New to Site, Surgery Scheduled 12-18

[tjadams]

My first post... I am 28 years old. I was born with Aortic Stenosis and had repair surgery at 6 years old. Since then my heart issues have never affected my life. I was diagnosed with Strep variant endocarditis this past March and have had several bouts of antibiotics. I have had no positive cultures but continue to get lesions in my brain despite feeling great and having no fevers, chills, or other symptoms. My doctors think that I am breaking off sterile pieces of old infection and that the valve needs to be replaced despite having tolerable regurgitation. So here I am, feeling in excellent shape, able to run a 9 minute mile and I will be having valve replacement anyway. I also will be having an aortic root replaced as a result of a 5 cm dilation.

Anyhow, I am leaning toward a St. Jude Tissue valve. I have no desire to take medication the rest of my life or change my active lifestyle (basketball, racket ball, ect.). I would prefer to see if I could get an Epic installed but it might be a few months out still... I am not worried as I am just ready to get on with it and tired of new lesions popping up. I have complete trust in God and as such I won't worry about something I have no control over. Anyhow that's my story and I am glad I found this forum. Pray that I will be out by Christmas as my 3 kids, especially my 4 year old twin girls worry about Dad when he is in the hospital...

My Surgeon is Dr. Larry Schorn at Baylor.

 

[marie]

Welcome to the forum. You have a great attitude and I'm sure you will do well. Good luck I'll keep you in my prayers
Earline

 

[Ross]

Hello and welcome to the funny farm. If your slightly left of center, you'll fit right in. Be sure to get a good photo of your scar to post in the Tawdry Shirt forum.

 

[njean]

I will include you in my prayers TJ for a smooth & uneventful surgery! Your frame of mind is excellent & I have no doubt that you will come through with flying colors!

 

[Karlynn]

Wishing you the very best! Please keep us posted on how everything goes.

 

[marky]

Welcome!
You sound like you have the right Attitude!! keep us posted on your progress. Wishing you well with everything

 

[Phyllis]

Welcome, I put you on the calendar for the 18th- that's a good date- Dick had his AVR on that date, 4 years ago! You have a good attitude and lots to be thankful for and to have a speedy recovery for. Wishing you the best of surgeries and easiest of recoveries.

 

[WayneGM]

Welcome to the VR community. Glad you found us. Best wishes and good luck. I hope you're home before Christmas.

 

[Cooker]

Welcome to the zoo......wishing you a successful surgery and a smooth recovery.

 

[Praline]

Welcome! What a wonderful attitude you have! I will keep you in my prayers.

 

[Marguerite53]

Welcome to this wonderful and supportive community. Please don't be shy!!

You sound like you are in a very good emotional space about all of this and your determination, faith, and a good dose of optimism will serve you well.

Wishing you a smooth surgery and a very boring recovery.

My guess is that the aortic root problem is more a concern than the stenosis at this point. Good thing someone is keeping a watchful eye on you!

Best wishes!

Marguerite

 

[tjadams]

Thanks for the encouragment. It's nice to get it from people who have "been there done that". Of course I had valve repair 20 years ago, but I hardly remember a thing about it.

I meat with my Surgeon on Thursday so I hope to make the final valve decision then. I think with my age, I expet to have another surgery at some point even with a mechanical valve. I really believe the technology will be there to put in our own grown tissue at some point and would think even mechanical patients would opt to have such procedures if they were in good health. Plus hopefully the surgery will be less invasive then as well.

Any how, like I said I am hoping I can get the SJM Epic. We will see...

 

[ALCapshaw2]

My first post... I am 28 years old. I was born with Aortic Stenosis and had repair surgery at 6 years old. Since then my heart issues have never affected my life. I was diagnosed with Strep variant endocarditis this past March and have had several bouts of antibiotics. I have had no positive cultures but continue to get lesions in my brain despite feeling great and having no fevers, chills, or other symptoms. My doctors think that I am breaking off sterile pieces of old infection and that the valve needs to be replaced despite having tolerable regurgitation. So here I am, feeling in excellent shape, able to run a 9 minute mile and I will be having valve replacement anyway. I also will be having an aortic root replaced as a result of a 5 cm dilation.

Anyhow, I am leaning toward a St. Jude Tissue valve. I have no desire to take medication the rest of my life or change my active lifestyle (basketball, racket ball, ect.). I would prefer to see if I could get an Epic installed but it might be a few months out still... I am not worried as I am just ready to get on with it and tired of new lesions popping up. I have complete trust in God and as such I won't worry about something I have no control over. Anyhow that's my story and I am glad I found this forum. Pray that I will be out by Christmas as my 3 kids, especially my 4 year old twin girls worry about Dad when he is in the hospital...

My Surgeon is Dr. Larry Schorn at Baylor.

To make a fully informed decision, it would be wise to ask your surgeon what the expected durability of the St. Jude Tissue Valve is in a 28 year old (i.e. how long it will last). (Is it Porcine or Bovine?)

Tissue valves are known to "wear out" in time and they wear out *much faster* in younger patients, meaning you will need to have it replaced in X years (and probably replaced again if you opt for another tissue valve, etc.)

The Bovine Pericardial Valves have a track record 90% durability at close to 20 years and counting, when implanted in OLDER patients. Anti-calcification treatments are 'hoped' to extend that lifetime.

The improved Porcine valves have been around for 12 years and counting.

Risks the first time or two are pretty low, but they become more 'dicey' at number 3 or 4 or...

'AL Capshaw'

 

[tjadams]

To make a fully informed decision, it would be wise to ask your surgeon what the expected durability of the St. Jude Tissue Valve is in a 28 year old (i.e. how long it will last). (Is it Porcine or Bovine?)

Tissue valves are known to "wear out" in time and they wear out *much faster* in younger patients, meaning you will need to have it replaced in X years (and probably replaced again if you opt for another tissue valve, etc.)

The Bovine Pericardial Valves have a track record 90% durability at close to 20 years and counting, when implanted in OLDER patients. Anti-calcification treatments are 'hoped' to extend that lifetime.

The improved Porcine valves have been around for 12 years and counting.

Risks the first time or two are pretty low, but they become more 'dicey' at number 3 or 4 or...

'AL Capshaw'

Thanks for your input. All good points for which I am considering. I guess I feel that at my age and this current age of valve technology and the improvment curve that is progressing more rapidly than ever before, I am confident the technology for a permanent replacemnt with a less invassive surgery will be around when I need it. In fact, I think it is likely that patients at my age who choose mechanical valves will likely choose to have their valves replaced in 20 years to tissue grown permanent valves using less invassive robotic assisted surgeries. It may seem like "wishfull" thinking, but I beleive the odds of this beeing available are great.

 

[Mary]

Welcome, I put you on the calendar for the 18th- that's a good date- Dick had his AVR on that date, 4 years ago! You have a good attitude and lots to be thankful for and to have a speedy recovery for. Wishing you the best of surgeries and easiest of recoveries.

And it's my granddaughter's 5th birthday, so we've got you covered!

 

[Debbie]

welcome

welcome

Welcome to the site, your surgery is less than a week away, I'll pray for your quick recovery. I'm sure you'll do great, you're young and in great condition you'll have no problem. Good luck and keep us posted. Debbie

 

[Curtsmum]

Wishing you the best of luck with surgery and choosing the right valve thats best for you.

 

[westkane]

Wishing that you have an uneventful surgery and recovery, maybe you'll be home in time to see the Fat Man sneaking down the chimney. Good luck with everything.

 

[netmiff]

welcome

welcome

I am 52 and did not even consider a tissue valve because it would more than likely need replaced before the end of my life. Coumadin / warfarin may seem scary (it was to me 3 months ago) but learn a little about it, read the coumadin threads here and you may change your mind - I feel a lifetime on Coumadin is better than facing a 2nd surgery. Recovering from OHS (open heart surgery) is not that hard to do, but the shock to the body can be greater than you think, and the older you are the worse it is. Please consider carefully your choice of valve. Like a Timex, a mechanical valve just keeps on ticking.

 

[tjadams]

Surgery Bumped to the 26th & Valve Chosen

Surgery Bumped to the 26th & Valve Chosen

Moved my surgery to teh 26th to avoid Christmas diruption for the kiddos.

I am going with an Edwards bovine tissue. Turns out they have improved anti-calcification like the Epic valve, which from what I am told, is the number one reason Tissue valves fail. The valve I am getting is an improvment on the 20 year track record. They are hoping it will get folks, even young pups like me 15-25 years.

My surgeon who has been doing valve replacment for over 25 years and more specificaly using these Edwards valves for over 10 has not seen a single Edwards bovine fail that he has put in. Most reops in his experience are due to other complications and additional heart disease.

Anyhow, thats my story and I am sticking to it

Merry Christmas all!