratitude....anyway most things that I worry/stress/obsess over never happen.....If today is my last I don't want to spend it in a funk........Oh, and I plan on living to 99 1/2

 

[terryj]

My husband had his bicuspid aortic valve replaced with a mechanical valve nearly 7 years ago. He will be 59 this year and he tells everyone that asks about his surgery that he had a heart condition and now its fixed. The doctor said he should die of old age and not because of his heart valve. He goes for all his yearly cardio appts. and at the last appt. in April his valve sounded so good and his EKG was perfect so they actually skipped the echo this time. He does everthing he did before surgery and probably more.

 

[Ross]

Sean buddy, you ain't gettin out of life that easy. Your stuck here just like the rest of us for as long as God allows. Now those kids....They might be the cause of your death!

 

[Superbob]

One thing we all have to come to terms with sooner or later is that the mortality rate is 100 percent. That applies to valvers and non-valvers alike. But there is no reason, God willing, that if we take good care of ourselves after getting a VR or other heart procedure that we can't live long and happy lives. Look around here and you'll see many who are doing just that.

 

[Karlynn]

Nancy,

Thank you so much for telling me about your husband. This gives me hope that I may live to see my two sons marry and have grandchildren. (They are only 5yr and 5 mos old now).

Sean L.

Sean,
I had your same fear and same wishes over 16 years ago. My children were 5 and 7 at the time. I'm now a grandma!!! (see avatar) Yes, I was young when I became one (47, thanks to my son's college "graduation present"! ), but my dreams of seeing my kids grown and being a grandma have been realized. Now I'm shooting for seeing my Avatar's college graduation! I was in pretty bad shape prior to my MVR, so that always kind of haunts me and makes me wonder if I'll live a long life. So now I look to Dick0236. He has 40 years on his original mechanical valve. He was (I believe) 31 when he had the surgery done. So you do the math! And I also hold up Nancy's Joe in my Hall of Fame. What a fighter. And then there's RCB (who doesn't come around anymore) He's the oldest living valve replacement patient. So you have many reasons to be very "matter of fact" about why you will live to realize your most precious dreams.

Best wishes,
Karlynn

PS - I cried like a baby when my children graduated from High School, as there was a time prior to my VR that I was certain I would never live to see it.

 

[dick0236]

Nancy,

Thank you so much for telling me about your husband. This gives me hope that I may live to see my two sons marry and have grandchildren. (They are only 5yr and 5 mos old now).

Sean L.

Sean, reading your posts are like looking into a mirror for me. In 1967 I was 31, had two sons ages 6 and 8, had to be reopened to stop bleeding and my docs told me I could live a normal life afterward. I didn't believe them then but I do now. I just turned 72. I have not only seen my four grandchildren grow up, but now I have seen a great-grandson born. A lot of "normal" people of my generation have died without seeing great-grandchildren born.

I have been told by my current docs that sooner or later I will die of something, but it probably will not be my heart valve.

Do yourself a favor and, as hard as it is sometime, do not dwell on a distant future time.

 

[Nancy]

You know what Sean--

I forgot to add this. Joe had a circle of boyhood friends. He outlived all of them, surprisingly. They were the "healthy" ones, never sick at all, so everyone thought.

Some of them developed health issues even heart issues later on in life. A couple were too afraid to get needed surgery. Others, I guess just didn't get what they needed as far as care went.

Joe was under a microscope almost his whole life. He had rheumatic fever as a teenager. So he was always getting care of some sort.

Later on as his health issues became more difficult, we took no prisoners in getting the care he needed. He ended up (for the most part) with the best of the best around here taking care of him. The rest took a walk down the road to easier cases they could manage.

I think that helped him live much longer than he normally would have.

Al is right in one thing, Joe had a tremendous will to live. That one thing kept him going. It's an important thing.

 

[Superbob]

Sean,

I just wanted to chime in one more time, if I may. Thanks for starting this thread. Who among us doesn't ponder our mortality from time to time, especially when told we need heart surgery?

You have heard from some of the many inspirational people on here -- Joe (via Nancy), Dick, Karlynn, among others. They have passed along some real words of wisdom.

When I found out (after being monitored for 40 years) that my time for VR had come in my 60s, I certainly thought about the things I might not see. But praises be, I have seen my two granddaughters continue to blossom and do great things (like the 9-year-old scoring her first basket in a basketball tournament, winning the best handwriting award at her school, and even getting published in the local paper). I have been here to be thrilled by the birth of my first grandson, who just turned 2. Many joys fill my life. I see the mountains every day and the ocean is not far away. I feel great, but I take no day for granted because none of us knows how much time is left on our earthly calendar. So don't fret; look forward and enjoy every minute, every day.

One more word: Don't be intimidated by the thought of being on a particular medicine -- you mentioned Coumadin -- "for life." As many stalwarts here point out, it's manageable and not the bugaboo some make it out to be. I am not on Coumadin, but I am on a few other meds that probably will be "for life." But that's a blessing, not a curse.

Cheers,

 

[njean]

And Sean, here I am.....

I was only 24 years old when I had both my Aortic & Mitral mechanical valves implanted in 1975. I was scared to death because I had no idea I was at the verge of death! I came down w/rheumatic fever right after I graduated from high-school; I spent months in complete bed rest; at that time our family doctor & his nurse would come out to our rural home to give me penicillin shots! Wow, doctors making home visits; Now that was a long time ago my friend!

The rheumatic fever had done so much damage to my heart that my chance of survival was dismal. But, thanks to God in May/1975, I got my new valves. Then in December of that same year, I had to have the 2nd OHS to have the Mitral valve resewn because the sutures had worked themselves loose!

I lived a wonderful & active life, worked as a secretary for 20 years for my last employer, coumadin and all for 30 years+! In Mar/2006 I had to have a 3rd OHS to swap out the old Aortic valve with a brand new St. Jude valve. The massive amount of scar tissue (pannus) that I have in & around the valves, were obstructing the valve & so it had to be replaced. I am now on a "holding pattern" because the same thing has happened to the old Mitral valve & it needs to be swapped out but for the moment, the medications are keeping me in a stable situation, hopefully for as long as they can! I don't look forward to having a 4th OHS, anytime soon, believe me!

You are still a very young man with so much to live for! I have no doubt whatsoever, that you will live a long & fruitful life for many, many more years to come! Do not dwell or stress yourself out by wondering "how long am I going to live?" Just live, enjoy each & every beautiful day & praise the Lord for it!

Take care & best wishes to you!

 

[Bonzo Dog]

Sean, longevity??? Well you have as much chance of falling under the proverbial bus as the next person I suppose (so says the man who very nearly drowned four months after his first valve replacement )

To be serious, I empathise with post op feelings of vulnerability and niggling negative thoughts about lifespan. Been there in that dark place myself. Try to be positive and upbeat. You've got a great second chance. Let's be candid, it's quite easy to brush off an understandable minor post op depression with, "I am also a realist.". The reality is, as others have stated, a long and normal life is very probably your future.

 

[John & Joann]

Joann had 2 mechanical valves in 1971. She also has a pacemaker and 3 bypass. We are planning on a few more good days.

You can live normal life with normal life expectancy. Infections, additional surgeries, problems with other disease that will be difficult to treat, strokes, etc. present additional challenges. It does not preclude you from the potential to live to a normal life expectancy.

I think that Joann is the 2nd or 3rd longest on this site with 2 mechanical valves.

 

[njean]

Joann had 2 mechanical valves in 1971. She also has a pacemaker and 3 bypass. We are planning on a few more good days.

You can live normal life with normal life expectancy. Infrections, additional surgeries, problems with other disease that will be difficult to treat, strokes, etc. present additional challenges. It does not preclude you from the potential to live to a normal life expectancy.

I think that Joann is the 2nd or 3rd longest on this site with 2 mechanical valves.

You got me by 4 Joann! God bless you & many more to you!