New heart Surgery Patient.

[Rob.D1970]

Hello,
To start out I was just diagnosed with Critical aortic valve stenosis and Severe mitral valve stenosis.

A little history, in 1978 I was diagnosed with acute lymphoblastic leukemia and had a bone marrow transplant in 1980, and now have been Cancer free for 43 years.

So I was informed that I need open heart surgery to replace both my Aortic and Mital valves, I was given the options of the tissue valves or the mechanical valves. So I have read and told that the tissue valve are go for 10-15 years and the mechanical valves are good forever.

What I am worried about with the mechanical valves is that I would be on blood thinners for the rest of my life. With my active outdoor life style of living in rural Northern Minnesota is the chance of accidentally slipping aor hitting my head and having internal bleeding.

With the tissue valves I am not so worried, but in 10-15:years I would have to have these valves replaced. The 2nd replacement tissue valve can by put over the existing tissue valves thru a noninvasive procedure the the artery in the groin area.

Does anyone have any advice, experience or more knowledge on this.

 

[Chuck C]

Welcome to the forum Rob!

Sorry to hear about your diagnosis and that you need valve surgery, but at the same time, welcome to the club- the one that no one wants to join.

What I am worried about with the mechanical valves is that I would be on blood thinners for the rest of my life. With my active outdoor life style of living in rural Northern Minnesota is the chance of accidentally slipping aor hitting my head and having internal bleeding.

I'd suggest that you spend time here reading many of the threads. You will find that those of us on warfarin live active lives. I am just as active now as I was pre-surgery. I run, bike and am competitive in jiu jitsu. You will find that others on warfarin will tell you the same thing. The one thing which I gave up was boxing, at least the hard sparring. At my age, regardless of warfarin, that is probably a good idea anyway.

With the tissue valves I am not so worried, but in 10-15:years I would have to have these valves replaced.

That sounds about right for the longevity of the tissue valves. The biggest factor here is age- the older we are, the longer the tissue valves tend to last. How old are you? Since you were diagnosed in 1978, I know that you must be at least 45. In the US, the guidelines call for mechanical if under 50, tissue if over 70 and between the ages of 50 and 70, either valve is considered a reasonable choice. My understanding is that Europe and the rest of the world has the recommended ages a little different that our guidelines, with under 60 mechanical, over 70 tissue and 60 to 70 as the gray area where either valve is reasonable. It is a personal choice and more and more are choosing tisse valves at a young age, going against the guidelines. This will mean repeat procedures.

The 2nd replacement tissue valve can by put over the existing tissue valves thru a noninvasive procedure the the artery in the groin area.

I hope that when your medical team explained this option to you that they were clear that this is not at all a certainty. If they evaluate you and you are a good candidate for TAVR or TMVR, then they can go through the groin. But not all qualify. It seems that many surgeons and cardiologists don't do a good job of properly explaining this to patients. We have a lot of members here who were told they could go TAVR on round 2, only to learn that they were not good candidates and had to get OHS #2. For you, getting two valves done, this could mean OHS #2 and #3, because one valve could very well outlast the other one. Say your mitral valve lasts 10 years and you happen to not be a candidate for TMVR- that's OHS#2. Then, 5 years later your aortic valve needs replacement, that could mean OHS#3, unless you qualify for TAVR.

You might want to read up on Arnold's story. He got a Ross procedure, which gave him tissue valves for his pulmonary (a donor valve) and his own pulmonary valve moved to his aortic position. The valves tend to last longer in the Ross, than with a standard tissue bioprosthetic, but he did eventually need to get both valves replaced, as is generally the case if one lives long enough. He was told he should be able to get a TPVR for his pulmonary, which failed first. But, instead he woke up from surgery having had OHS#2. Two years later his aortic valve failed- same thing- he was told TAVR and woke up to learn that he had gone through OHS#3.

These decisions are personal. Only you can make the decision and you are the one who will need to live life on warfarin or face future procedures, not your medical team or anyone else. My suggestion is to be informed as possible about your decision. If you are choosing one valve because you believe that you can't be active with the other valve, just make sure that you are basing that on good information. Similar to your expectations about a transcatheter procedure for #2 and #3- be informed that not all who hope to get this non-invasive option end up being eligible.

You can find Arnold's story in the post linked below:

https://www.valvereplacement.org/th...-an-active-lifestyle.38155/page-5#post-927153
Please feel free to ask any questions. There are a lot of members here who have faced the choice that you face and can share with you why they chose the valve they did and how it is working out for them.

Best of luck!

 

[pellicle]

Welcome

Does anyone have any advice, experience or more knowledge on this.

Hard to give a more comprehensive answer than Chuck has.

Hit us up with specific questions

Maybe watch this (take notes).



Best wishes

 

[dornole]

Welcome, fellow Minnesotan. Sorry to hear you have stenosis in two valves. Are you experiencing a lot of symptoms? I did when I had mitral stenosis. I was able to have that treated with a valvuloplasty balloon through the groin and keep my native valve (at Abbott hospital, Minneapolis Heart Institute ). I don’t know if that procedure is even possible with aortic valves, but it could be worth asking. An interventional cardiologist would do it, not a surgeon.

I’d check the threads here for info on 2 valve replacements as there seem to be some added considerations with the flow of blood thru the heart when you are talking 2 replacements vs one.

Ask away any questions, that’s what people are here for.

 

[Croooser]

Chuck summed it up perfectly.

 

[treichert0312]

Ditto to what Chuck said. Personally I planned to get TAVR on my follow up. However, my pig valve did not go stenotic- one of the leaflets broke. I had to get OHS again, and figured with blood thinners/anti coagulation, that life was over. Just last June, 2022. Not true! Active life style continues! For me, I should have gone mechanical with first aortic valve replacement at 48 rather than 55. Yes, pig valve did not make it even 10-15 year. No guarantees. But good living is possible.

 

[tom in MO]

At age 55 I went mechanical since I've had several operations already and don't welcome any operation if they can be avoided. For you, with two valves needing replacement, you are looking at twice the risk. There is no guarantee that a minimally invasive replacement can be done, it works for many but not all.

For mitral mechanical valves often the INR goal is 3. Which means it would take 3x longer for a bleed to coagulate and stop. So on one hand, it's an almost certainty that the two tissue replacement valves won't last forever. You will experience similar symptoms as now when your valves begin to fail. Weigh that against the risks you take given your daily rural lifestyle. Is it almost a certainty that you will get into a situation where taking 3 times longer for your blood to coagulate will result in death or severe impairment?

Either choice is a good one because you live. There's a philosopher who says that when it's difficult to choose between two paths it's because each path has merit thus there is no "wrong" choice.

 

[tommyboy14]

Hi Rob,

the only issue I see for you is the following:

There now new treatments for Leukemia, such as BTK inhibtors which are quickly becoming the standard for treating Lymphoma and CLL because they have less side effects and more effective than Chemo. Now, you cannot take these inhibitors when you are on Warfarin, because then there is a very high risk of Bleeding (These inhibitors are one of the very few medicines with a strong warfarin interaction).

So you need to discuss with your oncologist (and also get some genetic testing) to be sure that you will stay in remission and not develop a blood related cancer sometime later in your life. You should also ask him about these potential warfarin interactions. This is not medical advice, but just a suggestion of what you may want to discuss with your doctors. This information will help you make a better decision between tissue valve and mechanical.

I will say that if you are below 65 it is likely that this will not be your only procedure if you get a tissue valve. Surgeons claim that the Inspiria Resilis valve will last long, but we will not have the data for another decade to know for sure.

Good luck with your decision
Tommy

 

[pellicle]

Now, you cannot take these inhibitors when you are on Warfarin, because then there is a very high risk of Bleeding (These inhibitors are one of the very few medicines with a strong warfarin interaction).

heparin replacement?

 

[tommyboy14]

My understanding is that you need to take these BTK-inhibitors for a least a year and in some cases lifelong. So I am not sure if you can do Heparin replacement for that long and if/or Heparin has any interactions with these inhibitors (I honestly dont know).

This recent article discusses these risks.
https://www.jacc.org/doi/10.1016/j.jaccao.2020.11.016
Perhaps it is best to consult a cardio-oncologist to ask. The article says that treatment should be patient specific.

Mechanical valve may still be the optimal choice in this case (like in most cases in people 65 and younger), but it is best to have all the info before making a decision.

 

[Rob.D1970]

At age 55 I went mechanical since I've had several operations already and don't welcome any operation if they can be avoided. For you, with two valves needing replacement, you are looking at twice the risk. There is no guarantee that a minimally invasive replacement can be done, it works for many but not all.

For mitral mechanical valves often the INR goal is 3. Which means it would take 3x longer for a bleed to coagulate and stop. So on one hand, it's an almost certainty that the two tissue replacement valves won't last forever. You will experience similar symptoms as now when your valves begin to fail. Weigh that against the risks you take given your daily rural lifestyle. Is it almost a certainty that you will get into a situation where taking 3 times longer for your blood to coagulate will result in death or severe impairment?

Either choice is a good one because you live. There's a philosopher who says that when it's difficult to choose between two paths it's because each path has merit thus there is no "wrong" choice.

Tom,
My surgery will be open heart to replace both valves, not noninvasive. 10-15 years down the road would be noninvasive to insert new tissue valves.

 

[tom in MO]

Tom,
My surgery will be open heart to replace both valves, not noninvasive. 10-15 years down the road would be noninvasive to insert new tissue valves.

I realize that Rob. It's just one cannot predict the future. When the time comes for replacement, noninvasive surgery may not be a certainty. We've had some members who wanted it but couldn't get it for one reason or another (e.g. scarification, valve size.)

 

[Rob.D1970]

I realize that Rob. It's just one cannot predict the future. When the time comes for replacement, noninvasive surgery may not be a certainty. We've had some members who wanted it but couldn't get it for one reason or another (e.g. scarification, valve size.)

Yes, I understand that. I biggest fear with the mechanical valves is that I would have the constant worrying about the blood thinners medication and the risk of internal bleeding if I were to slip and fall or bump my head.

 

[pellicle]

biggest fear with the mechanical valves is that I would have the constant worrying about the blood thinners

Well. Managed INR brings that back to about aged related general population risk levels

 

[Rob.D1970]

Well. Managed INR brings that back to about aged related general population risk levels

Pellice.
Speak to me in layman's terms and explanations.

 

[tommyboy14]

I will try to explain in Laymans terms.

Did you know that even for a normal person, the chance of getting a stroke after age 50 is roughly 20%-25%? So long you manage your INR well (meaning that you stay within the range required for your valve), the chance of somebody with a mechanical valve getting a stroke is roughly the same as for a normal person. It is like the valve isnt there.

The key here is to manage your warfarin medication such that your INR stays within that range. Self-managing your medication without the direct input of a medical professional may seem daunting. However, the good news is that with the technology we have today, this is fairly easy. Indeed, in many European countries, the standard procedure is to train patients to self-manage their medication because so many studies have shown the benefit of that approach. All of these studies show that self-management helps your INR to stay within a given range a greater fraction of the time then when it is management by doctors in a clinic. The main reason for this is (I believe) that everybody is different and only you know how your body reacts to warfarin and how to best dose it.

I hope that this helps.

 

[tommyboy14]

Here is the study where the 20% stroke figure comes from:

https://pubmed.ncbi.nlm.nih.gov/32090315/

 

[pellicle]

Speak to me in layman's terms and explanations.

I see that Tommy has had a go, but I'll have a go without reading what he wrote (I'd call that cribbing).

As it happens as you age you have a different chance for something to occur. This is expressed as "likelyhood" or "chance" or even "risk" ... such things are often expressed in "odds" given by (say) book makers (or actuaries).

The chances of certain things happening to you (the third person infinitive, or the "general you") increase as you age. Cancer is a good example. The chances that a 15yo will get prostate cancer are much much lower than then chances of a 60yo getting prostate cancer.

Thus we have "age related risk".

There is the chance (I'll call it risk from here on) that something happens to you which increases in possibility over time. Death for example (to quote from Fight Club) "On a long enough timeline, the survival rate for everyone drops to zero." (the narrator). This is called the age related risk.

Now I mention the general population as a "mixed bag" of unknown issues (maybe no issues). If we know someone has an issue (say obesity) we know that their risk of diabetes is higher than "just their age related risk".

So what I said was that with well managed INR you have "the age related risk" of a stroke or a bleed. Note that this is not zero and it increases with age.

Hope that clears it up.

Best Wishes

 

[pellicle]

I didn't crib ;-)

The key here is to manage your warfarin medication such that your INR stays within that range

good point above too, worth repeating

 

[enkaynj]

Hello,
To start out I was just diagnosed with Critical aortic valve stenosis and Severe mitral valve stenosis.

A little history, in 1978 I was diagnosed with acute lymphoblastic leukemia and had a bone marrow transplant in 1980, and now have been Cancer free for 43 years.

So I was informed that I need open heart surgery to replace both my Aortic and Mital valves, I was given the options of the tissue valves or the mechanical valves. So I have read and told that the tissue valve are go for 10-15 years and the mechanical valves are good forever.

What I am worried about with the mechanical valves is that I would be on blood thinners for the rest of my life. With my active outdoor life style of living in rural Northern Minnesota is the chance of accidentally slipping aor hitting my head and having internal bleeding.

With the tissue valves I am not so worried, but in 10-15:years I would have to have these valves replaced. The 2nd replacement tissue valve can by put over the existing tissue valves thru a noninvasive procedure the the artery in the groin area.

Does anyone have any advice, experience or more knowledge on this.

Hi Rob. My experience w going tissue valve has been phenomenal. Going on year 12. Some on this forum are in their 18th year and going strong. I am not very disciplined in taking medications. I dreamt of extremely nonsensical situations such as being stranded on a deserted island for months and how I would manage without warfarin if I had a mechanical valve etc etc and so decided to go with a tissue valve; would say I am lucky it has not acted up. I was 51 when I was fitted w it so I could have gone either way based on the guidelines. Do what you feel is appropriate after analyzing the pros and cons. Good Luck and let’s know when you decide !!