Operation #2

[mick1807]

Hi, I’m a returning member. Not that long ago I was on here regularly taking in information which helped so much with my first operation.
That operation to repair my aortic valve was only 14 months ago (I was age 40) and all went to plan but have just been informed my last eco showed bad results where my heart was enlarged again and the leak becoming severe again. Hard to take and way to close together to have back to back open heart surgeries. (Age 42 now)
Anyway, only solution is open heart again. This time my choices are mechanical valve or the pigskin.

initally I really pushed for the repair because I didn’t like the thought of mechancial valve and the lifelong medication plus blood tests that go with it. (I know of home testing). Or the worry day to day of where my inr levels might or might not be at. From an outsider looking in it feels to restricting and stresssful living life stressing over inr levels. (I am a bit of a hypochondriac)

Nor was I a fan of the oink oink valves as I’m very active and young and that would require redo’s down the track but would love living a stress free life not having to worry about other issues. I did enjoy the 14 months of thinking all was sweet and was feeling good.

Anyway, Neither options are attractive.

my cardiologist was leaning towards the pig skin valve as he said yes I will probably need 3-4 redo’s over my life but the redo’s are much more advanced and simpler than what they use to be as they do it through the groin.

So just wondering besides the redo’s is there any other negatives to this option?

 

[pellicle]

So just wondering besides the redo’s is there any other negatives to this option?

you've pretty much summed it up ... the redo's ... each of which will leave you worse off because as well as recovering from the surgery you'll also need to recover from the loss of health associated with the decay of the next valve.

You play up (what are in reality) the insignificant issues of INR management but play down the real issues of redo surgery, which gets more complex each time and which can leave you with significant health reduction. For instance while I'm sure that everyone here on a pacemaker would prefer not to be, they do have a negative impact on your life. Each subsequent redo will increase the chances you'll be in that group. Then there is hospital acquired infections and the possibility you get one which is quite harmful long term.

Don't be dreaming too much about "through the groin" stuff and ask your cardiologist hard and serious questions about how long they last, how many can be done before a through the chest option is the only next step.

At 40 I'd expect you'll get 10 - 15 years from a tissue valve (myself I wouldn't have "pushed hard" to get my way, back then because I've always taken the view that my surgeon knows better than me), so that allows you to defer the decsion till your mid 50's ... whish isn't a bad thing BTW.

I wish you all the best with your decision process

 

[rakesh1167]

Hopefully pellicle will reply to this ...

 

[rakesh1167]

He beat me by few seconds..

 

[mick1807]

Hi Pellicle. Thanks for the reply and great answer. I have a meeting with the surgeon shortly so will definitely take his advice and learn more about the pros and cons of both. For example I wasn’t aware of the decrease health with the minimal surgeries. My cardiologist basically played down the redo’s by just saying you can put a valve, into another valve, into another valve and so on keeping things healthy at all times. (That’s how I took it as simply as that anyway).

My hypochondriac mindset is probably what worries me most about ongoing management. I like things done and fixed, then all I need to worry about is my 6 month cardio check ups. Might have to work on my mindset.

 

[pellicle]

Hi

... For example I wasn’t aware of the decrease health with the minimal surgeries.

let me clarify that as you've mistaken what I've said (probably my communication lacks)

• tissue prosthetic valves of all type become incompetent by degrees, you loose capacity over time. It is non linear and increases.
• this may at first not be observable by you as symptoms but only by measurements like Doppler echo
• they will leave that valve in until the risk of death from the valve is equal to or close to the risk of death by surgery (basic risk analysis stuff)
• so when you are slated for a redo you'll be of degraded fitness and health because of that
• as you age the work required to regain that increases, what may have taken a year of training to recover in your 20's will take 2 or 3 years to recover in your 50's

This is what will happen with a tissue prosthetic, how pronounced it is depends on your activity. Couch potato not so much, active sporting person will suffer worse (ironically its often them who are against warfarin).

The TAVI valves are designed for those who are so frail that regular OHS is too risky (myself I think that's a bad category to be in), and accordingly "durable" means something different (for someone who has a short life expectancy. I understood that 5~8 years is about right for the "TAVI and than a single valve in valve" redo which will last less time because (being stuffed into the hole) it has a smaller valve diameter.

As I mentioned a tissue prosthetic can reliably be estimated to give around 15 years (some report 20, but it is not the statistical norm .. some win at the casino too , but most don't)

My cardiologist basically played down the redo’s by just saying you can put a valve, into another valve, into another valve and so on keeping things healthy at all times. (That’s how I took it as simply as that anyway).

cardiologists spend their time in the main talking to patients much older than you ... thus the generalised rehearsed lines they repeat are aimed at that. Don't expect that in your short consultation (of how many that day) they've given you detailed specialised attention

My hypochondriac mindset is probably what worries me most about ongoing management. I like things done and fixed, then all I need to worry about is my 6 month cardio check ups. Might have to work on my mindset.

agreed ... but the reality is "nothing is done and fixed" ... you know ... like that repair or the next redo...

disclaimer:

Naturally (for the readers who are not adults) the above is my own opinion and my own life experience, others may have different experience and others may say "you have to make your own decisions" (while not offering you a shred of information with which to make your own decision). Any gun percieved to be held to your head by me is non-existent ​

Best Wishes

 

[pellicle]

He beat me by few seconds..

sorry mate ;-)

 

[pellicle]

some light reading

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3405794/

 

[pellicle]

I know that its popular to assume that being on Warfarin means that a paper cut will cause you to bleed out:

but the reality is that you may end up on warfarin even with a tissue prosthetic (or a TAVI) (say for instance if your sugery or your redo surgery (but this is now your first redo) triggers A-Fib). There have been posters here who have taken a tissue valve to avoid warfarin and ended up on warfarin ... statistically I think its something like 10%

Further while a mechanical DOES NOT gurantee you avoiding a redo, any event which would trigger a redo in a mechanical would also trigger a redo with a tissue prosthetic.

I recommend also a browse of this:
http://chicagoheartsurgery.com/veronika-meyer-climbs-everest-after-heart-valve-surgery/

yep ... she had a mechanical

 

[Warrick]

I had a mechanical at 39 , and rather than pining over valve choice before the op I was second guessing myself after the fact , which in hindsight was the better way to be.
A mechanical is by no means a gurantee of no more surgeries but its more realistic than tissue as said.
I have recently found out I have the likelyhood of another valve crapping out so will end up twin engined, and a second surgery is something I dont take likely so I wouldnt want to set myself up for a third or even fourth.

Im a heavy mechanic so plenty of cuts and scrapes, I find when I cut myself looking at the bleeding I think is that it? I find its sometimes the pin prick from self testing that bleeds more than a cut... and I still blade shave.
I have found inr is not like a roller coaster going up and down day to day so theres no worrying about it needlessly, I do have tests where what I expect it to be it isnt, but I just go “oh” manage my dose and carry on.
sure you do worry about it to start with and Id bet everyone does but with time and gaining knowledge on what level dosing changes your inr you quickly can become empowered and you control it not the other way around.

Was your valve bicuspid? As the potential for aneurysm in the future may cause another OHS no matter what valve you chose now.

 

[mick1807]

Hi Warrick. Thanks for the reply. Yes it was a bicuspid valve & there were no other issues. After my first surgery it all went well so I’m shocked to be having to go under in 14 months time but I’ve come to terms with it just is what it is and that’s the cards I’ve been dealt.

With the INR it’s not even the cuts in worried about (I’m pretty careful) it’s all the “episodes” I read people have. Diligent people who appear to be careful but there’s always a time when something happens. I don’t want to be sitting here thinking I’m sweet and then bang I have a stroke or something like that.

I guess not knowing is the worst bit as I really have no knowledge of what INR numbers mean, how to control them and don’t want to stress not knowing if I am or aren’t in range.

 

[Paul1972]

Hi Mick , I had a aortic repair first then a redo operation 11 months later to a merchanical , I have to say inr management has been no promblem at all to be fair . I was back on a building site within 10 weeks of second op and I feel good with all that , the only real problem I’ve had was the noise of the valve at night which is for me been hard to adjust to . I’ve had what you mensioned a few double vision episode to deal with but that could be related to something else not my valve. I must say my surgeon didn’t even consider it ask second time he said if the repair fails it’s a merchanical next time , I just trusted and went with his decision. All the best Paul

 

[mick1807]

Hi Paul, thanks mate, love these positive stories. Really need to hear them now.

Do you home test or go to a clinic, and how often do you test?

since my first surgery I’ve had migraine type blurry eyes about once a week that last 30 min and then clear up. Also get a strong pulse thumping in the side of my head & my eyes kind of zap (hard to explain) after any sort of strenuous exercise. Plus I get irregular beats where my heart kind of pauses and then does a quick double beat to catch up so I’m kind of hoping the next surgery will clear some of these symptoms up.

 

[pellicle]

Mick
I think you've either been badly misinformed or perhaps misunderstood some things.

if as you say above you were BAV then BAV is strongly associated with aneurysm later. Indeed my 3rd operation (my first was BAV repair at like 10) was to address a large aneurysm and also fix the valve which was about 20 years old.

the irregular heart beat is (as I understand it) more common but more commonly noticed by us who've had heart surgery and pay attention to it

I understand that you don't know much about INR management but it pretty simple (indeed I was blisfully ignorant of it before I needed to learn about it. About 4 years back I wrote up this blog post because I found myself saying the same things and I hoped it would act as a reference (which it has).

http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

I think you've misunderstood what you've read here, one doesn't just sit around and "bam" have a stroke ... that's just not how it works.

Anyway IF you need to skill up on INR management then there are plenty of people here who can help you (and its really not that difficult). The only important thing is to measure weekly and take your pills.

If you feel you want to have a chat about all these things I use skype or whatsapp so we can talk if that would help you cover more ground and bounce ideas around.

Bottom line is that (as I said above) a tissue prosthesis will get you down the track further and now that its evident you are a BAV patient then its entirely possible an aortic aneurysm may be in your future too, thus driving another operation. Its NOT a certainty, but a greater likelihood. so talk strongly with your medical team and don't let them brush you off ...

PM me or email me at hotmail (username there is ... well you know, pellicle)

Best Wishes

 

[pellicle]

If you cardio doesn't now this, then change to one who does

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3503270/

 

[Paul1972]

Hi Mick , I now self test once a week at home and buy my own strips, my clinic wanted me to test every 12 weeks as I’ve been in range most of the time, but that was way to long for me to wait. If i hadn’t found this foram and all great information the members put on here especially Pellicle I would proberly still be going to the clinic every 3 months !!. Best wishes Paul

 

[user 16827]

Hi MIck

The aneurysm advice is spot on, you need to factor this in,

It's easy for me to say this but the INR management is very simple, if you home test
you can dose yourself once you are up and running and adjust accordingly

I cant guarantee against future OHS but ill take my chances with a mech valve & warfarin rather than risk all
the associated possibilities with numerous redoes

Good luck with it all

 

[LondonAndy]

Hi Mick

I had a mechanical aortic valve at age 48, as apart from that being the surgeon's inclination, right from the outset my view was that I wanted to minimise the number of times I have open heart surgery in my life. I don't play contact sports or do other activities where I might get cuts and bruises anyway, so I considered the risks of warfarin to be low. My mother had a tissue valve and she was put on warfarin quite quickly, to minimise stroke risk. (She is now on one of the new type of anticoagulants, but those are not suitable for mechanical valves).

I can honestly say that, whilst yes there was a learning period at the start and things took a little while to settle down with my warfarin dose, it did not take long to become a complete non-issue for me. I was lucky to live in the UK, where a patient who is capable of using a hand held meter and doing finger prick tests is strongly encouraged to self-test and indeed to manage their own dose, with the support of a clinic when needed. This way of managing it has a major reduction in complications like strokes.

I am writing this by a pool on vacation, my trusty CoaguChek XS meter in my luggage. I test weekly, but I eat and drink what I want. Diet* seems to play little part in my INR level - what makes more of a difference is if I get a cold, or am on antibiotics, and then there can be a more significant change very quickly.

* It is possible that diet is more significant for some people here, but I haven't seen anyone post about problems with that. If you like your leafy green vegetables or other things that can have a slightly larger effect on INR, then adjust your warfarin dose to continue with them, though with things like cranberry juice I think more caution may well be needed.

This morning's test on my meter showed an INR of 3.8. My therapeutic range is 2.5 to 3.5, so I am a little high but it is no biggie. I will take 3mg less warfarin today and then resume normal doses from tomorrow, and retest in 3 days time to confirm I am back in range. Why is it high? I suspect that it is a combination of much warmer weather than there is at home (which is always satisfying!) a fairly significant change in diet. Food here is great!

I had my fourth annual checkup for my valve last month, and there has been no loss of efficiency, or whatever it is they measure, so next appointment will be in a year's time.

 

[tom in MO]

Although BAV repairs are possible, it's not routine. Of repaired BAV, 10% don't last 2-years and the rest fail in 10 years (Cleveland Clinic's marketing data.)

Since your surgeon and cardio allowed you to push for this option, which may or may not have been in your best interest, you might want to think about a new surgeon and/or cardio or at least some second opinions.

As Pellicle has stated, replacing biological valves 3-4 times may not be a good path, each replacement will leave scar tissue which makes the next one a little or a lot more complicated. The TAV procedure or valve-in-valve replacements may or may not become routine. Don't bet your life on future technology.

 

[mick1807]

Thanks for all the replies guys. Certainly a lot to take in and it’s given me plenty of questions to ask my surgeon when I see him.