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ClickityClack

Active member
Joined
Mar 29, 2017
Messages
34
Location
Rochester, NY
This is my first post but I've been lurking for a couple weeks, trying to get my login sorted. I just wanted to say thank you for all the information and reassurances. None of it was for me directly, but I could identify with a lot of the people here and found many threads grounding and comforting.

I'm 38 and have a bicuspid aortic valve that was diagnosed in early 2010. The aortic aneurysm was first diagnosed in late 2011 at 4.8cm. Latest echo and confirming CT shows it at 5.0cm now.

So I'm scheduled for an ascending aortic aneurysm repair on May 4th at Strong Memorial in Rochester NY. Dr. Peter Knight will be performing the surgery. I met with him a couple of weeks ago and he assured me that, "we won't leave you with a leaky valve." Whether that means repair or replacement, tissue or mechanical is somewhat up to me.

He said it would be On-X if I went mechanical. I was leaning with that originally but then I started looking at the numbers. The lifelong risk of reoperation and bleeding events is higher than I thought it would be. And then I found out that long term mortality is essentially equal vs tissue. I still don't really have a clear choice in my head but all of you (especially pellicle and his blog) are making me feel better about warfarin.

I've never had surgery and I'm nervous as hell - can't even think about the specifics of the op without my heart rate going up.
 
Welcome to the site! Glad you're finding the support you need in the posts. I have a tissue valve, so I can't address your concerns about the On-X, but you will hear from pellicle and others soon enough :)

As far as feeling nervous, welcome to the club. In your case your feelings are stronger because you've never had surgery before. The hospital environment can be intimidating if you've not been down that road before. Just keep in mind that it's all quite normal.

Do you have support group to walk this journey with you?

Michele
 
Thank you honeybunny.

I do have support. My wife just went through a major surgery a few months ago so she knows. Most of my immediate family live close by as well. And the company I work for is being awesome too - very understanding and throwing in some extra vacation. It's a huge help as I'm the only income.
 
welcome aboard. The waiting is the worst bit imo, the actual op isn't that bad, I went for tissue also as didn't want to be on warfarin and the problems that may occur, saying that many do ok on it, good luck and am sure you will do just fine
 
ClickityClack;n875287 said:
This is my first post but I've been lurking for a couple weeks, trying to get my login sorted. I just wanted to say thank you for all the information and reassurances. None of it was for me directly, but I could identify with a lot of the people here and found many threads grounding and comforting.

I'm 38 and have a bicuspid aortic valve that was diagnosed in early 2010. The aortic aneurysm was first diagnosed in late 2011 at 4.8cm. Latest echo and confirming CT shows it at 5.0cm now.

So I'm scheduled for an ascending aortic aneurysm repair on May 4th at Strong Memorial in Rochester NY. Dr. Peter Knight will be performing the surgery. I met with him a couple of weeks ago and he assured me that, "we won't leave you with a leaky valve." Whether that means repair or replacement, tissue or mechanical is somewhat up to me.

He said it would be On-X if I went mechanical. I was leaning with that originally but then I started looking at the numbers. The lifelong risk of reoperation and bleeding events is higher than I thought it would be. And then I found out that long term mortality is essentially equal vs tissue. I still don't really have a clear choice in my head but all of you (especially pellicle and his blog) are making me feel better about warfarin.

I've never had surgery and I'm nervous as hell - can't even think about the specifics of the op without my heart rate going up.

I am in the waiting room friend ! Might I ask you why you are worried about a mechanical valve ? The people in this forum have 25+ year anniversaries ! The bleeding risks and re operation != mortality . Your health pre surgery is the strongest predictor for mortality .... Stressing yourself and thinking about dying when you are actually saving your life is the fastest way to die actually
 
ashadds;n875294 said:
Stressing yourself and thinking about dying when you are actually saving your life is the fastest way to die actually

Well that made me laugh and gave me some perspective, thanks.

I guess the tissue vs mech question is me trying to put the best odds in my favor; who wouldn't want to do that? Except I'm finding that the odds aren't that much different when everything is said and done. Comes down to warfarin or probably two more surgeries really. Having experienced neither, I'm unsure.
 
Hi

ClickityClack;n875287 said:
This is my first post but I've been lurking for a couple weeks, trying to get my login sorted. I just wanted to say thank you for all the information and reassurances. None of it was for me directly, but I could identify with a lot of the people here and found many threads grounding and comforting.

I'm glad that all the posts we make answering the questions of each other helps those lurkers ... my experience of the internet (since about 1992) suggests that's exactly what happens.

I'm 38 and have a bicuspid aortic valve that was diagnosed in early 2010. The aortic aneurysm was first diagnosed in late 2011 at 4.8cm. Latest echo and confirming CT shows it at 5.0cm now.

that's actually pretty good, cos the main issue which drives the need for reoperation in a mechanical is aneurysm and then pannus formation. So you are getting one fixed in this surgery (the aneurysm) and AFAIK the On-X has some design feature which contributes to reduced pannus. Like everything pannus is a risk which is associated to factors and a small valve diameter is one of the factors.


I've never had surgery and I'm nervous as hell - can't even think about the specifics of the op without my heart rate going up.

its like a roller coaster ... there is a lot of anticipation in the lead up but in what seems no time at all you're out walking the park again and wondering if you'll stand in queue again.

In your post to ashadds you mention:
Comes down to warfarin or probably two more surgeries really. Having experienced neither, I'm unsure.

Well there is knowledge and there is experience. Knowledge tells us that if one rolls a dice there is a known probability of getting one of the numbers. If I roll a number you may roll a different one. Experience is when you learn that rolling dice in the casino always leads to losing money sooner or later.

The information cited about the risks of bleed and clot from warfarin is gathered from the millions of old people who are clot or stroke prone who are on warfarin because they had a stroke. Why they had a stroke is usually left a mystery for each individual and never addressed in the literature. The problems with being on warfarin are now clearly understood as being a management issue. The better you manage your INR and remain within range the less likely you are to have any incident.

The PROACT trial (done by On-X) is an excellent example of this. If you read past the abstract into the methods of these studies it reveals a lot. Their groups were tightly monitored and had INR tested weekly and were also tightly controled and had very high ratios of "in range". It does not take Einstein to work out that the key points that emerge across all modern (in the last 15 years) studies is that being in range and being in range most of the time is critical to good outcomes. How is this achieved? Regular (weekly in all study cases) monitoring and knowledge of how to proceed if you are out of range. There have been other studies which show that being in range > 90% of the time puts you in the same (lack of) risk group as the general population (who aren't on warfarin).

Of course age is a factor in this, as the aging process makes arteiys, veins and capillaries less flexible (elastin degrades for a starter) and more prone to damage (my dad was always getting some minor bump on his arm that bled and he wasn't on warfarin ... just 70). Warfarin does not make you bleed, nor contribute any way to making you bleed, all it does is make it take longer for bleeding to stop.

On experience I've had 3 surgeries now and I can assure you that when surgeons talk about the risk of reoperation they are quoting the stats of the risk of ONE reoperation. The third reoperation is trickier and the fourth. They also do not mention the inherent risks of there being other issues such as "oh look you now have a pacemaker" because during surgery something was cut which shouldn't have been because it was obscured by scar tissue.

They do not mention the risks of infection and the risks that actually you may take years on antibiotics (as well as a couple of surgeries that aren't technically heart surgeries) to clear that.

My personal view is that a tissue prosthesis probably frees you from needing warfarin (although that's not a certainty by any means, as much as 20% risk that you'll be on warfarin post op with a tissue) it brings with it the fact that you are now back in the waiting room at an earlier stage and being monitored in lead up to your next surgery. I view it that I can have ZERO input into guiding and influencing the outcomes of a tissue prosthetic but I have a lead role in guiding and influencing the outcomes of warfarin.

Myself I like to be not only responsible for my own life I like to manage it myself.

So I'm happy to be a clunker on rat poision ;-)

Don't be fooling yourself that you won't hear it (the valve) because you will ... but if you don't go psychotic on worrying about it you will find in a year or two that you don't notice it as much any more ... then after 5 years you'll just pretty much ignore it ... probably by the time your Dicks age (still on that same valve) you'll laugh about it.

Oh ... amusing anectode ... a US Soldier tried to commit suicide by taking an over dose of warfarin. He changed his mind and submitted to hospital. They put him on IV Vitamin K and there was no harm done.

I hope your surgery and recovery is smooth ... but if you hit any bumps then ... stop on by

Best Wishes
 
pellicle;n875300 said:
Hi



I'm glad that all the posts we make answering the questions of each other helps those lurkers ... my experience of the internet (since about 1992) suggests that's exactly what happens.



that's actually pretty good, cos the main issue which drives the need for reoperation in a mechanical is aneurysm and then pannus formation. So you are getting one fixed in this surgery (the aneurysm) and AFAIK the On-X has some design feature which contributes to reduced pannus. Like everything pannus is a risk which is associated to factors and a small valve diameter is one of the factors.




its like a roller coaster ... there is a lot of anticipation in the lead up but in what seems no time at all you're out walking the park again and wondering if you'll stand in queue again.

In your post to ashadds you mention:


Well there is knowledge and there is experience. Knowledge tells us that if one rolls a dice there is a known probability of getting one of the numbers. If I roll a number you may roll a different one. Experience is when you learn that rolling dice in the casino always leads to losing money sooner or later.

The information cited about the risks of bleed and clot from warfarin is gathered from the millions of old people who are clot or stroke prone who are on warfarin because they had a stroke. Why they had a stroke is usually left a mystery for each individual and never addressed in the literature. The problems with being on warfarin are now clearly understood as being a management issue. The better you manage your INR and remain within range the less likely you are to have any incident.

The PROACT trial (done by On-X) is an excellent example of this. If you read past the abstract into the methods of these studies it reveals a lot. Their groups were tightly monitored and had INR tested weekly and were also tightly controled and had very high ratios of "in range". It does not take Einstein to work out that the key points that emerge across all modern (in the last 15 years) studies is that being in range and being in range most of the time is critical to good outcomes. How is this achieved? Regular (weekly in all study cases) monitoring and knowledge of how to proceed if you are out of range. There have been other studies which show that being in range > 90% of the time puts you in the same (lack of) risk group as the general population (who aren't on warfarin).

Of course age is a factor in this, as the aging process makes arteiys, veins and capillaries less flexible (elastin degrades for a starter) and more prone to damage (my dad was always getting some minor bump on his arm that bled and he wasn't on warfarin ... just 70). Warfarin does not make you bleed, nor contribute any way to making you bleed, all it does is make it take longer for bleeding to stop.

On experience I've had 3 surgeries now and I can assure you that when surgeons talk about the risk of reoperation they are quoting the stats of the risk of ONE reoperation. The third reoperation is trickier and the fourth. They also do not mention the inherent risks of there being other issues such as "oh look you now have a pacemaker" because during surgery something was cut which shouldn't have been because it was obscured by scar tissue.

They do not mention the risks of infection and the risks that actually you may take years on antibiotics (as well as a couple of surgeries that aren't technically heart surgeries) to clear that.

My personal view is that a tissue prosthesis probably frees you from needing warfarin (although that's not a certainty by any means, as much as 20% risk that you'll be on warfarin post op with a tissue) it brings with it the fact that you are now back in the waiting room at an earlier stage and being monitored in lead up to your next surgery. I view it that I can have ZERO input into guiding and influencing the outcomes of a tissue prosthetic but I have a lead role in guiding and influencing the outcomes of warfarin.

Myself I like to be not only responsible for my own life I like to manage it myself.

So I'm happy to be a clunker on rat poision ;-)

Don't be fooling yourself that you won't hear it (the valve) because you will ... but if you don't go psychotic on worrying about it you will find in a year or two that you don't notice it as much any more ... then after 5 years you'll just pretty much ignore it ... probably by the time your Dicks age (still on that same valve) you'll laugh about it.

Oh ... amusing anectode ... a US Soldier tried to commit suicide by taking an over dose of warfarin. He changed his mind and submitted to hospital. They put him on IV Vitamin K and there was no harm done.

I hope your surgery and recovery is smooth ... but if you hit any bumps then ... stop on by

Best Wishes

Pellice - thank you for your contributions, explanations, data and facts that you are providing to this forum. This in combination with other postings has helped me a lot over that past 9 months since OHS. I am testing my INR at home and have no trouble staying in range - it is really not rocket science and not so complicated.

To ClickityClack: I am not sure what your symptoms at this point are but from my experience I was sick BEFORE surgery and feel now completely healthy, healed and back to normal. I did go with the On-X valve and can say that I have no limitations or loss of anything whatsoever. I know that this is a very personal decision - but I felt at 58 a mechanical valve is the right choice, you might want to think about this especially since you are 20 years younger. Yes, I can feel a click sensation when it is quite and my heart rate in in the low 50s - but I am in the process of getting used to it and I trust Pellice (and others) experience in this regard.

Juergen
 
Clickity-Clack -- just wanted to join in welcoming you and wishing you the best as you make pre-surgical preparations and then go forward toward your new life. One of the old-timers here, I went with a combined aortic root and value replacement (tissue, Medtronic Freestyle) back in 2005. Weighed all the pros and cons -- however, I was 63 at the time, not 38. Still doing fine with that Freestyle 12 years later, but the med experts say we oldsters chew up the tissue valves more slowly than do young folks.

Do your research, weigh all the advice, and make your own choice -- it will be a good one I'm sure.
 
Juli;n875304 said:
Pellice - thank you for your contributions, explanations, data and facts ...
Juergen

Very welcome.
As I have said before, being Australian the state provides free health care, but also kinda expects that patients allow younger interns and registrars to have a listen and ask questions as part of their training. This sort of started me down the path of sharing experiences and paying it forward.

I just provide data and opinion, everyone has to make up their own mind. I feel it's important to provide evidence with veracity, and if it's just opinion then that needs to be clarified. A anything less is irresponsible. I believe strongly that we should each make our decisions and be responsible for accepting that outcome.

I operate on the premise that people want facts and wisdom with which to make their decisions.

Best Wishes.

PS: heading to Sweden at the moment, waiting overnight in Turku (Finland) for the early ferry tomorrow morning.
 
ClickityClack;n875296 said:
Well that made me laugh and gave me some perspective, thanks.

I guess the tissue vs mech question is me trying to put the best odds in my favor; who wouldn't want to do that? Except I'm finding that the odds aren't that much different when everything is said and done. Comes down to warfarin or probably two more surgeries really. Having experienced neither, I'm unsure.

Two more surgeries is also a gamble....It may be two only if the tissue valves each last 20 years..
38->58->78 (at this point if each valve lasts 20 years which is the best case scenario , you would face OHS 3)...

I think a reop in a center of excellence is safe , I myself am struggling with a choice actually....If I last a decade more with my native valve and it is not impossible as I have moderate stenosis which has been stable for a long time... i would be 36 . I am 26 now . I will evaluate all choices but I know that if I choose a tissue once , it will fail and I will be definitely choosing a mechanical the second time . That would make it a total of 2 Interventions in my life time . I have never before had any intervention. So its still not a bad gamble hopefully
 
ashadds;n875314 said:
Two more surgeries is also a gamble....It may be two only if the tissue valves each last 20 years..
38->58->78 (at this point if each valve lasts 20 years which is the best case scenario , you would face OHS 3)...

I think a reop in a center of excellence is safe , I myself am struggling with a choice actually....If I last a decade more with my native valve and it is not impossible as I have moderate stenosis which has been stable for a long time... i would be 36 . I am 26 now . I will evaluate all choices but I know that if I choose a tissue once , it will fail and I will be definitely choosing a mechanical the second time . That would make it a total of 2 Interventions in my life time . I have never before had any intervention. So its still not a bad gamble hopefully

I do realize that only 2 more OHS would be me hitting the skinny right side of the curve twice in a row. But, I could also land to the left and average 6 to 8 years from a given tissue valve. That end of the spectrum needs to be considered too. And then you have the degradation to contend with as well. I don't have serious symptoms right now but it would be nice keep up a conversation after the third flight of stairs. In any case I wish you luck and confidence when you have to choose.

I told my kids last night (5 and 7). I tried to be as upbeat and nonchalant as possible but I think the seven year old grasps the gravity of it - waterworks immediately. The mechanical gives me a shot at one-and-done. I think I have to take it.
 
ClickityClack;n875353 said:
.......... The mechanical gives me a shot at one-and-done. I think I have to take it.
I

I agree with your thinking. BTW, my kids where 6 & 8 when I had my surgery. Now they have kids who have kids almost that old.....and I have the same valve now that I had then.
 
ashadds;n875314 said:
... but I know that if I choose a tissue once , it will fail and I will be definitely choosing a mechanical the second time . That would make it a total of 2 Interventions in my life time . I have never before had any intervention. So its still not a bad gamble hopefully

I don't think that is a bad plan. That will give important life lessons and it's only then a total of two surgeries. Then you will have also first hand on the duration of those valves
 
Well the 4th turned into the 22nd due to the bureaucracy of the VA. But, as far as I know, everything is on for tomorrow at 7:30AM Eastern.

Thanks for all the support. I'll check in afterwards and promptly start bugging pellicle about how to micromanage my INR ;)
 
I was 41 when I had my surgery. At that age, they told me that there was no choice other than to go mechanical. This was 25 years ago, and they may have improved the tissue valves quite a bit since then - but the STILL wear out.

As others have said, warfarin isn't a big problem. Meters are readily available now (I don't think that they even HAD meters when I had my OHS), and management is usually not that big a deal--especially if your INR has already stabilized.

If I had to do it again, at age 41, I would have no problem going mechanical.

I have to struggle and pay close attention to hear the click. You'll get used to it. You just won't be able to play hide and seek with your kids, because they'll probably hear you if you try to hide behind a door.

I hope to read more from you when you're back on this site.
 
Clack,
I'm 50 and just had my AVR operation May 1st. I went with a tissue valve (Trifecta GT, 28mm) and something to keep in mind is that OHS is not the default any longer for follow up procedures. TAVI (transcatheter aortic valve replacement) is now covered in my native Canada and soon will be in Japan (where my AVR was just completed). Comes down to personal choice after weighing all the pros/cons. Given my age I was initially leaning towards a mechanical valve. Best of luck and welcome to the board, as noted a wealth of both network and information. JCG
 
Well, I'm on the other side. Proud new owner of a Cryo-Life Ascending Aortic Prothesis with 25mm On-x valve.

I may do a more extensive write-up on my experience in the Post-Op section; I haven't decided. For now, just a brief summary. The procedure took just less than 4 hours. I was in ICU for about 24hrs. I managed to walk to the cardiac recovery unit. I was there for two days and got back home on Thursday afternoon, the 25th.

The valve is louder than I thought it would be but it's already fading into the background noise often. All in all things, so far, have gone as well as I could ever have hoped for.
 
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