mechanical vs tissue aortic valve replacement

[djlfranklin]

Hello I am new here. My son is 15 years old and scehduled for aortic valve repair on july 12 with Dr leaonard Bailey at Loma Linda Universaty in California. We were asked to make a decision on a plan B IE replacement if the the repair is not possilbe. I was wondering if anyone had some pro and cons on the mecanical valve vs tissue valve. We just want to learn every thing we can before making this dession with our son. He has always been a very active kid until this last year when his Doc put him on limmited activivty and we are concerned with the blood thinning drugs. Is any one willing to share thier thoughts? I was also wondering if there any young adults or teens that maybe able to give some words of encouragement for him. He has been having a preety rough time emotionally.

 

[Tom F.]

At his age a tissue valve would not last very long, meaning multiple surgeries over his lifetime. I would suggest that if a repairof his aortic valve is not possible you at least investigate a Ross procedure.

 

[RCB]

Welcome!

Welcome!

I would like to suggest that you go the Valve selection forum and read what is there and then come back and ask a specific question. We have many extremely sharp mother's of children who have had heart surgery and will be glad to help you. They will be here shortly. Good luck and don't worry, your son will be fine- I was.

 

[Bina]

Hello New member,
I'm sorry to hear that your son is going through a hard time; this is alot to have on his shoulders.
I had found out at age 20 that I had a heart murmur which was not supposed to ever cause me any trouble....many years later, trouble. Oh well. I'm 48 and have a mechanical. I'm coping, and whatever you and your son choose to do, you will all learn to live with your decision.
My friend (at age 42)had the procedure where they switched her valves and used a donor; she lasted for 6 years then the donor valve crapped out. She now has the St. Jude mechanical aortic.
You can read back on our lively discussions on valve selection, this is a very sensitive topic.
I actually "interviewed" 2 valve surgery friends before I made my decision with my surgeon.
Best wishes.

 

[Cooker]

Hi,

Welcome to vr.com!! This is a great place to get support and information. As someone said, check out the valve selection forum.

Hoping all goes well.

Tom

 

[ALCapshaw2]

The younger the patient, the faster a Tissue Valve will wear out. In 60 year olds, the durability of a tissue valve is approaching 20 years, but is hoped to go at least a few more with modern anticalcificaition treatments. Ask the sugeons for their 'estimate' of tissue valve durability in a teenager. I would not be surprised to hear something under 10 years, at least for the low range number.

Regarding Mechanical Valves, the Standard St. Jude is coming up on 30 years in many patients and is the Gold Standard for durability.

The On-X Valve (www.onxvalves.com) shows great promise with several improvements in Fluid Dynamics, a lower propensity for clot formation, and less damage to blood cells. Contact [email protected] (or 888-339-8000 ext 265) for an extensive information package.

Catheran Burnett has been in the valve business for over a decade and is quite knowledgable. She was a Heart Surgery Nurse at Baylor (one of the pioneer Heart Hospitals) before joining the valve companies (Carbomedics, St. Jude, and now MCRI). Tell her I referred you

'AL Capshaw'

 

[Lynlw]

Hi Sharon, Glad to see you here. Also be sure to read all of Arlyss post on Bicuspid Valves and other things that can go along with it and questions to ask, Here is a great one to start with http://valvereplacement.com/forums/showthread.php?t=20489
as others said, read the post in the valve selection forum, especially the stickie
http://valvereplacement.com/forums/showthread.php?t=14330
the threads may get a little heated, since people are very passionate about valve choice,
Lyn

 

[Phyllis]

Welcome, Sharon. I put your son's surgery on the calendar for July 12th. I'm sure lots of our "heart Moms" and their kids will join in.

 

[geebee]

Welcome.

There are really a couple of issues to consider. One is how active your son will choose to be once he has recovered from sugery. Is he into heavy contact sports where he is likely to get "bashed" a lot or suffer head injuries. If not, a mechanical should work the best for him if a repair (or perhaps a Ross procedure) is not an option. As others have said, he is so young that a tissue valve will not last particularly long. Another issue could be if he is not good at taking meds. Coumadin is not a med you can "forget" to take or choose not to take.

I have been on coumadin since I was 27 and have had virtually no problems with it. However, I am very self-disciplined and home test so my life is just not disrupted.

Your son will more than likely get 30 or more years from a mechanical unless something unforeseen happens.

OHS is not an easy thing to go through so my opinion is you want to do it as few times in a lifetime as possible. I have been through three and I would have loved to have stopped at one. Each one is harder.

Only you and he will be able to determine what valve is best for his lifestyle but, hopefully, we can give you some guidelines.

 

[Ross]

At 15, in my opinion there is only one way to go. Mechanical. This would give him the greatist chance of never having another OHS, though there are no guarantees no matter what valve is chosen. Coumadin is not the big bad monster that many make it out to be. It can be inconvenient, but given what one goes through during and after surgery, inconvenience is of no concern. The hardest thing about it is finding someone who is knowledgable in dosing and managing patients. You'd think after all these years, it wouldn't be a problem, but it is to this day. This is why most of us are self dosing and self testing. Please educate yourself about Coumadin/Warfarin. See Al Lodwicks website at www.warfarinfo.com It will answer literally thousands of your questions concerning Coumadin/Warfarin. If he were in his 60's, maybe tissue would be the way to go, but tissue calcifies way too fast in young people, requiring early replacement. You do not want to go through this multiple times. Once is enough.

 

[briansmom]

Read below for some of what my son has been through. My son just turned 17. He is actually having some more tests soon to determine if he has to have a heart transplant. We are physically fairly close if you want your son to talk to my son.
We are avid off-roaders and my son has had to give up his motorcycle because of the anticoagulants, however, he now has a very tricked out Yamaha Rhino that he drives.
Loma Linda has a great reputation, so I think that you are in good hands. This is a really tough time, but it sounds like you have caught it early enough that your son will be able to live a long healthy life.

 

[Bradley White]

Hi,

I know what your son is going through. I was very active my entire childhood and adolescence, but had to have an aortic valve replacement at the age of 17 during my senior year in high school. Like your son my first choice was a repair, followed by the Ross Procedure, and then by a tissue valve. I ended up having the Ross. I played tennis in college and continued to live an active life for six years until I needed to undergo a second aortic valve procedure because my Ross Proecure failed. I went with a tissue valve (homograft) for this past surgery which was this past December. Since that surgery, just six months ago. I am fully recovered. I am playing in tennis, table tennis, and softball leagues this summer I am going to Africa in three months to conduct research. I was terrified before both my surgeries, but in the end everything turned out well. I am more active than most non-valve patients I know and am doing everything with my life I want to. Feel free to have your son shoot me an e-mail if he is interested in talking. It is not the end of the world, but in most cases just one of those bumps in the road that infuse life with the uncertaintly that makes it so beautiful and exciting.

If I was your son I would go with either the Ross or a tissue valve. Being on coumadin at that age is not something that I would want. There is a time in life where you should not be limited and I think the late teens and early twenties are that time. Despite what some will say, no one knows how long that new tissue valves last in young people. They could end up being fairly effective and it is a risk I would consider worth taking. Second and third surgeries are becoming increasingly less risky, and are in my opinion less risky than an entire life spent on blood thinners. I have had a lot of changes of heart about this issue but having been through and recovered from two surgeries now, that is my opinion. Others will have different opinions, but in the end you must figure out what is best for your son. It is an individual choice.

Best,

Brad

 

[francie12]

It's great/essential to have a backup plan, but just wanted to say good luck with that repair! Our backup at this point is the Ross. If you decide to go with that, be sure your surgeon is very experienced in it. All the best of luck to your son!

 

[Cindy]

Hi, I sent you a p.m.
Cindy

 

[heavyshot]

Hi DJL,
Welcome. I won't give you any advice on valve selection. I will however leave you with this thought. It is usually true that people who are insecure with there valve selection have a tendency to voice there opinions more strongly and defend there selection more vigerously than thoes of us who are confident in our selection and don't feel the need to defend ourselves. Think about that. Good luck.

 

[Ross]

Hi DJL,
Welcome. I won't give you any advice on valve selection. I will however leave you with this thought. It is usually true that people who are insecure with there valve selection have a tendency to voice there opinions more strongly and defend there selection more vigerously than thoes of us who are confident in our selection and don't feel the need to defend ourselves. Think about that. Good luck.

I don't think this has a thing to do with it. People see misstatements about something that can have a bearing on a persons decision and seek to correct the flawed statements. It has nothing to do with Valve security nor defense. I'm forever seeing people who are not on Coumadin describing how limited life will be on it. It's nonsense. There are very young children on Coumadin. People of all ages, so why try to point out that Coumadin is a reason not to go with Mechanical? People forget the very basics of heart surgery. It's not something to do over and over if it can be avoided, so your first chance should be centered on being your last.

 

[Randy & Robyn]

I don't think this has a thing to do with it. People see misstatements about something that can have a bearing on a persons decision and seek to correct the flawed statements. It has nothing to do with Valve security nor defense. I'm forever seeing people who are not on Coumadin describing how limited life will be on it. It's nonsense. There are very young children on Coumadin. People of all ages, so why try to point out that Coumadin is a reason not to go with Mechanical? People forget the very basics of heart surgery. It's not something to do over and over if it can be avoided, so your first chance should be centered on being your last.

You'll have to forgive him, Ross. He's an ex-postal worker, just like me. You know how we like to stir up a good fight.

 

[Ross]

You'll have to forgive him, Ross. He's an ex-postal worker, just like me. You know how we like to stir up a good fight.

Oh ok. Because you have asked, I'll think about it.

 

[heavyshot]

To ask forgiveness implies that I said something wrong. I don't need or want you to ask for forgiveness for me. I make no apologies for what I said and stand by my statement 100%.

 

[Ross]

Man have a sense of humor and quit taking things so seriously, sheesh.

And I, likewise with mine.