I'm thinking tissue?

[Cooker]

I just love the look of an unkempt man. As long as there isn't dried food on his mouth or clothing.

LMAO .... you must love TheChimp......

But back to the thread..... There is promising research being done as we type by the USMO (underground simian medical organization) ?. Replacement valve are being engineered from the ?thread like material? that is found on the inside of the banana peel ? the only side affect expected is the overwhelming urge to swing from trees and groom your neighbor

Please ......Live and let live, choose and let choose??..

 

[Lynlw]

Ooo, can't wait to use that on my husband "Knock it off or I'm sending you to coventry!"

I thought it had to do with witches or Nuns lol

 

[Eva]

CCummins,

Whichever valve you will choose, you will need to use the spirometer to help you take a deep breath. After all these posts, you may need to start practicing!

Good luck.

 

[Woodbutcher]

Thanks for clearing that up Neil !! It's easy to forget our English language differs so on each side of the pond ?? And obviously to be nuts, in that context has a stronger conertation in America ?
And you're right. love em or hate em we're all in the same boat here
,a big cyber space family of OHS survivors and preparers muddling along best we can ...
I think, more to the point, CCummins has picked up a few pros and cons from this thread which I think he was after, reading between the lines.

 

[Mary]

I'll stand by my original thought of the primary consideration of anyone facing this surgery is to do it only once if it's at all possible.

Here's an instance where we have differing views.
You feel that the primary consideration is to have one surgery if at all possible.
But your primary consideration is not my primary consideration. It wasn't when I made my choice, and almost four years later, it's still not.
I don't think it's the primary consideration of the 100+ members who did not chose mechanical.
Maybe you don't understand why it's not, but the fact is, it's not. And as Woodbutcher wrote, we're all in the same boat, so what difference does it make anyway?

 

[JeffM]

Hey, I think we need a study that shows if there is a relationship between one's valve choice and his/her political views. Is it possible that those who would choose a mechanical valve tend to be politically conservative, whereas those prefering a tissue are more politically liberal? And perhaps those leaning toward the Ross Procedure are politically libertarians (it's a US thing - similar to "coventry" maybe .

 

[ccummins]

You guys are the best! I don't know what I would do without this post and all of you. My brother is a orthopedic surgeon and I was talking to him about all of this. He was so impressed about all I know thanks to you. I also still don't know what I will go with. I am going to try to take the weekend off. Is anyone else addicted to this sight?? I have to force myself off! But I keep sneaking back on ...

I am very interested in the political views and choice. Good point!

 

[Ross]

And as Woodbutcher wrote, we're all in the same boat, so what difference does it make anyway?

7 reasons come to mind, Kelly Mitchell, Englander, Maia Everett, Enetric, Letittia, and myself. 1 I cannot mention due to ongoing litigation. For those that don't know the first 3, see the in loving memory forum. The last 3 nearly weren't here to discuss any of this, that's what the difference is. It's so easy to overlook the bad things that can and do happen when so many are successful, but there isn't one person on this forum that can predict how any particular persons surgery will turn out in the end.

 

[Woodbutcher]

One hour ago in the land of Ross, what time would that have been, the wee small hours ? 10 AM here, blue sky and the birds are singing. You're obviously very passionate about the whole reoperation thing, and the way my chest feels I'm with you on that one, but remember, each and every one of us is the sum total of the choices we've made, for better or worse and I'm not just talking valves...
Some members have seen fit to chastise my views on tissue valves, but here's the thing, when I found out about my condition I was really keen to have a tissue valve myself, it seemed far more natural to me and I didn't want some kind of man made lump of carbon inside me clanking away for the rest of my life.
Another reason, which goes way back to my teens when we were in the thick of the Cold war and I was an active member of the CND travelling the country with coach loads of other activists either planting trees for peace or chaining myself to American Cruise missile bases, it dawned on me that I didn't ever want to be dependent on any medication as it could get tricky if and when society broke down... Sounds crazy maybe, but it's a feeling that stuck with me. However, I'd learnt more about the implications of tissue valves from this site and I'd I'd also learnt about the On-x valve and it's trials with little or no ATC. Voila, I'd found a compromise, the FDA may not ever approve it for use with out meds but when zeeee Germans attack I'll be happy in the knowledge that I'll most likely be fine for a good few years with no Warfarin till the country settles down again and my Pharmacy re opens !
The reasons I outlined yesterday for not having a tissue valve are just my opinion, though I concede delivered in a slightly abrasive manner (sorry). But to all those who took offence they weren't aimed at anyone who already has one, they were aimed at a very narrow and targetted demographic, ie, a 38 year old male looking for opinions on the matter ? Without such opinions I'd almost certainly now have a tissue valve and more than likely, based on further reading be regretting it. But, I'm hasten to add, I'm only 42, I'll never get pregnant, I've no other medical conditions and it's my Aortic valve, not one that lends itself to needing a tissue implant ...
As for political, I think you're skating on thin ice there !? But I think you might be onto something.. I'm pretty Left wing politically and in the dusty spare room of my mind I'd still have liked a tissue valve, but I used to think they kind of merged with your own body and worked as one... But of course they dont.

 

[Ross]

I just want it to be clear that I do not care what valve a person chooses. What I care about it is whether or not they are in the 97% that survive the surgery. It's strictly my opinion and my problem I suppose, that I worry about that tiny 3% of people who don't survive or have nightmare surgeries that can and do happen. Call me a wuss or call me conservative, heck call me anything you want, but for God sakes people, I've been around here since nearly this sites beginning and I've loved and lost a few people, cried with their families, felt for their families, prayed and everything, for those people. It's all too easy to focus strictly on the 97% that fly through this and feel it's no big deal, but for some of us, it is a big deal. If it happened to you, someone in your family, or you yourself, you'd see what my problem is with not disclosing this to new folks.

If some of you have a problem with me actually caring about other human beings, then I don't know what to say to you. It's not about swaying ones decision toward one valve or another. It's about ALL possible outcomes of surgery and the seemingly endless thoughts that bad things won't happen. I do not beleive in tempting fate or luck. Now if that makes me evil in your eyes, then so be it.

I've explained my position, take it or leave it. Agree to disagree and let it go.

 

[Karlynn]

As far as weighing the odds and looking at percentages - you could also say that all of us that are here, are because we fell into the lower percentage. When I was first diagnosed with mitral valve prolapse at 22 (with no symptoms) I was told that they guessed that up to 10% of people have MVP BUT only a very small percentage ever have to have anything done about it. Those that do are very old. I know that many of us here have heard that or something similar. 4 years later when I became pregnant with my daughter - my valve went south very quickly and the rest is history.

I think those of us that caution people that even though the risk is small to take that risk seriously are those that have found themselves on that short side of the stick enough times to take those low numbers very seriously.

Fortunately for all of us - Ross was on the small % side of an issue that was for the best. He is one of the very few that survive aortic dissection.

 

[Lynlw]

That's fair, BUT many always down play the risk of people even IF it is an equally small percent that DO have problems with coumadin, even HERE there have been people (I do not name names I don't think that is right) that's internal bleeds or head bumps have been alot worse and even life threatning because they were on coumadin, again HERE most of the people are middle age, but even if you start coumadin at middle age chances are if you are lucky you will end up older and older people DO have alot more risks with being on coumadin. it is NOT the cuts I and others worry about bleeding out it is the head injuries or internal bleeding that can be a HUGE problem before you can even see it. YES the chances are small, but they are the same chances as having a problem with surgery. Old people tend to fall more and also have other medical problems that treating can be harder IF you are on coumadin. NO ONE ever mentions that here, because they get attacked, but you can read almost any valve thread and know there CAN be problems having surgery and that point is made loud and clear over and over and the risk if anything are exagerated, OF course the risks go up if you have other problems like lung issues ect. and YES a few people will end up on coumadin anyway, but once again THAT messages does come across loud and clear. Also the risk for 1 or 2 reops aren't that much worse than a first time surgery any more. The surgeons have alot more experience especially in the leading heart centers with treating people that have had 3 or more surgeries, which is WHY centers like Cleveland give over 90% tissue valves. I NEVER down play surgery and yes Justin has had 5 OHS and had MAJOR complications after 2 of them, BUT he went in healthy expept for his heart and after a couple BAD months he hasn't had any problems (and YES I KNOW we are BLessed, especially the surgeries 20 years ago, when they were still learning alot off the kids like Justin)and YES I would LOVE him to never need another surgery , but chances are he will need at least one more, but I doubt many here even IF they choose tissue will have 4 or more surgeries.
I have NO problems telling people surgery is risky, but at the same time any concerns about a life time of coumadin should not be called just taking a pill ..no worries either. I believe the stats show that for someone in their 50s the risks equal out and 60 and up the chances of not having a problem that can be worse with coumadin get lower. and call me crazy but I do care about the percentage of people that do alot worse with head injuries or falling down the steps when they are older ect.

Like I said many times basically anyone who needs a valve replacement out of all the different problems that you can have with your heart are very lucky, ALL choices are great and the vast majority who choose any option will go on to live long and happy lives, so I've always been saddened to see the big divide here, compared to oter groups I belong to where the choice can be SEVERAL surgeries, heart transplant or compassionate care, which is go home to die. (When Justin was born we knew he would have a life time of surgeries, IF we chose to) BUT there are never these kinds of divides between the members, so I've never understood why there has to be here.

I also do NOT understand WHY any thread that starts out asking something because they are leaning tissue gets side tracked and they usually do.

 

[JeffM]

Politics and valve choices

Politics and valve choices

Hey guys....it was more of an attempt at humor than anything. Although, I admit to being interested in knowing if there is a correlation...definitely not in being proven right or wrong as I don't have an opinion as much as a curiosity about it. I've read many of the posts on valve selection and appreciate all the viewpoints and, in fact, am not passionate about one over the other because I recognize there are pros and cons to each and it is a very personal decision. How lucky we are to even have choices! We can only hope that we have additional choices for future ops and re-ops. And Ross, I have no idea if you're conservative, my friend. I love ya for doing what you do!

 

[Karlynn]

I think those of us that caution people that even though the risk is small to take that risk seriously are those that have found themselves on that short side of the stick enough times to take those low numbers very seriously.

Lyn, this wasn't a comment about any particular valve, procedure or medication - just a comment on why some of us give more caution to assuming you aren't going to be in the small % of any statistical group. Some of us have been in that small %. For me it was medication and arrhythmia. For all of us, it's that we're here in the first place because most people don't have these kind of problems with their valves.

I wish I was one of those people who were just told they needed a valve replacement while feeling perfectly healthy and living a normal life, had the surgery, recovered quickly and got on with life. I was not. I had 5 years of terrible problems prior to my replacement and if I heard it once - I heard it a million times "We usually don't see people that have the problems that you do." So much so that I still go into any procedure or test figuring that something will go wrong and come out very relieved and surprised that it didn't. I was someone who always had the other shoe dropping. It took me 2 full years to recover after my surgery. Once again - the short side of the statistical stick.

I want people to be hopeful about whatever choice they make, but I also want them to be informed, prepared and realistic.

 

[Lynlw]

Lyn, this wasn't a comment about any particular valve, procedure or medication - just a comment on why some of us give more caution to assuming you aren't going to be in the small % of any statistical group. Some of us have been in that small %. For me it was medication. For all of us, it's that we're here in the first place because most people don't have these kind of problems.

I agree but just wanted to point out the small percent goes for all choices, it sometimes does not come across that way. and I am NOT pointing out any members, just an observation. Heck , both my Mom and son had major comlications that are incredibley rare following heart surgery and almost died and Justin's dacron graft that should have lasted decades didn't make it 2 years AND my Dad is on Coum for A-fib (no heart surgeries) so my family tends to always find the small numbers
oh and just to add to the fun small numbers my family tends to find, my Mom had a cath before her Abdominal AA (a few years before her CABG) and had the cath break lose in her and had to be ambulanced to a larger center to get it removed while they reparied the AAA and Justin needed his pacemaker after a cath. So yep we plan on things going wrong and being pleasantly surprised if they go smoothly.

 

[Eva]

When I read members' threads defending their valve choice, I feel the passion they put on their opinion stems out from their own experience PERSONAL ONLY and not toreal affect someone elses' decision. Even though it has been done several times, maybe we need always to end our posts by stressing that this is a personal choice.

I have two sisters and a brother who died of cancer...I am the youngest and I was so scared and confused considering the risks I will have with ACT if I have cancer, or when I get older...I still chose mechanical...the chances to have cancer were far less than having another surgery at the time I made the choice...the chances to live very long is in God's hands and if I am meant to live long I hope the medicine will improve with taking care of ACT side effects, as well as it will improve to make valve replacements easier for the new heart patients in the future or for those with valve tissues now.

I like little side tracking ... it takes the heat away.

to Lyn and other mothers...my heart aches for you, mothers! it is much harder on you than it is on us. May God bless your hearts and strengthen you to go through with your motherly mission.

I was hesitant to write, but fel it strong in my heart that is still recovering

Have a great weekend everyone. Love overcomes all obstacles.

 

[bit of a chicken]

Re Jeff M !!
Politics....choices..chances... I think Jeff is right: "HOW LUCKY WE ARE TO HAVE CHOICES " . Could not say it better myself .Just for a laugh...I am in the ross proceedure camp, def Lib Dem ???

Let's take this outside its box... we are lucky to have a choice and we are all grown up enough to make our own. I have a friend that has a little boy with Cystic Fibrosis... not so lucky in the choices camp . I think we are very lucky that advancements in this field enable us all to be on this forum, helping others...and remembering and thinking of the small numbers. It is all relevant. Good luck CCuommins ( ? ), the person who started thread in the first instance ...

 

[ctyguy]

ccummins...

To your original post, if you choose tissue over mechanical it does go somewhat against the grain for someone your age but that certainly doesn't make it a bad choice by any stretch. There have been huge advances over the last 20 years and I would expect the same over the next 20. If tissue is what feels right to you and yours then that is the right choice. Odds are you will need another surgery down the road but if your ok with that then that is all that matters.

I went mechanical because Im hoping to avoid more OHS down the road. Im 43 and figured I would be looking at 2 or 3 additional procedures potentially and I didn't want to face that. The fact that I am taking Coumadin does suck but it hasn't slowed me down any. Im the type that hates taking anything but after 11 months on the stuff I haven't had any signficant issues. I bruise a little easier and I do thnk its contributing to my hair loss. But if thats the extent of the consequences then Im cool with that. By the way I did a 1 hr cadio class the gym today and am starting to train for a 1/2 marathon, neither of which I could remotely consider before the surgery.

Looking back now the surgery was significant but given my overall health (besides the valve) it wasn't as bad as I thought it was going to be. The human body is incredibly resilient and if you commit to a healthy lifestyle then OHS is something you can get through and bounce back from pretty quickly. There are those that have other issues however so its not all sunshine and lollypops in all cases.

Someone asked about the Ross Proecedure and Cleveland Clinic. My surgery was at C.C. and my surgeon, Gosta Petterson, told me that the re-op rate was over 20% within 10 years and that is why he does not recommend it any longer. He logic is if all you have wrong is a bogus AV then go with a tissue or mechanical and stay a one valve patient. The Ross procedures makes you a 2 valve patient. Thats what conviced me to be more of a "traditionalist".

The bottom line is mechanical or tissue, doesn't really matter. Both choices have drawbacks, both have advantages. You need surgery, go with your gut and get it taken care of.

Best of luck to you...

 

[Lynlw]

Thanks Eva

 

[dick0236]

Another consideration that I am having is that in 10 years the valve replacement probably won't require OHS. With the links to new procedures already I would think that in 10 years it would be common place. Any help is appreciated!!

This is part of the initial post that troubles me. I certainly do not criticize ccummins for making it because he/she is new to all of this, probably a little scared, and relying on what he/she has read or has been told. Decisions on this kind of surgery are best made by "facts as they are known, not as we, or our docs, wish them to be". OHS has been around for over 50 years, and while it has come a long way, it remains a serious surgery. My personal, and biased, opinion is "the fewer, the better"

Be careful about what docs sometimes say. They may, or may not, truly believe their own words. When I had my surgery, they "assured" me that the valve had a fifty year life........and now they are amazed (even the surgeon who put it in) that I still have it. My cardio calls me "a medical miracle":

Do your homework and make your valve decision based on what you feel is best for you, not only now, but also in the future. Either choice will add both "quantity and quality" to your life.....and nobody can know the future.

Man, am I glad there was only one valve around when I had my surgery. Making the decision to have the operation is bad enough, not to mention also having to choose which valve. However, you can take comfort in knowing that millions (I think) have gone thru this and came out the other side...bright eyed and bushy tailed .

OOPS...my comments are not a retort of Ctyguys post. I meant the comments docs sometimes make "predicting the future".