BAV facing OHS in Oct (AVR and aorta graft)

[Gkeraney]

From looking at your bio I believe you may be the only tavr placed in a bio valve on this forum and I think your experience is invaluable for people as they ponder their own situations. I had two elderly neighbors who chose tavr for their initial implants. Both were in their mid 70s when the valves were inserted...... neither was in good physical shape in their senior years and passed a few years post tavr. I am very curious as to how long these valves can last in a person without other health problems and how a tavr valve might impact life style.

Yes, I knew at the time I was going to be setting an example of some sort. My family is very long lived. My mom just passed at 96 and I spent time the past few days with her 92 and 90 year old siblings. Same thing on my dads side. my brothers are alive with no issues in their 70's. I literally have to fly though another open heart surgery somehow and get into my 90's, or do well with a tavr and then another tavr. The first step is to have this tavr get me at least 7 more years. After open heart the first 2 times, I was back at work quickly and I stand all day at work and use my arms a lot. We will see. I am not at all confident this has gone the best way. Twice I almost got a mechanical valve, and its more likely than not I would be better off if I had.

 

[HokieHaden]

I went to Vanderbilt today for pre-op testing ahead of my Oct 25 scheduled Ascending Aortic aneurysm repair and BAV replacement. Testing today: CTA (showing clean results), EKG, chest X ray, blood draw and urine sample.

I met with my cardiac surgeon’s NP, which was refreshing. She had superb bedside manner and spent as much time with me as I wanted, answering all of my questions - which I have documented below.

Ultimately, I am still deciding on the type of valve, and she reassured me that I can make that decision right up to the day of surgery.

Reminder - 49 year old male with congenital BAV, asymptomatic my entire life. I had OHS at age 16 where they snipped on my BAV to reduce stenosis (but making leakage worse). I have now developed an aneurysm of the ascending aorta, currently measuring 49 mm.

Q and A with surgeon's NP this morning:

Tissue (Magna, cow tissue) Valve questions:

What is the expected lifespan of this bovine (Magna?) valve? Likely 15-18 yrs (so will need another replacement in my mid-60s)

Will this be implanted to enable TAVR in the future? Nothing special is done, but it will be the largest size possible for my anatomy, to best prepare for future TAVR.

How certain am I to be a TAVR candidate in the future? Not her exact words, but what I gathered — No guarantee, but it is likely I would.

Mechanical (On-X) Valve:

What is the expected lifespan of this valve? Lifetime

What are the lifestyle or diet changes because of warfarin? There's a whole list of foods, and alcohol, that you have to watch out for. But, using this On-X mechanical valve allows for a 1.5-2.0 INR range, which is lower than other mechanical valves. Because of this, missing a day of warfarin here or there won’t make a huge impact. It’s a bit more forgiving was my interpretation. Diet and some other medications (eg, ibuprofen) are counter-indicated by being on warfarin.

Will I be able to self-monitor INR at home? After a few months, insurance should pay for home monitoring. Until then, it will require maybe 2x/week going to a clinic/lab for testing INR level.

For similar age and condition patients, about what % of your patients choose mechanical (vs. tissue) valve? Maybe ~70% of their similar patients select tissue.

She told me multiple times that Dr Shah (top cardiac surgeon at Vanderbilt) is about my age and she knows that if it were him in my shoes, he’d choose the tissue valve. She encouraged me to call or email him anytime to talk about this further. Which I will do.

 

[pellicle]

Hi

What is the expected lifespan of this valve? Lifetime

yep ... the requirement for reoperation of a mechanical valve is not because of the valve wearing out. It is mainly

1. extensive history of patient non compliance with warfarin leading to obstructive thrombosis (basically scabs building up on the inside of the mechanism). AFAIK this is in the main no longer commonly a reoperation as is cleared by PICC administration of tPA while in hospital for a few days
2. pannus

What are the lifestyle or diet changes because of warfarin?

give up grapefruit

There's a whole list of foods, and alcohol, that you have to watch out for.

which is pretty much wrong, except for grapefruit

But, using this On-X mechanical valve allows for a 1.5-2.0 INR range, which is lower than other mechanical valves.

a marketing gimmick to prey upon the uninformed who think that there is some horror reason to drive the minimisation of warfarin because warfarin is "rat poison"

aside from the difficulty of practically maintaining a tightrope INR of lower you DO NOT want to be at 1.5 ... think of it more as the extreme not the goal. Think your goal as being in the middle of the range. All the available evidence shows (including the actual tests done by On-X patent holders to get the lower INR approved) that the long established 2.0 ~ 3.0 INR range (target = 2.5) is better.

Me, I'd take a good hard and long critical look at St Jude and take off the "marketing hype" (or indeed ask why does a valve manufacturer need to hype it up and play on fears?).

Because of this, missing a day of warfarin here or there won’t make a huge impact.

there is zero reason to be paranoid about an accidental missed dose and it is not like you're going to just stroke and die from that. It requires a constant ignorance of the dose and even then:

recommended reading here:

https://www.valvereplacement.org/threads/how-long-can-you-go-without-it.887951/#post-903896

It’s a bit more forgiving was my interpretation. Diet and some other medications (eg, ibuprofen) are counter-indicated by being on warfarin.

almost everything can be managed around and ibuprofen is yet another "myth" which relates more the the chronic use of industrial grade ibuprofen that people with chronic arthritis pain take. Even then the word "may" is used in those studies, not anything certain. A good starting point of a thread and reference is here:

https://www.valvereplacement.org/threads/warfarin-arthritis-pain-relievers.888735/post-919388

Will I be able to self-monitor INR at home? After a few months, insurance should pay for home monitoring.

sure, depends on your insurance company. Personally I just own my own machine and buy my own strips. From what I've read here that actually works out the same price as the "jacked up overcharging" that the insurance companies do.

Until then, it will require maybe 2x/week going to a clinic/lab for testing INR level.

I personally would suggest weekly testing unless there is a good reason. Reach out if you like and I can introduce you to my method of documentation and how that then gives you a good basis for dose estimation and how to manage things.

Best Wishes

 

[HokieHaden]

Hi

yep ... the requirement for reoperation of a mechanical valve is not because of the valve wearing out. It is mainly

1. extensive history of patient non compliance with warfarin leading to obstructive thrombosis (basically scabs building up on the inside of the mechanism). AFAIK this is in the main no longer commonly a reoperation as is cleared by PICC administration of tPA while in hospital for a few days
2. pannus

give up grapefruit


which is pretty much wrong, except for grapefruit


a marketing gimmick to prey upon the uninformed who think that there is some horror reason to drive the minimisation of warfarin because warfarin is "rat poison"

aside from the difficulty of practically maintaining a tightrope INR of lower you DO NOT want to be at 1.5 ... think of it more as the extreme not the goal. Think your goal as being in the middle of the range. All the available evidence shows (including the actual tests done by On-X patent holders to get the lower INR approved) that the long established 2.0 ~ 3.0 INR range (target = 2.5) is better.

Me, I'd take a good hard and long critical look at St Jude and take off the "marketing hype" (or indeed ask why does a valve manufacturer need to hype it up and play on fears?).



there is zero reason to be paranoid about an accidental missed dose and it is not like you're going to just stroke and die from that. It requires a constant ignorance of the dose and even then:

recommended reading here:

https://www.valvereplacement.org/threads/how-long-can-you-go-without-it.887951/#post-903896



almost everything can be managed around and ibuprofen is yet another "myth" which relates more the the chronic use of industrial grade ibuprofen that people with chronic arthritis pain take. Even then the word "may" is used in those studies, not anything certain. A good starting point of a thread and reference is here:

https://www.valvereplacement.org/threads/warfarin-arthritis-pain-relievers.888735/post-919388



sure, depends on your insurance company. Personally I just own my own machine and buy my own strips. From what I've read here that actually works out the same price as the "jacked up overcharging" that the insurance companies do.


I personally would suggest weekly testing unless there is a good reason. Reach out if you like and I can introduce you to my method of documentation and how that then gives you a good basis for dose estimation and how to manage things.

Best Wishes

Thanks very much, Pellicle. For what it's worth, I'm not sure my surgeon "offers" the St Jude. When asked about my valve choices with him, it was Magna (tissue) or On-X (mechanical). I'll discuss further with him to get his thoughts on the St. Jude and why he is offering On-X as the mechanical option.

 

[pellicle]

Hi

Thanks very much, Pellicle.

welcome

just quickly about the On-X ... I frankly have no idea what its benefits actually are. For starters its physically about double the size of the St Jude (disclosure, I have an ATS which is another "off shoot" from the St Jude design). Then there is the claims which appeal not at all to anyone professional but to those who are ignorant of and perhaps a touch hysterical about warfarin (trust me, I've seen that a lot here).

For instance:
https://www.valvereplacement.org/th...-compliance-with-an-on-x-aortic-valve.888128/
The out take from that is it ain't no avoid INR management silver bullet.

Since your President Truman was on warfarin the key to success of warfarin has been the invention of the INR scale (we used Prothrombin Time before and INR is Intarnational Normalised Ratio) the management has only improved. Indeed now we have small devices that allow us to know our INR, at will, in seconds, for a few bucks.

I'm going to blame the most sensational, irresponsible, hysteria creating mongers on the planet for this: the media. Note the use of "rat poision" in this (quite tame article's) headline.

https://www.ncbi.nlm.nih.gov/books/NBK559896/
The electronic revolution has enabled great changes in drug titration and made the "impossible dream" (from Trumans perspective) to turn into the mundane.

Even ordinary people like me can even do a bit of citizen science and understand thing and indeed encourage others to repeat and verify

https://cjeastwd.blogspot.com/2023/03/roche-coaguchek-xs.html

For what it's worth, I'm not sure my surgeon "offers" the St Jude.

that's a telling indicator to me ... why would they not offer the industry standard?

https://www.valvereplacement.org/th...d-one-like-st-jude-and-ats.887854/post-902235
people talk about informed choice ... so, if you are a critical thinker, how are you informing yourself? About what criteria? Here's a good example of important criteria; the assessment of actual measurable claims

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334

I'll discuss further with him to get his thoughts on the St. Jude and why he is offering On-X as the mechanical option.

that's excellent, already if all I've done is give you some good questions to extend what you are talking with each other about I've done something worthwhile.

I wholehartedly recommend this entire presentation, however I'll just post this segment by Dr Schaff about INR management (which he introduces subtly):



I won't muddy this with the whole presentation, but reach out if you want it.

Best Wishes

 

[HokieHaden]

Hi


welcome

just quickly about the On-X ... I frankly have no idea what its benefits actually are. For starters its physically about double the size of the St Jude (disclosure, I have an ATS which is another "off shoot" from the St Jude design). Then there is the claims which appeal not at all to anyone professional but to those who are ignorant of and perhaps a touch hysterical about warfarin (trust me, I've seen that a lot here).

For instance:
https://www.valvereplacement.org/th...-compliance-with-an-on-x-aortic-valve.888128/
The out take from that is it ain't no avoid INR management silver bullet.

Since your President Truman was on warfarin the key to success of warfarin has been the invention of the INR scale (we used Prothrombin Time before and INR is Intarnational Normalised Ratio) the management has only improved. Indeed now we have small devices that allow us to know our INR, at will, in seconds, for a few bucks.

I'm going to blame the most sensational, irresponsible, hysteria creating mongers on the planet for this: the media. Note the use of "rat poision" in this (quite tame article's) headline.

https://www.ncbi.nlm.nih.gov/books/NBK559896/
The electronic revolution has enabled great changes in drug titration and made the "impossible dream" (from Trumans perspective) to turn into the mundane.

Even ordinary people like me can even do a bit of citizen science and understand thing and indeed encourage others to repeat and verify

https://cjeastwd.blogspot.com/2023/03/roche-coaguchek-xs.html



that's a telling indicator to me ... why would they not offer the industry standard?

https://www.valvereplacement.org/th...d-one-like-st-jude-and-ats.887854/post-902235
people talk about informed choice ... so, if you are a critical thinker, how are you informing yourself? About what criteria? Here's a good example of important criteria; the assessment of actual measurable claims

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334

that's excellent, already if all I've done is give you some good questions to extend what you are talking with each other about I've done something worthwhile.

I wholehartedly recommend this entire presentation, however I'll just post this segment by Dr Schaff about INR management (which he introduces subtly):



I won't muddy this with the whole presentation, but reach out if you want it.

Best Wishes

To be fair, I don’t know that my surgeon doesn’t offer the St Jude or some other mechanical valve option than On-X. I just know when I asked his nurse what valves he recommends for me, she replied Magna and On-X.

Thanks for the video - I believe that was a portion of the video you shared near the beginning of this same post. Appreciate it.

 

[pellicle]

I believe that was a portion of the video you shared near the beginning of this same post. Appreciate it.

Yes, it was part of that larger presentation, sorry for the duplication. I don't usually spend much time wondering "have I shared that with this person" before (or indeed if any given person watched it, watched all of it or remembered those points).

I've been here 12 years and made a lot of posts.

¯\_(ツ)_/¯

Best Wishes
PS: I'm not trying to make the case that a mechanical valve is universally better than (say) a bioprosthetic. I have a 4WD, two motorcycles (of differing type), an electric scooter and a regular MTB bicycle. I pick one of them at any given moment to do what it is I want. However if I had to have only one of those I'd probably come down to the 4WD

 

[pellicle]

Hi

a couple of points:

To be fair, I don’t know that my surgeon doesn’t offer the St Jude or some other mechanical valve option than On-X. I just know when I asked his nurse what valves he recommends for me, she replied Magna and On-X.

I would wonder just how many people stop right there ... they asked the nurse and it became a QED in their minds.

on this point:

Thanks for the video - I believe that was a portion of the video you shared near the beginning of this same post. Appreciate it.

I went back and reviewd the first reply I'd made here and your responce to that was (to me) like "talk to the hand" as I've already made my decision

I will definitely watch the video. But….I’m following the lead and many years of experience of my cardiologist and cardiac surgeon (both are extremely experienced and well-renowned). I’ve already had this discussion with each of them, and they both shared my concerns with the mechanical valve option and blood thinners. Neither of them corrected me as though the risk/concerns I shared were wrong or misunderstood.

so I pretty much left it as "falling on deaf ears".

I don't mind, because my view is that "information dissemination" should exactly be like a tree dispersing seeds (part of the etymology of dissemination), while I was writing to address your points and questions I also always consider the broader context of "the lurkers" and those who just get fed a post by a Google Search.

Best Wishes

 

[tommyboy14]

Hello,

I think that a lot of cardiologist and surgeon judgement goes into their recommendation, but in some countries doctors about a bit more frank.

My cardiologist, who is the former President of the British Cardiac society and the most well known promoter of TAVI (he worked on famous people before), told me that either a mechanical valve or the resilia valve were reasonable options. He said that so long INR is between 2-3 there should be no issues and that in his own practice, self-testing/self-management has changed the game. When I told him I was leaning towards meachanical at age 42, he said that this would also be his choice, if he would be making it.

My surgeon, who has done a sixth AVR on a patient successfully and who is very liberal with bio valves, said that his very strong recommendation for me was mechanical valve. I frankly think he came close to refusing to operate if I didnt go with this recommendation. I was leaning that way anyways. His reasoning was that he saw so many patients with Pannus after 20-30 years, it is better to play it safe and keep spare 'safe' surgeries for later, hoping that they will never be required.

So I suppose is that world leading doctors can have different opinions on these things. Their recommendations are based on their judgement, based on you as a person. If they know you well enough to be sure you can handle INR management, they may as well conclude that mechanical valve is the right option for you.

As to myself, I was struggeling a bit with the decision at the time, but honestly if I dont have to go through another OHS I would be very happy and taking one medication day for a good chance that this was my last OP on the aortic valve is a price worth paying from my point of view.

My point is that recommending a bio over a mechanical in your age group is a pure judgement call. It isnt backed up by statistics.

 

[pellicle]

To supplement this:

I think that a lot of cardiologist and surgeon judgement goes into their recommendation, but in some countries doctors about a bit more frank.

...
My point is that recommending a bio over a mechanical in your age group is a pure judgement call. It isnt backed up by statistics.

so, we know that people aren't compliant with warfarin. We know that people who are chronically non-compliant come to harm from this, in extreme cases this:

https://www.valvereplacement.org/th...-compliance-with-an-on-x-aortic-valve.888128/
People are incredibly daft if you ask me and somehow think that the world of medical opinion is united. "My Surgeon says this" yet we see other surgeons saying other things. Is one "right" and one "wrong"?

Seemingly simple facts are no longer simple when you drill down into layers and assumptions.

Sure, warfarin is hard to manage, especially if you don't have the tools nor the knowledge. Personally I try hard (probably harder than anyone else here) to give people the tools and the knowledge.

However I recognise that not everyone is interested in managing their health, not everyone is willing to accept that they now have a health problem. They want "the magicians" to return them to before they knew it was there (but for BAV or Aneurysm it was always there, in your DNA).



Most people want the blue pill, not the (even though its trivial) acceptance of change and the associated effort.

Just philosophy over coffee.

 

[pellicle]

His reasoning was that he saw so many patients with Pannus after 20-30 years

this is a good point and what's interesting is that I've not yet found a paper that discusses pannus as an outcome over time. What I see is that pannus is taken statistically as a genetic possibility.

This article is good:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4777461/
The wording is interesting:

Over the past decades, improvements have been made in the design and hemodynamics of mechanical valve prostheses in order to reduce valve dysfunction and increase durability [1]. However, prosthetic stenosis due to thrombus or pannus is still one of the most frequent complications and it can be severe, evolving into cardiogenic shock [2–7]. Pannus is a non-immune inflammatory reaction of the body to the valve prosthesis, a proliferation of fibroelastic tissue and collagen, with a starting point in the suture area and subacute or chronic centripetal evolution [8]. It usually proliferates on the ventricular side of aortic prostheses and is associated with certain risk factors such as operative technique, characteristics of the prosthesis, size of valves in patients with a small valve ring, young age, female sex, pregnancy, low cardiac output, turbulent flow, infection, inadequate anticoagulation [1,8,9]. The differential diagnosis of pannus-related prosthetic valve dysfunction with other causes of prosthetic valve dysfunction, mainly thrombotic involvement, is frequently difficult but essential, because therapeutic approaches are different [10,11,12].​

I've bolded points of interest. So first lets look at the word "frequent" ... what actually is frequent. A frequency of 1Hz is one cycle per second, a frequency of 20MHz is twenty thousand cycles per second. Visible green light is 5.45 times ten to the 14 hertz or 54,600,000,000,000,000 cycles per second.

Saying frequency therefore means very little without knowing how frequent it is

So according to this article:
https://cardiothoracicsurgery.biomedcentral.com/articles/10.1186/s13019-019-1022-8

Prosthetic valve dysfunction at aortic position is commonly caused by pannus formation which is an uncommon and lifethreatening complication. Its incidence varies between 1.8% in tilting disc to 0.73% in bileaflet valves ​

not only is it very low frequency its getting lower with modern valves. Thus this would appear to be a "boogey man" from the past.

So why then is it said above that it is one of the most frequent complications? Well because in mechanical valves there really are no other complications in the overwhelmingly vast majority of cases (that would be the 99.27% of cases).

Next lets dissect that sentence "prosthetic stenosis due to thrombus or pannus " and ask why did they conflate thrombus with pannus into a single statistic? Thrombus is caused purely by chronic failure to anticoagualte properly. Pannus on the other hand is a scar tissue reaction.

I suspect that its all about making it more attention grabbing.

Just food for thought on understanding "facts"

 

[SSJ4]

HokieHaden,
I have been following this thread and you don't know how helpful this has been for me. 46 year old male and having my first OHS on October 24th for bicuspid valve (diagnosed at the age of 13) and also repairing an aortic aneurysm at the same time. A lot to think about but have been heavily leaning towards the tissue valve based off of feedback from my local cardiologist and my surgeon at Shands Hospital at the University of Florida. Prayers for you and I will continue to follow over the next few weeks.

 

[HokieHaden]

HokieHaden,
I have been following this thread and you don't know how helpful this has been for me. 46 year old male and having my first OHS on October 24th for bicuspid valve (diagnosed at the age of 13) and also repairing an aortic aneurysm at the same time. A lot to think about but have been heavily leaning towards the tissue valve based off of feedback from my local cardiologist and my surgeon at Shands Hospital at the University of Florida. Prayers for you and I will continue to follow over the next few weeks.

Wow, very similar situations we are in. And you on Oct 24, me on Oct 25. We are 3 weeks out, my friend. I know God has us both covered - in this I take great peace.

It’s funny - thanks to this site and the many who have been through it here, I’m actually now leaning toward a mechanical valve. Still not 100% decided, though.

Please keep me/us posted on your journey, friend.

 

[pellicle]

I’m actually now leaning toward a mechanical valve. Still not 100% decided, though.

I think that's a healthy transition.

I often say moving back and forth between choices shows that one is indeed exploring and understanding each side. It matters not so much what you choose but why you chose it.

I wish you well with your deliberation and decision making, none of us here can know your situation and specific issues as well as you can; the most we can hope to do is help you on the path to understanding sufficiently well to make an informed decision.

Best Wishes

 

[SSJ4]

Wow, very similar situations we are in. And you on Oct 24, me on Oct 25. We are 3 weeks out, my friend. I know God has us both covered - in this I take great peace.

It’s funny - thanks to this site and the many who have been through it here, I’m actually now leaning toward a mechanical valve. Still not 100% decided, though.

Please keep me/us posted on your journey, friend.

I understand. Reading through the post in this thread had me wavering some as well. I know it is my decision but there seems to be an overwhelming amount of support for the tissue over the mechanical from those in medical field around me. But it is me who will have more procedures in the future with the tissue valve and not them so I have to take that into consideration. Headed to Gainesville on 10/19 for my pre-op appointment. I assume my decision will be made coming out of that appointment. My surgery has been planned for weeks now but it has always been a month or more in the distance. Once the calendar flipped to October a little more anxiety started to set in. But I have been keeping the same mindset as you - God has always taken care of me and I know he will see me through this as well.

 

[HokieHaden]

I understand. Reading through the post in this thread had me wavering some as well. I know it is my decision but there seems to be an overwhelming amount of support for the tissue over the mechanical from those in medical field around me. But it is me who will have more procedures in the future with the tissue valve and not them so I have to take that into consideration. Headed to Gainesville on 10/19 for my pre-op appointment. I assume my decision will be made coming out of that appointment. My surgery has been planned for weeks now but it has always been a month or more in the distance. Once the calendar flipped to October a little more anxiety started to set in. But I have been keeping the same mindset as you - God has always taken care of me and I know he will see me through this as well.

Your thoughts are so similar to mine, it's striking. As @pellicle stated above, I'm going back and forth, exploring the pros and cons of each option. There's just not a "perfect" answer. And, in a strange way, I take comfort in that as it allows me to rest in choosing a path and knowing the other path also has challenges (if that makes sense).

 

[Chuck C]

Your thoughts are so similar to mine, it's striking. As @pellicle stated above, I'm going back and forth, exploring the pros and cons of each option

This was very similar to my process as well. Initially, I would say I felt almost certain that I wanted a tissue valve. I even had a consult with the surgeon, when I was still in the "moderate" stenosis zone, in which I informed him of this and our conversation was around which tissue valve- the plan was to go with a Resilia tissue valve. But, after a few months of learning about life on warfarin, and learning that my fears were based on myth and misinformation, I decided to go mechanical, as I really did not want to have another OHS and was far too young to consider TAVI on round 2. I had a 2nd consult with the surgeon, after my AS had become severe, and this centered around whether to go with St Jude or On-x mechanical valve.

There is something to be said for doing due diligence and letting your mind be changed in the event new evidence surfaces, which challenges previous beliefs. Ideally, if we are evaluating our choice with critical thinking, we should be open to changing our minds when new information is brought to the table. Sometimes it really takes time to sort through the info and evaluate what is real and what is myth. For me, hearing real life experiences from those on warfarin helped a lot. Also, to be honest, reading dozens of testimonies of how younger folks were often disappointed upon being informed that they needed OHS after just 6 to 10 years really influenced me as well. At 53, I was a young valve patient, and I did not want to end up facing future procedures and be in that camp. Reoperation was a near certainty if I went tissue. At 53, I tried to look 10, 20 and even 30 years down the road in making my decision.

 

[Jennie]

@HokieHade

To share my experience: I had a bicuspid aortic valve, w/ mid-ascending aortic aneurysm. Bicuspid valve was really two leaflets fused together, possibly due to a virus during childhood, who knows. I had an aortic valve/root replacement at age 35 in 2002, with a brand-new-on-the-market CryoLife SynerGraft aortic valve (a human donor valve, washed of donor cells and cryopreserved, hoping that it would repopulate w/ my own cells for less "rejection" by my body). Got some dacron tubing for the aorta. My concern at that time was that I wanted to preserve the option to have children, and warfarin isn't so conducive to that. My cardiologist in DC wanted me to get a mechanical for longevity, saying that we can manage it w/ heparin, etc. But I ended up at Mayo Clinic, and got the tissue. Only med was baby aspirin.

As an aside: At the time of my surgery, they believed that the aneurysm was due to the hemodynamics of the blood coming through the valve at an angle and slamming into the wall of the aorta, causing the bulge. (Marfan's Syndrome was suspected, but ruled out during the actual surgery). But more recently, they are viewing the aneurysm and aortic root issue as a separate "disease", Aortic Root Dilation, and told me to have my siblings/children get checkout out, as it is believed to be hereditary, and a silent killer for those who aren't being monitored.

So, about 15 years in, my replacement valve was starting to leak, and I knew I'd need it replaced before I turned 60. In February 2021, about 19 years in, the echo showed that the valve was not just regurgitant, but also stenotic. One occurs when the heart contracts, the other when the heart expands. So we will continue to watch and wait. Then, October 2021 (two years ago this week!), I experienced some sort of "catastrophic event" where, because of the stenosis/calcification, my valve broke (blew a hole), totally failed, putting me straight into congestive heart failure. Later I was told that this is a rare event, it doesn't usually happen like this.

Thankfully (after 10 days of thinking I had pneumonia), I went to see my big dog cardiologist at Johns Hopkins, and a fantastic surgeon there. They also have a TAVR group. So there was much discussion on how to handle this. They wouldn't let me go home until I had the valve replaced.

1) I was in full-blown congestive heart failure.
2) Scar tissue. Yes. Lots of it. It took them an hour to cut through it all.
3) Everything in there was calcified, and a royal mess. Lots to remove before they could start putting new stuff in. Very delicate.
4) My aorta was calcified and positioned closely underneath my sternum. They were worried that they would break the aorta when they cut open the sternum, and that would be Bad News Bears. So they opted for a "clamshell incision", horizontally side-to-side under the breasts, then yank my rib cage open like the hood of a car. So the first surgery was the "crab", and the second, the "clam". HAHA!!
5) Much discussion was done about a TAVR, and the previous surgery notes were helpful in determining whether there was enough room in there to do a TAVR. They initially didn't think it was an option, but then this TAVR group decided it was.
6) Options: a tissue (I forget which), a TAVR, an On-X mechanical w/ the conduit attached (for the aorta).

Side note: I don't have my notes here, but I believe my tissue valve was 22 mm, and my current valve is 19mm, this is what the surgeon had to use for whatever reason. And I may be delusional, but I feel like I can notice this when doing stairs, etc. I feel it straining inside there, and feel winded, like I'm not getting enough oxygen during such exertion. But I can live with this.

Several things affected my decision, but at 54, my main concern was the longevity. Didn't want to do another tissue, as pregnancy isn't a concern now. For the mechanical, open heart surgery with the points I listed above, they said it was 10-15% chance of mortality. They didn't like doing surgeries more risky than 5%. In retrospect, I really don't think I could do a third such surgery, and with such risks at this age, I knew it would be worse in another 10 years. TAVR, my main concern was all of that calcification still in there. If I lay a tissue valve over top of it all, that will just add more to the glob of calcification. My valve broke, what else is gonna break, and when? It's dangerous to have a random chunk of calcification suddenly hit your bloodstream (stroke, death....) Once the surgeon explained to me what the mess was in there, I was like, I want all of that OUT. And I prayed for wisdom.

But all of us: big dog cardiologist, surgeon, previous surgeon (who did my SynerGraft, he was a former colleague), and me, we all decided on the mechanical. Later my cardiologist told me, referring to the TAVR, "we wouldn't have let you make the wrong choice". He was at another location during the time I was in the hospital, and he sort of hinted that they shouldn't even have offered me a TAVR. So, yeah. It would've been great to walk out of there and continue life for another 10 years, but then I'd be in the same boat again, only bigger and deeper.

Here's the On-X with conduit attached. This might be what your surgeon is suggesting for you?
https://artivion.com/product/on-x-aap/
I do home monitoring w/ a Philips CoaguCheck Vantus machine. I keep a box of fresh spinach in the fridge, to munch a bit as needed. My new cardiologist thinks that I can be in the 1.5 to 2.0 INR range, but I don't like that, and got him to change it to 1.5 to 2.5. Now there's another new cardiologist on the scene, and I hope to get him to change it to 2.0 to 3.0. I get bruised easily, and some small bleeds have been difficult to stop. I wear a bracelet to let emergency personnel know that I'm on warfarin. But, I can live with all this.

I wish you the best! Please don't hesitate to chat some more here!

Jennie

PS I miss my grapefruit

 

[dick0236]

PS I miss my grapefruit

Jennie, thanks for a great post! You are a true medical authority on OHS. I grabbed the "gold ring" when I went around the valve choice merry-go-round and got the only valve on the market back then. Fortunately for me, it was a mechanical. Your post "dots the eye" regarding valve choice for longevity. I hope your Onyx eliminates any more intrusive surgeries.

PS, For the first thirty-plus years after surgery no doctor ever mentioned "no grapefruit" and I continued to eat/drink it on a routine basis. I learned grapefruit is a no-no from this forum. I cut grapefruit juice from my diet but I continue to enjoy 1/2 grapefruit a time or two each month. My INR is well managed and I have never seen a negative effect due to grapefruit.......I also eat "creamed spinach" from time to time. I am a BIG believer in "dose the diet"

 

[pellicle]

PS I miss my grapefruit

personally I'd say that you can eat a grapefruit probably without any issue. To me the issue comes from people who just can't stop at one, or people who suddenly gorge on it in ignorance (eg I bought 5 gallons of grapefruit juice at costco because it was $1 a gallon). Remember one grapefruit is not representative of how much juice will be in a tall glass of the juice from a bottle. Few people these days hand juice citrus and are unfamiliar with just how little juice you get from one fruit.

I propose you conduct a test.

1. measure INR on day 1 (perhaps do this and leverage off your regular INR testing day by testing, calling that day 1 and on day 3 test INR again
2. on that day eat a grapefruit (now, I'm going to say don't lather sugar all over it, if you actually like grapefruit you won't need this.
3. test INR on day 5
4. graph this and see if there was a bump in the graph after the grapefruit

if no bump then you can eat a grapefruit

note: if you have to cover that thing in sugar to mask its horrible bitter taste then chances are you don't actually like grapefruit.

also this does not apply to bottled (sugared) grapefruit juice, but you could do the above test on one glass.

If you like to have a glass of that every day with breakfast, then you can test to see what effect that has.

Test and know thyself.

Best Wishes