29 Year old with aortic valve replacement - Question about life expectancy

[durhash]

Hi everyone,

I have posted on here a couple of times before, and let me say again what a great and helpful site this is. I am a 29 year old male who recently underwent aortic valve replacement with a mechanical valve on January 10. I had a bicuspid aortic valve that was diagnosed 6 months ago during a routine checkup. After a 6 month evaluation, my aortic regurgitation was moderate but was causing my left ventricle to become very large, so two different surgeons recommended going ahead and replacing the valve. I opted for the mechanical valve as the surgeon said it would "last a lifetime."

I guess my question now is just how long my lifetime will be?!?! I can hardly find anyone around my age who has had to go through this. Is there anyone out there who had to have valve replacement at a young age but has lived for a long time afterward? Naturally, I would love to live to my 70s or 80s and lately I've become afraid that I will not be able to because of this surgery or some other heart condition related to the valve, etc. I guess I'm probably also suffering from a little post op depression. If anyone has any thoughts they would be most appreciated!

 

[meghane813]

I have had these very thoughts for my baby girl, who is 8yrs old. She had her first mitral valve replacement surgery at 3months old, and a re-replacement and aortic valve replacement at 5yrs old. She will have more, but we have never got to the part of life expectancy....

 

[Randy Fecteau]

Hi Durhash. I am 54 and had my aorta valve replaced in September of this year. I can personally tell you that those thoughts run through my mind all the time so one would think that these thoughts are perfectly normal. I am not sure why we get those thoughts because they fixed our problemed valve which gives us our lives back. Im praying time will take those fears away because we are not gaurenteed anything in this world so worrying about it is taking away from enjoyiing the second chance at life. I like you hope it is a long and enjoyable life. I cant recall his name right now but he has had a mechanical valve for a very long time and I am sure he will come along and give us some great advice on this site. I love his bird. Good Luck Durhash you have come to a great site people here will certainly help you and myself.

 

[Boston Tiger]

It's natural to have thoughts like that in the aftermath of your surgery, because your body had such a major shock a month ago. But everything I've heard says that your lifespan will now be pretty much what any other 29 year old male will be. We have some OHS veterans on here who have put several decades on their replaced valves. There's no guarantee that you won't have to have OHS again for some reason, but also nothing saying you will have to either. Basically, you are back to that guessing game we all faced before we ever thought we would be candidates for OHS. The way I look at it, I'll be on bonus time at some point soon, since my expected lifespan was quite finite before my surgery. And growing up in Louisiana, I learned to appreciate lagniappe. A fitting response for today is laissez les bons temps rouler!

 

[Lindsay S]

Hello Durhash,

Your situation sounds remarkably similar to mine although I'm a bit older than you by 10 years. In 2009 my G.P detected a heart murmur that had never been heard before. Tests were run and it was determined that I had a leaky aortic valve with an enlarged aortic root but because I had no symptoms the cardiologist decided to monitor me instead of operate right away. In 2010 they ran the same tests and I was in for OHS a week later (aortic aneurysm). I was advised by my surgeon to go with a St. Jude mechanical valve because in his words the valve was designed to outlast me. I have no concerns about my choice as long as I take care of myself - keep active and maintain the anti-coagulation treatment. If it wasn't for that damn ticking that I can't get away from I would feel completely normal and would forget about the whole thing. My cardiologist does like to remind me that if the ticking goes away I'm in big trouble I don't know if anything I said will help but for the record I'm not concerned that my heart condition will shorten my life as long as I take care of myself.

 

[Ovie]

I'm 25 and have my first AVR surgery this Thursday, in fact I leave today to start my journey. Like you, since I've found out I needed surgery, I have had little to no contact with people close to my age who have gone through the same thing. I love this site and really enjoy everyone who I've come across with something to offer or share with me, there is alot of wisdom on here, that being said I do wish more younger people were around to talk to.

That being said, there are so many other things out there that can blindside you have it's game over. I know I have yet to cross over so this is all perspective, but if you live your life believing youll live to 70-80, Who's to say you won't or can't. Remember, your heart is much healthier now, I'd imagine your increase of life expectancy would only improve. Nobody is promised anything in life, so continue to live as if you would if you didn't have a mech, obviously be cautious and use common sense, and be greatful that you'll live to see 30.

I know it's all speculation, ever find the need to talk to someone younger, I'm 26 in april and if you want to PM and compare notes feel free.

Hope things are continuing to go well with your recovery.

 

[Julian]

Greetings! I'm 29 and had my operation 6 months ago when I was 28. I got a pacemaker to boot... kinda little disappointed how that turned out. Anyway from what the experts say we should see 50 years plus after surgery with a mech valve. Of course anything can happen but as long as averages play themselves out us youngsters are looking at full lives. I truly believe that for example if any of us 20 somethings need a repeat surgery within the next 20 years I say bring it on, odds are the replacement will be the last ohs we have. Even myself as a pacemaker owner has much to look forward to in the near future. Realistically pacemakers as we know them will change in the next decade to the extent that they will be implanted directly into the heart and will be a one time deal. The best is yet to come.

 

[Superman]

durhash,

Welcome to the site! I might be able to offer what you're looking for. I'm 39. I had my first AVR w/ a mechanical St. Jude aortic valve on November 21, 1990 (two days before my 18th birthday). I'm going on 22 years on the plastic this year and still going strong. I have five wonderful young children, and (when time permits) I can still exersize. I ran a 25k in 2000 and several other 5k's over the years. I've led what I feel is a normal life.

I did have to have a second OHS on October 15, 2009 but that had nothing to do with any failure of my original mechanical valve. It was due to an aortic aneurysm. I had them give me a new valve/conduit graft during that procedure. I figured as long as they were in there digging around - might as well update things.

There is one poster on here who had his valve replaced in his early thirties and now is in his 70's and still going strong. I'm sure he'll respond shortly.

 

[epstns]

Durhash,

Let me try to paraphrase what my surgeon said after my valve replacement. . . it goes something like this:

"After this surgery your life expectancy will be the same as your life would have been if you had never needed valve replacement."

In other words, the surgery pretty much erases the impact your valve would have had on your life span. Of course, that's the case if you come out of surgery without any other limiting conditions, but the vast majority of valve patients do just that. It's sort of like a cardiac "re-do."

 

[dick0236]

I guess my question now is just how long my lifetime will be?!?! I can hardly find anyone around my age who has had to go through this. Is there anyone out there who had to have valve replacement at a young age but has lived for a long time afterward? !

Funny you should ask LOL. Please see my birthday thread by Cooker. Today I am 76. I was a little older than you.....31 when I had the surgery. I am, and always have been, in good health since the surgery and continue to live an active life.....waiting now for the weather to permit golf. When I had the surgery, the averge normal life expectancy was 73, so I guess I have beaten the odds. My next goal is age 81.....my valve will be 50 years old. Knowledge is the key to a successful post op life. Stick around and continue to learn.

 

[TheGymGuy]

This is one inspiring thread.

Durhash, even though I am yet to have a surgery, thoughts like these have crossed my mind. One thing that the wonderful folks on this board have shared with us is that this fix will only extend our lives and not make them shorter. This surgery allows you to live and given all other odds the general consensus it that you should live about same duration life as a person who is like you but without the surgery. That is to say that in theory if you had a clone with normal heart and you had a fix you two would life about same duration life given that you stay healthy, take care of yourself, and keep your medications within needed range.

 

[durhash]

I'm 25 and have my first AVR surgery this Thursday, in fact I leave today to start my journey. Like you, since I've found out I needed surgery, I have had little to no contact with people close to my age who have gone through the same thing. I love this site and really enjoy everyone who I've come across with something to offer or share with me, there is alot of wisdom on here, that being said I do wish more younger people were around to talk to.

That being said, there are so many other things out there that can blindside you have it's game over. I know I have yet to cross over so this is all perspective, but if you live your life believing youll live to 70-80, Who's to say you won't or can't. Remember, your heart is much healthier now, I'd imagine your increase of life expectancy would only improve. Nobody is promised anything in life, so continue to live as if you would if you didn't have a mech, obviously be cautious and use common sense, and be greatful that you'll live to see 30.

I know it's all speculation, ever find the need to talk to someone younger, I'm 26 in april and if you want to PM and compare notes feel free.

Hope things are continuing to go well with your recovery.

"Best of luck with your surgery! I did very well with mine and I think you will too! Please let us know how it turns out!"

 

[markp66]

I asked this question many times and have read many studies online etc. First of all, don't look at anything online. It's all irrelevant because every patient is different and it is well known that many valve related events and long term prognosis is down to many patient related factors. There is more that can go wrong and statistically this probably adds up to a shorter life expectancy. However, normal life expectancy without valve replacememt is around 77 and many make it past 90 or even 100! So I don't think it is unreasonable to expect to live a long life with a replacement valve. All the bileaflet valves are designed to last 100+ years. As dick mentioned (happy birthday by the way, I couldn't find the post?) he has made it 46 years on what is now a first generation valve. And there are quite a few who have had their valves for 46+ years which was when this surgery first started. Technology has advanced over the past 50 years, warfarin management is MUCH easier and safer, new drugs are on the horizon to replace warfarin and reoperations are much safer. I'm 27 by the way and just had a mech valve. My surgeon said he expects me to live a normal life. I'm going to take his word for it.

 

[Greg a]

Funny you should ask LOL. Please see my birthday thread by Cooker. Today I am 76. I was a little older than you.....31 when I had the surgery. I am, and always have been, in good health since the surgery and continue to live an active life.....waiting now for the weather to permit golf. When I had the surgery, the averge normal life expectancy was 73, so I guess I have beaten the odds. My next goal is age 81.....my valve will be 50 years old. Knowledge is the key to a successful post op life. Stick around and continue to learn.

THAT is the post I was waiting for ....again a true legend and inspiration HAPPY BIRTHDAY

 

[sarahsunshine]

My 13yo step son just got 2 On-X valves, and a graft for his ascending aorta. His surgeons came out and said “That should last him at least 80 years!”

Once your heart is fixed, you are more likely to have your life shortened in other health areas than from the mechanical heart valve! Just be diligent in your use of blood thinners!

 

[markp66]

Greetings! I'm 29 and had my operation 6 months ago when I was 28. I got a pacemaker to boot... kinda little disappointed how that turned out. Anyway from what the experts say we should see 50 years plus after surgery with a mech valve. Of course anything can happen but as long as averages play themselves out us youngsters are looking at full lives. I truly believe that for example if any of us 20 somethings need a repeat surgery within the next 20 years I say bring it on, odds are the replacement will be the last ohs we have. Even myself as a pacemaker owner has much to look forward to in the near future. Realistically pacemakers as we know them will change in the next decade to the extent that they will be implanted directly into the heart and will be a one time deal. The best is yet to come.

Julian, did you see this. I don't have a pacemaker but if I ever do in the future then things look good
http://singularityhub.com/2011/03/0...-no-surgery-no-leads-wireless-communications/

 

[RTZdad]

Hi Durhash. My surgery is scheduled for April and I am glad to see that you are on the other side and onto your recovery. Facing this surgery has made me start thinking about my own mortality. I'm 37 and was pretty bummed to find out that I needed the surgery so early. I have a wonderful wife and an outstanding 3 year old son. There is a lot to live for! There are no guarantees for anything other than the present. As they wheel me into surgery, all that I will ask for is the chance to spend tomorrow with my family. The same request will be asked for as I go to sleep every night for the rest of my life. You have your whole life ahead of you! You have met the biggest challenge of your life and came out on the winning side. I pray for a continued recovery for you and hope that you live a long and rewarding life. Being a month out of surgery, most of these thoughts of mortality should eventually subside. You will begin to feel so good that you will hardly remember what you felt like before. Good luck!

Tom

 

[BDMc]

Had my first OHS at 29, had to go through it again last summer, but still have my 27 year old valve! Hope to be around quite a few more years, but if not the 27 have sure been worth it! I fell in love in the ER last year, + really want to stick around now! The docs say my valve looks "new"!

 

[bradvo]

Had my first OHS at 29, had to go through it again last summer, but still have my 27 year old valve! Hope to be around quite a few more years, but if not the 27 have sure been worth it! I fell in love in the ER last year, + really want to stick around now! The docs say my valve looks "new"!

Good to hear your 27 YO valve stayed put...what did ya have done ? by pass ??

 

[hetmarie]

My dad had an aortic dissection in 1983. He had a mechanical valve put in along with a graft. In 2009, he had another aneurysm and while they were doing surgery to repair that, the surgeon took a good look at his old clicker and they said it looks great and is going strong. He will be 56 in May and hopefully will be around for a long time yet! Those valves are built to last, especially the ones they are putting in now.