Bovine Vs. Porcine

[Enetric]

Hello Everyone!

I have received so many nice private emails so far. Thank you for taking the time to help out someone who is facing some of the same difficult decisions you have made or are about to make.

I have posted here and there and gotten some great feed back as well.

I will be 37 on 2/15. My AVR is set for 2/21 although I have not 100% committed to my valve choice yet. Most of the doctors I have spoken with say go mech mostly because of my age.

I am however leaning tissue. I just keep thinking if I can get 10-15 years, get into my 50's that the options for my next AVR will be better. Better options for ACT? Or a permanent tissue valve? Or a mech that is a true valve for life with no ACT. It seems like they are all being worked on.

In speaking with Bob (Tobogotwo) he gave me some great feedback on Bovine Vs. Porcine for replacing a BAV.

I wanted to ask if anyone else has some things they could share about the tissue valve choices. Which way you went, or would go? Anyone who has had a re-op and how long the first tissue lasted?

Any feedback at all for me to consider that can help me to commit to my valve choice.

Thanks again!

-Eric

 

[Mary]

Enteric,
I didn't really make a choice. I went with what my surgeon was comfortable in using, and that happened to be a Magna Perimount 3000. Other members on the site have pushed for a specific tissue valve and received it.

 

[rbl1999]

Hi, Eric, best wishes for your upcoming surgery. I went with a bovine tissue valve, it is the Edwards Carpentier. My decision was easier than yours as I am 59, and this is what my surgeon recommended.. I was leaning towards tissue anyhow as I did not want to deal with Coumadin, but, as you can see by reading posts on the forum, most people on coumadin do not seem to have many problems. You are young so the decision is a bit more difficult.. Rose

 

[Marguerite53]

Hello! I just had a second opinion visit with a surgeon. I learned something I did not know (or didn't intellectually glean from the knowledge I already had....being blonde, and all) and am just passing it along to you for info purposes.

Surgeon's do not like to go "through" a heart which has had bypass surgery to replace a valve. Valves are on the inside. Bypass grafts are on the outside and are very delicate and intricate. SO, all this means, is, being as young as you are.......is there any known coronary artery disease in your family? Has anyone in your immediate famliy required bypass surgery? At what age? Again, this would only count if there were problems at a young age, and they needed to give you a bypass before your second replacement valve. Not very likely, but wanted to throw that your way anyway. I'm 52, presurgery. My father had bypass surgery at 75. I want tissue. If my angiogram comes out clean, I will go tissue. If they have to go in and do a bypass AND a valve replacement, I will choose to go mechanical so that they never have to mess with going through the bypass stuff (presumably, tho not guaranteed, of course) to give me a second valve replacement.

I hope there will be more responses. I, too, am appreciating info on the various tissue valves.

Good luck!

Marguerite

 

[momshell7]

Hi, My husband had his aortic valve replace in October of 2004. He was 37 at the time. He has a stentless porcine valve. I dont' remeber the exact name. His surgeon and cardiologist both recommended the porcine valve. They called the valve that he receive the Mercedes of valves,not the Cadillace, but the Mercede, that is what his surgeon like to say. My husband's id on here is twoboysdad. He would be happy to answer any questions you may have. Please feel free to email him, as that is the best way to get in touch with him.

Good luck in your decision.

Michelle

 

[Chuck_S]

I did the Medtronic Freestyle

I did the Medtronic Freestyle

I have not posted is quite a while, I feel a bit guilty because everyone was so helpful to me.

Surgery was 7/13/05, so about 6 months now. My surgery went very well, I am back to playing tennis and pretty much anything else I want. Actually I was playing tennis in 4 months.

What valve to choose is a toughy, I am happy with my decision. After surgery I learned that I had so Miozomatus (sure I killed the spelling) in my tissue. This could mean that a valve that lasts forever, may not last forever in me. BTW I turned 38 right last August.

Good luck, feel free to email me with this boards software if you like.

ChuckS

 

[Mary]

Hello! I just had a second opinion visit with a surgeon. I learned something I did not know (or didn't intellectually glean from the knowledge I already had....being blonde, and all) and am just passing it along to you for info purposes.

Surgeon's do not like to go "through" a heart which has had bypass surgery to replace a valve. Valves are on the inside. Bypass grafts are on the outside and are very delicate and intricate. SO, all this means, is, being as young as you are.......is there any known coronary artery disease in your family? Has anyone in your immediate famliy required bypass surgery? At what age? Again, this would only count if there were problems at a young age, and they needed to give you a bypass before your second replacement valve. Not very likely, but wanted to throw that your way anyway. I'm 52, presurgery. My father had bypass surgery at 75. I want tissue. If my angiogram comes out clean, I will go tissue. If they have to go in and do a bypass AND a valve replacement, I will choose to go mechanical so that they never have to mess with going through the bypass stuff (presumably, tho not guaranteed, of course) to give me a second valve replacement.

I hope there will be more responses. I, too, am appreciating info on the various tissue valves.

Good luck!

Marguerite

Marguerite,
I wanted to answer your post in case it might influence Enetric's decision. I have searched and asked, and can't find why your surgeon gave you that advice. Other members have had tissue valves and bypasses (Johnny_V is one I recall).
I actually PM'd Tobagotwo and asked his opinion, because I wanted to make sure before I replied to your post. He said, and maybe he will elaborate later, that he's never heard it or read it either.
I'm unsure why your surgeon stated what he did, but maybe you should take it with a grain of salt.
Mary

 

[tobagotwo]

Chuck, they were probably referring to myxomatous tissue, which is tissue that can become fibrous or weakened. It is likely related to a BAV syndrome. In my opinion, you have the best product of its type available, and I'm glad it's working out for you.

Margeurite, I believe that is one surgeon's opinion. There are many who have passed through VR.com with CABG (bypasses) and a tissue valve. It seems plain to me that his opinion is not widely shared. Certainly, if you feel more comfortable with a mechanical valve, you should go with it. It's absolutely critical that you feel confident in your decision.

However, if I had had bypasses, I would still have chosen as I did. My surgeon didn't know if I needed a bypass when he and I discussed the choice - and most others don't either. If it were a major factor, surgeons would decide afterwards, or tell us they won't discuss it until after the cath. But that doesn't happen enough to have been brought up here before.

Best wishes,

 

[Enetric]

All set for the 21st!

All set for the 21st!

Hi Everyone,

I have not posted most of this week, taking some time out to enjoy my Birthday on the 15th, Valentines Day with the wife on the 14th, and Presurgical testing om the 16th.

I am all set now for first thing in the morning on the 21st.

After a lot of thought as well as great feedback from so many people I decided to go with a Carpentier Edwards Perimount Bovine valve.

Yeah, nervous about signing up for a future re-op...but I just decided to use something Tobogo2 (Bob) had to say in the reference section as the tie breaker. Decide what type of person you are. Deal with a problem slowly over time...or big decisions all at once.

I am the later. After doing all the research looking for a statistical edge...I just decided...this was the way to go.

I'm also a big technology person. I believe strongly in there will be something better tomorrow as a rule of thumb. In fact...I am the sort of guy who gets a new gadget (cell phone, or VCR or whatever) and it will have every bell and whistle you could want. I am ecstatic when I get it. A month later...something better come out and I am already wishing I had it!!! I don't know why I think like that...but realizing I am that type of person...helped me believe in my decision to go tissue. To believe that my options will be better next time.

I wish there was some way to have a trial run where you could say... "hey this wasn't so bad". Or, "hell no I'M NOT doing that again!" But there isn't.

I am ready to get this done. Of course nervous as hell...but hey who isn't right?

Thanks again to everyone who helped me out around here. This is an amazing site. I want to especially thank Bob for so many insightful emails, and to Mary for her nurturing instincts.

All the best,

-Eric

 

[Phyllis]

Erice,
Glad you have made your choice and that you are happy with it. Dick also wanted the newest and the best and after much research went with the Edwards, Magna bovine valve. He also took into consideration a re-op even though he was 70 at the time of the AVR (his father is 101 and still going strong) and hopes that newer and better methods of AVR will be in all our futures. Good luck and best wishes. You can always depend on Bob for insightful posts- we all do! Please be sure to have someone post for you as you know how we worry.

 

[Ross]

Hello Everyone!

I have received so many nice private emails so far. Thank you for taking the time to help out someone who is facing some of the same difficult decisions you have made or are about to make.

-Eric

Now what's up with this? I thought that's what the open forum was for?

Guess we might as well shut the forum down then. No use in having it if info isnt' in the open for all to benefit from.

 

[RCB]

Hello! I just had a second opinion visit with a surgeon. I learned something I did not know (or didn't intellectually glean from the knowledge I already had....being blonde, and all) and am just passing it along to you for info purposes.

Surgeon's do not like to go "through" a heart which has had bypass surgery to replace a valve. Valves are on the inside. Bypass grafts are on the outside and are very delicate and intricate. SO, all this means, is, being as young as you are.......is there any known coronary artery disease in your family? Has anyone in your immediate famliy required bypass surgery? At what age? Again, this would only count if there were problems at a young age, and they needed to give you a bypass before your second replacement valve. Not very likely, but wanted to throw that your way anyway. I'm 52, presurgery. My father had bypass surgery at 75. I want tissue. If my angiogram comes out clean, I will go tissue. If they have to go in and do a bypass AND a valve replacement, I will choose to go mechanical so that they never have to mess with going through the bypass stuff (presumably, tho not guaranteed, of course) to give me a second valve replacement.

I hope there will be more responses. I, too, am appreciating info on the various tissue valves.

Good luck!

Marguerite

Margeurite, please don't be made to feel that your surgeon is alone in his thinking. Although, I don't disagree that "many who have passed through VR.com with CABG (bypasses) and a tissue valve.", the point I feel your surgeon was trying to make was
about future reoperation problems with bypass.

Let me give you my experience, someone who actually had three reoperations and had this discussion with several surgeons. A brief history first, as you can tell by my signature,
I have had three aortic surgeries. First two were close together, without much scar tissue, but the third was “deucey!” When I consulted with my surgical team for my 4th surgery, you could see the growing concern in their faces for explanting my aortic valve, after I told them of my need for a bypass in my third operation. You see I have always been blessed with clean arteries, but the scar tissue around my aortic valve was so bad in the 3rd surgery being 15 years apart, that in removing it to get to the valve they destroyed two of the main arteries supplying my LV. Since, they didn’t have a record of this surgery 22 years ago; they asked me if I had leg scars. I pointed to two 6 inch long, aging scars on my inside thigh. This was enough for my surgical teem to place a call to a cross town hospital to see if they would dig out the surgical notes from 22 years ago. Needless to say, they rescheduled my surgery for four
days later. When it was learned that because of the holiday and custody problems, they could
not retrieve the surgery notes from 22 years ago and problems with the left heart cath.,
they decided that the bypasses made it too dangerous to replace an old, but functioning, valve. That is why they took the unusually step of not replacing my old aortic valve “while they were in there”. You see the plumbing in most hearts is like houses- they all have about the same, but they are install in different places. Additional, it should be noted, EVEN PATIENTS WITH PERFECTLY CLEAR ARTERIES MAY HAVE TO HAVE CABG IF THEY HAVE SCAR TISSUE AROUND THE HEART VALVE! Apparently your doctor is forward think enough to be considering the real situation that I faced two years ago. Oh in case anyone is wondering who them (my surgical team) is, (the ones who had to actually deal with the real life situation that your surgeon had predicted) I will gladly share their names and hospital because I so proud of them:
First team, Drs. Lytle, Gilinov and Grimm.
Final team, Drs. Pettersson, Gilinov and Grimm
All members of the Cleveland Clinic Cardiology Center

There may be other opinions, but I would say your surgeon is not alone, but in pretty good company!

 

[Marguerite53]

Now what's up with this? I thought that's what the open forum was for?

Guess we might as well shut the forum down then. No use in having it if info isnt' in the open for all to benefit from.

Well, that's why I posted what I did. I'm glad that RCB came along to give us a real example of this situation. I added it to the mix for just that reason, to let others respond and clarify. I LOVE that we can do this here.

On the other hand, Ross, those of us who are still waiting and have a zillion questions sometimes need/want/appreciate the personal attention that the PM and back and forth email can offer. I think it's a wonderful option given the large population we have. So many people here have found special connections. It is a gift to be able to exercise your intuition about a connection privately. Go easy. Everyone has their own threshhold of what they are willing to exchange with perfect strangers. Many of you have met at the reunions. Many of us will never have that opportunity.

Now. that said (I seem to say that alot these days ) I think that if any information comes up in these PM's and emails, it would be truly beneficial to the group if they were shared on the open forum!!

Eric. I will be on an airplane escaping for some warm weather and sunshine on the 21st. I promise to look out my window and send my best wishes out to you! You'll be great!

Marguerite

 

[Ross]

Well, that's why I posted what I did. I'm glad that RCB came along to give us a real example of this situation. I added it to the mix for just that reason, to let others respond and clarify. I LOVE that we can do this here.

On the other hand, Ross, those of us who are still waiting and have a zillion questions sometimes need/want/appreciate the personal attention that the PM and back and forth email can offer. I think it's a wonderful option given the large population we have. So many people here have found special connections. It is a gift to be able to exercise your intuition about a connection privately. Go easy. Everyone has their own threshhold of what they are willing to exchange with perfect strangers. Many of you have met at the reunions. Many of us will never have that opportunity.

Now. that said (I seem to say that alot these days ) I think that if any information comes up in these PM's and emails, it would be truly beneficial to the group if they were shared on the open forum!!

Eric. I will be on an airplane escaping for some warm weather and sunshine on the 21st. I promise to look out my window and send my best wishes out to you! You'll be great!

Marguerite

This is fine and dandy to a point. Squabbles go to PM's, but I would certainly hope that information that should have been posted for all, was posted. Were all the views given for each valve choice? This could become a very disturbing trend.

 

[RCB]

PMs vs open forums

PMs vs open forums

Everyone has their own threshhold of what they are willing to exchange with perfect strangers.
Marguerite

The danger in that thinking is VR.com is supposed to be about helping people cope with OHS. That can take many forms, but is simply divided
in to two categories: emotional and the other factual. We give both freely here on many different forums. I have no problem with people giving emotional or factual support by PM. The danger of using PMs for factual support is that a person can state anything and not have it "peer reviewed." The PM can contain factual errors and/or errors of omissions (leaving out important details). When a statement is made on a forum for everyone to see, you can bet that if an error is made, someone will challenge it. At least that way
you have both sides.

My point is when it comes to factual information, one should really be skeptical of any statement made by anyone because of "their own threshhold of what they are willing to exchange with perfect strangers." After all, isn't that exactly why we ask doctors for second opinions? The forums provide that, PMs don't.

That's my opinion, for what its worth. Now it can be "peer reviewed" by all that read this- if I had sent a PM, that wouldn't happen!

 

[geebee]

I cannot imagine that there is much the regular posters here would not share in a public thread. You just have to read how personal some of the threads do become in the exchanging of experiences.
Granted, someone might choose to offer a last name or an address or phone number or such contact information that we wouldn't want on an open forum.
When it comes to medical information, ideas, opinions, etc. I would hesitate to accept as gospel information that is not open to review. I would truly hope this is not the sharing that is going on behind the PM. There would be too much opportunity to only get one side of the story and make a decision not based on all the facts.
Although I realize some threads (especially those on valve choices) can get pretty heated but, at least, all the information is there to see and discuss.

 

[Mary]

This thread is titled, Bovine Vs. Porcine, not the pros and cons of private messages.
We could ask Eric his intent, but I believe he's probably too busy getting ready for surgery to worry about it!
Good luck, Eric!

 

[Ross]

Doesn't matter what the title of the thread is with the information that has been brought into the light. The big question is, is this how it's going to be from now on? If so, we might as well shut the doors and move on to other things in life.

 

[Mary]

Doesn't matter what the title of the thread is with the information that has been brought into the light. The big question is, is this how it's going to be from now on? If so, we might as well shut the doors and move on to other things in life.

Ross,
What information was brought to light?
Eric said he had received many nice emails. So What?
You've read the one I sent him. You know it was strictly a "welcome to VR and don't let anyone's cranky attitude get you down."

If you're addressing someone else's PM, then maybe you should consider asking them directly or grill Enetric for more information. Of course, I don't know what type of precedent that would set. Suddenly everything we post is subject to intense scrutiny to see if we're revealing all our thoughts and knowledge on a subject? Would the same apply to private messages? And who would be reading them to make that judgment?

IMHO, this whole matter needs to be put to rest, with no more revisiting.

 

[Lynlw]

I agree with Mary. I don't see anything wrong w/ Private messages or emails. sometimes it helps just to talk to someone w/out putting it on the forum, and that's all I took from his thanking everyone for thenice emails, Lyn