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Timmay

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Joined
Apr 22, 2022
Messages
11
Hello to all! Very happy to have found this place. Special thanks to pillacle, Superman, and Chuck C (his long 25-page post was super helpful to me).

I'm an active 50yr old that has exercised all of his life. Running, lifting weights, hiking, bike riding, skate boarding, bowling, etc (even Jiu-Jitsu for a little while back in the day). As of 4 months ago I could free-weight bench my own body weight 10 times with good form. A year ago I was running 10-min miles easily. My bicuspid aortic valve was found about 3 years ago (by accident; but thank the good Lord! Praise!). Fast forward and now I am severely stenotic. I'm asymptomatic compared to what the docs usually see, but I am definitely showing symptoms (fatigue, taking extra breaths on long walks, can't run anymore, much less endurance working out, etc.). AVA is 0.92cm2 and the gradient is well over 40. Had my cardiac cath yeterday which yielded great results: No CAD, No blockages, and really only 1 small restriction that "doesn't need any work" (another blessing). Although they are recommending statins as a preventative.

Although the main TAVR surgeon did my Cardiac Cath (He is Awesome!), my wife and I talked to the SAVR surgeon while I was recovering from the cath. We've setup Aortic Valve replacement for next month (May) [MedStar, Washington DC hospital]. Woohoo! I need to get this done and I'm psyched that I will have a second chance at life instead of surprisingly falling dead one day (doh!). Again - praise to God; He has helped me through so so much. And what a wonderful technological day and age to be alive - to have options like these.

I had already done a ton of research so I literally said to my surgeon "I either want SAVR with an On-X mechanical valve or a Ross Procedure. What do you think?". Man I love this guy. He specializes in the Aorta and has done thousands of valve replacements. He primarily installs the On-X valve for mechanical (woohoo!) or the Inspiris Resilia for surgical tissue valves. I am planning for 40 more years of life, and I like the *potential* of one and done - so mechanical it is for me (no to tissue, and no to Ross). Yes, I do understand that "one and done" is actually a wish more than a reality, but hey, I'm going for it! (and also crossing my fingers for the Proact Xa study).

Thanks for letting me share and Thanks even more for this board. You all have to know that there are plenty of "lurkers" like me that don't post and get huge value here until that day comes. That day has come for me. Thank you so much.
 

pellicle

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Hey and welcome aboard.

Yes, I do understand that "one and done" is actually a wish more than a reality, but hey
personally I think its not so much as only a wish but a bet that you can place with greater certainty (of course not 100%) than any other choice at your age. As I often say SVD is real and well quantified, so in the exchange of valvular heart disease for prosthetic valve disease its best to make a choice which you yourself can have a hand in managing. Tissue prosthesis disease is managed only by reoperation (assuming you live longer than 15 years after surgery), at least with mechanical you can manage the valve disease with medications.

So here is hoping for an uneventful recovery and do drop back with any questions on managing the INR when the time comes (as I'm sure you will)

Best Wishes
 

pellicle

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oh, and as a hasty PS I would recommend that you have a close look at the data in this post and decided if you want an On-X or a St Jude (I btw have an ATS)


lastly just be cautious of the corporate kool-aid surrounding the On-X lower INR protocol, as few with sufficient experience (or ability to carefully analyse the On-X trial) support that lower INR protocol in the long term.

Best Wishes
 

slipkid

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Jun 12, 2014
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Location
Schwenksville, PA, USA
No CAD, No blockages, and really only 1 small restriction that "doesn't need any work" (another blessing). Although they are recommending statins as a preventative.
Statins are far from the innocent wonder drug that they are represented as. They can wreak havoc on your body (they did so with me). IF YOU DO NOT NEED TO GO ON A STATIN DON'T BOTHER. WHY RISK THE POTENTIALLY DAMAGING ADVERSE EFFECTS FOR NO REASON??. They are the HUGE MONEY MAKERS FOR the pharmaceutical history. Drs (& the AMA) push them like candy for the sake of profit. It's disgusting.
 

Chuck C

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Dec 5, 2020
Messages
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Welcome to the forum Timmay!

I'm glad to hear that my post was helpful to you. If you have read through to the most recent updates, you will see that I recently passed the 1 year mark and have gradually returned to be very physically active again. It sounds like your valve has started to slow you down and just be assured that once you are recovered that you almost certainly will be able to return to the activities that you were doing before you experienced symptoms upon exertion.

AVA is 0.92cm2 and the gradient is well over 40
Good for you that you are getting your surgery soon. I think that one of the biggest mistakes that some make is to wait too long. In my view your timing is ideal. You are asymptomatic, in terms of the classical symptoms, but you do have symptoms upon exertion, in that you take deep breaths now on walks and can't run anymore. You are also severe based on the metrics from your recent echo, so it is time and no reason to wait for symptoms to get worse.

And what a wonderful technological day and age to be alive - to have options like these.
You have a great attitude and this will be a big help in getting through your procedure and recovery.

I am planning for 40 more years of life, and I like the *potential* of one and done - so mechanical it is for me
I think this is a good decision, in that you want to be one and done. As you probably know from reading my thread, I'm about your age and after bouncing back and forth with leaning tissue and then mechanical, I ultimately chose mechanical for the same reason that you did. I want to be one and done.

Yes, I do understand that "one and done" is actually a wish more than a reality, but hey, I'm going for it! (and also crossing my fingers for the Proact Xa study).
From all accounts the On-x appears to be an excellent valve. However, I would agree with Pellicle and really take a hard look at whether you want to have a target range as low as 1.5-2.0. I was debating going with the On-X vs the SJM and had a consult with my surgeon to work this out. He indicated that if I chose the On-X he was going to be adamant about me not going under 2.0 for the low end of the INR range. I've studied up on this a lot and I agree with him. Going under INR of 2.0 for the On-X remains controversial among cardiologists and surgeons for good reason. Anyway, you've got plenty of time to read up on that and make your decision about the range that you want. There are also threads about that very topic on this forum.

Please keep us posted on your procedure and your recovery. Best of luck!
 

Timmay

Member
Joined
Apr 22, 2022
Messages
11
Thank you all for the advice, information, pointers, etc.
Last week was pretty crappy so I’m just getting back here now. I was in the ER less than 2 days after my cath with severe chest pains. After EKGs, bloodwork, CT, etc … it was determined that it had nothing to do with my heart. But yet here I was with a group of ninjas punching their way out of my chest … especially in deeper breaths. CT and leg sonogram ruled out any blood clots. Best guess at this point is COVID. I had COVID 3 weeks earlier and apparently some people will present 2-4 weeks AFTER recovery from COVID with major chest pain, heart palps, etc. Given that the CT showed a small subpleural density where my pain was … and that density wasn’t there 2 months ago on my previous CT … and it looks like the multitude of densities that severe COVID patients have … well, this was probably a COVID after effect. Not making this stuff up - I know pain and this was it. Met with my cardiologist the next day and he agrees. Talked to my cath surgeon too and yea, not cath related.

I’m still moving forward with the On-X valve. Talked to my surgeon about a bunch of things this past Tuesday and I’m still set. I did spend a fair amount of time talking to him about tissue vs mech (based off of my friends and family being split on what they think my choice should be - I took a poll, lol). My surgeon has a lot of experience with the Inspiris Resilia and he does like it. But we agreed that there’s not enough data on longevity in humans, and that my activity level may cause increased degradation rate of any tissue valve, and the tissue valve “should” last 15+ but could last as little as 5-7. So his recommendation for me is mechanical. More surgeries = Lower life expectancy (specially in later years when the tissue and TAVR tissue are worn out). He’s my age so I asked him what he’d do and he said he would choose mechanical for himself … and this is coming from a talented surgeon who has installed tons of surgical tissue valves that he really likes. That speaks volumes.

The Proact Xa trial to use Eliquis may never pan out and that is fine. Im not banking on it. Heck, it’s not even registering as a true hope in my brain. But I’d be kicking myself later if it did pan out. The On-X valve is definitely a durable valve that will work great and I’m cool with that. A little better than “great” or a little worse? Great is great. It’s not a ball in a cage (lol)

And thanks so much for the info on the INR. I was reading here already about that so the reminder is great and, yea, I’ll definitely be back with questions. If you have a particular place I should start with developing a REALISTIC understanding of how I should manage it on my own, let me know. The main thing I am seeing is “Dose the diet. Don’t diet the dose.”

Any thoughts on best INR monitoring machine?
Thanks again everyone.
 

AZATADINE

Well-known member
Joined
Aug 30, 2021
Messages
80
Statins are far from the innocent wonder drug that they are represented as. They can wreak havoc on your body (they did so with me). IF YOU DO NOT NEED TO GO ON A STATIN DON'T BOTHER. WHY RISK THE POTENTIALLY DAMAGING ADVERSE EFFECTS FOR NO REASON??. They are the HUGE MONEY MAKERS FOR the pharmaceutical history. Drs (& the AMA) push them like candy for the sake of profit. It's disgusting.
Played hell with my liver enzymes.
 

Chuck C

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Joined
Dec 5, 2020
Messages
1,512
Any thoughts on best INR monitoring machine?
I have the Coaguchek and it works great. Most others seem very happy with theirs as well.
If you have a particular place I should start with developing a REALISTIC understanding of how I should manage it on my own, let me know. The main thing I am seeing is “Dose the diet. Don’t diet the dose.”
I expect @pellicle will be along to steer you towards the best place to start soon.
 

pellicle

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Nov 4, 2012
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Queensland, OzTrayLeeYa
Hi

(thanks for the mention @Chuck C , may not have noted this post)

So, last question first:

Any thoughts on best INR monitoring machine?
well I personally only have experience with the Roche Coaguchek XS, however I've been involved with a sharing few other experiences with the Coag-Sense (CS) machine. There is divided opinion on that machine and so just take this as me reporting what I know.

The XS is made by Roche, a huge corporation, but the (CS) isn't backed by that pharmacological experience nor corporate reputation (which I assume is pretty important to them) and is used widely internationally. I have found the CS method (by report only) sort of hobbyist in nature and a bit quaint (IMO). I understand it requires a transfer (capillary, glass) tube to move the blood from the finger to the machine. I suppose this makes it feel more "lab like" ... but I can't really say why its a benefit.

Most people get very accurate (meaning consistent with the Lab draw) results from the XS (I know I do) meanwhile one or two here report that they don't. Additionally those people report that they get better agreement with the Lab, however their reporting (to my recollection) seems to be a bit patchy.

I can report is that a fellow member here (who I discuss INR matters with) has had both. He started with the CS and was happy enough in the first months, (cutting a months long saga short) he then he got another lab draw and it was 0.6 INR units below the lab. Then he got an XS and found it was 0.1 INR units different from his lab. He contacted CS, they sent him another machine and he again gets 0.6 INR units difference while his XS has remained 0.1 units different from the lab.

Let me be clear here, 0.1 units is effectively the same, 0.6 units is a clinically significant difference. I would also like to vouch for the person and say to the best of my knowledge his testing process would be "best practice" not least because of what he does for a living (which I won't say as everyone deserves some privacy).

In terms of the consumables the CS is fraught here in Australia while the XS is simply available (and we don't have that funny FDA ruling making the XS only for doctors).

Have you asked your surgeon which he would recommend (or perhaps your cardiologist)?

Me? I'd vote for the XS as I've had mine 10 years, dragged it around the world and done tests everwhere I've travelled to in the last 10 years (which would include Finland, Sweden, UK as well as different locations in Australia which btw is quite comparable to the continental USA).

1651797393955.png


Last week was pretty crappy so I’m just getting back here now.
I bet ...

on this point

I’m still moving forward with the On-X valve. Talked to my surgeon about a bunch of things this past Tuesday and I’m still set.
I'm curious if you spoke about other mechanical valves with him? I mean not that I have any vested interest any more but why are you focused on the On-X? I'm curious. I have an ATS as I mentioned above (not sure if you saw this above post I made)


I'd suggest reading it if you haven't.

The main thing I am seeing is “Dose the diet. Don’t diet the dose.”
agreed ... and indeed that seldom really needs much dose adjustment, as I often say "keep a steady hand on the tiller"

I'm not sure if I've sent this before but it is no harm to add it in here anyway (I hope it helps)


Best Wishes and I hope you have an uneventful recovery after the sugery
 
Last edited:

DJ-Rae09

Member
Joined
Apr 26, 2022
Messages
19
Hi Timmay,

I too have AVR coming up and have chosen the SJM valve. I'm 42 so the mechanical valve option was the only option in my opinion given my age and don't want to have reoperations in future.

Good luck with you operation!

Cheers,
Tim.
 

TGM

Member
Joined
May 1, 2022
Messages
16
Thank you all for the advice, information, pointers, etc.
Last week was pretty crappy so I’m just getting back here now. I was in the ER less than 2 days after my cath with severe chest pains. After EKGs, bloodwork, CT, etc … it was determined that it had nothing to do with my heart. But yet here I was with a group of ninjas punching their way out of my chest … especially in deeper breaths. CT and leg sonogram ruled out any blood clots. Best guess at this point is COVID. I had COVID 3 weeks earlier and apparently some people will present 2-4 weeks AFTER recovery from COVID with major chest pain, heart palps, etc. Given that the CT showed a small subpleural density where my pain was … and that density wasn’t there 2 months ago on my previous CT … and it looks like the multitude of densities that severe COVID patients have … well, this was probably a COVID after effect. Not making this stuff up - I know pain and this was it. Met with my cardiologist the next day and he agrees. Talked to my cath surgeon too and yea, not cath related.

I’m still moving forward with the On-X valve. Talked to my surgeon about a bunch of things this past Tuesday and I’m still set. I did spend a fair amount of time talking to him about tissue vs mech (based off of my friends and family being split on what they think my choice should be - I took a poll, lol). My surgeon has a lot of experience with the Inspiris Resilia and he does like it. But we agreed that there’s not enough data on longevity in humans, and that my activity level may cause increased degradation rate of any tissue valve, and the tissue valve “should” last 15+ but could last as little as 5-7. So his recommendation for me is mechanical. More surgeries = Lower life expectancy (specially in later years when the tissue and TAVR tissue are worn out). He’s my age so I asked him what he’d do and he said he would choose mechanical for himself … and this is coming from a talented surgeon who has installed tons of surgical tissue valves that he really likes. That speaks volumes.

The Proact Xa trial to use Eliquis may never pan out and that is fine. Im not banking on it. Heck, it’s not even registering as a true hope in my brain. But I’d be kicking myself later if it did pan out. The On-X valve is definitely a durable valve that will work great and I’m cool with that. A little better than “great” or a little worse? Great is great. It’s not a ball in a cage (lol)

And thanks so much for the info on the INR. I was reading here already about that so the reminder is great and, yea, I’ll definitely be back with questions. If you have a particular place I should start with developing a REALISTIC understanding of how I should manage it on my own, let me know. The main thing I am seeing is “Dose the diet. Don’t diet the dose.”

Any thoughts on best INR monitoring machine?
Thanks again everyone.
We use the Coagucheck and previously used the INRatio. I like the Coagucheck better but home INR, while convenient, is not without difficulties. Manufacturers claim that up to a 30%difference between lab and home monitor results is still considered correlated. 30% is a huge difference but Roche has been willing to replace the monitor when I was uncomfortable with results that were only 25% off. I am using this for my 19 year old son whose been on ACT for 15 years.
 

pellicle

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I am using this for my 19 year old son whose been on ACT for 15 years.
hey, you're probably an old hand at measuring INR now, but just because you mention the 25% differences (which would have an "actual" inr of 2.5 showing as 3.1 or 1.9) I thought I'd ask if you know of and are aware of:
  • the 15 second rule in sampling
  • the importance of a good sample size (not barely filling the cavity)
I have seen these influence my results and when I started was getting something like 0.5INR points variance from labs, but when I followed those rules strictly and kept my time to under 10 seconds (often 5seconds) I got much more consistent to lab results.

Not sure if this helps:

Best Wishes
 

TGM

Member
Joined
May 1, 2022
Messages
16
That is a good reminder. We have had some issues with lancets and getting a large enough sample in a short amount of time. Now that my son is home from college, I can observe his technique more closely. We switched to the self contained lancets as opposed to the pen and that has helped him get a larger sample.
 

TGM

Member
Joined
May 1, 2022
Messages
16
give the rubber band a go ... its saved me many a missed strip and kept times to always under 10 seconds
I forwarded your video to my son. Thanks again for the tip. I never thought of doing that and none of his providers suggested it either. Makes sense though
 

pellicle

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I forwarded your video to my son ...
dunno if he's seen the fuller blog posts (which that video sits in), but in case he hasn't:

Its got a lot in it, and while its not comprehensive I reckon its a good starting point for further readings. I wrote that back in 2014, however my entire blog history of INR related posts is here, if that is any use to him ;-)

I don't think anything in that above blog post needs revising yet...

Best Wishes
 

Timmay

Member
Joined
Apr 22, 2022
Messages
11
Some potentially crazy questions if anyone remembers ...

1) When did any of you "work from home" desk jockeys actually start returning to work (part-time from home)?

2) Is it too optimistic of me to think that I could be lounged back in a recliner (or on sofa), laptop in my lap, and just low-stress computer work 2 weeks after surgery (part-time)? I'm a developer so I just click-clack on a keyboard. I was thinking I might be able to work for an hour. Sleep. Work for an hour. Sleep. Lather, Rinse, and Repeat.

3) @pellicle - You mentioned somewhere to pickup a CoaguChek via Ebay. Is that where you got yours? New or used? I see plenty of used ones for like $150. I was thinking that it might be neat to get one now ... and experiment with it before I have surgery. Get some practice.

FWIW, I'm back to working out and making gains quickly (as always). Trying to get some more muscle back on me prior to surgery. I had stopped shortly before my Cardiac Cath ... and then that procedure punched me more than I anticipated (not sure why?!). I'm still bruised down there! That said, my stenotic BAV symptoms are definitely coming on. I'm feeling my 2-mile walks now ... taking some deep breaths during the walk (don't have to stop yet), etc. So this valve is really ready to be cut out.
 

pellicle

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Hi

Some potentially crazy questions if anyone remembers ...
well, as they say, the only dumb questions are those not asked.

1) When did any of you "work from home" desk jockeys actually start returning to work (part-time from home)?
I didn't but then realistically I wouldn't have been real productive. My employer at that time was super helpful with time off. To be honest I wouldn't have been productive because in my case I suffered a bit from "pump head" (but then my surgery was lengthy and my 3rd

2) Is it too optimistic of me to think that I could be lounged back in a recliner (or on sofa), laptop in my lap,
I personally couldn't stand that position and was happier sitting properly or lying properly.

the rest of those is unrealistic and based on you never having had this sort of whack out before


3) @pellicle - You mentioned somewhere to pickup a CoaguChek via Ebay. Is that where you got yours? New or used? I see plenty of used ones for like $150.
mine was bought new (I live in Australia as you may have seen) and there are essentially none around at significant discounts, unlike the USA. After 10 years of (on average slightly more than) weekly use and quite some number of international flights (always in my carryon) its still functioning fine.

I believe they either work normally or just don't.


I was thinking that it might be neat to get one now ... and experiment with it before I have surgery. Get some practice.
well I can't see that it would help, nor would it hurt ... so if you want to then "why not" I say.

I will say just go easy on the INR measurements and take prudent care of over adjustments in INR ... for the first months just follow the directions of your INR carers. I assme you're read my blog so I'll iterate again "Keep a Steady Hand on the Tiller"


...Trying to get some more muscle back on me prior to surgery. I had stopped shortly before my Cardiac Cath ...
cardiovascular is better than muscle bulk, but you seriously won't have much time to put much into that ... you go in with what you've got ... especially where you write:

That said, my stenotic BAV symptoms are definitely coming on. I'm feeling my 2-mile walks now ... taking some deep breaths during the walk (don't have to stop yet), etc. So this valve is really ready to be cut out.
yep, so its to late to do more prep now, it was the previous 5 years of health investment which will carry you through now.

Fingers crossed for a routine recovery.

:)
 

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