Tissue or mechanical?

[67walkon]

Shelly, welcome. You should get your husband to read some of these posts.

I'm 57 and very active. 2 months ago, I got a treated bovine valve. Based on my own research of medical journal articles and what I could find here, I'm guessing it should go over 20 years. It could need replacing much sooner, and from what others have pointed out, it might go 25 years.

Personally, I concluded that they will probably have vastly improved replacement techniques in 20 years. Also, I might die before then from something else. Although others don't have an issue with coumadin, I have been on and off it for afib issues and don't want to be on it, so I choose a tissue valve. Hopefully, but not surely, the maze procedure I had will permanently end the afib and I'll be good for another 20 to 25 years. Then I'll be too old to care much!

John

 

[tobagotwo]

Note that the sticky selections were written for younger people than me, one for someone in his 30s, another for someone in his 40s. I was 52, when mine was done. However, some of the same issues would apply, as would most of the bad and good points. At 56, it would be a very unlikely set of circumstances that would require more than one more OHS.

Quality of life in these cases rests more with your personal perceptions than with reality, which places the life risk values quite similar.

Best wishes,

 

[Turkey Hunter]

I don't know how valid a test this would be. It could be worthwhile if you are someone who has a lot of medication sensitivities, and happen to be one who reacts strangely to a lot of meds. But since Coumadin has very little side effects, and is easily managed (when done by people who know what they are doing) it would be just a case of deciding whether or not you are going to be someone who can stick to a daily medication. There are no predictors in this type of "trial use" that will let you know what your body will do in 30 years when you are older. It almost seems like telling someone who's considering a tissue valve to do a "practice OHS" to see how well their body bounces back so they know what future surgeries will be like.

Not to hijack the thread; but I don't think that you quite understood the nature of the suggestion. I do not use any ACT and hope not to ever use it. (but would be able to deal with it due to the knowledge I gained here at VR.Com) But I have been around long enough on this site, and others, to read many posts where folks do have a tough time managing their coumadin....and not necessarily because they don't know what they are doing.

and is easily managed (when done by people who know what they are doing)

That is not a fair assumption.

Now back to the main topic.

Shelly, welcome and I think you are being very wise to get other opinions and to get yourself educated about all the options that you and your husband face. ( I am a bit biased about Cleveland.....they're great!!!!)

IMHO, this is a very personal choice that no one can really help with. (other than giving their perspectives) But that can't make the choice for you. You must weigh all options and choose the one that feels right for you. You'll know which one when it is there in front of you, I did.

God Bless and feel free to ask any questions that come to mind.

Ben

 

[shellyb]

This site is wonderful! I want to thank everyone for your responses. It isn't easy to choose what type of valve to use and both of us have come to realize that but this site provides valuable support and hope to those of us new to all of this.

Once again, thanks!

Shelly in SD

 

[Karlynn]

Not to hijack the thread; but I don't think that you quite understood the nature of the suggestion. I do not use any ACT and hope not to ever use it. (but would be able to deal with it due to the knowledge I gained here at VR.Com) But I have been around long enough on this site, and others, to read many posts where folks do have a tough time managing their coumadin....and not necessarily because they don't know what they are doing. That is not a fair assumption.

I do understand the nature of the suggestion. Taking Coumadin for 2 or 3 months is not going to give someone a good idea of whether or not they will have a life-time of ease in management, or continual ups and downs. It can take that long post-op to develop an in-range group of tests for someone post-opf. It most often is not a drug that is adjusted to (as far as always being in-range) immediately. So trying it, in my opinion, will only tell you if you can get used to taking a daily medication and can adhere to a testing routine. For it to tell you how your body will react to warfarin post-surgery, I don't think it will tell you anything. We all know what the body goes through after the huge event of open heart surgery. Coumadin has very few side-effects. So taking a test run with it will most likely not be necessary as far as side effects.

In reading the Anti-coagulation forum a person can see that the majority of the problems posted most often have to do with lack of knowledge of the manager, not the person taking the drug. I believe most all people can learn enough about management to be able to manage their own successfully, just as diabetics learn to manage their own insulin dosing. Having been on the drug for almost 16 years and taking a look at my history prior to learning to manage my own dosing and after, I'm very secure in saying that for MOST people it is an easily managed drug - when managed by someone who knows what they're doing. I'm sure there are many members here who would agree with that statement.

Taking Coumadin is more like a marriage: you have your ups and downs, but if you commit to the marriage and work at making it successful and committed it will be an over-all positive experience.
Sorry for the continued hi-jack. I just wanted to address Ben's concerns.

 

[ALCapshaw2]

I agree that MOST people do NOT have a problem with reactions to Coumadin and can achieve a reasonably stable INR with proper management.

OTOH, there ARE exceptions. One of our own members, who is an M.D., has reported difficulty maintaining a stable INR even with (presumably) knowledgable managers and the knowledge and understanding available through VR.com and the Anti-Coagulation Forum.

I'm guessing the exceptions are a very low percentage, maybe 1 or 2 percent, maybe slightly more.

'AL Capshaw'

 

[Karlynn]

I agree, there are exceptions to every "rule", but the incidents are low.

In a related topic (and not necessarily in the case of our MD member), I always wonder what someone means when they say "stable". We've seen that some people and managers are looking for the same INR with every test. Stable for others, like me , is when your INR stays in the ballpark most of the time, or can get acceptable INR's with a small dosage change. My last test before yesterday was 10 days ago at my doctors. It was 2.9. My test yesterday was 3.7 (my range is 2.5-3.5) I consider this stable. I made no changes in my dose.


shelly - so as not to totally hijack your thread - the moral of the story is the same comment I made in another post here. "The reality is that both kinds of valves are well received and well tolerated by most people. " The hard part is just trying to figure out which option is going to be the most acceptable to your lifestyle, taking in all the factors that are unique to your husband based on his lifestyle and medical circumstances.

 

[geebee]

Shelly - welcome to you and your husband.

There is really only one question you and your husband need to ask: Is the thought of coumadin more frightening than a second valve replacement in his seventies? The other thing to keep in mind is a tissue valve will cause the same deterioration as his original valve before it needs to be replaced. Depending on how symptomatic he is now and how he has handled it, that needs to be considered.

Other than posing that question, and mentioning deterioration, I stay out of valve choice discussions but there is so much information on this site that my opinion is minimal.

Wishing the best for a smooth sugery and recovery.

 

[shellyb]

I believe that it is totally my husband's choice to choose a mechanical or tissue valve. He's not as inclined to take the time to do the research so it's been kind of challenging for me to find some info for him and not have it be one-sided and also to not try to "tell" him what to do. He is coming to the conclusion that he would like to go with tissue. We'll see what Cleveland Clinic has to say. My husband works long hours, doesn't eat on a regular schedule, doesn't sleep as much as he should and while he realizes he should try and improve upon some of these things, we're both realistic to know that these changes will not happen overnight. He feels tissue is a better choice for him. He's been lucky in that even those his valve is severely stenotic (I'm not sure if that's the right tense) he hasn't had much for symptoms. He says he's a little more tired than usual and doesn't seem to have as much energy but it's been very gradual and it's hard to know if it's due to age or his heart valve. This site has brought up issues that we haven't thought of and we've done more research than we would have done if I wouldn't have found you guys and for that we are both very thankful.

Shelly in SD

 

[Susan BAV]

Hi Shelly -

What you said in your last post was kind of what I was deducing from your other posts. Also, it might be helpful/easier for you and your husband if you click the printer friendly option on [say Tobagotwo's "sticky" thread] and maybe print it out for you husband to read at his leisure. Do you think so? If so, you can click on "thread tools" at the top of this page and there is an option for a printer friendly version.

 

[Rain]

Typical husband.... we love 'em anyway!!

Typical husband.... we love 'em anyway!!

.
Shelly,

I?m glad you found vr.com. There?s a lot of great information here.

Hopefully you and your husband can sit down with his surgeon and have a in-depth discussion about his case. Your husband really needs to be comfortable with his decision whatever that decision is. And no one knows his medical condition, etc better than you and the surgeon.

Ben?s post was right on. There are people who completely understand the drug, (coumadin) yet still have problems with it, although I would say they probably are in a low percentage.... it?s still a risk people need to be aware of. Considering your husband?s lifestyle... I would recommend he try coumadin for a few months prior to surgery.

Don?t let people who had a hard time getting ?stable? post surgery confuse you. Post surgery is NOTHING like pre-surgery when it comes to getting stable with coumadin. I don?t know of anyone who went right into a stable dose after surgery.

I took coumadin for 3 months pre-op. And of course post op... forever.

Pre-surgery I went right into a regular dose.. Post op is much different. Post op you still have meds in your system from the surgery, you are not eating in your normal fashion for a long period of time (I wasn?t anyway), you aren?t getting the same amount of exercise, sun, sleep, stress, etc as you would if you hadn?t just had heart surgery. It?s just not the same. Pre-surgery on the other hand you are still living your life in a normal manner... thus a clear picture... well, clearer anyway... coumadin is always a little gray if you want my opinion.

If it?s (coumadin) something you're going to be stuck with for the rest of your life, I would think taking it for a test run would be a no-brainer. Obviously there are people here who disagree.... it's a decision your husband should make. Hopefully knowing that people who only have got on it after surgery don't know the difference of getting stable prior to surgery.

Best wishes!!

 

[Phyllis]

My husband is having surgery at Cleveland Clinic on September 27th for AVR and repair of an ascending aortic aneurysm. We are so grateful that we opted to go "far away from home" to this facility for their expertise. At home, after all the usual testing, CT, TEE, Heart Cath, etc. we were told by three physicians that my husband had a tricuspid aortic valve. They were headed toward repairing the valve along with the aneurysm surgery. At Cleveland Clinic, we were told by everyone who worked on my husband that he unquestionable has a bicuspid aortic valve. Of course, all of this plays in when making decisions about surgical dates, etc. Are we excited about leaving our wonderful community and support system to have this surgery done? NO! However, in major life decisions you go with the best options for your situation. We feel confident that for us this is the best decision........

Also, someone mentioned the Bicuspid Foundation website. It is a wonderful resource. We are learning to accept and learn all we can about this condition as our children and future grandchildren may be recipients of a bicuspid aortic valve. We are focusing on the positives and remaining GRATEFUL that modern medicine has progressed to the point of being able to save the lives of so many with heart conditions.

I wish you well on your quest to obtain medical guidance. If I can be of any assistance in your quest, please feel free to send me a PM and I will give you my phone number, etc. Since we have just "been there and done that", I truly know what you are going through!!

Just found this post and put your husband on the calendar for the 22nd- we will watching and wishing him the best with his AVR!

 

[Boo I need a valve]

Tough choice

Tough choice

I had my aortic valve replaced 5 weeks ago. I was planning to go tissue until one week before the surgery. I went with an On-x mechanical valve.

Here is what made my decision:

1) At my age ? 36 ? it was really a crap shoot on the new tissue valves. They expect the new ?anti-calcification processes? to increase the valve life, but there is no data to prove this in humans. We wont know for sure for about 10 years, and even there its statistics ? your valve may last longer then average, or much less. As such, if I went tissue, I would have to be prepared for needing a replacement anywhere between 7 and 20 years? likely 12 to 15.
2) I spent the last 5 years watching my valve deteriorate, and had scaled back on my activity in the vain hope that this may help. If I went tissue, I knew I would be tense about ?wearing out? my valve. Mind you, there is no scientific fact behind this fear, I just know that is how I would respond
3) I looked into new technology development and found that it takes about 10 to 15 years for a new valve to get adopted and ?proven?. Example: my On-x valve has been on the market for 10 years, but all the surgeons I talked to saw it as a ?new valve?. I was the second On-x installed at Stanford. As such, if I went tissue now, and it crapped out on the early side, my choices would be no different then today. With a mechanical valve, if something better comes along, I can get a surgery done at the time of my choosing.
4) I did not see Coumadin as a big risk. Much of the statistics you find on the web are for ?all comers?. It includes people who are not reliable pill takers, who binge drink, and who are not careful about antibiotics. From what I could gather, Coumadin (assuming you are a reliable pill taker, don?t binge drink, and are careful about anti-biotics) hemmorage risks are very low until you hit your late 60?s and 70?s.
5) 1st and 2nd operations are low risk, while 3rd and beyond begin to have large mortality rates. This has to do with scar tissue formation, and the ability of the surgeon to see what is scar tissue vs active needed tissue as they work on your heart. My current plan is that when I hit 65 to 70, I?ll see what is on the market and may at that time go for a 2nd re-op to knock out the Coumadin. This leads to the ace in the hole? with the On-x valve there is a possibility I will be off Coumadin in 5 years (when their FDA study is complete). In which case, I am set for life.

I hope this helps.
Adrian

 

[shellyb]

Just curious Adian. If you were 56 years old how much would that change your views?

Shelly in SD

 

[tobagotwo]

One should think a lot, Shelly.

As I had mentioned before, at your husband's age (he's a whole year older than me) there's no real statistical difference in life expectation for either choice. The only exception would be if he were to choose a tissue valve, and it were to last his lifetime. Then that valve would have been a lower risk. As the average lifespan for males from our birth years is 76, he would have a real shot at that with a CE bovine valve.

However, let's assume that apart from his apatite-encrusted cardiac jewel, he's pretty healthy in general. Maybe he's good for 92 years. So, he may need another valve before he's done with his heart. For other reasons, in my own case, I do expect (hope!) to require another.

In the meantime, I am largely untouched. I do have to go for an annual echo. I do take 81 MG aspirins (unless he's allergic, you husband probably already does that, too, like most people over 50). I also take - oh, that's right! - I don't take anything else.

I relish that freedom, and wish to maintain it as long as I can. I would not want to deal with a daily dose of anything, regular testing, required clinical testing, figuring dosage changes, wondering about whether the medical person I was going to see knows anything at all about the medication I was on, wondering if I was going to have a stroke from having to stop or bridge my medication for a root canal or a colonoscopy.

I do not do well with having to figure out if the drug store will give me a partial advance on my next prescription so I'll have enough to get through a vacation. I would not deal well with the way so many in the medical community act like they own you when they know you depend on them for anything.

It's entirely possible that one day, an "informational" lecture from an ignorant, 20-something, gum-chewing nurse at a testing clinic would slip me right over the edge, and I'd say something irretrievable. Especially in cases where they can interfere with some important part of my life, I don't always suffer fools graciously. Although I do like to exercise my sense of humor at the doctor's, I'm not always the most desirable patient.

Coumadin is problematic for some all of the time, and for all some of the time. Even the well-informed. A quick look at the ACT forum will easily document that. Is it manageable? Yes. Is it worth it? Well, at 56, that depends entirely on your personality and point of view. Do you like a daily dose of lesser risk, or would you rather take your heart in your hands every couple of decades, and take the bulk of the risk at once (resurgery)? People do lean both ways on this.

Just FYI...Stenotic is an adjective, and doesn't have tenses. Stenosis is a noun, and is likewise tenseless. You could use the word "narrowed" or "blocked" in the same way as "stenotic," and "narrowing" or "blockage" in the same way as "stenosis."

Best wishes,

 

[Natanni]

) 1st and 2nd operations are low risk, while 3rd and beyond begin to have large mortality rates. This has to do with scar tissue formation, and the ability of the surgeon to see what is scar tissue vs active needed tissue as they work on your heart. My current plan is that when I hit 65 to 70, I?ll see what is on the market and may at that time go for a 2nd re-op to knock out the Coumadin. This leads to the ace in the hole? with the On-x valve there is a possibility I will be off Coumadin in 5 years (when their FDA study is complete). In which case, I am set for life.

I hope this helps.
Adrian

Nathan (and I remember Randy too!) did a reverse order valve choice. At 34 years old, he chose mechanical and hoped for the best. Next week it will be his 2nd valve birthday--- I never would have dreamed he would be admiring his 12 cords of firedwood cut with chainsaw and woodsplitter. Would anyone when discharge instructions say to throw out your razor? But he is young and free of health problems and I pray that he won't ever need to have OHS again. If not, I pray that he can make it a few decades without issues and if he needs another VR, he can chose a tissue at that time that will see him for the long haul.

Best wishes,

Ann

 

[Karlynn]

Coumadin is problematic for some all of the time, and for all some of the time. Even the well-informed. A quick look at the ACT forum will easily document that. Is it manageable? Yes. Is it worth it? Well, at 56, that depends entirely on your personality and point of view. Do you like a daily dose of lesser risk, or would you rather take your heart in your hands every couple of decades, and take the bulk of the risk at once (resurgery)? People do lean both ways on this.

That pretty much says it (in blue). But I would add a counter part to Bob's Coumadin assessment. We often encourage people by saying that the valve replacement surgery is done often, most often ending with full recovery. At times I wonder if the very act of our assuring our members that it's so perfected causes the complexities of the surgery to sometimes be over-shadowed. Much like we have people posting in the Anticoagulation forum about problems, we also have members who've posted about their less than desirable recoveries from surgery, we just don't have a forum entitled "Surgery Problems". Please don't assume that because the Anticoagulation forum deals a lot with warfarin issues, that it's the rule and not the exception. It's similar to someone reading the "In Loving Memory" forum and assume that because they have similar valve issues to those members memorialized, that means their own outlook is bleak. Both forums demonstrate that there are exceptions to the good statistics representing all valve choices.

 

[geebee]

Against my better judgement, I am going to chime in and mention a couple more issues.

I am the VR.com poster child for the "there are no guarantees" statement. Although I did not have a choice for my first 2 surgeries, the mechanical valve I recieved was chosen so I could avoid any future surgeries. 2 years later I had OHS to remove scar tissue that had encroached on that mechanical valve causing it to malfunction. The mechanical valve was left in place.

The valve I received during my first surgery was recalled about the time of my second surgery. My surgeon did not think the recall was serious enough to replace my valve so I ended up worrying for the next 12 years. I then started to have problems that we thought might be symptomatic of strut failure so I had my third OHS to replace the recalled valve. This time I did have a choice in valve type and chose mechanical (St. Jude) because the last thing I wanted was to guarantee myself another surgery. When the surgeon explanted the valve he found it again malfunctioning due to scar tissue.

I almost died during my second surgery because the pulmonary artery was lacerated as my surgeon was trying to cut through all the scar tissue. I was given a 60-40 chance of surviving my third. Luckily I beat the odds both times. I would not like to test them again.

There is no way of knowing ahead of time how your body will produce scar tissue so that is a gamble you have to weigh when deciding to commit yourself to additional surgery/surgeries.

In addition, I am also an example of someone who would have been on coumadin anyway (had I chosen a tissue valve) because of the a-fib I developed. Many people have pointed out that that rarely happens but, if you are the person it happens to, stats just don't mean a hill of beans.

I often hear the statement that someone should consider tissue if they are mid-fifties or older because a tissue valve with a 20 year expected longevity should last their lifetime. Personally, I find it sad that people are thinking they will not live past 75. Even with my medical history, I fully expect to live into my nineties. Whether I make it or not is really not important but I sure make my choices based on optimism.

I am not advocating any particular valve choice because there are very good reasons on both sides. I will add that coumadin has not been a hassle for me and I have 27 years experience to back up that statement. My post is to educate you that there truly are no guarantees. You make the decision you feel is best for you, in conjuction with your surgeon, and try not to look back. As many have said before me, the only wrong choice is no choice.

 

[Boo I need a valve]

Would 56 change my views?

Would 56 change my views?

I can?t advice you about what your husband should do. I just don?t know enough about him, nor what the future will bring. I can only tell you what effected my decision and what I think would effect MY decision if I were 56 (and I highlight the word MY), and hope that?s helpful.

On tissue valves, I went in with the understanding that a hopeful valve lifetime was between 10 to 20 years and that there is a real statistically probable possibility that it may be as low as 7 years. Although at 56, I hear the odds of the valve lasting longer would be higher, but I have not seen any papers that authoritatively dissect why this is. Is it activity related? Immune system related? Calcium related? Valve lot number related? As such, where I as an individual fall is a crap shoot. But I do think its fair to conclude, based on average male survival rates, and my own families historic survival rates, that a re-op would be in my future. At 56, if the surgery goes well, I would be up for a re-op at between 63 worst case, but likely between 66 and 76. I assume that at that high side (20 years), the risk profiles for # of re-ops, age, and blood thinning may all be different, as will valve options. Likely at 7 years, they will be similar.

I guess the big questions for me would be based on 2 things:
1) How much do I believe those new tissue valves will really last the 20 years in me.
2) How will I react to Coumadin, and how will that change with age, and what is the chance a better drug will be on the market? (or what is the chance that the On-x valve will pass low Coumadin clinical trials)

Assuming the Coumadin situation stays static, I would be very interested to know if there are people on the forum on Coumadin at 70 and 75 who could comment about how it effects them or there friends?

Based on what I know today I think I would still go mechanical, but its definitely not as easy.
For me, the overriding factor would still be.
1) Not wanting to stress, and hence limit myself, based on a hope of maximizing valve life ? but I understand that that issue may be very personal to me.
2) Knowing that with mechanical I will ?likely? (no guarantees) control the timing if I decide to go for a re-op because of some new breakthrough technology. Historically it does seem that technology in this business takes between 10 to 20 years to be ?proven?.

But that is me.

I hope that is helpful.

 

[Susan BAV]

Shelly started a new thread in Pre-Surgery.