Another new member gettin' ready for AVR

[cethom]

I am also new and have the usual concerns. To attempt to be brief:

45 years old, active, BAV with severe regurgitation and numbers indicating replacement is near.
Have a younger family to include wife, stepson and 2-year old daughter who I would like to see graduate, walk the aisle, etc. but leaning toward tissue valve due to lifestyle and work. 1st dr. in my hometown pushed me toward the On-X mechanical and wants surgery by the end of year. I went to Dr. Agnew at Mayo Clinic for another opinion. He left me with more of a "it's your choice" answer but also encouraged replacement sooner than later.

Questions include: 1. type of valve (yea, I know it's personal choice but which tissue valve's seem to show durability), 2. what makes patient good candidate for minimally invasive and/or repair, 3. is transcatheter valve replacement going to be a reality for me when next replacement needs to be done and 4. Should I spend the extra stress of going to Mayo Clinic Jacksonville, Fl. or staying with local surgeon closer to home.

I am currently trying to find the time to research the St. Jude's Trifecta and the Edwards-Carpenter tissue valves. Anyone that can help with any questions would be greatly appreciated.

 

[VegasBAV]

I'm 40, having AVR in a few months, am going with a tissue valve. I don't think tissue v. mechanical has a difference in life expectancy. It's more of a quality of life issue: mechanical valve with lifelong coumadin vs. tissue valve with need for future replacements. Future replacements of tissue valves might be able to be done by catheter without surgery 10-15 years down the road.

I think places like Cleveland and Mayo would do isolated, first time AVR surgeries as a minimally invasive surgery as a matter of course. Surgeons in other local markets might not be able to do minimally invasive procedures. Not sure.

 

[tprice54]

Welcome, but sorry for the reason you are joining us. I have an Edwards valve, 5 years now. Mi have posted quite a bit about them, but to summarize: they are hand sewn from the pericardial sac of the cow, they are not the actual aortic valve, like a pig valve is. They have the latest tissue preservation stuff, they are testing valves that will replace their valves using transcatheter method. Now, you think I am a rep for Edwards, but I was leaning towards mechanical right up to the week before surgery, when I had to make a decision. So, I believe truly the only bad choice is doing nothing.
And go to where you are most comfortable with the people, don't choose a hospital just because it is local.

 

[2legs]

Hello

Hello

I am having mine done Tuesday and I am having a pig valve. One of the reasons I went that way was I am hoping if I ever need another I will be able to get transcatheter.

 

[Boston Tiger]

I think the minimally invasive option depends on the surgeon you go with. The first guy I got an opinion from had done about 250 surgeries in his career, and he said that he always went for the full sternotomy. My second opinion was from a surgeon at one of the leading heart hospitals in Boston, who does something like 250 surgeries in a year. He was much more comfortable performing a mini-sternotomy compared to other types of minimally invasive procedures. He explained that if anything went wrong with any of those, they could easily shift to a full sternotomy, and that your healing would be much worse of they started out the other way.

The repair/replacement decision was made when he got inside my heart and saw what the valve really looked like. I had to give him my choice (natural) before I went under, just in case the repair didn't work, because they couldn't wake me up in mid-surgery to ask what to do.

The close-to-home versus Mayo decision comes down to how comfortable you are with your nearby surgeon. You want to be 100% sold on the person you choose, since that makes it easier to put your life in their hands. I was lucky enough to have a lot of high quality hospitals in my area. I was diagnosed at a top 100 heart hospital, but went in for my surgery at a top 10 hospital. I simply felt better about everything at the Brigham.

Best of luck during your time in the waiting room, since that's the toughest part. You will do great, since you have some great incentives to recover and get on with living!

 

[Mike1952]

I'm scheduled for a new aortic valve on August 10th, a week from Friday! I'm already having trouble sleeping and it seems to be in my thoughts constantly! As far as my valve choice, I was reading a lot of info about the On-X valves online and had pretty much decided to go that route. When I met with my surgeon though, he suggested the Edwards Bovine valve. (One of the nurses at the hospital told me he is known as the "valve" guy, so I do respect his opinion). I am sixty, however, so that plays into the equation. I am pretty convinced now to go with the tissue valve, even though I will likely need another down the road. I wish I could know how I would feel about that choice a month after the operation!
He says if there is nothing else wrong, he will do a "mini", but all bets are off if he finds other problems. Good luck and hope to "talk" more after our surgeries!

 

[Duffey]

Best wishes going forward. I can't add much to the other replies. I have an Edwards Pericardial that is 7 years old and holding up well. I received it when I was 53. I think it is important to chose the hospital/surgeon that offers the best replacement team possible. Valve replacement is one surgery you want to get absolutely right. It sounds like you have a little time to do more research and read posts from others who have gone through the same journey. I recommend that you do so you feel comfortable with the choices you make. I can almost guarantee that your lifespan won't be shortened by the replacement. It seems to me that medical advances have made it pretty safe surgery; post op complications seem to be a bigger issue.
Good luck!

 

[Lynlw]

Welcome, As other said, the most important thing is to feel comfortable (as much as you can be with something like this) with both your surgeon and valve choice, as far as valve choice, i mean the broader tissue/mech choice and not necessarily the brand if choosing tissue valve. FWIW the edwards perimount is probably the one used most and so there are not only quite a few member with them, but alot more information about them. the earliest perimount with the anticalcification treatment that is still quite often used, has over 30 year worth of data and lots of articles so should be esy to find info. The st Jude trifecta is relatively newer so not as much info or long term data. since you asked, my son has an Aortic Edwards perimount valve, but his is in the pulmonary position.

As to #3, of course there are no guaruntees, but right now today in 2012 having a tissue valve replaced by a percutaneous valve is a reality. My non medical ..just a Mom opinion is IF you choose a tissue valve now the chances of being a candidate for a replacement by cath and not surgery, are pretty good. Of course not everyone will be a candidate even when they become more common, unless you have a very small tissue valve, I think the chances are pretty good, that you would be able to have at least 1 percutaneous valves, and probably even a 2nd IF you ive long enough to go thru your first 2 valves.

There are alot of posts even here on the various percutaneous valve available today, if you search for Sapien (Edwards valve the only one approved in the US right now for highest risk patients) or the corevalve which is medtronics perc valve, the both are for Aortas. The melody valve is a pulmonary valve, but it has the longest history and is only used (or should be) in people who have already had a tissue pulmonary valve so its interesting to follow since all the patients have valve in valve and has been around about a dozen years, even tho its only been approved the past few years in the US.

here is a recent thread discussing Aortic percutaneous valves if that helps. http://www.valvereplacement.org/forums/showthread.php?40647-News-worth-the-read-trans-cath-valves

BTW Unless you have some unforseen problems having your vlve replaced most likely will mean you ar around to see your baby graduate high school and college and other important milestone. No matter which type of valve your choose.

 

[jjssav]

I am also new and have the usual concerns. To attempt to be brief:

45 years old, active, BAV with severe regurgitation and numbers indicating replacement is near.
Have a younger family to include wife, stepson and 2-year old daughter who I would like to see graduate, walk the aisle, etc. but leaning toward tissue valve due to lifestyle and work. 1st dr. in my hometown pushed me toward the On-X mechanical and wants surgery by the end of year. I went to Dr. Agnew at Mayo Clinic for another opinion. He left me with more of a "it's your choice" answer but also encouraged replacement sooner than later.

Questions include: 1. type of valve (yea, I know it's personal choice but which tissue valve's seem to show durability), 2. what makes patient good candidate for minimally invasive and/or repair, 3. is transcatheter valve replacement going to be a reality for me when next replacement needs to be done and 4. Should I spend the extra stress of going to Mayo Clinic Jacksonville, Fl. or staying with local surgeon closer to home.

I am currently trying to find the time to research the St. Jude's Trifecta and the Edwards-Carpenter tissue valves. Anyone that can help with any questions would be greatly appreciated.

hey good luck im in the same boat with same concerns at 54 i'm in the best shape of my life cant decide on valve type and or manufacturer and surgeon anyone who can help with their experiences and expertise would be greatly appreciated
Thank you

 

[Jkm7]

hey good luck im in the same boat with same concerns at 54 i'm in the best shape of my life cant decide on valve type and or manufacturer and surgeon anyone who can help with their experiences and expertise would be greatly appreciated
Thank you

There is so much information, so many posts...... such resources here.
You will find post after post in the post surgery forum telling all the varying experiences and learn so much simply by reading. Of course, any specific questions, ask away.

 

[Lily]

The question of travel can be important. My surgery was about three hours away in heavy traffic. That may not sound like much unless you've just had OHS, and You Really Just Want To Go Home, and then you develop some type of post-op complication (which aren't as uncommon as we'd like to think) and you really can't imagine riding in the car again for another three hours back to that dreary hospital.

But on the other hand, most of us don't want to think a surgeon is "practicing" on us. We want someone with a lot of successful experience. So to find one like that, sometimes a little travel is necessary.

But traveling a further distance can also complicate a possible temporary post-op ACT regimen, including testing and prescribing. And it can complicate post-op cardio therapy.

So anyway, the travel question can be a bit like the valve choice question. You'll have to weigh your pros and your cons. And remember that you need a reliable and flexible driver no matter what but especially if you're going to travel some distance.

Best wishes to all of you

 

[Forrest]

Cethom,
I know you already understand that selection of valve type is a very personal choice, but I always have to say my qualifier regardless. It’s because I feel the choice is so tied to the individual’s preference about what makes them feel safe, which can be either valve type. It can also be based on what your medical history is at the time of surgery and what you project it to be down the road, and what types of risks or routines you are more likely to fit with. As you already know, besides both valve types being good choices, there have been some downside stories to both. But generally most do very well with their valve choices, it’s just too hard to predict with total accuracy how things will fare.

Okay, with that said, I chose a tissue valve. My decision was regardless of whether I would be able to have a second implant done percutaneously. I had this done back in 2009, at that time about 5 years older than you are now. I believe the 40/50’s are about in the middle age ban, at over 60, tissue valves become a relatively larger alternative as you generally calcify at a lower rate than when you were in your 20/30’s. As you know, calcification of tissue valves are one of the ways they gradually wear down.

I had read about the possibility of percutaneous transcatheter implantation for when my aortic valve would need replacing, but my focus was more on other personal factors, so after long consideration I chose a tissue valve in spite of the risks of re-op and if it wore out sooner than advertised. Although my cardiologist initially tried to persuade me to choose a mechanical valve, he later recognized my choice and began to support me. My experienced surgeon was very supportive, in fact I told him that I had researched valves and would like a Carpentier-Edwards Bovine pericardial valve, I even told him that I had researched a few models that I thought would be good for me (what the heck did I know about valves?). He said that’s a good choice and was the type of tissue valve he would be using on me anyways, then he said the model he was going to implant in me was the Edwards bovine “Magna 3000 TFX”, mentioning that it had a good low profile. Now, I was so pleased that he was supportive that I had just assumed what he meant by “low profile” was that it had more room for blood to pass through (i.e., very good hemodynamics), but to this day I’m not sure if what he really meant by this was the good hemodynamics, or that it has a low mesh/rubber ring so a surgeon can have greater ease in fitting a future percutaneous valve, or whether it was because I’m a smaller man and that a smaller profile valve would fit inside my aorta the best (I don’t think he meant this last guess, it was probably one or both of my other two guesses). On my second visit with him, I had more questions, but forgot to ask about the meaning of “low profile”. I asked him how long he thought my new valve would last, he said there are no guarantees but he hopes it will last a fairly long time for me, and if so I would possibly be getting my second valve percutaneously. I told him that I heard percutaneous transcatheter aortic implants are only being used in high risk patients and could take a long while before others would be eligible, he replied that they’re getting better and better at percutaneous every year. Still no guarantees though. So my assumption is that this surgeon would not have implanted the model of valve we chose if he thought it would make it difficult to use a percutaneously implanted valve in the future. If you choose a tissue valve maybe it would be a good question to ask your surgeon if the model he/she is implanting will pose any challenges with a future percutaneous implantation.

By the way, since you mentioned the Edwards valve in your post, you can check their website for their estimates about the longevity of their valves, and I imagine competitor tissue valve companies have similar estimates on their websites. Best wishes to you, mechanical or tissue.

 

[carolinemc]

I am sure you are heard from many here about choices you can make. Just take a little time to study to make a sound choice. There are many here who may have not have had a choice. I did and went with St. Jude's and am on Warafin and doing well. You have to be comfortable and feel good about what you decide. There are many choices and decisions you can make. good luck and let us know what you ultimately decide. Hugs for today.