valve questions

[tobagotwo]

The post was from a young woman who said that her own porcine valve had been in place for over thirty years, so it wouldn't have been Hottie.

I just went searching for it, but am at a loss to come up with something searchable that was in that post. "30 years" didn't seem to pick up the relevant post.

 

[geebee]

Thanks Debora. I don't want to hijack this thread with my questionable issue but I will say I am banking on the echo error theory. I had the echo because I was having SOB but I think I am just out of shape. Am going to kick it up a notch and wear out my swimming pool. If the SOB continues to get worse, I will repeat the echo sooner rather than later. Right now just in a waiting mode.

 

[tobagotwo]

It's understandable. And it would help things a lot if I could locate the post.

The story in the post went that she had had the valve put in when she was a child, and it was getting near time to replace it, according to her cardiologist. The post was a few months ago, but not ancient. It brought me up short, because it was not only an extremely long time to have it, but she said it was implanted when she was a child, when the body traditionally ravages tissue valves. And if it was thirty+ years old, it would have been the untreated variety, too.

My assumption was that she misunderstood what she had, or she had some kind of immune deficiency related disorder that made her body not "see" the valve, or some bizarre quirk with her calcium metabolism.

Perhaps someone else remembers the post, and could help us out?

Best wishes,

 

[Ross]

Before everyone attacks about missing posts----Hotties posts should have been removed when the banning occured. I did not remove them because this all happened at server change over time. I left them until I realized that the posts were becoming a problem, which is this morning.

I've searched my braincase over and cannot remember this post, but if it were made by a banned member, that is why it is not found. Banned Member posts are deleted.

I have no problem with people posting their piece of mind or even a good heated debate if it contains useful information for person to make decisions from, but we are not going to be allowing flame wars to start. Say what needs to be said.

I want everone that has an opinion to post without feeling like they are going to start the flames. I see people saying they stay out of these discussions because of it, well sorry, but your opinions matter too!

 

[Karlynn]

My assumption was that she misunderstood what she had, or she had some kind of immune deficiency related disorder that made her body not "see" the valve, or some bizarre quirk with her calcium metabolism.

I'm wondering if her valve was repaired as a child and it just got translated over the years into a replacement. 30 years ago, the information disceminated to parents was not as detailed as today, nor were people in the habit of questioning the drs. on specifics.

 

[Phyllis Jean]

Tissue Valve lasted only 6 years

Tissue Valve lasted only 6 years

In 1998 my Aortic Valve was replaced with a tissue valve. (Pig). In 2004 it had to be replaced with a Mechanical Valve (ATS). I had severe leakage from the tissue valve. I was told it would last from 10-15 years. So, I don't know why it started leaking. I am praying that I don' have to go through this again as I am now 62 years old. I know there are more risks with multiple surgeries. I wish I could advise you but I guess there are no guarantees as to how long any type of valve will last. If I had it to do over, I think I would have gone with the mechanical valve the first time. Just my experience. Best wishes in whatever decision you make.

 

[Ross]

It's always going to remain an individuals choice, but RCB and others such as myself, are trying to stress the point that this surgery is in no way something to be taken lightly. Perhaps this time your alright, but what about the next time? Each successive surgery comes with higher stakes. This is why we stress 1 time only and it's hoping that it's 1 time only. There are no guarantees no matter what you decide, but thinking of going through this time after time without consequences is ludicrous. Each time your organs go through major trauma. Maybe your kidneys won't function right, maybe you can't breath properly because part of your diaphragm is paralyzed, perhaps AFIB, or even more serious things will happen. These are all very real possiblilites. I'm sorry to be so blunt about and not sugar coating it, but this is the reality people.

These are the things that a first timer should be concerned about, not what they can do the next time or what technology holds in 10 years. Offer the choices, yes, but also be realistic about the consequences of these choices.

A point was brought up to me earlier today and I often wonder myself. How many people have we seen come through here that, after surgery, we hear nothing from again? Did they fair well, poor, die, maybe have complications and aren't as well as they were before, thought they would be better and are not? All we hear from are those of us that care enough to stick around and offer our advice to the next scared person coming in the door.

I was watching a surgical show the other night and one of the surgeons was speaking about his dad, who also was a surgeon and he said something that stood out to me. His dad told him, "As surgeons, we treat based on scientific data and research, but pay attention to your gut. It could just be God whispering in your ear."

 

[Rain]

THIS statement would scare me.... if I was just 'coming in the door'!!

THIS statement would scare me.... if I was just 'coming in the door'!!

"A point was brought up to me earlier today and I often wonder myself. How many people have we seen come through here that, after surgery, we hear nothing from again? Did they fair well, poor, die, maybe have complications and aren't as well as they were before, thought they would be better and are not? All we hear from are those of us that care enough to stick around and offer our advice to the next scared person coming in the door."

Consider this....

This well adjusted, happy, busy person is slapped with the news that he/she needs OHS. Realizing their chest is going to be sawed in two, their heart is going to also be sliced into... they are going to have their heart stopped AND if all that isn?t bad enough.... this guy (some guy.. they?ve probably only met once or twice... you have no idea if he?s happily married, did he have a nice dinner the night before? To many drinks? Did he sleep well? Does he like his job? ... I seriously wanted to totally quiz the guy before he did my surgery!!) Anyway... if that isn?t all bad enough then this guy is going cut out the valve God gave me ... and replaced with a different one.... one you have to choose. If that don't scare you.... you're wierd! This decision becomes a priority in your life!! No matter how educated, well adjusted, busy, happy, unhappy, whatever kind of person you may be.... you know it?s time to do some serious research!!

Once this person has the surgery, recovers and slides back into life as he/she knew it before all this happened.... although he does have a huge attitude adjustment, maybe even some medical problems related to the surgery... he is most likely going to return to the world he put on hold until he got this surgery business taken care of. His (he/she) priorities are going to return to making it to his kid?s ball game.... not reading up on valves, etc. He won?t make it here less often because he doesn?t ?care about the new person? ... his priorities will have fallen back in place..... he will be out there taking care of his family... like our very own Hankypoo! It won?t be because he faired poorly, died, or had complications... he will have got past this trauma in his life and moved on. I think this explains most people who we don?t hear from again. Lets be honest about this and not scare the new folks!

Having said all that... I really appreciate those of you who do have time to acknowledge every post.

 

[Nancy]

Couple of things, not all Bjork-Shileys were recalled, there were some with strut fractures. Joe has a Bjork-Shiley. He never got a wallet card with his model number, if they were even giving them out in those days, 1977. So he had to go to Lahey Clinic and have special x-rays to determine if he had that valve. He did not, and his valve is still in there in the aortic position.

LA Cruiser was shot as a child through his valve. He had a surgeon who used battlefield techniques and repaired his damaged valve with surgical sponges. That repair did last for 30 years, I think.

By the time he needed his valve surgery (2nd) he was extremely symptomatic and very apprehensive. He remembered the early surgery when they stopped his heart by cooling him down on an ice bed, and he had a very hard time in the pre-op phase getting emotionally ready for his surgery.

He was even able to contact his old surgeon who had retired. It was a touching letter from the surgeon, and he did post it online. LA thought he did have a porcine valve, but the surgeon wrote what actually happened. Excellent surgeon.

La Cruiser had his second surgery, did well, and I hope still going strong.

 

[geebee]

Nancy,

You are right in that only 1 model of the Bjork-Shiley was recalled - the CC model. I did not mean to imply that all of them were recalled, only the one I had and I should have been more specific.

In addition, many people still have the CC valve implanted without the strut failure that some had. The strut failures were mostly in the larger valves (over 27mm) but all sizes were recalled.

 

[cocoalab]

No but we did the opposite

No but we did the opposite

It seems at your age it is unlikely that you will not need the valve replaced againat some time. Whether you decide you want to go tissue or mechanical. The mechanical has alonger expected life span so if you get 30 years you will be in your 60's.

With Andrew we were only told to expect 8 to 10 years from the bovine valve that was just put in. I don't know what model but it is a Medtronic. He is only 15 1/2 so that means early 20's he will need to probably have it replaced, provided his heart keeps functioning well. He will then have to make the hard decision.

Only time will show each of us how long our valve will last in us.With growth and all Andrew's last Mechanical lasted just short of nine years. We were told he would probably need it replaced around age 13 so we got a couple extra years.

Heart surgery is a major event so it should definately weigh heavily in your decision of whether to go with the mechanical or not. I would guess 15 years is a hopeful estimate but maybe at your age the longvity is better.

All the best to you as you make this decision. I know how hard it is. I didn't know I had the option for tissue until less than a month before Andrew's surgery. It was the valve I had wanted last time but didn't happen. He was in for a repair but it failed. So maybe if I had looked more I might have changed my mind, but maybe not.

 

[CCRN]

The best laid plans.....

The best laid plans.....

Has anyone gone tissue for the first valve selection and then got mechanical for there second surgery.
I would also like to know if the mechanical valve adapts well to the heart after having used a tissue valve.

I'm 38 and i'm planning on going tissue and then at some point in my early 50's going mechanical , i'm still undecided because i could go mechanical hoping that it would last me a life time or possibly having resurgery at some point in my 70's. Any thoghts or opinions.

thx

So, what do you think is worse, a second heart surgery or coumadin? I wanted a tissue valve but didn't end up with one. Coumadin IS a big deal but so is redo open heart surgery. We're talking BIG risk of bleeding and exposes one to other possible complications (HIV, HEPITITIS, renal problems, lung problems). Stats today are showing a healthy person's risk with redo open heart surgery without other health problems are equal to taking coumadin for about the duration between the surgeries. How can we predict our health in 10 to 15 years? These are the things I pondered prior to my surgery.

In the end I didn't have a choice and didn't care. In addition to the valve problem, it was discovered I had a nice fat aneursym in my chest. I wanted the thing out and didn't care if they had to go to Home Depot and get PVC tubing to replace it. AND, the most pleasant surprise is that coumadin is not the huge pain in the a__ and monster I thought it was. I can even get a machine and manage my own dosage further decreasing my chances of complications......if any. It is a slight bother...but so is the thought of going through the anxiety leading up to surgery AGAIN.

My suggestion would be contact someone who has had both surgeries with the first one around your age if possible. You should be aware the younger you are the more likely the tissue valve will need to be replaced sooner and, at your current age, probably before you are 50.

I have only had open heart surgery once and prior to the procedure I was kicking and screaming against mechanical and coumadin. Now I have to say I'm glad it's over, much of it was not so bad as I had imagined, and there is no absolute sureness I will never have to have it again. However, knowing I have a greater possibility of living the rest of my life without somebody sawing my sternum open again is priceless......at least to me. Hopes this helps.

 

[Ross]

Ouch, I wasn't aware that truth hurt so much!

 

[Granbonny]

David

David

Sounds like a good plan..your being a Mountain biker..Ever ride my roads up here in White county. Many bikers every week/end.. and I pray they don't take coumadin. Looks dangerous to me. Mucho traffice from Atlanta coming up to tube, ect.. Not to mentions the thousands of Harley Riders. Helen is a mecca for them............ On the coumadin issue. once you are stable ( maybe 1-2 months post-op) you will only be pricked once every 3-4 weeks........As long as you stay in range ( I hometest) you need not worry about having a stroke...and as far as you say..30 years for a mechan valve..Golly, I hope I get more than that from mine. I plan on chasing Ross around in the Nursing Home with my cane. Bonnie

 

[LLJ]

Hey mountainbiker! I'm fairly new to this forum,found good people in the active lifestyles forum and saw your post. I had a AVR in Jan due to a bicuspid aortic valve, My cardiologist and I had originally decided on a mechanicalvalve until the visit I had with him immediately following a morning mountain bike ride. I had a minor crash due to a small but aggressive rock garden. After one look at my leg (which really wasn't that bad) We decided on a tissue valve. His feeling was that small accidents like that one could cause bleeding enough with coumadin to cause tissue damge. We sort of said 10-15 years for the tissue valve combined with realistic expectation that the field of minimally invasive surgery would continue to progress made the choice of tissue valve viable.
Along with regular sprint distance Dus I do a few Xterra races and didn't want to worry about injury.I am in my 40 and finally aging up to actually do well in these things!Or at least not embarass myself) Anyway, good luck with whatever choice you make. It is good to talk to your surgeon and cardiologist and see her/his opinion.
LLJ (laura)

 

[mmarshall]

This is the same exact issue I have been going back and forth on. I don't worry about having to take coumadin, it's the constant finger pricks, blood tests and possible stroke.

The bigger issue is, since I am in my late 30's I seriously question not having to replace the valve again. If the mechanical lasts 30 years I am only in my 60's. I would need to get 40 to 50 years out of it. I don't think 40 to 50 years is a realistic expectation, there are so many reasons for a mechanical valve to be replaced that have nothing to do with the actual failure of the valve.

If I go with a tissue valve now I can buy a few more years without coumadin have the reop in my late 40's early 50's and now 30 years off a mechanical puts me into the late 70's early 80's, not a bad run. If another reop is needed a tissue will get me through the end with no problem.

Just my thoughts.

(Trial run for my new signature after the topic in small talk the other day)

That was my exact thought process before surgery.....at my age...i was looking at another ohs no matter what valve i decided on. so i went tissue to at least have the best quality of life with the least amount of interuptions....or day to day stuff. plus my lifestyle just did not fit with the coumadin issue and since i was in a positition to have that choice....i went with that and figured i will have a more stable and consistent lifestyle when the time comes to choose again.

 

[Ross]

But who is to say that a mechanical wouldn't last you a lifetime? Come on statisticians, lets see some documented evidence of mechanical valve redos. I know that there are some, but it can't possibly be anywhere near the amount of surgeries one is posing going with tissue.

From October 1977 to October 2002, 4,480 patients (age range, 17 to 94 years; average, 64 +/- 13 years) underwent single valve replacement with the St. Jude Medical heart valve. Of 2,982 aortic (AVR) and 1,498 mitral valve replacements (MVR), concomitant coronary artery bypass grafting was performed on 42% and 33%, respectively. METHODS: Cardiac Surgical Associates has maintained an independent database of patients having valve replacement with the St. Jude Medical prosthesis since the world's first implant. Patients were contacted by questionnaire or phone from November 2002 through June 2003. Hospital course and valve-related events were verified by patient chart review or physician contact. RESULTS: Follow-up was 95% complete. Operative mortality was 4% with AVR and 9% with MVR. Total follow-up was 32,190 patient-years (range, 1 month to 24.8 years; average, 7 +/- 5 years). During the study period, patient freedom from late mortality was 61% (AVR, 61%; MVR, 63%), and from valve-related mortality 92% (AVR, 93%; MVR, 91%%%). Freedom from thromboembolic events was 85% (86% AVR, 81% MVR), from bleeding events, 81% (81% AVR, 81% MVR), from reoperation, 98% (99% AVR, 97% MVR), from endocarditis, 98% (99% AVR, 98% MVR), and from valve thrombosis, 99% (99% AVR, 98% MVR). There was one MVR structural failure (0.06%). CONCLUSIONS: The St. Jude Medical valve has proven to be an effective and durable valve prosthesis with a low event rate during the long term.

PMID: 15734375 [PubMed - in process]

Aortic valve replacement in the young adult (aged 18 to 50 years) is a choice between a mechanical prosthesis with attendant lifelong anticoagulation or biological prostheses of varying types that may have limited life expectancy in this age group. METHODS: The Cardiac Surgical Research Foundation database was accessed to determine long-term outcomes in patients having aortic valve replacement with the St. Jude Medical Valve. This database has been privately maintained since the world's first St. Jude Medical (SJM) valve implant in 1977. Patients were contacted by questionnaire or by telephone if the survey was not returned. Follow-up was 93% complete. RESULTS: From October 1977 through October 1997, 271 patients less than 50 years of age had isolated aortic valve replacement. Follow-up was 1957 patient years. Thirty-day operative mortality was 1.1% with 18 late deaths, 4 of which were valve related. Ninety percent of survivor INR responses indicated a frequency of monthly INR checks or less. Valve-related events including percent per patient year and mortality related to these events included thromboembolism, 6 episodes (0.3% per patient year, no deaths); anticoagulant-related bleeding, 6 events (0.3% per patient year, 2 deaths); paravalvular leak, 6 events (0.3% per patient year, 2 deaths); valve thrombosis, 2 events (0.1% per patient year, no deaths); and endocarditis, 3 events (0.15% per patient year, no deaths). There was no incidence of structural valve failure. CONCLUSIONS: The SJM valve has a long record of excellent performance with durability lasting more than 20 years. The incidence of untoward events is low and death over time due to valve-related complications is low (4 of 271). The SJM valve has become our valve of choice for younger patients.

PMID: 12822621 [PubMed - indexed for MEDLINE]

 

[LLJ]

Honestly Ross, I like your data. (And I don't say that to all the guys!) I would have gone with the mechanical but lifestyle warranted a chance with tissue. It was important to me to maintain a certain quality of life,however foolish. I don't mean INR measures etc, I mean crashing on bikes and tripping on mountain trails. (I know, sounds like a party) My mom has a mitral valve regurg that will eventually need surgery, as well as A fib, and she says once she got the coumadin right,it's no problem. I guess you need to know yourself, be informed medically and go forth unafraid(sort of)
LLJ (laura)

 

[Karlynn]

Hi David and Laura,
I can certainly understand (and probably agree) with your decisions to go with a tissue given your avid hobbies and fitness style. Ross's stats were addressing a concern that I had voiced to him, that it seems as if replacement of a mechanical and replacment of a tissue are, to the new reader, seemingly on the same page as far as valve life. David, your explanation of your choice, helps clear that matter up.

The implantation of my mechanical mitral valve had as much to do with my young age and my "life style" as your decision to go tissue. So I'll give the "other side of the coin" here for any new readers (the oldies who've read this, feel free to take a nap).

I was 32 when I had my mitral valve replaced with a St. Jude mechanical. I had been pretty physically active prior to getting debilitated from my valve disease, but my 2nd pregnancy chewed up my already-leaking valve and I became less physically active - but had high hopes of returning to that life style. My children were 5 and 7 when I had my surgery. Had I gone with a tissue valve, I would have been stahling out a very busy, very hectic life of being a parent, spouse and adult child of aging parents. A replacement of a tissue valve would have most likely come during my children's high school years, possibly jr. high years. I, quite simply, didn't have the time to devote to feeling less healthy, having surgery and recovering from surgery. I had very active children and I was almost literally running from the time they reached 3rd grade until they graduated. I had already impacted their life not feeling so well when they were babies and preschoolers and I didn't want to have to do that again. I, fortunately, was able to return to a state of physical fitness after my surgery. More importantly, my life has gone on pretty much uninterrupted by my valve for over 13 years. (knock wood) and I'm hoping to get a whole lot more uninterrupted life. At last echo 9 months ago, my valve was doing well, with a small amount of calcification.

Many tissue valvers talk about their hopes for future technology in regards to their tissue valve and technologies of replacement. We "tickers" have the same hopes. Hopes for mech valves that require no anticoagulation, hopes for mech valves that require more benign anticoagulation - newer, slicker, faster models. The mech valves used now are better than the one I had installed, and it's pretty good. If my valve lasts 30 years, that puts me at 62 (still a young thing!) 40, then 72. Etc. I'm hoping that medical science has some pretty nifty ways of replacing my mech valve by that time too!

One thing that I'd like to point out, for the new members who may be getting confused on valve longevity, is that when a doctor performs surgery and is confronted by issues that would make reoperation a problem, they most often don't go ahead and put in a tissue valve. They put in mechanical, because their hope is that it will last a very long time. They know that tissue valves now, while they last longer, do not hold as large a hope of longevity.

So that's the Very Active Mom side of the equation.

 

[CCRN]

thoughts

thoughts

This is the same exact issue I have been going back and forth on. I don't worry about having to take coumadin, it's the constant finger pricks, blood tests and possible stroke.

The bigger issue is, since I am in my late 30's I seriously question not having to replace the valve again. If the mechanical lasts 30 years I am only in my 60's. I would need to get 40 to 50 years out of it. I don't think 40 to 50 years is a realistic expectation, there are so many reasons for a mechanical valve to be replaced that have nothing to do with the actual failure of the valve.

If I go with a tissue valve now I can buy a few more years without coumadin have the reop in my late 40's early 50's and now 30 years off a mechanical puts me into the late 70's early 80's, not a bad run. If another reop is needed a tissue will get me through the end with no problem.

Just my thoughts.

(Trial run for my new signature after the topic in small talk the other day)

Just wanted to let you know I think you're having some good thoughts. I thought the same and a big part of me is very jealous of you. I gave you my thoughts because the thoughts of those who had surgery before me really gave me a better picture of the options I might have. I like options. Whatever you choose it will be a great choice for you and you will be supported 100% percent by many people here. As I said before, I am thankful but I do envy those people with a little bit of bovine or porcine in them.

P.S. I'm a bike rider too.