Still trying to make a final decision - my first post

[JUST-WAITING]

Possible repair and or replacement via catheter ? Supposedly they installing in europe via cath. I also looked at side by side tests (photos) of the valves comparing at 8 years - Valve showed little wear compared to others --- Yes I realize this is the companies propaganda- I contacted the company and got a good response to questions about tests and poss complications (dyalsis- etc? ) It also seems like this valve may be close to normal flow as we could get now. Hope they dont have recalls like Toyota, Ford, Gm !!!!

 

[normofthenorth]

Fascinating option. I was unaware it existed 'til now. Are you going for the state-of-the-art (and suture-less) ATS 3f Enable, or the "older" ATS 3f, model 1000? They both seem quite cleverly designed and marketed, and the hemodynamics look nearly perfect!

 

[normofthenorth]

To assume a known risk by getting a tissue valve (and the consequent reops) in order to lessen the risk of a possible event (thromboembolism) makes little sense to me. Particularly when anticoagulation management has improved so dramatically. And patients are now allowed to control their own anticoagulation with home monitoring, which allows the patient to control their own destiny. I wonder how those folks feel who got a tissue valve, only to have to take anticoagulation anyway? So they get to have a reop and if they had gotten a mechanical in the first place they wouldn't need the reop.

Dan, if you got a guarantee that you'll never need a re-op, then congratulations -- and don't LOSE it! This forum has MANY posters who got a mechanical valve and THEN had one or more re-ops. That seems to me, to be a very similar frustration/disappointment/heartbreak to the one you describe, where somebody opts for tissue to avoid ACT, then needs ACT anyway. Both of those bad surprises happen, and neither group gets a binding guarantee.

Home INR testing helps a patient control their INR. Unfortunately, doing that only keeps you at the best-tradeoff part of the two risk curves (clots and bleeding), not at the no-risk part of either one.

Listen, we've already established that the SIZE of the competing risks is statistically indistinguishable, according to the best and the newest studies. So we only chose different valves because we prefer different KINDS of risks. Your quote above just proves that the risks you chose to bear are practically invisible to you, and the risk you are trying to avoid is a real Boogeyman, that apparently gives you nightmares. Excellent! Now please just stop insisting that the majority that's currently making the opposite choice (including JUST WAITING) shares your preference!

 

[ALCapshaw2]

This forum has MANY posters who got a mechanical valve and THEN had one or more re-ops.

MANY members who needed to have Mechanical Valves replaced?

Can you name them? I only know of two.

Robthatsme had to have his St. Jude Master's Series Aortic Valve replaced due to Pannus Tissue Growth which impeded the leaflet operation.
A former member chose to replace her mechanical valve due to a problem with Brain Bleeds that were exacerbated by Coumadin.

Who else?

On the other side of the coin, are there ANY members who have had a tissue valve for over 12 years?

'AL Capshaw'

 

[neil]

boys and girls ,time out needed here i think,cant we agree to disagree? i think we ALL agree we wouldnt like to be in this position dont we,and most of us are valve buddies now then will some one get the choccies out please, i prefer dark choclate, oh dear bet someone says there prefer white lol

 

[Superbob]

JUST-WAITING just got closer - using the vast info you have provided and all the info I could attempt to digest- As a Paramedic for 20 years+ - I am amazed at the knowledge of the people that gather here. Thanks folks!!! You are amazing-


I am going with the Ats 3f- valve - even though it does not have the history of most valves - I like the design, concept and future possiblities- I want to remain active and was really down to the Ross procedure and this option. Due to being 52 and after researching this I think it will be better than what I have.

I am new to this thread but I just wanted to congratulate you for sorting through this complex issue and making the decision with which you are most comfortable. Six years ago, I, too, went with a valve that did not yet have a long history but seemed to be promising in terms of structure and initial performance. My surgeon congratulated me on the decision. I have not been disappointed. All best wishes to you as you go forward.

 

[Lynlw]

Possible repair and or replacement via catheter ? Supposedly they installing in europe via cath. I also looked at side by side tests (photos) of the valves comparing at 8 years - Valve showed little wear compared to others --- Yes I realize this is the companies propaganda- I contacted the company and got a good response to questions about tests and poss complications (dyalsis- etc? ) It also seems like this valve may be close to normal flow as we could get now. Hope they dont have recalls like Toyota, Ford, Gm !!!!

OK yes chances are good tissue valves would be able to be replaced by cath when the time comes,. They are doing trials in the US now you can search here for sapien (edwards) which has gone on for a few years now or medtronics corevalve which trials are just beginning for. I think that valve looks pretty interesting.

 

[JUST-WAITING]

I am now at peace with my choice and ready to move on - I watched video from Austin Heart Hospital on minimally Invasive and that should be what I am getting- I am not scared of regular surgery but if this works - I will be back to work - I am not a marathon runner like a lot of the people I see getting this valve but I am active and hard working in my business and garden.

 

[dtread]

Dan, if you got a guarantee that you'll never need a re-op, then congratulations -- and don't LOSE it! This forum has MANY posters who got a mechanical valve and THEN had one or more re-ops. That seems to me, to be a very similar frustration/disappointment/heartbreak to the one you describe, where somebody opts for tissue to avoid ACT, then needs ACT anyway. Both of those bad surprises happen, and neither group gets a binding guarantee.

Home INR testing helps a patient control their INR. Unfortunately, doing that only keeps you at the best-tradeoff part of the two risk curves (clots and bleeding), not at the no-risk part of either one.

Listen, we've already established that the SIZE of the competing risks is statistically indistinguishable, according to the best and the newest studies. So we only chose different valves because we prefer different KINDS of risks. Your quote above just proves that the risks you chose to bear are practically invisible to you, and the risk you are trying to avoid is a real Boogeyman, that apparently gives you nightmares. Excellent! Now please just stop insisting that the majority that's currently making the opposite choice (including JUST WAITING) shares your preference!

Norm, like Al, I’ve hardly ever heard of mechanical valve recipients needing reops; at least not in recent times; i.e., since some defective mechanicals were pretty much eliminated. Can you substantiate the unbelievable claim that “there are MANY posters who got a mechanical valve and THEN had one or more re-ops” with any factual information? I highly doubt it, because the mechanicals are usually a one time deal; and by one time deal I mean the patient is usually only required to have open heart surgery once. This is just an out-and-out fabricated bunch of bull. You have just lost whatever limited credibility you might have had.

I’m sorry but I feel an obligation to inform the newbies of what they’re getting into with valve replacement. They need to know that the advantage of tissue valves is that they get a decreased risk of thromboembolism. However, they need to know that in order to get this decreased risk of thromboembolism they have to sign up for open heart surgery on a periodic basis (approximately every 12 years or so), and that is pretty well established and guaranteed. They need to know that they’ll have a breathing tube shoved down their throat, their heart will be stopped and the blood in their body will be artificially pumped in and out of their body by the heart lung bypass machine, using catheters attached to their aorta and the jugular vein in their neck. They’ll have IVs and catheters inserted in both wrists, in their urinary tract, and they’ll probably spend about a week, maybe more, in the hospital , barely able to walk, and take another several weeks hobbling around recuperating. The whole thing will cost probably $100K or more. And there is a risk that they could die during the operation. All that so that they can have a decreased risk of thromboembolism. Yes, I think they need to be informed. If, after they’ve been informed and know the facts, they can make their choice.

 

[dick0236]

I feel an obligation to inform the newbies of what they’re getting into with valve replacement. They need to know that the advantage of tissue valves is that they get a decreased risk of thromboembolism. However, they need to know that in order to get this decreased risk of thromboembolism they have to sign up for open heart surgery on a periodic basis (approximately every 12 years or so), and that is pretty well established and guaranteed. They need to know that they’ll have a breathing tube shoved down their throat, their heart will be stopped and the blood in their body will be artificially pumped in and out of their body by the heart lung bypass machine, using catheters attached to their aorta and the jugular vein in their neck. They’ll have IVs and catheters inserted in both wrists, in their urinary tract, and they’ll probably spend about a week, maybe more, in the hospital , barely able to walk, and take another several weeks hobbling around recuperating. The whole thing will cost probably $100K or more. And there is a risk that they could die during the operation. All that so that they can have a decreased risk of thromboembolism. Yes, I think they need to be informed. If, after they’ve been informed and know the facts, they can make their choice.

Thanks for posting this Dan. I had just about forgotten how much fun this operation was 43 1/2 years ago....sure glad I probably won't have to do that again:tongue2:....at least that's what my Cardios tell me:thumbup::biggrin2:. I think I'll keep taking that "nasty ole pill".....beats the hell outa thinking about another surgery.....@age 75+. It was hard enough the FIRST.....and ONLY time:thumbd:.

 

[Lynlw]

I am now at peace with my choice and ready to move on - I watched video from Austin Heart Hospital on minimally Invasive and that should be what I am getting- I am not scared of regular surgery but if this works - I will be back to work - I am not a marathon runner like a lot of the people I see getting this valve but I am active and hard working in my business and garden.

Once again I am happy you have found peace with your valve choice. I wish everyone could be happy for you. Please don't let anyone second guess yourself.

 

[kfay]

Just Waiting, I'm glad to see that you've picked a valve that you are at peace with. I'm not sure why 4 or 5 people decided to hijack your thread and just keep at it. Why could you guys at least not have the decency to start your own thread and get off of his?

Dick, did you even bother to read his posts to see that he just posted that he has settled on a tissue valve or do just not care that you would post something like that to a first timer, coming in here scared looking for support? I mean, I expect that from Dan's posts, but I never thought you were like that:

"Thanks for posting this Dan. I had just about forgotten how much fun this operation was 43 1/2 years ago....sure glad I probably won't have to do that again....at least that's what my Cardios tell me. I think I'll keep taking that "nasty ole pill".....beats the hell outa thinking about another surgery.....@age 75+. It was hard enough the FIRST.....and ONLY time"

Wow, this thread has hit an all time low...you guys really need to take this to pm's because I'm sure Just Waiting would have rather had friendly support instead of this crap.

 

[Bina]

I am now at peace with my choice and ready to move on - I watched video from Austin Heart Hospital on minimally Invasive and that should be what I am getting- I am not scared of regular surgery but if this works - I will be back to work - I am not a marathon runner like a lot of the people I see getting this valve but I am active and hard working in my business and garden.

congrats on your choice and don't look back....

 

[ottagal]

Just-Waiting,
So glad that you have made peace with your decision. That is half the battle.
Wishing you all the very best and do keep us posted! We are rooting for you.

 

[Gemini13]

I am with kfay on this one--justwaiting has chosen a tissue valve. Graphic details of surgery or quick quips about taking a little pill are probably not what is needed to help justwaiting to prepare for surgery.

 

[neil]

cant believe some of the stuff you mech guys are writing on here, this is supposed to be a support group, i have always supported newbies whatever they pick,think sum of you should take a long hard look in the mirror,ITS A SUPPORT GROUP,

 

[dtread]

I am with kfay on this one--justwaiting has chosen a tissue valve. Graphic details of surgery or quick quips about taking a little pill are probably not what is needed to help justwaiting to prepare for surgery.

Yes you are right and I apologize to Just Waiting and would like to wish her well on her surgery. Sorry, I was caught up in the passion of the argument. I sincerely hope you have an uneventful surgery and recovery.

 

[Hank]

Oh the strenghts of a public forum. Thanks to tose who have contributed. Lets all remember that when a thread is started, the thread topic has been chosen by the poster. If someone wants to change the topic, then some can start their own thread. Overall a great conversation. They usually are until members start taking things personal and deviating from the topic.

 

[JUST-WAITING]

Making a decision is a tough choise and when I came to the site I expected a varity of opinions- and boy did I get them -- I respect each and every one - I have no feelings -"I am married " - as a paramedic in the field for 20 years I understand real life. AS A CANCER SURGERY survivor of 17 years I know the risks of surgery after 8 hours on the table- "not a happy time " in my life - last time I approached surgery feeling sorry for my self ,depressed, mad at everyone including GOD and myself (after watching my dad die of cancer at 56)

But this time- with help from family, doctors (which one truly recommended the Ross) "not ny surgeon" I approach this differnently I am still scared but at peace with myself- I am ready to move forward - I have been talking to fellow site members in my area that area and I have a new family (even though I do not know who they are for sure)- BLESSINGS TO ALL AND GODSPEED !!!

 

[dick0236]

Dick, did you even bother to read his posts to see that he just posted that he has settled on a tissue valve or do just not care that you would post something like that to a first timer, coming in here scared looking for support? I mean, I expect that from Dan's posts, but I never thought you were like that:

"Thanks for posting this Dan. I had just about forgotten how much fun this operation was 43 1/2 years ago....sure glad I probably won't have to do that again....at least that's what my Cardios tell me. I think I'll keep taking that "nasty ole pill".....beats the hell outa thinking about another surgery.....@age 75+. It was hard enough the FIRST.....and ONLY time"

........I'm sure Just Waiting would have rather had friendly support instead of this crap.

kfay...I stand by my post. I have read his initial post and the answering posts to his thread and a lot of long winded, statistical garbage. I kept my mouth shut until my first reply, #47, and attempted, unsuccessfully, to put this "mechanical vs tissue" BS into its proper perspective. I get irritated when others begin to spout off on subjects they can have NO knowledge of....and then try to support their position with studies that are old, sometimes inaccurate, and take them out of context. Some of this BS is, in my opinion, an attempt to justify or reinforce THEIR choices. Maybe mine is too, but at least I have my "history" on my side and do not have to rely on outdated, "egg-head" studies that are often published to prove a particular point or to give "professionals" something to read while in the bathroom.

OHS ain't no fun, but it is doable......the fewer the times, the better. That said.....I hope that I never have to do it again.