A new comer with some questions on valve performance over time.

[Justin1981]

Hi everyone,

I'm a newbie to the forum and I'm looking for some advice from those of you who have been down this path before. I am a healthy, active, non-smoking 31 year old male who was diagnosed with BAVD and moderate/severe leakage a few months ago. At this time I am being monitored every 6 months and my leakage and ascending aorta have not yet grown to the concern of surgery, however for the time being I am trying to educate myself for the decisions that will lie ahead.

I have read many of the threads on here already and appreciate all the sage like advice that is so freely given. Seeing a thriving community of survivors is enough to ease much of my concerns, but I do have a couple questions that I didn't specify see addressed elsewhere.

First - I have read many informative posts on this site about valve selections, but much of the research I have done seems to indicate that while a mechanical valve in most cases means non-repeat OHS, there is a slow but steady increase of risks per each year after surgery involving clotting, internal bleeding, stoke etc, dealing with the actual valve that are in most cases fatal. Tissue valves seem to be safer, but I also read that after 10 years a tissue valve will have the same risk of similar complication that a mechanical one would have.

I don't mean to be doom and gloom, but can anyone speak to the long term risks of each valve? I know statistics are very general (and possibly dated), but in my research I even saw one site that cataloged that life expectancy after this surgery is 16-22 years from valve related problems depending on the valve selected. I find difficulty believing this though after reading posts and seeing several surviving members 30+ years after their surgery on this forum

Second - Novant Health - a local hospital chain in the Carolinas, has recently affiliated themselves with the Cleveland clinic in Ohio. From what I have gathered the general opinion is that the Cleveland clinic is the best, but I am wondering if anyone has had a valve replacement in a Novant facility and would care to talk about their experience.

I apologize as I didn't mean to write a book and I appreciate any assistance that anyone can offer.

Many thanks,

Justin

 

[Fundy]

Basically with a tissue valve your going to expect it to fail. If you were in 60's or 70's they have something like a 70-80% chance of lasting 20 years or more. A quote from a Dr. Roselli in a ClevelandClinic webchat mentions if you were 44 , he'd expect the valve to be in a fail state 40% of the time before the 12th year.

My own surgeon mentioned to me that his general recommendation was tissue for someone 55 or over and mechanical for 35 and under. With me being 45 at that time he was 50/50 either way, but had mentioned concerns that he might only expect a tissue to last 6-8 with me before a reop was necessary. I chose a tissue as I'd rather not regret something later in life that was worsened by anticoagulation or possibly a result of it.

The day after surgery I felt awful, real awful and regretted my decision for sure at that time. As I not only didn't want to go through it again, but really wished I hadn't gone through with it then either. However, after two days I felt alot better, and once again am glad I made the decision I did.

At 31, if you choose tissue you most certainly wil need it replaced again. Its slightly possible that a transcatheter valve implantation may be available to you then. But even if it was, that will probably fail in your lifetime and need an open heart surgery, as I doubt a valve, in a valve, in a valve would be a recommended approach.

 

[dick0236]

First - I have read many informative posts on this site about valve selections, but much of the research I have done seems to indicate that while a mechanical valve in most cases means non-repeat OHS, there is a slow but steady increase of risks per each year after surgery involving clotting, internal bleeding, stoke etc, dealing with the actual valve that are in most cases fatal. Tissue valves seem to be safer, but I also read that after 10 years a tissue valve will have the same risk of similar complication that a mechanical one would have.

I don't mean to be doom and gloom, but can anyone speak to the long term risks of each valve? I know statistics are very general (and possibly dated), but in my research I even saw one site that cataloged that life expectancy after this surgery is 16-22 years from valve related problems depending on the valve selected. I find difficulty believing this though after reading posts and seeing several surviving members 30+ years after their surgery on this forum


Justin

Welcome Justin. This rumor of the "cumulative risk" of bleeds, stroke, etc. surfaces every couple years on this forum. I personally don't believe there is a cumulative effect......nor do most folks who have had mechanical valves for several decades. If you do a search of some old posts, you will find one written by a Notre Dame statistics professor which debunks that myth. If it where taken literally, my current risk would be over 100%/yr. after 45 yearss with a valve.....and that ain't so. The risk in a younger person is probably about 1-2% and remains relatively the same until the senior years when it increases due to age and other illness.....and I sure hope the 16-22 year life expectancy is not true....LOL. Stick around this forum and you can learn a lot about your problem and solutions.....and will be better able to separate "truth from BS"

 

[chaconne]

Justin,

The statistics about like expectancy are the average, which includes a lot of the older population. As an otherwise healthy 31 year old, those statistics hold little meaning to you. I think the same thing could apply to accumulated risk of bleed/stroke with a mechanical valve. You are most likely someone who isn't at risk for strokes or bleeding naturally, so if you get a mechanical valve and make sure to stay in the right INR range. You will do fine.

The point I'm trying to make is: you will probably do fine with either a mechanical or tissue valve and do not need to worry about the stats.

 

[camgough]

Hey Justin, I'm 32 and had OHS at 30. My aneurtsm was huge, but my BAV still worked OK so I had valve sparing aortic root replacement surgery. I still have my BAV in my, with a dacron graft in the ascending aorta. By keeping my own valve I do not need any meds at this point, but I will likely need a valve replacement at some point due to the BAV failing. Since surgery I think I have already gone from mild to moderate regurg. I am waiting for this to be confirmed by the cardio. I am monitored annually with an echo. At this point, if needed I would likely choose ON-X mechanical valve if I needed a re-op. Any questions, let me know.

 

[Fundy]

I usually associate the cumulative to be 1% annually over 50 years to be 50% for the entire 50 year period. Thus 50/50 of whether you experience a stroke event during the 50 years. And the 1% number applies to not only AVR with mechanical and proper anticogulation levels, but also anyone with a tissue aortic valve as well.

So increased risk in terms of stroke for a mechanical vs a tissue is only when your too low with INR. If you were out of range enough to be twice that risk, then 2% annually over 50 years results in a statistical probability of 100% chance of a stroke occurrence sometime in that 50 years.

The increased risk due to no ACT at all, I've seen get mentioned as 10% annually. But also only 3-4% more annually. I think the 3-4% is the more credible figure. Dr. Cooley mentions several patients with mechanical valves never taking anticoagulants for over 30 years with no troubles.

I don't hear too much discussion about the increased bleed risk such as brain hemorrhage actually occurring. Its mentioned somehwhere in a sticky post about valve selection here being about 7 to 10 times normal than someone not taking warfarin. But even that must work out to be low in terms of actual occurrence, as I haven't seen anyone here mention anyone with such troubles actually. I guess the bleed risk does figure in most often with surgical procedures and gastrointestinal bleeding.

Cleveland Clinic often quotes mortality rates for conventional AVR at 3% nationally and 1% for them. With most reops having about the same risk for at least first reop. I've seen Canada's published rates for a decade period about 1990-2000 with the total AVR's done and they ranged from just under 3% in this province to almost 6% for Newfoundland. But those would include the deaths from even the high risk AVR's as well.

 

[Justin1981]

I knew it was a good idea to join this forum. I appreciate your answers and that you brought some reality checks to the plate for me.

Originally I was leaning towards a tissue valve first then a mechanical one later, but after reading even more posts when the time comes I think I may just get a mechanical one. My largest fear was lifestyle change, but after hearing from several of you ACT doesn't seem to affect life as drastically as I thought it would as long as it is carefully monitored.

It seems to makes sense to me to avoid additional OHS if a lifetime of slight inconvenience of blood thinners is the only drawback.

This question may be silly but i will ask it anyway. Do those of you on blood thinners self monitor your INR levels at home or are they managed by your Heath care provider?

I have heard that some of the mechanical valves can be heard clicking as the leaflets move. Do any of you find this to be bothersome?

thanks again

 

[scott.eitman]

I went 10 years being checked every 6 months. During those 10 years, minimally invasive surgery became an option as well as homographs. I am sure others aw well.

I recommend taking a deep breath and watching the medical advancements in terms of transcatheter VR and robotics. My hope for you is that the transcatheter VR will become so good over the coming months/years that you will be able to take advantage of that option to easily get tissue valve replacement(s) without OHS.

Robotics may even become a AVR option. I met a patient last night who had a double bypass robotically. He was my first, although I have talked with many MVR robotics patients.

I agree with Dick on the cumulative effects issue.

Stay well
Scott

 

[njean]

.

It seems to makes sense to me to avoid additional OHS if a lifetime of slight inconvenience of blood thinners is the only drawback.

This question may be silly but i will ask it anyway. Do those of you on blood thinners self monitor your INR levels at home or are they managed by your Heath care provider?

I have heard that some of the mechanical valves can be heard clicking as the leaflets move. Do any of you find this to be bothersome?

thanks again

Keep in mind one thing, Justin....reoperations can happen, do happen, even with mechanicals. Nothing is written in stone or guaranteed. However, given your age and there being no other health factors involved, going with a mechanical is probably the most practical option.

I was 24 years old when I had double-mechanical valve implants. In those days (1975), the choice of going mechanical or tissue was left up to your surgeon. I never regretted getting mechanicals nor the fact that I've had to be on anticoagulants for 37 years. It also never interfered with any of my activities and I'll have you know, I was pretty active in my younger years! Taking your coumadin every day and monitoring your INR, become just another part of your life. BTW, I have been home testing for 6 years now and love it!

Take care and I hope that whatever type valve you decide, mechanical or tissue, will be the right choice for you!

 

[bahlvarun]

Best of luck buddy...

 

[Kim54]

I knew it was a good idea to join this forum. I appreciate your answers and that you brought some reality checks to the plate for me.

Originally I was leaning towards a tissue valve first then a mechanical one later, but after reading even more posts when the time comes I think I may just get a mechanical one. My largest fear was lifestyle change, but after hearing from several of you ACT doesn't seem to affect life as drastically as I thought it would as long as it is carefully monitored.

It seems to makes sense to me to avoid additional OHS if a lifetime of slight inconvenience of blood thinners is the only drawback.

This question may be silly but i will ask it anyway. Do those of you on blood thinners self monitor your INR levels at home or are they managed by your Heath care provider?

I have heard that some of the mechanical valves can be heard clicking as the leaflets move. Do any of you find this to be bothersome?

thanks again

Hi Justin,

I had AVR on Oct 16, 2012. I am 54 and have a second generation mechanical valve, Sorin R5-019. This valve is totally silent. I or anyone else do not hear anything at all. I have been doing home monitoring with INR Ratio by Alere for about a year. It is so much easier and convenient. You can also take it with you anywhere. My Insurance paid most of the cost for the machine and pays for most of the cost for strips. I think I pay about $50/3 month supply of strips, I believe. A nurse came to my home and taught me how to use. The only thing I would change is , get a monitor that does not require so much blood.

I hope I have helped in a small way. Good luck to you !!1

 

[ElectLive]

First - I have read many informative posts on this site about valve selections, but much of the research I have done seems to indicate that while a mechanical valve in most cases means non-repeat OHS, there is a slow but steady increase of risks per each year after surgery involving clotting, internal bleeding, stoke etc, dealing with the actual valve that are in most cases fatal. Tissue valves seem to be safer, but I also read that after 10 years a tissue valve will have the same risk of similar complication that a mechanical one would have.

I don't mean to be doom and gloom, but can anyone speak to the long term risks of each valve? I know statistics are very general (and possibly dated), but in my research I even saw one site that cataloged that life expectancy after this surgery is 16-22 years from valve related problems depending on the valve selected. I find difficulty believing this though after reading posts and seeing several surviving members 30+ years after their surgery on this forum

Welcome Justin. This rumor of the "cumulative risk" of bleeds, stroke, etc. surfaces every couple years on this forum. I personally don't believe there is a cumulative effect......nor do most folks who have had mechanical valves for several decades. If you do a search of some old posts, you will find one written by a Notre Dame statistics professor which debunks that myth. If it where taken literally, my current risk would be over 100%/yr. after 45 yearss with a valve.....and that ain't so. The risk in a younger person is probably about 1-2% and remains relatively the same until the senior years when it increases due to age and other illness.....and I sure hope the 16-22 year life expectancy is not true....LOL. Stick around this forum and you can learn a lot about your problem and solutions.....and will be better able to separate "truth from BS"

I usually associate the cumulative to be 1% annually over 50 years to be 50% for the entire 50 year period. Thus 50/50 of whether you experience a stroke event during the 50 years. And the 1% number applies to not only AVR with mechanical and proper anticogulation levels, but also anyone with a tissue aortic valve as well.

So increased risk in terms of stroke for a mechanical vs a tissue is only when your too low with INR. If you were out of range enough to be twice that risk, then 2% annually over 50 years results in a statistical probability of 100% chance of a stroke occurrence sometime in that 50 years.

Justin - Long term risk is probably one of the most misunderstood issue with heart valve replacement, and the communication skills of some cardiologists and surgeons on the topic is often equally poor.

As Dick stated, the risks of stroke and hemorrhage from a mechanical valve combined with ACT are generally speaking not cumulative, but instead are essentially constant over time, at least until the age range of 60 to 70 or so when everyone (not just those with mechanical valves, in other words) is at a higher risk for stroke and hemorrhage. A true cumulative risk would be one that literally gets higher each year. There's a perfect example of this: tissue valve deterioration is a cumulative risk. It’s more and more likely to fail the longer you have it, and it will in fact fail after a certain point in time.

Now, here’s where some confusion often enters in, though: even though the stroke/hemorrhage risk with a mechanical valve is basically constant, and not cumulative, you are at an overall higher risk of having an event long term, than short, as Fundy alludes to. While the risk factor stays the same, since you are exposed to the risk over a longer and longer time period, you are in fact more at risk overall. But in pure mathematical terms, it's also not simply adding up the patient year risk of each consecutive year either. For example, with a 1% patient year risk, someone 50 years later would actually only have 39.5% odds of having had a discrete event, not 50%.

As an analogy, picture flipping a coin. Toss it once and the odds of heads are 50%. Toss it twice and the odds of heads for that particular toss is also 50%. But the odds of heads in either of the two tosses is 75%. But even at 50% odds, the probability of at least one heads will never reach 100% no matter how many tosses.

Now, to muddy the waters a little, let's go back a step. As I said, tissue valve deterioration is a progressive (cumulative) risk, while stroke/hemorrhage with mechanical valves is essentially an isolated (discrete event) risk. But it's not nearly so simple either. For instance, the cumulative risk of tissue valve deterioration is not linear, it will be relatively low in the early years, then risk of failure will really ramp up later on. Stroke isn't exactly a discrete event risk either. Having one stroke will thereafter increase your risk of additional stroke. So these are complex issues that just can't be reduced to simple math.

My point with all of this is to just try and explain that valve selection unfortunately can not be distilled to a simple formula or definitive data set. There are known risks of each choice, but the exact risk we each will face with either choice is impossible to pin down. Historical data is available, and the FDA has perhaps the best available source on the matter, the Objective Performance Criteria (see my post here: http://www.valvereplacement.org/forums/showthread.php?38770-Stupid-question-Re-mech-valves&p=502594&highlight=#post502594). But at the end of the day, historical data is always to a degree outdated and of limited relevance. We may know what risks were for a certain specific group of patients at a certain point in time, but that does not tell us definitively what it will be for an individual patient today.

But I think we can all take great comfort in the fact that the risks of either choice are extremely low, and you should expect nothing less than a normal life expectancy with either choice: http://www.valvereplacement.org/forums/showthread.php?40446-BAV-and-Normal-Life-Expectancy. Best wishes to you.

 

[TheGymGuy]

You are pretty young and while my own stay in the hospital and recovery were pretty good, I would still not want to go through it again. Having said that, if someone asked me about a choice for an active person I would always recommend mechanical, assuming that the person is pretty healthy otherwise. If you were taking no other drugs and the only drug you might have to be on long time is coumadin, its not so bad.

On to some answers:
1. Coumadin is easy to take, I take it with my vitamins every day before I go to sleep, generally between 9pm and midnight.
2. Home monitoring is pretty awesome. If you've ever seen people with diabetes take a drop of blood and use in the machine, we do same thing, though the drop of blood is slightly larger. You test weekly by the way. THough, its possible to test once a month too, once you get really stable.
3. Being active on coumadin is same as being active. Only thing is bruising is a bit easier and if you are at a higher range of your INR bleeding takes a bit longer to stop and head injuries become a lot more dangerous. Though, and in all honesty, head injuries that are dangerous are dangerous PERIOD. Coumadin, just makes them more dangerous due to higher possibility of longer bleeding.

For point 3. above, if this is the sport you are in, you are better off going with tissue valve at least for the first valve, and later switch to mechanical at later age when you are not playing/participating as aggressively.

 

[Mike59]

Guys,

Let's put this into perspective, either tissue or mechanical valves, latest versions/technologies are both excellent choices and both prolong life and more importantly quality of life.

It is a personal choice mainly in the end, unless the surgeon recommends otherwise for medical reasons.

I think it is churlish to keep harping on which one is the better.

Both are fantastic options!

For the record opted for tissue, at the age of 52 in April of this year, feel fantastic and really pleased

Let's look forward to even more advancements in this wonderful technology.

All the best to all facing this difficult decision.

Mike

 

[neil]

fully agree mike,wnich ever you pick is right for you,if it was clear which one is better there wouldnt be this discussion, tissue will mean a re op most likely,mech means anti coags which can bring problems, there you have it, good news is whichever you have is gonna save your life,

 

[Mike59]

Hey Neil,

Good to hear your thoughts - your right

Thanks for your support earlier in the year, much appreciated

 

[DMS]

I am also a newcomer to the forum (which I think is great) and am recently into recovery mode. One thing that is changing in the mechanical valve sphere is the INR values have trended down somewhat, depending on the valve configuration. Improved hemodynamics allow for INR ranges lower than traditionally seen. Mine is being monitored weekly and the range wanted by my surgeon is 1.8-2.5. Along with the ASA and a sensible diet, I feel pretty comfortable there. Since I am 58, I opted for this valve as I did not want to face a potential biological valve replacement in my 70s or 80s. Kind of a wimp that way.

BTW, thanks to all the posters that provided some very good information and reduced my anxiety before I registered!

Good luck with your decision.

 

[coffeelover]

Justin,
Either valve will be a great choice--it will save your life!
I chose the mech and it was the right choice for me.

My valve is quiet--I never hear it!
As for the warfarin, for me it hasn't been a big issue.( I am 8 months postop AVR) My INR stabilized quickly and have been on the same dose since 6 weeks post op.

Go into the OR with a big smile on your face and a positive attitude! I did!
Good luck with your decision!
Take care...

 

[Hodgkins survivor]

Thought some might be interested. RN here. I went to a professional courtesy second opinion (Im already scheduled for AVR december 3) This surgeon was with a team last week that implanted TAVR through a failed tissue valve. Apparently it was very smooth and did not have the fit problem since the tissue valve has that ring around it. I didnt realize they were moving so fast with that. Of course, long term outcomes arent known yet.

 

[Justin1981]

Hi everyone,

I apologize for the lack of response on my part, but I wanted to thank you all for the time and thought that you put into your posts. I went from being uninformed and terrorfied when I first stumbled across this site to feeling more confident in a long and happy life. I have also transitioned from completely dreading the surgery to looking at it as it will give me another chance at life. Thank you for the support and as my knowledge base grows I hope to support others as well.

thanks again