AVR surgery scheduled in 3 days! ANY AND ALL ADVICE WELCOME!!!!

[Guest]

Hello all,

I'm so grateful to have found this group, all be it so late in the game. I am a 43 yr old single mom, and and up for surgery very soon. Scheduled for this Tuesday, Nov 29!!! Yikes. 3 days and counting....Safe to say I'm freaking out, and not comfortable with my choice. In fact, I am agonizing over it, and considering postponing surgery. My AVR is severe/ critical, and I lived with chest pain and symptoms for the past 3 years.

I chose a tissue valve, because I am very worried about the coumadin, as I have always been very medication sensitive, and also about the clicking noise. I hear every little sound at night, and also really small framed( 98 pounds), so I am thinking it will be even louder. I also have problems with hormonal imbalance, and bleeding every month. It's hard for me to believe that there are no side effect of Coumadin/Warfarin.

The tissue valve my surgeon uses is the St. Jude Trifecta GT. I've read here that it's not very quiet either. They also have a cage/stent? around the valve. I'm not sure how this would affect a future TAVR.

The mechanical valve he uses is the St. Jude Regent. I asked about the Medtronic ATM, as it's known to be the "quiet valve", but he doesn't use it. He only uses the 2 from St. Jude. He said he will more than likely reconstruct my aortic root. ? We have done no CT scans, but it seems this is something he routinely does with his patients in order to fit a bigger valve.

So my questions are these: Does reconstruction of aortic root make for a longer recovery? Or cause more scarring? Are there any small framed women out there with a mechanical valve? Has anyone gone through multiple surgeries with tissue valves? If so, would you say it's worth it not to be on the meds?

I'm guessing that with a tissue valve, I would have 3 surgeries. I'm hoping that TAVR would improve in 10 years, but it's all a roll of the dice.

Thank you in advance for any help with this!!!!

 

[Paleowoman]

Welcome to the forum ! You’ve got a tricky choice in front of you due to your age.

I had aortic valve replacement due to bicuspid valve when I was 60. I chose a tissue valve because I didn’t want to be on warfarin and I definitely did not want a ticking noise as I am very sensitive to sound. The valve I got was a 19mm CE Magna Ease valve which is pericardial bovine - it does have a stent but there’s no noise with it. I would NOT be able to have TAVR with it at a future date because the valve is too small for TAVR. I believe, though I may be wrong, that you have to have at least a 23mm valve for them to be able to do valve in valve TAVR. I am not particularly small framed, I weighed 48 kilos (105 pounds) when I had surgery and I’m 5ft 3ins tall. I’m lean but my bones are quite big - at least some of them like my shoulders and legs, though my pelvis is small and probably my rib cage is small. They work out the valve size when you’re in surgery and they can measure the annulus.

Wishing you well !

 

[Juliemoon]

Thank you Paleowoman, for your repsonse. (I did not see my post under my name, and posted again. (Oops) I am very afraid of the ticking noise, but am also not fond of the idea of future surgeries. I am 5'6" and my doctor says he will be able to hear me tick from across the room. I'm considering the On-x too, but would have to go elsewhere for that. I hope you get the best life out of your valve, and continue to be well! Thanks again.

 

[pellicle]

Hi and welcome

I thought I'd quote this (so you get a notification that I've replied, but then go back to answering your earlier questions as guest

...I am 5'6" and my doctor says he will be able to hear me tick from across the room. I'm considering the On-x too, but would have to go elsewhere for that. I hope you get the best life out of your valve, and continue to be well!

well myself I'm not convinced that its all down to the valve being "noisy or quiet" ... I'm sure though that like petrol companies (that'd be Gas to an american, but as its a liquid I prefer not to call it a gas as we also run cars on LPG in Australia, which is actually a gas ... but I digres)

I don't think that there is any evidence to support that one brand is quieter than another and I've never seen any actual study on it ...

I have an ATS (the quiet valve you mentioned) and a specialist I visited remarked "well, you've to a real diesel engine in there haven't you" ... but everything is relative. Standing beside me in a quiet room you can hear it ... I personally "feel" it throb more than hear it Myself I think its more related to scar tissue buildup and perhaps even cardiac adhesion to the inside of the sternum

.. but you know, so what? I tick ... at least I'm alive to whinge about it. My view is that you can get used to anything if you want to, but you can't get used to being dead. Worse the ones you leave behind often can't get used to you being dead either .. so lets avoid you being dead Of course you can talk yourself into a hyper frenzy about stuff if you want to too ... I guess its down to personality type. I'm no the hyper-frantic type.

I chose a tissue valve, because I am very worried about the coumadin

fair enough ... but if you chose it because of the coumadin then unless you actually have some other conditions which medically preclude warfarin (and by the way coumadin is a brand name of warfarin) then you may be making a choice based on wrong information. Plenty of information here.

I'll start with my blog post on the general matter here: http://cjeastwd.blogspot.fi/2014/01/...r-choices.html

But I am happy to answer more specific questions on warfarin (which you'll also find plenty written on my blog)

It's hard for me to believe that there are no side effect of Coumadin/Warfarin.

well with over 50 years of use and a bajillion studies by people desperate to prove its bad, we haven't found much ... but then belief is what religions are based on. If you said "I'm planning to have more children" then I'd steer you towards a tissue prosthetic.

At 43 I'd ask how you feel about a redo-surgery, because you'll probably need two of them unless you die earlier as its highly unlikely that you get 20 years out of a tissue prosthetic but you may. So you may just die before you need your second redo (that would be your third surgery).

The mechanical valve he uses is the St. Jude Regent. I asked about the Medtronic ATM, as it's known to be the "quiet valve", but he doesn't use it.

to my reading the St Jude is a fine piece of equipment and with a proven track record that it will last ... I think that any surgeon who is truly interested in your well being would go for the valve with most runs on the board. That would be the St Jude. I'm quite happy with my ATS and don't want any exchange (and I've had 3 OHS and am on my 2nd valve

So my questions are these: Does reconstruction of aortic root make for a longer recovery?

no I don't believe so ... but he may also want to widen the aortic root to increase the diameter of the valve that can be put in, and maybe put you at lower risk of a tissue build up (called pannus) which can occur for women with smaller diameter valves (usually 23mm is a turn around point).

Are there any small framed women out there with a mechanical valve?

yes, heaps ...

Has anyone gone through multiple surgeries with tissue valves? If so, would you say it's worth it not to be on the meds?

yes ... plenty ... and no NOT ON YOUR NELLIE!!!! I do not wish to "kick the can down the road"

Basically there are so many distortions of the evidence that its hard to even get past them. Fundamentally there are two camps ro tissue and pro mechanical

Myself I don't give a rats arse what anyone has, but if ask ME what I want FOR MYSELF then (and speaking from experience) the following points bear consideration:

• the case of risk on anti-coagulation (blood thinners) is based on the **** miserable qualty of monitoring which is "par for the course" in the old way (and pretty much the standard in the USA). A move to "patient self testing" or "patient self care" in individuals who are not mentally incompetent suggests that the outcomes are far better
• the risk is always expressed in morbidity ... death ... so if you have a redo, and need to be on a pace maker, or have a redo and get an infection and take months or years to heal then that's ok ... you didn't die 60 days after the redo surgery so that's A-OK
• a redo surgery has risks that can not be influenced by you - taking your medication and monitroring your INR (the word for blood testing) is something which is a risk THAT YOU CAN MANAGE ... are you one to wish to have a say in your destiny?

Thank you in advance for any help with this!!!!

you're welcome ... feel free if you wish to have a chat, I'm happy to discuss things if that makes your decision easier.

Best Wishes

 

[Jamieann]

Best of luck with your surgery and decision! I'm 28 (27 when I got my surgery) and went with a tissue valve because I didn't want the complications of being on anticoagulants (ie warfarin) during pregnancy. That being said, I had a stroke several months after surgery due to a blood clot so I ended up being on warfarin anyway. Honestly, I think that for most people, warfarin is nothing to fear as long as you keep up with managing it. I wouldn't even know I was on it aside from taking my pill at 8 pm every night and getting my blood drawn to monitor my INR. I can't speak to the ticking sound as I have a tissue valve, but honestly the warfarin has not been problematic.

 

[MrsBray]

I was 42 when I had my surgery 3 years ago. I have an On-X, and take warfarin. My lifestyle & diet have not changed other than I am more active because I have more energy. I do have a tick that is most noticeable when there is a hard surface in front of me, like a wall or a window. Some people can hear me tick - my doctor (not my cardio or surgeon) thinks it is loud. I've never had anyone tell me they could hear it without me asking them first. Regarding the monthly bleeding - my cycle has gotten exceedingly heavy in the past 4 years - beginning prior to surgery. My mother and aunts all bled heavily in the 5-7 years prior to menopause, so I'm not currently attributing those changes to the warfarin.

I don't think your recovery will be as bad as you imagine it to be. It won't be easy, and if you just take one day at a time you'll get through it and back to "normal" before you know it. You will have to define a new normal for yourself, and that takes time. My surgeon told me I would feel better in about 6 months, but it would take about a year before I was really ercovered. That is, not thinking about the surgery every time I moved or twisted or lifted a heavy item.

Please let us know what other questions you have!

-Meredith

 

[Juliemoon]

Thank you all so much for the replies. I wish I would've found this site a year ago, but it's very comforting to be getting some answers.

MrsBray, I asked my surgeon about the On-X. I was really interested in it b/c of the possibility of less warfarin.....but he dismissed it, and told me it was "mumbo-jumbo". I found that very unlikely since their site says that have used 200,000 of them. It makes me nervous that he will only use one mech valve, and basically means I have less choices. Are you able to take less warfarin with that valve? I can get it, but would have to do surgery in another town, as no other surgeons will take my insurance here.

Pellicle, thank you for the info. I read your blog, and may be slowly changing my mind to mechanical. Just wish I had a choice in the valve.

 

[ForeverThankful]

.......... I am very afraid of the ticking noise, but am also not fond of the idea of future surgeries. I am 5'6" and my doctor says he will be able to hear me tick from across the room.........

Hi Julie!

I'm a 56 year old woman and had my surgery about a year ago. I have a St Jude Mechanical Valve and I'm small framed, 5' 2" and very small boned. I do not hear any ticking from the valve, nothing at all.

As far as the Warfarin goes, it's just a matter of take my pill and test my blood with a home testing meter. The meter makes it very convenient to test and I can test anytime I want.

- Sue

 

[Agian]

Pellicle tells me if you keep your INR in range the chance of an event (clot, bleed) are equal to the general population.

You get used to the clicking, if you hear it at all.

 

[pellicle]

NOTE: we seem to have a duplicate thread running:
http://www.valvereplacement.org/for...avr-surgery-scheduled-in-3-days-advice-needed

 

[pellicle]

Hi

... I asked my surgeon about the On-X. I was really interested in it b/c of the possibility of less warfarin.....but he dismissed it, and told me it was "mumbo-jumbo".

I would tend to agree with that assessment. Its very easy to act like a brand fanboy and say my iPhone is better than your Android equally with valves the situation actually comes down the markting jostling for first place.

The reality is that the top 3 mechanicals are photo finish and the reduced AC therapy (reduced warfarin) is equally applicable to all of them. Research is emerging now that AC therapy is set too high for the needs of valvers (meaning people who only have a valve replacement and not other issues like strokes, AFib ...)

I would expect to see (after the GELIA study was published a few years back) that over time the INR targets will be revised down for all valves.

On-X does a good job of marketing that point ... why? Well they have to overcome the inertia of many decades of surgical preference towards the St Jude for one.

... It makes me nervous that he will only use one mech valve, and basically means I have less choices.

if you look at it another way, you are accepting that the surgeon knows more about valves than you could learn in 2 years of research (not counting the 2 other years of courses you'd need to start really grasping the issues and what they actually mean). its like going to the library ... they pick the books which they believe in their experience readers may like ... you don't get to choose from every book ever printed in english.

I'd say its like comparing Mercedes, BMW and Volvo ... if you just drive one of them you'll be sure it will be a good experience.

Are you able to take less warfarin with that valve?

this is a common feeling, but really to what end? Why? There is zero evidence that maintaining an INR of 2.5 is harmful and indeed as you age may just be a benefit as it may prevent DVT or an other clotting related issue ...

Lastly I just got back in from being out skiing ... it was -5C and I over dressed for the track ... sweated like a pig, even fogged my phone up in my pocket.

My point is that 99.9% of the myths and legend about mechanical valves and warfarin are driven by people who don't have them and by the miserable results of the "Usual Care" of monitoring INR too infrequently ... people brag that "I'm in range and my Dr dropped my INR monitoring to every second month"

its like saying "I live in a small town , so I never look before I cross the road" ... probably you won't get hit by a car ... most of the time....

Anyway, like I said at the start, I don't give a hoot which valve you pick, I just want to give you information from which to make that decision.

Its your call and I'm not you and I don't know too much about you.

If you do go mechanical though there is a lot of help you can find here on getting started in management of your INR ... what it boils down to is your personality type. Are you going to be a good manager or a recalcitrant?

Best Wishes

 

[pellicle]

PS: naturally while I was out skiing I froze to death and bled to death ... cos we all know you have to be wrapped in cotton wool and you feel the cold so much more when you're on warfarin.

... and I drank too much red last night...

 

[pellicle]

while digging out some of my old PDF's for Agian I found this little gem...

Current clinical experience indicates that, if monitoring occurs monthly, only 50% to 60% of INRs measured are within target range, even in the trial situation.
...
In one study, the 52% of those anticoagulated for NVAF who achieved a 6-month period within the target range of 2 to 3 had a significantly higher mean survival and a lower rate of both thromboembolic events (0.8% vs 2.3% per patient year) and bleeds (0.4% vs 1.2% per patient year) recorded as an inpatient diagnosis than those who did not.
...
Risk of life-threatening bleeding complications, including subdural hematoma and intracranial hemorrhage, is increased in those with unstable control....

its repugnant to me that so many clinics want you to be under their care, submit to their management and get vein draws when evidence is piling up that:

1. usual care is responsible for the bad rap that warfarin gets
2. weekly testing (even if you don't do anything because its in range) has significant long term health benefits for valvers
3. self testing costs about $6 a test and you can do it when it suits you (no more waiting in labs)
4. finger stick samples by Point of Care machines (like the coagucheck) are as accurate as labs
5. finger stick samples don't damage your veins like regular blood samples do

to me the lab model is built around a premise that the patients are elderly (time on their hands) and mentally unable to manage themselves.

I raise the bird to that lot!!

 

[Agian]

How does 0.8% and 0.4% compare to the general population?
I reckon we can assume the majority in the study were elderly.

A 'bleed' and 'life-threatening bleeding complications' aren't necessarily the same thing.
(Although blood in my urine would scare the crap outta me)

You could reduce the risk of clots even further by running a higher INR.

 

[DachsieMom]

Somehow I responded to this same question in another thread so pasted it below.
Hi! I had surgery at 43, am very small framed female (99 lbs, 4'10"), and have a St Jude. I don't hear the ticking most of the time, but do hear it at night or when it is quiet. I find it comforting (although right after surgery, it occasionally skipped beats - not as comforting! But that regulated for me). My surgeon really trusted the St Jude, and perhaps it also may have been the one that fit me best. I have a 21mm with connected aortic conduit (Dacron, I believe). For my body size, my surgeon said that was quite large - he was pleased to get in a larger sized valve. Coumadin is not a big deal for me. My surgeon did mention that I felt more pain initially because being so small, they needed to spread me open wider to have space to work. He also said younger patients feel more pain. However, you will barely remember it later. Just make sure you ask for extra pain meds before they remove chest tubes (I had chest tubes from the pediatric unit, which were apparently still too big for me).

If you go mechanical,I would try to home test. So much easier. You have to wait three months, and for me it costs more, but it saved my veins, and with two young children and a job, I don't have time to go to a lab weekly. I also like the immediate feedback.

 

[pellicle]

How does 0.8% and 0.4% compare to the general population?
I reckon we can assume the majority in the study were elderly.

I guess that it always is the elderly, valvers are such a tiny portion of the folk on warfarin, and valvers under 50 an even smaller portion.

In the paper emailed to you they used the term "age related" when talking about the stats and the normal un-anticoaglated population.

None the less I'll take 0.8% risk over 2.4% any day

 

[honeybunny]

Hi, Julie. I had a tissue valve put in a year ago at age 61 for the same reasons you mention...anti-coagulant therapy and ticking. In fact it was Paleowoman who helped me make my decision because her concerns were the same, as she states in her post. But (and this is a big but) I am almost 20 years older than you and am probably facing only one more surgery. If I had been in my 40s I would have more likely gone mechanical. Plus, as was posted here, a tissue valve recipient can also end up on Coumadin.
I know it's a tough decision with your limited choices regarding mechanical valves. When you think about your choices, which one are you more comfortable with emotionally? Yes, you need to be logical about it, but I found that once I decided to go tissue I felt relieved that I'd made the right choice for me. It has to do with regret, and the stress arising from that emotion. when I conversed with Paleowoman, whose situation was similar to mine, I gained confidence that tissue was the right choice...for ME. And I'm the one who has to live with the choice.
I hope I didn't muddle things up for you. You will make the decision that is best for you at this point in your life. Wishing you the best for surgery and recovery.

 

[Juliemoon]

Hi honeybunny,

Thank you for your response. At first I thought I was more comfortable with my choice of tissue valve. A friend directed me to the askapatient.com to look at patient comments on warfarin. and coumadin. I realize everyone is different, but reading those comments was scary! I've always been medication sensitive, so this is what first led me to that choice. I figured that facing 2 more surgeries may be better than living with such bad effects. But that's hard to say when I haven't been through the first one yet. Now, after chatting with a few people on here, I'm considering changing over to mech, but still ruminating.

Many thanks to everyone for all the info.

 

[pellicle]

...Now, after chatting with a few people on here, I'm considering changing over to mech, but still ruminating.

Many thanks to everyone for all the info.

Julie
Ruminate away and keep in mind there are no wrong choices. Only you need to be happy with your decision and it does not have to be based on reasons you may be able to articulate.

Best Wishes

 

[Agian]

I guess that it always is the elderly, valvers are such a tiny portion of the folk on warfarin, and valvers under 50 an even smaller portion.
In the paper emailed to you they used the term "age related" when talking about the stats and the normal un-anticoaglated population.
None the less I'll take 0.8% risk over 2.4% any day

I didn't realise you emailed the articles to me, until this morning. Thanks!!!

GELIA: '... the incidence of moderate and severe TE and bleeding complications was comparably low in all INR strata and more or less within the so-called background incidence reproted for an age-related "normal" population.'