Imminent re-operation of heart valve

[V__]

having severe mitral valve leakage.

BOTH doctors are VERY concerned about a potential 4 th surgery.

Sorry to hear that the mitral valve leakage seems to have progressed. I'd be interested in knowing the options being offered, if you can elaborate. AFAIK, MitraClip and TVMR might be applicable, in principle. TVMR is not done very often, but may be used when there is a possibility to "anchor" the device in the mitral location. Perhaps it's an option in your case, since you have the annuloplasty ring.

Plus, other stuff can happen causing a redo surgery, like bacterial endocarditis or a cardiac test gone wrong and ending up in congestive heart failure.

I think this is a very good point. "Other issues" may well come up later on.

 

[V__]

TVMR is not done very often,

Just checked, it seems currently in the USA TVMR is restricted to clinical studies. Although there are a lot of valve models being tested. From this article:

• Transcatheter mitral valve replacement (TMVR) in high-risk surgical patients with severe native mitral valve regurgitation is feasible using dedicated devices.
• To date, the Tendyne TMVR system is the only system with CE Mark.
• In the United States, all TMVR systems are being studied and are not ready for commercial use outside of clinical trials.
• Significant advances in device technology, delivery systems, and implantation techniques are essential to avoid vascular complications, left ventricular outflow tract obstruction, and achieve good anchoring to reduce paravalvular regurgitation.

(And yes, I realize this is a very different topic from the original thread. So I should stop here.)

 

[sandra]

Your symptoms of fatigue, daytime sleeping and light-headed are fairly acute. Don't wait too much longer. In a review of autopsies of Italians who died of BAV, the age range was 17-80 with the median being 55. These people had no warnings. To me it sounds like a second opinion is what you need to help guide you to the best path.

That is actually very scary. I'm not able to get in for my surgery any earlier. Apparently, I just have to wait my turn. In November 2014 prior to my December 2014 surgery I had very severe symptoms and was admitted to hospital via emergency. I stayed in hospital on a heart monitor for 14 days - until they could fit me in for surgery. Even then I was prepped up one morning to go in and at the last minute it got cancelled due to a patient requiring an emergency heart/lung transplant. Services in Australian Public hospitals have waiting times.

 

[sandra]

Hi Sandra,

you may want to get a second opinion. I find it strange that your surgeon told you that a mech valve is not an option. Is there a specific physiological reason for that?

If you are set on a tissue valve, you may want to ask for the Edwards Inspiris Resilia valve. Apparently it will last longer in someone your age and when the time comes to replace, there is a greater chance (but no guarantee) of replacement via the groin. If you go with a tissue valve now, there is always a risk that you will not be a candidate for TAVR next time.

Finally on the gradients. I would have thought that someone as fit as you would prefer a mechanical valve, since the gradients are much lower. My 25mm ON-X valve has a 5 average and 10 peak gradient. A lower gradient means that you get more out of your heart in terms cardiac fittness.

I never heard of K2 being able to reverse calcification.

Thank you for your reply. I am going to discuss this with my local doctor today. He is part of my care team and can advocate on my behalf. I didn't know that gradient levels were as low as 5 or 10 with a mechanical valve, and it does make sense that cardiac fitness would be much improved with that. However, I was told that I can't change to a mechanical valve now. I don't know why. I didn't ask because the idea of a mechanical valve doesn't appeal to me - and it still doesn't despite the obvious benefits. There are no guarantees with what ever I choose. And my preference is for quality of life over quantity - and I hope I don't regret saying that. It's a gamble. I will ask about the Inspiris Resilia. Thank you for telling me about it. kind regards

 

[sandra]

Did you encounter any issues with taking anticoagulation medication for 3 months?
If it was warfarin, what are your concerns with taking it?

 

[sandra]

I had some common problems. Bleeding of the gums and nose - annoying: especially in public/work after biting into my lunch. No other symptoms. The cost lol - too expensive. I wasn't on Warfarin though. I was on Rivaroxaban (Zarelto) 20mg.

 

[sandra]

Hi Sandra. You already told these people in no uncertain terms that 1. You don't want to take blood thinners and 2. You do not want to deal with the ticking sound. That is where the conversation of getting a mechanical valve should have stopped. But from past experience with this site they will not let this go. Your decision is meaningless to them.

Yes it is true that I can't and don't want a mechanical valve.

 

[sandra]

Hi Sandra - welcome to the forum. I have some similarities to you though not quite the same.

I had aortic valve replacement in January 2014 when I was 60. I too had a 19mm bovine valve, and my average gradient post surgery was 18, peak 36. Three years later in 2017 at my annual echo my average gradient had suddenly jumped to 32, peak to 58, effective orifice area was 0.76. I was immediately referred to a cardiac surgeon for a surgical reassessment.

I had TOE (TEE) and further echos. There was nothing wrong with my valve - the surgeon explained that I had “moderate patient prosthesis mismatch” - my valve is effectively too small for my body size - I’m slim, I’m 5ft 4ins (162cm) and 46 kilos. My pressure gradients on annual echos have remained in the 30’s average and 50’s peak, always the effective orifice area is at 0.76. I have a very loud murmur which sounds like the murmur of aortic stenosis but it isn’t. I have no symptoms. I’ve learned that pressure gradients on echo and orifice areas do not appear to have the same significance or meaning as with a native valve on echo. For example, the real orifice area of the 19mm valve is clearly not just 0.76 but that is the "effective area”, and with me it’s due to the mismatch between my body size and the valve. The cardiac surgeon would not have been able to put in a larger valve because the size implanted is due to the size of the annulus which is accurately measured during surgery. The annulus is very fibrous and tough and cannot take a larger valve than it’s measured size (I believe a valve can be implanted supra-annularly which means a bigger valve can be put in).

The surgeon I saw in 2017 said he would recommend a mechanical valve when I need the valve replacing…I would not want that due to the ticking noise and warfarin. The surgeon wouldn’t do a redo back then as he said my mortality risk was "too high” - well I think that gets higher with age but once the valve is degenerated then that over rides the risk. When my valve goes wrong then I will go for a tissue valve again..

You wrote that one of your leaflets is severely calcified - would that be the cause of your increased pressure gradients ?

I take vitamin K2, been taking it since 2008, I started taking it after reading on a cardiologist’s blog about it and also because it helps with osteoporosis. I had some calcification on my native bicuspid valve…though I don’t think the calcification on it was too bad, it was only “moderate” when I had the valve replaced. I begin to question whether I should have had surgery originally when I did as I had felt very fit and well then…but the original surgeon said I could have “sudden death” - I wonder about that, but can’t go back in time LOL

All the very best to you, do let us know how things go.

I find what you have written here extremely interesting. We do have similarities. I'm not as familiar with the figures and information on echocardiogram reports as you are, so I'm not sure how mine may compare other than the average gradient. From what I can glean, my heart is otherwise functioning quite well. There is nothing concerning stated in the summary of my report. All is normal apparently. My doctor says the TOE (TEE) shows a leaflet that is severely calcified and not opening or closing. He also says the centre of my valve has calcification - not sure what it is sticking too. Interesting what you say re: the size of your tissue valve being mismatched. My surgeon says he is going to try to put a 21mm in for my this time. I wonder how that will go. I hope it works, as that may give me a better chance at being a candidate for a TAVi the next time round. I really wonder what causes gradients to jump dramatically after being stable for a number of years. It doesn't make for peace does it? I hope yours remains stable. It is especially hard to know what is going on inside when we don't have any symptoms (or mild symptoms that could easily be attributed to something else). Also interesting that you had your operation when it seems that you didn't have a lot of calcification in the valve. Mine was completely stuffed. They kept me in hospital as it was 90% blocked apparently. I had been collapsing for months upon very little physical exertion. The local doctor (a new one to the clinic) said I had a mental health issue after I reported falling unconscious the day before! But that is another story.

 

[sandra]

These people??
I have experienced 3 open heart surgeries and only recommend whatever valve keeps people from having repeat surgeries. My surgeon was one of the world’s best and he was concerned about my 3rd surgery.
He’s retired now, and I’m having severe mitral valve leakage. I’ve spoken with a
Renowned robotic surgeon and an interventional cardiologist. I’m due for a TEE and CT w contrast. BOTH doctors are VERY concerned about a potential 4 th surgery.
Do not take redo’s lightly. Plus, other stuff can happen causing a redo surgery, like bacterial endocarditis or a cardiac test gone wrong and ending up in congestive heart failure.
Please do not put people down, for their experiences are real.

I am a bit confused. Was your comment here on this thread for me? What is the meaning "these people"? And when you say "please do not put people down, for their experiences are real"? I haven't put anyone down, so I am not sure why this reply has come up under my original thread. Would you be kind enough to clarify please. Thank you

 

[pellicle]

I am a bit confused. Was your comment here on this thread for me?

I think Gail was commenting about the drive by slammer who got his posts deleted.

I hope you weren't offended and I'm sorry you had a rough introduction.

Happy New Year

 

[sandra]

I think Gail was commenting about the drive by slammer who got his posts deleted.

I hope you weren't offended and I'm sorry you had a rough introduction.

Happy New Year

Thank you for the clarification.

No problem

Happy New Year also

 

[slipkid]

Thank you ****.
My surgeon has said that replacing my tissue valve with a mechanical valve isn't an option. Also, l don't want to have to take warfarin. Plus, l don't think l would cope very well with clicking noise.

Do not let the fear of a clicking noise enter into your decision.

Many of us hear not a peep from our mechanical valves (I'm one of them).

Also warfarin is not the end of the world. You could be on something a lot worse. It's an inconvenience but not much more than that.

Go with whatever your heart tells you (pun intended) but sounds like your surgeon has made the decision already & mechanical is out so there's that.

Best wishes for a solution!!

 

[sandra]

Thank you for your reply. I am going to discuss this with my local doctor today. He is part of my care team and can advocate on my behalf. I didn't know that gradient levels were as low as 5 or 10 with a mechanical valve, and it does make sense that cardiac fitness would be much improved with that. However, I was told that I can't change to a mechanical valve now. I don't know why. I didn't ask because the idea of a mechanical valve doesn't appeal to me - and it still doesn't despite the obvious benefits. There are no guarantees with what ever I choose. And my preference is for quality of life over quantity - and I hope I don't regret saying that. It's a gamble. I will ask about the Inspiris Resilia. Thank you for telling me about it. kind regards

I did go to my doctor and ask about the Inspiris Resilia. He rang the Cardio Thoracic dept at the hospital where I am going to have my surgery, and was told that this is the current tissue valve being used for patients. So that is great news

 

[Superman]

I don’t really have a dog in this hunt, but if I were 64 and my medical team was telling me that this is the last open heart they were going to do on me, AND that I could not have the one option that is most likely able to ensure no subsequent operations are necessary - I would insist that they be very specific as to why. I would also want to know the plan if the new tissue valve starts to deteriorate whilst I’m otherwise healthy again.

So far the plan seems pretty stupid (on their part)

- We won’t do another open heart after this one for *reasons*
- We won’t do a mechanical valve this time for *reasons*
- Plan is a TAVR if this one fails so we’re putting in this tissue valve that we know is too small for a TAVR.

That’s what they’re going with? Maybe I misread something.

 

[Gail in Ca]

Sorry for the confusion. You had quoted the person that caused me to respond that way, so I thought you would get what I was saying. I got a 25mm my last surgery. I’m a lean woman , not large and my surgeon wanted the largest valve possible for me.
Now to respond to V_, The interventional cardiologist will need the results of the TEE before he knows if I am a candidate for the mitral clip. He said it looks like my mitral valve area is tight.
The robotic surgeon needs the CT scan to give him a better idea as well. Of course, a surgeon wants to do surgery! I mentioned the excessive scar tissue from my last surgery. He said he would enter on my right side, through the rib(s) and work his way to the mitral valve. He mentioned bypassing the scar tissue issue that way. He mentioned a tissue valve, but I’m leary of that. My Mom lived to be 101 1/2! In my 60’s I might need another surgery down the road.
I’ll start another thread when I know their final thoughts.

 

[V__]

Hi @Gail in Ca ,

Thanks for the reply. It's helpful in many more ways than I thought it might be

if I am a candidate for the mitral clip. He said it looks like my mitral valve area is tight.

Interesting... I didn't realize the size could be a limitation with the mitral clip.

He said he would enter on my right side, through the rib(s) and work his way to the mitral valve. He mentioned bypassing the scar tissue issue that way.

This sounds like a "minimally invasive" surgery that I had. I was wondering if the scar tissue is a significant factor only when the same type of surgery is repeated (for example, all open-chest operations, or all minimally-invasive ones with the same access location). But maybe it's not as important when the surgical method changes. Sounds like the change of approaches is indeed deemed beneficial.

He mentioned a tissue valve, but I’m leary of that. My Mom lived to be 101 1/2! In my 60’s I might need another surgery down the road.

Sure. Sometimes I'm also wondering about the next 50 years... if I get to live that long

I’ll start another thread when I know their final thoughts.

Makes sense. Thanks in advance. And all the best with figuring the way forward!

 

[sandra]

I don’t really have a dog in this hunt, but if I were 64 and my medical team was telling me that this is the last open heart they were going to do on me, AND that I could not have the one option that is most likely able to ensure no subsequent operations are necessary - I would insist that they be very specific as to why. I would also want to know the plan if the new tissue valve starts to deteriorate whilst I’m otherwise healthy again.

So far the plan seems pretty stupid (on their part)

- We won’t do another open heart after this one for *reasons*
- We won’t do a mechanical valve this time for *reasons*
- Plan is a TAVR if this one fails so we’re putting in this tissue valve that we know is too small for a TAVR.

That’s what they’re going with? Maybe I misread something.

Correct and thank you for a nice concise summary of my situation. Gives me clarity. I have an upcoming appointment with my cardiologist (Jan 17th). I will discuss these questions and concerns with her. She works in conjunction with my surgeon

 

[Mister_James]

Thank you ****.
My surgeon has said that replacing my tissue valve with a mechanical valve isn't an option. Also, l don't want to have to take warfarin. Plus, l don't think l would cope very well with clicking noise.

You would rather go through what you are going through because Warfarin is...?
If you have 2 open heart surgeries, you will be lucky not to develop a branch block or afib and end up on warfarin.
Talk to your doctors and do not let that 12-20 years bio valve story move you too much, you don't want a 3rd redo.

 

[Groy]

Happy New Year, I am very pleased to have recently discovered this forum. When I was 55 I collapsed on my treadmill at home and ended up in hospital where it was discovered that I had a Bicuspid Aortic Valve. I was kept in hospital for 19 days as it was deemed unsafe to let me go home. During that time most of the cardiologists I spoke to recommended that I have a mechanical valve replacement. Then one cardiologist took a long time to explain all the details and asked me if I would consider a tissue valve. I decided that would be a much better choice for me. In December 2014, I had a 19mm bovine valve put in. My average gradient after surgery was 18. Over the next six and a half years my routine echocardiograms reported a stable gradient between 18 and 22 and I was told to expect my valve to last until I was at least 70. Six months ago (now age 64) I went for my next routine echo and the average gradient came back as 58. I was totally shocked as my cardiologist said I needed a redo asap. At this stage I was extremely fit and asymptomatic. I am a keen hiker and was still racing up and down mountains. I asked for the echo to be redone, but they declined. Instead my heart team decided to treat me with blood thinners for 3 months in case it was a blood clot in the valve. I took the thinners. The next echo reported my average gradient to be 73. I then had a CT scan and a transesophogeal echo - both of them returned an average gradient reading of 63. That was about 6 weeks ago and I was then placed on the wait list for surgery. I am a public patient (in Australia) and the current wait list is about 60 days, so I am expected to go in for surgery late this month (Jan 2024). I found this website and started reading. My main questions are: has anyone gone from a gradient of 22 to 58 (or similar) in the space of two years? What could have caused this to happen? My cardio team say it is just bad luck (but they do also say that they have never seen it happen). How long should I expect from the next tissue valve I get? I know that is impossible to answer. The valve I have in now is a 19mm one. My surgeon is hoping to replace it with a 21mm one. Apparently he is looking ahead to the next time my valve could need a redo, and has told me that Open Heart Surgery for a third time is not something he will do. The alternative is to replace the valve through my groin via an angiogram, but he says that the minimum valve that can be used for this procedure is a 23mm, so not an option for me. So what is my option if this next tissue valve fails? Surgeon says I can't switch to having a mechanical valve as I have a tissue valve. I am a very young 64 year old (65 this week). I am 48 kilos and otherwise very healthy and get regularly told that I look less than 50. Does this mean that I might be young on the inside too lol? Does this mean that my next valve might not last ten years? I was reading here this morning that tissue heart valves decline faster in younger people. Two days ago I hiked 11 kilometres with an elevation gain of 514 metres (lots of up and down hills). I did this in three hours. How can I possibly do this with such a severely calcified valve? Apparently one leaflet is so calcified that it is stuck open, so my regurgitation is quite severe. My only symptoms are that I get very fatigued and I often sleep during the day. I was also feeling a little light-headed on my recent hike (not dizzy). Oh, and I forgot to mention that I was doing some research recently and came across journal articles researching the effectiveness of K2 supplementation for reducing aortic valve calcification. At the moment it is inconclusive, but studies are ongoing. I began taking K2 a month ago. Has anyone used K2 and reversed their heart valve gradient level? I have read one or two people's comments on this forum where they have stated that they are using K2 with mixed results.
Thank you for reading and listening to my story. I would welcome any replies giving me some light to my questions.
kind regards
Sandra

Hello Sandra

I'm sorry to read about your situation.

I would like to tell you that 7 years ago my cardiologist discovered a mild stenosis in my aortic valve (bicuspid valve).
I asked the doctor the same question about vitamin K2, I also asked if it could harm me.... he told me that no mineral or vitamin was going to help me but it would not harm me more than necessary (it was still my natural valve); Since then I exercised, although not nearly as much as you do, and I consumed vitamin K2 and D3 brought from the US, in short, it didn't work, at least for me.

I, like you, was asymptomatic.

7 months ago it was discovered that my stenosis was severe to almost critical and one of the leaflets of my valve was almost static because to much calcium on it; 5 months ago they replaced my aortic valve with a mechanical one (on-x).


I wish you the best outcome.

 

[sandra]

Hello Sandra

I'm sorry to read about your situation.

I would like to tell you that 7 years ago my cardiologist discovered a mild stenosis in my aortic valve (bicuspid valve).
I asked the doctor the same question about vitamin K2, I also asked if it could harm me.... he told me that no mineral or vitamin was going to help me but it would not harm me more than necessary (it was still my natural valve); Since then I exercised, although not nearly as much as you do, and I consumed vitamin K2 and D3 brought from the US, in short, it didn't work, at least for me.

I, like you, was asymptomatic.

7 months ago it was discovered that my stenosis was severe to almost critical and one of the leaflets of my valve was almost static because to much calcium on it; 5 months ago they replaced my aortic valve with a mechanical one (on-x).


I wish you the best outcome.

Thank you for your reply Groy.
I trust you're doing well after your surgery.
It's interesting about the K2/D3. I think there's something in it as there are ongoing research projects exploring its efficacy. I've been taking it, and am curious to see if there may be any change. I will find out after my surgery report l guess