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Hi Nancy Jane, welcome. I keep going back and forth between having a re-operation and having to take the an ACT for the rest of my life. Keeping your sense of humor is key! I have heard good things about the book. But I have also heard he is a bit melodramatic in it.

Thanks for sharing
 
Lyn, I was under the impression the CAT Scan was in lieu of having a cath?

It depends, many people have cath pre op even if they've had a cat. Altho since your younger they might not still want the cath, it probably depends on what the surgeon wants.
 
Hey there,

So I went ahead and pushed my surgery back 2 weeks so that I can the 2nd opinion back in time. New date Tuesday Dec 13th! Now if I can just make a valve choice. lol

Thanks again for all the feedback. The support on this site is great.
 
I don't have much to add to the above, Jeff. I DID recently research the history of Johns Hopkin's first name, and it's his grandmother's maiden name, IIRC! I guess you know that the normal "rules of thumb" suggest mechanical valves for 32-year-olds, based on the short life expectancy of a tissue valve in somebody that young. And like Lyn, I've only heard of TISSUE valves being implanted via TAVI, not mech valves.

Tissue and mech valves each present their own version of "the fragile father". With tissue you might be 100% non-fragile for 10-ish years, then gradually become more and more fragile until you get a re-op -- then continued fragile during your recovery. With mech you might just be popping some pills every morning and sticking your finger and reading a number once a week. I'm happy with my choice of a tissue valve, but I was 65, so the rules of thumb and the statistics were way different.

For mechanical, the leading contenders seem to be the much-touted On-X valve (which helps support this site with the banner ad at the top of the page -- Thanks, On-X!) and the Medronics/ATS "Open Pivot" valve. The ATS seems to be the quietest valve in most studies, and their web-site has some very interesting excerpts from some other studies indicating superiority over other valves. The On-X valves are undergoing tests to see if their special carbon and design features can translate into acceptable results with lower anti-coagulation, and they also have design features designed to combat pannus ingrowth, which is one problem that can lead to re-ops for mech-valve people. Both sites make very interesting reading -- and we also had a very interesting and lively exchange here a few months ago, about the relative merits of those two valves. (Search for "the truth is out there" for part of that exchange.)

Good luck with your decision!
 
And like Lyn, I've only heard of TISSUE valves being implanted via TAVI, not mech valves.

Same here. However, my surgeon did mention a hybrid mechanical TAVI option that may exist one day in the future, likely at least a decade (or more) off in his words. It was almost mythical the way he described it. Some sort of "micro mesh nano technology" that native tissue will overgrow and engage, as well as eliminate the need for ACT. I never questioned him further about it, and in trying to research, I haven't really turned up anything. So, I'm assuming it's only in the research and development stages, nowhere near even trials.

I have seen a few articles about nano technology and mechanical valves, but it dealt with standard valves, not TAVI. Also, as I posted in the ValveXchange thread earlier today, that "exchangeable" tissue valve technology is being developed for TAVI also - called "Vanguard". Finally, St. Jude's "Portico" TAVI device, yet to hit trials, is touted as the first to allow repositioning or retrieval, obviously another important advancement.

Jeff - Hope I'm not confusing matters, just wanted to add to that particular discussion. By the way, I was 35 with a 2 1/2 year old and baby on the way when I had my surgery. Everything worked out just fine for me and my wife and kids. Best wishes.
 
I don't have much to add to the above, Jeff. I DID recently research the history of Johns Hopkin's first name, and it's his grandmother's maiden name, IIRC! I guess you know that the normal "rules of thumb" suggest mechanical valves for 32-year-olds, based on the short life expectancy of a tissue valve in somebody that young. And like Lyn, I've only heard of TISSUE valves being implanted via TAVI, not mech valves.

Tissue and mech valves each present their own version of "the fragile father". With tissue you might be 100% non-fragile for 10-ish years, then gradually become more and more fragile until you get a re-op -- then continued fragile during your recovery. With mech you might just be popping some pills every morning and sticking your finger and reading a number once a week. I'm happy with my choice of a tissue valve, but I was 65, so the rules of thumb and the statistics were way different.

For mechanical, the leading contenders seem to be the much-touted On-X valve (which helps support this site with the banner ad at the top of the page -- Thanks, On-X!) and the Medronics/ATS "Open Pivot" valve. The ATS seems to be the quietest valve in most studies, and their web-site has some very interesting excerpts from some other studies indicating superiority over other valves. The On-X valves are undergoing tests to see if their special carbon and design features can translate into acceptable results with lower anti-coagulation, and they also have design features designed to combat pannus ingrowth, which is one problem that can lead to re-ops for mech-valve people. Both sites make very interesting reading -- and we also had a very interesting and lively exchange here a few months ago, about the relative merits of those two valves. (Search for "the truth is out there" for part of that exchange.)

Good luck with your decision!

Thanks Norm. Very interesting on Johns being his grandmother's maiden name. I am truly split in my thinking. I have had a history of nose bleeds throughout my life and I'm scared that those will return with an ACT treatment. But in the same breath the possibility of not having another surgery is very appealing.
 
Same here. However, my surgeon did mention a hybrid mechanical TAVI option that may exist one day in the future, likely at least a decade (or more) off in his words. It was almost mythical the way he described it. Some sort of "micro mesh nano technology" that native tissue will overgrow and engage, as well as eliminate the need for ACT. I never questioned him further about it, and in trying to research, I haven't really turned up anything. So, I'm assuming it's only in the research and development stages, nowhere near even trials.

I have seen a few articles about nano technology and mechanical valves, but it dealt with standard valves, not TAVI. Also, as I posted in the ValveXchange thread earlier today, that "exchangeable" tissue valve technology is being developed for TAVI also - called "Vanguard". Finally, St. Jude's "Portico" TAVI device, yet to hit trials, is touted as the first to allow repositioning or retrieval, obviously another important advancement.

Jeff - Hope I'm not confusing matters, just wanted to add to that particular discussion. By the way, I was 35 with a 2 1/2 year old and baby on the way when I had my surgery. Everything worked out just fine for me and my wife and kids. Best wishes.

EL- It seems we have a lot in common. What were some of your reasons for going with the tissue pericardial valve? How was your recovery? Sorry for all the questions...
 
Hey there,

So I went ahead and pushed my surgery back 2 weeks so that I can the 2nd opinion back in time. New date Tuesday Dec 13th! Now if I can just make a valve choice. lol

Thanks again for all the feedback. The support on this site is great.

Hey Jeff,
I've put you on the VR calendar for Dec. 13, let me know if the date changes and feel free to start a thread
in the Pre-Surgery Forum section where it will be seen by others in your situation.
:)
 
Same here. However, my surgeon did mention a hybrid mechanical TAVI option that may exist one day in the future, likely at least a decade (or more) off in his words. It was almost mythical the way he described it. Some sort of "micro mesh nano technology" that native tissue will overgrow and engage, as well as eliminate the need for ACT. I never questioned him further about it, and in trying to research, I haven't really turned up anything. So, I'm assuming it's only in the research and development stages, nowhere near even trials.

I have seen a few articles about nano technology and mechanical valves, but it dealt with standard valves, not TAVI. Also, as I posted in the ValveXchange thread earlier today, that "exchangeable" tissue valve technology is being developed for TAVI also - called "Vanguard". Finally, St. Jude's "Portico" TAVI device, yet to hit trials, is touted as the first to allow repositioning or retrieval, obviously another important advancement.

Jeff - Hope I'm not confusing matters, just wanted to add to that particular discussion. By the way, I was 35 with a 2 1/2 year old and baby on the way when I had my surgery. Everything worked out just fine for me and my wife and kids. Best wishes.

They also have been worring on growing tissue valves from the person's own cells. That hopefully will last forever or a very long time, and even better for children they should grow with them. They kind of are doing what you are describing but the cells will grow on a scaffold system they strip old cells from. They are talking about the possibility of being able to place those by cath.. Its a retty exciting time with so many things being worked on.

Tissue engineered valves/conduits has always been my main hope for Justin. Some parents actually stated raising money for one of the Doctors working on them at Boston Childrens so hopefully they will be able to be an option for their daughter.
 
EL- It seems we have a lot in common. What were some of your reasons for going with the tissue pericardial valve? How was your recovery? Sorry for all the questions...

Jeff - I don't encourage or discourage in either direction, both valve choices are excellent options. Unfortunately, there is no "absolute truth" in hiding that you haven't found yet. After all, if there were, world class surgeons wouldn't be asking their patients to decide. So, as you've probably already figured out, the valve selection process can be both a blessing and a curse.

I have taken the road less traveled for our particular age group, at least in the non child bearing sub-group anyway. Truth be told, I was firmly on the fence throughout my 4 pre-surgery weeks. I agonized over every conceivable variable, changed my mind daily, even hourly, and at times, wondered if maybe I'd be better off flipping a coin...

Sound medical reasoning exists for either choice at nearly any age, depending on individual circumstances and perspectives. At the end of the day, the unique risks inherent with each choice generally balance out over time, long term survival is essentially identical for both. The "textbook" recommendation for an early 30's male is firmly mechanical. At the same time, more and more of the leading surgeons and surgical centers are now recommending tissue at increasingly younger ages. So, who's right? Guess what, nobody knows. Only time will tell.

Sadly, you could ask 5 different surgeons how long a tissue valve will last you, and you might get 5 different answers. If you're into exhaustive research like me, and hoping for proven studies of currently used valves in the 30 year old age group, I'm sorry to report no help there either. By the time good evidence exists on any given valve, particularly tissue, a supposedly better but unproven one comes out, so back to square one.

Ultimately, medicine only takes you so far. I think personal perspective has to enter in. Glass half full or half empty, plan for the best or plan for the worst, etc.

My best recommendation is to research and ask as many questions as you possibly can, even play devil's advocate to everything your surgeon says. Certainly don't apologize for asking questions here either. If you haven't already found the sticky thread in the valve selection forum, that's a very good overview of the issues. For general medical reference, you might also want to check out some of the relevant practice guidelines. Although the American College of Cardiology valve disease guidelines are almost laughably succinct on the issue. The European Society of Cardiology has a somewhat better clinical analysis (page 253 which is page 24 of the pdf): http://www.escardio.org/guidelines-surveys/esc-guidelines/GuidelinesDocuments/guidelines-VHD-FT.pdf

I'm sorry I'm not being more specific to your question and my situation, but I will sum it up like this: my own medical profile had a few factors that interact more favorably long term with tissue and no ACT, and factoring in as well my general outlook on life ahead, the decision just sort of "hit me" one day. I knew what was right for me, I knew what was best, and never a second thought. No regrets.

Best wishes to you in this tough process. In some way's it's the hardest part. I didn't decide until 3 days before my surgery, but spent those last 3 days completely at ease, relaxing with my family.

My recovery was overall very smooth and quick. The need for a pacemaker slowed up the first week, but as time went on, I quickly made up ground. I posted a few months ago about how it was actually the best year of my life: http://www.valvereplacement.org/forums/showthread.php?38916-The-Best-Year-of-my-Life&highlight=best+year+of+my+life There usually are benefits to young age, and I hope the same will prove out for you. Good luck and keep asking questions!
 
Jeff - I don't encourage or discourage in either direction, both valve choices are excellent options. Unfortunately, there is no "absolute truth" in hiding that you haven't found yet. After all, if there were, world class surgeons wouldn't be asking their patients to decide. So, as you've probably already figured out, the valve selection process can be both a blessing and a curse.

I have taken the road less traveled for our particular age group, at least in the non child bearing sub-group anyway. Truth be told, I was firmly on the fence throughout my 4 pre-surgery weeks. I agonized over every conceivable variable, changed my mind daily, even hourly, and at times, wondered if maybe I'd be better off flipping a coin...

Sound medical reasoning exists for either choice at nearly any age, depending on individual circumstances and perspectives. At the end of the day, the unique risks inherent with each choice generally balance out over time, long term survival is essentially identical for both. The "textbook" recommendation for an early 30's male is firmly mechanical. At the same time, more and more of the leading surgeons and surgical centers are now recommending tissue at increasingly younger ages. So, who's right? Guess what, nobody knows. Only time will tell.

Sadly, you could ask 5 different surgeons how long a tissue valve will last you, and you might get 5 different answers. If you're into exhaustive research like me, and hoping for proven studies of currently used valves in the 30 year old age group, I'm sorry to report no help there either. By the time good evidence exists on any given valve, particularly tissue, a supposedly better but unproven one comes out, so back to square one.

Ultimately, medicine only takes you so far. I think personal perspective has to enter in. Glass half full or half empty, plan for the best or plan for the worst, etc.

My best recommendation is to research and ask as many questions as you possibly can, even play devil's advocate to everything your surgeon says. Certainly don't apologize for asking questions here either. If you haven't already found the sticky thread in the valve selection forum, that's a very good overview of the issues. For general medical reference, you might also want to check out some of the relevant practice guidelines. Although the American College of Cardiology valve disease guidelines are almost laughably succinct on the issue. The European Society of Cardiology has a somewhat better clinical analysis (page 253 which is page 24 of the pdf): http://www.escardio.org/guidelines-surveys/esc-guidelines/GuidelinesDocuments/guidelines-VHD-FT.pdf

I'm sorry I'm not being more specific to your question and my situation, but I will sum it up like this: my own medical profile had a few factors that interact more favorably long term with tissue and no ACT, and factoring in as well my general outlook on life ahead, the decision just sort of "hit me" one day. I knew what was right for me, I knew what was best, and never a second thought. No regrets.

Best wishes to you in this tough process. In some way's it's the hardest part. I didn't decide until 3 days before my surgery, but spent those last 3 days completely at ease, relaxing with my family.

My recovery was overall very smooth and quick. The need for a pacemaker slowed up the first week, but as time went on, I quickly made up ground. I posted a few months ago about how it was actually the best year of my life: http://www.valvereplacement.org/forums/showthread.php?38916-The-Best-Year-of-my-Life&highlight=best+year+of+my+life There usually are benefits to young age, and I hope the same will prove out for you. Good luck and keep asking questions!

EL~ Thanks for the response. I just read your 1 year anniversary post and found it very inspirational. My wife is early in her 2nd trimester and I can't wait to see my new baby. I just want to be fully recovered by then. As far as valve selection I go back and forth and today I am leaning toward a tissue valve. But tomorrow might be mechanical. Who knows?

Thanks for all the support and information.
 
I just read your 1 year anniversary post and found it very inspirational. My wife is early in her 2nd trimester and I can't wait to see my new baby. I just want to be fully recovered by then.

We'll all be expecting an inspiring story of your own in about 13 months. You know, your post surgery lifting restrictions should be gone in plenty of time for the baby, so don't plan on being able to use this surgery to get you out of any diaper changes!
 
I have had a history of nose bleeds throughout my life and I'm scared that those will return with an ACT treatment.

You know, I remember another member, Julian - I think, commented in a thread a few months ago how informative it would be if patients were able to "test drive" ACT before surgery. In theory, it's a great idea, in practice, I'm sure not so easy. But your mention of the nose bleeds made me think back to that. I don't have any idea, it may unfortunately be one of those things there's only one way to find out for sure. But it might be worth starting another thread just on that topic, to see if any of the folks here with lots of ACT experience ever encountered a change in nose bleeds.
 
We'll all be expecting an inspiring story of your own in about 13 months. You know, your post surgery lifting restrictions should be gone in plenty of time for the baby, so don't plan on being able to use this surgery to get you out of any diaper changes!

I certainly will.

Too bad about the diaper duty excuse...
 
Hey guys,

So I am a little frustrated today. I heard back from CC and they basically told me what I already knew. But they would love to discuss it in person. Before I sent my files I was told that the surgeon would be available for a phone consult. Now I am told that the surgeon would not take calls. In my letter that I sent to them with all of my files I asked for their opinion on valve types and how they would do it. I got neither of those questions answered.

So now I might drive up there this week (if they can get me in). Or just give up on the 2nd opinion and focus on my Dec 13th surgery date at Hopkins. I really just want to get this over with, and I feel like I just wasted 2 weeks.

Jeff
 
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