NEWBIE: Needs advice

[W84Me]

I was discussing my AVR path forward with a group of friends today. One option that made some sense was having a TVR now and when the valve goes bad in 10 years (or so) getting it replaced with mechanical one which probably will last a lifetime. My friends were simply suggesting that path for two reasons:

1. Hospital and recovery time will be sooner. Something advantageous because I live by myself. Relying on my friend for post-surgery recovery is not a superb option. I mean she is fine with it but I am not.

2. I won’t have to hopefully make any adjustments due to no need for warfarin. Their point being once I have gotten used to the least interfering transition life with “valve”, a mechanical valve implant will be much easier to deal with including warfarin. Of course, that will be the conclusive AVR.

My case has puzzled everyone considering my clean past health history including barely abnormal Lp(a). But then a lot of things in life defy any rational. Maybe this is one of them.

 

[Gkeraney]

I was discussing my AVR path forward with a group of friends today. One option that made some sense was having a TVR now and when the valve goes bad in 10 years (or so) getting it replaced with mechanical one which probably will last a lifetime. My friends were simply suggesting that path for two reasons:

1. Hospital and recovery time will be sooner. Something advantageous because I live by myself. Relying on my friend for post-surgery recovery is not a superb option. I mean she is fine with it but I am not.

2. I won’t have to hopefully make any adjustments due to no need for warfarin. Their point being once I have gotten used to the least interfering transition life with “valve”, a mechanical valve implant will be much easier to deal with including warfarin. Of course, that will be the conclusive AVR.

My case has puzzled everyone considering my clean past health history including barely abnormal Lp(a). But then a lot of things in life defy any rational. Maybe this is one of them.

I'm certain other will jump in here, but I do not think this is the best path because surgeons don't yet have a lot of experience taking out the tavi's. Just my opinion

I have a membership at this site but maybe you can see this, I hope.

TAVI Explantation Remains a Risky Proposition, Two New Studies Show

TAVI Explantation Remains a Risky Proposition, Two New Studies Show The studies highlight the need to choose the initial surgery or TAVI with an eye towards a second procedure down the line. www.tctmd.com


I have a tavi, but it was after two open hearts, and it was a decision made as part of a long-term plan. There is no sense going into it again. If you do a tavi now you are counting on surgeons to improve their outcomes a lot, and you need it to happen fast, in time for your next procedure. I bet surgeons will improve a lot but I'm not sure how fast it will happen.

You must be reading consensus opinions from experts on what to do, right? Open heart surgery is very safe the first time or two even. But right now, taking a tavr out isn't. Getting the tavr will be like nothing. You might even be a able to do two

No one would advise doing the toughest surgery when you are older.

 

[pellicle]

I do not think this is the best path because surgeons don't yet have a lot of experience taking out the tavi's.

its requires standard sternotomy OHS and (lets assume 10 years) he'd be 68 when having that OHS.

Personally I'd suspect they'll wait till some level of symptoms emerge before doing surgery, if so then recovery would be at an impaired state.

Personally I think this is the worst possible choice of the three and I'd put a Resilia now neck and neck for first with a mechanical and probably be done with it. This option then gives a much better potential for a TAVR then to get you through the last years (and maybe less of those years due to the issues) and maybe those last years on warfarin anyway.

I wouldn't want to be doing sternotomy recovery close to 70yo (and if any osteoporosis is involved potentially the accompanying issues of sternum re-knitting).

Every single time in my life I try to do something "the short cut way" to "possibly save time and effort" it goes worse. Perhaps that's because of my Irish Ancestry incurring the wrath of Murphy.

@W84Me how experienced / knowledgeable are these groups of friends?

 

[W84Me]

@W84Me how experienced / knowledgeable are these groups of friends?

They don’t have any experience at all. Their perspective was simply along the path of my current scenario of being with myself. But you make some excellent points. I will inquire about Resillia with the surgeon.

Also, if they find arteries blocked on July 10 then open heart surgery is the only option. I personally would like to have mechanical but with my singular life, I also want shortest post-operative/recovery time. Admittedly they are mutuality exclusive.Just don’t like to be a parasite on anyone. Have always been very independent.

As always, my sincere gratitude to you all. I feel comfortable knowing what life has put me into and how to navigate.

 

[pellicle]

Hi

Also, if they find arteries blocked on July 10 then open heart surgery is the only option. I personally would like to have mechanical but with my singular life, I also want shortest post-operative/recovery time. Admittedly they are mutuality exclusive

It could just be phrasing here, but recovery time should be the same bio or mechanical valve

If I was you I would look long and hard at what the cost of a few weeks of swallowing your pride on accepting help is...

Either way, whatever you decide fingers crossed for an uneventful recovery

Best Wishes

 

[pellicle]

Hi
just had a thought

I will inquire about Resillia with the surgeon.

while asking your surgeon questions I'd add these (if they weren't already there)

• if I had a TAVR into my native valve, how much experience is there in removing that and replacing it with a conventional prosthetic (bio or mech)
• does he have a feeling on how long a TAVR would last
• what does he / she think is the ideal choice

Best Wishes

 

[W84Me]

Will add these in my list of questions, pellicle. Thank you.

 

[Critter]

Got to the conversation late. In my opinion you are to young for a bio prosthetic valve and should get a mechanical valve. I have a carbon fiber Onyx valve and i only take as much warfarin to keep my inr at 2.0 which is 1 mg a day. Pretty simple. Check my finger stick twice a month. Varies no more than .1 on my rechecks. I have a machine at home and at office so it’s no big deal. What is nice there is no expiration date on valve. The chances of you going on an anticoagulant with your heart issues are extremely high anyways if you got a bio prosthetic valve since you will be more prone to arrhythmias as you age. At any rate your mileage may vary.

 

[W84Me]

Good to hear that. Mechanical valve is my preference as well. As someone who is very new to the current health predicament, it is frightening and overwhelming yet optimism is there with treatments. I am sure you all were at this point before. Can’t thank you all enough!

 

[LondonAndy]

@W84Me I'd like to offer a little of my experience of living alone during the recovery after surgery, in the hope that it may reassure you that it is less of a problem than you might think. Admittedly I had the advantage of a supportive employer, who paid my full salary the whole time and going back to [office] work gradually was not an issue.

I had a "cardiac event" and went in to hospital by ambulance, so all very sudden and very little forward planning for the post-surgery recovery phase. I was in hospital a total of 25 days, and had a surgical complication that resulted in a pacemaker being inserted too. So my disruption to life was serious. My brother drove me home from the hospital, picking up a friend of mine on the way who came and stayed with me for the first 4 days or so to help me with my living arrangements. We made sure that plates and food were easily accessible in the kitchen, without needing to reach up to cupboards, and my friend slept in my bed whilst I slept more comfortably in a recliner that fortunately I already owned.

I experienced almost no pain, thanks to the initial medication I was sent home with, apart from if I tried to twist my body or otherwise put pressure on the sternum when getting up. But after those 4 days my friend felt comfortable enough to leave me to live alone and return to his own life. I slept a lot, snoozing day and night, went for walks in the nearby park and arranged food deliveries. My doctor, pharmacy, supermarket etc were all within walking distance.

So for me the recovery from OHS was straightforward, and if you are lucky enough to have a stable income and your friend for a few days I hope going for an OHS route is worth the extra recovery time compared to other options.

 

[Timmay]

What makes you think your living alone situation will be any different 5-10 years from now? Sorry if I missed that earlier in this thread.

In my humble opinion, you’re too young for a TAVR. If you’re active then there’s a good chance it’ll fail a LOT sooner than what you’re being told. Just my humble opinion though. You gotta do what you’re comfortable with. Additionally, if you’re going to be living alone when the TAVR goes bad then you’re back in the same position … and if that’s the case then you might as well do the sternotomy while you’re younger.

 

[W84Me]

What makes you think your living alone situation will be any different 5-10 years from now? Sorry if I missed that earlier in this thread.

In my humble opinion, you’re too young for a TAVR. If you’re active then there’s a good chance it’ll fail a LOT sooner than what you’re being told. Just my humble opinion though. You gotta do what you’re comfortable with. Additionally, if you’re going to be living alone when the TAVR goes bad then you’re back in the same position … and if that’s the case then you might as well do the sternotomy while you’re younger.

Your rationale is very valid. That’s why, I prefer mechanical as well. There are only following elements that are making me hesitant:

1. Recovery time/process but pellicle has informed me that it is the same regardless.
2. Dependence on warfarin/Coumadin. My advising cardiologist discouraged me.
3. Any annoyance from valve noise, if any.

Must admit that freedom from any future surgeries is a very big incentive for me to head in the way of mechanical valve preferably St. Jude.

 

[pellicle]

Varies no more than .1 on my rechecks

oh how I wish that was my situation (hey @Timmay )

some people are really flat line, others just aren't. Eg mine from 2021 weekly data samples
INR blue dots (light blue line is 3 week rolling average)
dose adjustments in red (right hand Y axis)

 

[W84Me]

So I can very much see myself in the camp of mechanical valves recipients. Now question is: Is there a particular kind or brand that I should be asking for when meeting the surgeon? I hear excellent applause for St. Jude. What about carbon fiber ones?

Please share your thoughts/experiences.

 

[Superman]

So I can very much see myself in the camp of mechanical valves recipients. Now question is: Is there a particular kind or brand that I should be asking for when meeting the surgeon? I hear excellent applause for St. Jude. What about carbon fiber ones?

Please share your thoughts/experiences.

Pyrolytic Carbon. Not carbon fiber. ATS, St Jude, and On-X are all made of the same stuff.

Mechanical or tissue is a much bigger decision factor than which mechanical valve. They’re all pretty much the same. The only thing I wouldn’t do is follow the 1.5-2.0 target INR that On-X lobbied for. Far easier to replace blood cells than brain cells. If I’m going to be off, I’d rather err on the high side.

 

[nobog]

So I can very much see myself in the camp of mechanical valves recipients. Now question is: Is there a particular kind or brand that I should be asking for when meeting the surgeon? I hear excellent applause for St. Jude. What about carbon fiber ones?

Please share your thoughts/experiences.

There are no "carbon fiber" heart valves - there are pyrolytic heart valves and as far as mechanical that's really your only choice (and that's OK). Get the SJM.

 

[pellicle]

What about carbon fiber ones?

Name one please, I've never heard of one

I see this is addressed

I think there is a chance now that you're trying to shove in so much more than you can possibly cram (like an undergraduate student the night before an exam) and are missing some of the points already explained (meaning its an organisational issue):

Now a mechanical valve is a piece of pyrolytic carbon, so a ceramic of carbon originally made for missile nose cones

https://en.wikipedia.org/wiki/Pyrolytic_carbonThe first point in the applications:

Applications​

• It is used non-reinforced for missile nose cones and ablative (boiloff-cooled) rocket motors.

The valves made from that look like this

I understand and sympathise. When I have to do this (such as for example when I had to suddenly change from understanding the server model of deployment to swarm container deployment) I took extensive notes and wrote it up BIG on a white board I had beside my desk. I drew lines and reorganised it with sheets of paper held up with magnets containing the details. I did this in my masters thesis too ... (which btw the purpose of a research thesis is to prove to your assessors that you can teach yourself about a topic, not missing any key points just from the available (proper) literature. Become familiar with the primary authors in the field and the pros and cons.

This is what you have to do and I know having done it for the first time its an amount of well organised work.

So don't forget to revise what you've already done (and re-synthesize that into appropriate summaries). If you don't it'll just be a huge whirlwind of (frog in a blender) muddled facts.

Best Wishes

 

[Timmay]

The PROSE study showed that they performed the same at the 5 year mark.

https://www.sciencedirect.com/science/article/pii/S2666273622003084
With that said, the differences as I see it are …
1) The SJM valve comes in a smaller package. This makes it easier for your surgeons to fit a larger valve. My surgeon had to do an aortic root enlargement to fit a normal sized 23mm On-X valve. That said, the larger package of the On-X appears to be due to the complete annulus support structure that has a flared opening. This potentially provides anti-pannus protection. Of note is that the SJM valve has some pannus protection around the hinges of the valve.

2) On-X marketing strategies are … interesting. Additionally, they’ve changed their company name a couple times … which is weird. Very weird.

3) The On-X opens a full 90 degrees. However, there’s some studies going around that show this makes one part of the flow better while making the other side worse. It’s a give and take.

If you end up with an On-X (many of us here have them, including me), don’t follow the lower INR recommendations. This has already been pointed out, but I wanted to drive that point home.

 

[W84Me]

So presently this where I stand:

1. Mechanical valve.
2. Preferably On-X due its being second generation and somewhat lenient on INR.
3. If available, keyhole surgical procedure.

 

[pellicle]

PS:

I suggest you add to your board that now there are only one type of mechanical valve but a number of makers which produce almost identical designs. Open Pivot or Open Hinge

This is a good historical round up
https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA.108.778886
from Fig one these are the only mechanical valve types and only A is currently in use or is approved

The type C is what people like Dick have and type B had a relatively short life.

Now if you've ever bought an appliance you'll know that what the maker claims and what you may get are often almost right and occasionally more like "a maker wish list"

So while On-X marketing will claim the following

you need to wear your Critical Thinking hat (you read that article link; right?) and not just swallow the food that was spooned into your mouth (because it wasn't your parent, but a company in a country which allows direct marketing of valves to patients as if they were dishwashers.

Some Critical thoughts

• what determined "optimal criteria" in their claim of "optimal length" claim
• does the claim of 90 degree opening stack up in reality?

I can answer the second point

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334
So if you were buying a washing machine (and you were like me) you'd read the magazines which actively test the devices and evaluate claims like; power consumption, water use, how clean they make dishes.

That's what we cite Peer Review Journals for ... that's the source of data. Now this data is of course complex and you must read more than the abstract if you really want to know. Or just cite it here and see what your peers think of it.

The answers found in peer review differ from the answers in "Consumer Reivew" not just because the questions are tougher, but because the intended audience is more demanding.
For example:
https://pubmed.ncbi.nlm.nih.gov/17655477/
From the Abstract:

The hemodynamic and the thrombogenic performance of two commercially available bileaflet mechanical heart valves (MHVs)--the ATS Open Pivot Valve (ATS) and the St. Jude Regent Valve (SJM), was compared using a state of the art computational fluid dynamics-fluid structure interaction (CFD-FSI) methodology.​

assumptions include:

An aortic flow waveform (60 beats/min, cardiac output 4 l/min) was applied at the inlet. ​

so your critical mind should immediately assume that higher blood circulation rates will change these actual numbers, but how is perhaps just pressure jet

Platelet stress accumulation during forward flow indicated that no platelets experienced a stress accumulation higher than 35 dyne x s/cm2, the threshold for platelet activation (Hellums criterion). However, during the regurgitation flow phase, 0.81% of the platelets in the SJM valve experienced a stress accumulation higher than 35 dyne x s/cm2, compared with 0.63% for the ATS valve.​

again your critical mind should be asking about "platelet stresses" and asking what that means if you don't know (I'm sure its been mentioned by me, but I'll mention again that platelet aggregations form the basis for thrombosis. Having that happen in the middle of your artery out to your brain means a triggered thrombosis is now heading for your head. Which is why we have anti-platelet drugs and anticoagulation).

That whole article is worth a read just to get your head around the valve technology described. Eg

I'd say it takes a good undisturbed hour to read (and google points mentioned you don't know).

If you aren't putting in that level of time on reading then

1. you probably aren't going to get the benefit from the answers you find
2. meaning your engine is going but your wheels are spinning and you're getting nowhere

These are complex questions and so the answers aren't simple, sort of like you can't properly answer in a way to engender confidence when someone asks "did aliens make the pyramids" with "no".

Ultimately to make an informed decision you need to be informed (meaning also understand it). I personally don't think many patients can make an informed decision, thats not being unkind, its just being realistic.

So pick a St Jude.

(I have an ATS because my surgeon thought it was better, after I got it I started reading about it. The more I learned the more I found the answers are unclear. I have no reservations about my valve.)

Ultimately I still recommend my own blog post as all the basics

http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
it also contains the link to Dr Schaffs presentation which I also still recommend.

HTH