Tissue valves in young patients??

[Aztecus]

Hi, I am new to the site, it seems like a great community. I am 27 and an outdoor enthusiast. My drs say it is time to replace my BAV due to AS, AI, and an ascending aortic of 4.6 cm. I am leaning towards a bovine valve over a mechanical because I am a whitewater kayaker, rafter, mountain biker, and snowboarder. I worry that with my lifestyle, a mechanical valve and the coumadin it requires would pose a significant risk of bleeding. On the flip side, I know that tissue valves don't seem to last as long in young patients, and the risks of repeated OH surgery increases.

so the question is how bad are blood thinners? do you ski, mountain bike, how badly do you bleed or bruise if you fall. Do you feel comfortable traveling while watching your INR level? would your doctor let you spend 3 weeks in the wilderness?

Thanks!
-alex

 

[spartangator]

Hi Alex,
Welcome to VR.com. You'll likely find the info you're after here.

I can't personally comment on the blood thinner situation because that's not the scenario I'm in, but from reading others' posts about activity, there seems to be a real disconnect between perceptions about blood thinners and the reality people on here describe. If you search in the "active lifestyles" section, you'll find lots of posts about Coumadin. Same for commentary on younger patients and biological valves.

Being a younger patient obviously presents some particular challenges with valve selection and life planning, but everyone here will do what's possible to supportive and informative. All the best,
--Brad

 

[Lionheart]

Alex,
Those are tough questions and the answers you will hear will vary all over the map. I had the same questions when I needed a new valve and I agonized over the decision and I'm 30 years older than you. I chose a tissue valve and right now I'm happy with that choice but ask me again when I'm facing another surgery and my opinion may change. I will not suggest which one is best for you but I will try to help you understand a few of the things you should think about as you make your decision.

I imagine most surgeons will immediately recommend a Mechanical valve based on your age, but find one who will listen to you and who understands your life style and concerns, he may agree that your lifestyle should avoid warfarin or he may help remove your concerns about warfarin. At 27 years old a tissue valve might last only 5, maybe 10 years and those years can go by pretty quick, then you will be faced with the same decision (Tissue or Mechanical?) for your next surgery. If you choose a tissue valve are you prepared mentally and financially (with good health insurance) for another surgery?

Either valve will work fine; the decision comes down to where you want to put your risk. As life saving as they are, either choice comes with it's own set of risks that vary depending on the valve type. With a mechanical valve and warfarin you are managing your condition (and risk) on a regular, but minor basis (daily or weekly) and will need to somewhat watch your diet, your INR, and maybe your activity. With a tissue valve you generally reduce your daily risks from warfarin and postpone your risk until the next time you need another surgery. Although the risk of surgery is not benign, repeat surgeries don't necessarily increase the risk each time but they do subject you to the same level of risk at each surgery. And that is not something to take lightly. You probably will also have to go to a major heart center if you have to have your valve replaced a second time (think Mayo Clinic or Cleveland Clinic).

There are many active people who do extreme things with either valve type. Many professional athletes in contact sports select tissue valves- think basketball players. Others select mechanical vales and are on warfarin. There was a woman with a mechanical valve who climbed Everest. a few years ago. We discussed it in this thread.

With warfarin I don't think the main concern is bleeding from cuts and scrapes which will probably take maybe twice as long as normal before the bleeding stops. I think the main concern with extreme activities and warfarin is a trauma or concussion causing internal bleeding, especially in the head area. Warfarin could possibly exacerbate something like that. Do you wear a helmet when you ski or kayak? A crash into a tree and a head injury could be fatal regardless of whether you are on wafarin or not, but it will not help if you are on warfarin.

But if you are thoughtful and on top of things you should be able to manage Warfarin quite well. You could home test and manage your INR no matter where you are, even in the wilderness. And if you keep within your target INR range you can probably reduce the risk of bad internal bleeding events.

Please be aware that I am not advocating either a tissue or mechanical valve but rather trying to help you understand the details of important questions for you to ask a professional. I hope I have not confused you or made your decision more difficult. I am not a medical professional and these observations are not advice and may even be incorrect. You need to talk to a professional about these and other issues. They are required to listen to your concerns and help you find the right solution. Either choice is a good one, each will have it's own set of rules you will have to follow as you continue to live an active and exciting life.
All the Best in your decision.
John

 

[sarahsunshine]

Welcome!

My step son had his aortic and mitral valves replaced, along with his ascending aorta. Considering you have the graft, you may want to consider what that would mean in terms of warfarin/coumadin use. If you wil have to be on warfarin anyway, I would go for the mechanical valves.

My step son (13yo) has mechanical valves that will, we hope, last a life time (On-X). I've done a huge amount of research, like everyone else here, and I would likely go the same way myself - and I am a hockey player and hope to get back into whitewater paddling (canoe).

The reason I say that is because we've been managing Skyler's warfarin for 13 years (me for 7), and it really isn't that big a deal. He does bleed slightly more according to his doctors, but not enough that I would truly notice if I wasn't actively managing it and giving him INR tests. It does depend on the person, however, and it is ultimately your choice. That being said, however, whitewater paddling is definitely a lifestyle choice, and one definitely needs consideration for the many bumps and bangs that occur on the river, and the proximity to any help in case of bad bruising and cuts and bangs. I don't know which woulod be worse, personally, deciding I was not going to paddle, or choosing another open heart surgery....

If it were just a matter of traveling, actively managing your own INR through home monitoring is a great option for those of us who are on the road. It may take a while to set up and get used to, but it's really quite simple.

 

[dick0236]

so the question is how bad are blood thinners? do you ski, mountain bike, how badly do you bleed or bruise if you fall. Do you feel comfortable traveling while watching your INR level? would your doctor let you spend 3 weeks in the wilderness?

Thanks!
-alex

Hi Alex and welcome. I was 31 when I had a mechanical valve implanted and have been on coumadin/warfarin ever since. I do not find "blood thinners" much of a personal problem. I have never had a doctor caution me regarding any activity. I do not snow ski but I have water skyed and wiped out many times with no problem. I do not mountain bike but I have totalled a couple of cars post surgery with no medical problems. I have suffered many cuts while enjoying a hobby of woodworking and construction...a few that required stitches with no excessive bleeding. Bleeds take a few more seconds to clot...and bruising is a little more frequent, but not much. I have never felt uncomfable while traveling and my normal INR testing routine is monthly, so a few weeks between testing would not be a big deal. The big deal with warfarin is "take the pill as prescribed, test routinely....and use some common sense". I always thought of warfarin as only a pill I took every day...and until I got into my 60s, warfarin was the only pill I took.....now a few more have been added .

Given the benefit of 45 years of hindsight, I believe having only one open heart surgery far outweighs any inconvenience cause by warfarin......but that is only my opinion. I didn't like my first surgery and based on what I read, I'm pretty sure they haven't dramatically improved it over the years. Educate yourself and choose the lesser of the two evils......Tissue or Mechanical valves each have their pros and cons....and each will fix your problem.

 

[TheGymGuy]

You got some great advice from Lionheart, Sarah and others here. I could not have put it better. We have plenty of active people here who will chime in shortly. We got some that still ride motorbikes, run marathons, etc., all while on Coumadin.

Valve choice is very, VERY personal. I chose mechanical to hopefully avoid re-ops and coumadin is not an issue at the moment. I am very active and plan to go snowboarding this winter as I skipped last season.
If I was older I would probably choose tissue given that they last longer in slightly older population, but a re-op to me, personally, is very scary and since I take vitamins daily anyways, another pill added on to it does not bother me.

 

[TheGymGuy]

double post

 

[Lynlw]

Hi Alex, Welcome, Sorry for the reason you had to look for us, its tough when you are relatively young and having to make these tough choices my son is 24 and Ive belonged to diferent heart boards for quite a while, mainly for Congenital heart defects that require surgeries thru out their childhood, so I can understand not being able to do everything you want because of your heart or Coumadin, I might be wrong, but think its probably even harder to stop doing what you love than not ever being able to play it, so you dont know how much you enjoy it.. As others said the main concern with Coumdin is internal bleeds, especially head injuries and not so much cuts. As for extreme sports, I'm sure there are people on Coumadin who do everything, but it probably isnt advised to do sports where head injuries are pretty common. Something that would cause a concussion in people not on Coumadin, COULD be alot worse, on Coumadin, especially if it would take a while to get to a Trauma center. As I'm sure you know, most of the sports you are talking about Concussions are pretty common even WITh the best helmets. Helmets dont help that much with your brain bouncing around in your skull when you hit your head hard. As for snowboarding, I think alot would depend on what kind of snowboarding you do. Downhill, probably would be relatively low risk, even tho people often mention hitting a treee wont matter much if you are on Coumadin or not, the chances of hitting a tree are so low, I doubt that is the main concern, other more common things like falling or having someone run into you would probably be the thing you'd worry about going down hill, so probably wouldnt be that big a worry, sure you would most likely have some pretty big bruising, but it would most likely not be life threatening, or ended up with perm brain damage.. but if you are talking about terrain parks and rails, where broken bones and hitting your head isnt that rare and even personally I've known a couple kids who got bad concussions even with helmets or broke bones in terraine parks or halfpipe. White water kyacking or rafting probably would not be reccomended, especially if you are not very close to good medical care, mountain biking agan would depend on how extrememe you are talking about and IF injured how far /long would it be to get to a hospital.

Travelling would not be a big concern, especially since IF you are on Coumadin, you coud get a home tester for your INR and be able to test no matter whre you are. As for weeks in the wilderness, it depends what you would be doing there, just camping and hiking for weeks wouldnt be a problem.

Its always possible to get a tissue valve now, while so much of what you love to do would probably not being reccomended on anticoagulants, and then when this valve needs replaced get a mechanical valve. There have been a few people here who've gone that route thinking by the time they need a new valve, they will be at a different point in their lives busy starting a family raising kids etc Having any heart surgeris is not something people want to do, but a first time REDO right now, the risks are about the same as a first heart surgery and who knows what will be common or available by the time you would need a new valve.

It's alot to think about, I dont envy you. Even tho your in your late 20s by the time you need your first surgery, you might also want to check out the forums at the Adults with Congenital Heart defects site http://www.achaheart.org/ most members had surgeries as babies or young children, but many are pretty young (20s-30s) and been on Coumadin for valve or other reasons as well as had multiple REDOs

I don't believe having a graft for part of your Aorta would be a reason you would have to be on Coumadin, since many people wit tissue valves also have grafts and arent on any meds, but anything is possible.

 

[Jkm7]

One aspect of coumadin I have not read mentioned in this thread is the difficulties some (many ?) coumadin using patients encounter when having medical and dental procedures which could involve bleeding. So many medical professionals are so poorly schooled in coumadin management that many coumadin patients have the worst experiences when they have to stop taking their coumadin for procedures, bridge, and then have to get back into their prescribed INR range.

So many times we read of coumadin management that is not done as well as one would hope and leads to risk and frustrations by patients.

IF you are to opt to mechanical valve, you may want to research where and with whom you would have coumadin management handled. Be sure you feel satisfied with what arrangements you can make for this necessary facet.

 

[Lionheart]

Alex,
Here's another site for athletic cardiac patients-- Cardiac Athletes-http://www.cardiacathletes.com/

John

 

[normofthenorth]

I'm with lionheart and lyn and most of the others. I was only on Coumadin for 3 months post-AVR (tissue) because of my MV repair (and maybe the "tuck" on my Aortic Root). During that period (~8 weeks post-op) I spent a week downhill skiing in Whistler. Before I went, I asked my GP, my surgeon, and my Cardio what I should do. My GP said "Be careful, take it easy." My surgeon said "Sure, go, have fun!" And my Cardio said "Anybody who goes downhill skiing while they're on Coumadin is crazy".

I went, I skiied, I had fun, and I took it easy, but only because I was working (frequently resting) to keep my heart-rate out of the stratosphere, still quite soon after my OHS. I've since been back there for 3 more trips, and glad that I'm off the ACT. But I'm not 27. (And I STILL hope to live long enough to need another AVR!)

Good luck with your decision. It's all yours.

 

[H.E.pumper]

One more thing to consider. Although I didn't read all the extensive responses to your question by others here I have an important point. My point concerns OHS patients who define their lives (mostly) by very active outdoor pursuits (like you and I). I am at 9 weeks post op with a tissue valve and I am still wasted; all my years of cardio-pulmonary conditioning are GONE! The cardiac therapy sessions I attend three days a week are the ONLY thing I can look forward to. Even though I am much older than you I forsee at least four or more months of rehabilitation to get NEAR my former self (physically).

I chose the tissue valve as recommended by my surgeon (guaranteed future OHS) but I do NOT want to go through this OHS again and watch the world go by. I regret not getting the mechanical valve (others talked me out of it) since the chances of re-surgery is very, very small. I really don't want to go through another year of my life mostly getting back to normal and doing nothing I enjoy. Maybe your youth will allow you to more easily get through through the rehab time (multiple times with tissue valve) than I but think about it. Apparently no drugs will speed recovery; ONLY TIME heals your heart then you start all over with conditioning requiring more time. Down-time for an active person is an excruciating loss of PRECIOUS TIME.


Tom

 

[Matt C]

As everyone said it is your personal choice. I did mine about 8 months ago and until the day of surgery was leaning toward a tissue the other surgeon on the spot prior to me signing off talked me out of tissue. It is not a surgery you really want to repeat and if you can avoid having your chest opened up again. As others have said clotting time is a few more seconds you have to use common sense if you can't over do liqour but I was never really into drinking. I use to lift heavy weights but having another surgery non related to the heart this fall to repair 2 hernias so am doing cardio mainly at the moment.

 

[Garrett]

Hey Alex,

I am 19, just had AVR with a porcine tissue valve late June of this year. I can't answer your questions, but I think it would beneficial for you to hear why I chose a tissue valve.
The main reason I wanted a new valve was because I wanted to be more active, lead a healthier lifestyle, all without the liability a leaky aortic valve. Originally, I was told to avoid competitive sports and other strenuous activities. After my surgery I knew that I wanted to be as liability free as possible. To me this meant choosing a valve which did not require blood thinners and the schedule/regime that comes with them.

Also, I don't know about you but I am planning to hang around for a while, my assumption is that when my valve needs to replaced again (in 8-10 years) there will either be better health technology and I will be able to choose something that lasts longer, perhaps my tastes/lifestyle will change to where I will be able to handle a blood thinner regime, or hey, maybe there will be a zombie apocalypse… In which case I will have other things on my mind.

I hope this helps,

Garrett

 

[Garrett]

Off topic from your original question:

Down-time for an active person is an excruciating loss of PRECIOUS TIME.


Tom

Tom brings up something important about the recovery, it can get monotonous, very monotonous, especially for someone is used to being very active. No matter what kind of valve you get your going to face the recovery time. I talked with one of my friends who is a cross country and competitive runner, he also has had an AVR (tissue), he said that he found himself getting very depressed during his recovery just because he couldn't get out and about...he broken his external precautions too early and drove in his car, you can now see that the top of his scar is flared out a couple centimeters more than the rest.

In my own recovery (which I am still in) I am having troubles with pain, “the pain comes in waves” I was told by the same friend the other day, my first couple of weeks of recovery where surprisingly pain-free (just a little achy) and then bam, all I can do currently is throw on some warming packs and take a few ibuprofen when the back and muscle would pain act up. This can get me down in the dull drums.

I felt recovery was worth mentioning because over the long term a tissue valve will need to be replaced, that will take you away from your outdoor pursuits for a good few months. For yourself, Is that good or bad? Recovery does not only require physical strength, but also mental and emotional patience and fortitude. On a cheery note, good luck with your decision process. Shoot me a pm if you have any questions,

Garrett

 

[neil]

i think you have gathered by now it really comes down to your choice, you will always find negatives and positives in either choice,but which ever you go with its gonna save your life, have another chat with your cardio after all he is the expert,whichever valve you pick is the right one for you, good luck

 

[chilihead]

Don't rule out a Ross Procedure. Just make sure you get a surgeon who has done a lot of them if you decide to go for it. I had mine at the age of 40 and was racing mountain bikes at the time back in 2003. I feel great and continue to ride, ski, work out, ride motorcycles, etc. It's a personal choice.

 

[LouLou]

I concur with **** - I would rather be on blood thinners and avoid another surgery. That being said, it is a personal individual decision. I have had a Mechanical Mitral Valve since 1989 at age 26 and have had few issues with blood thinners. I now need surgery to replace my Aortic Valve - a second surgery is just as scary as the first maybe more because you actually know it is going to be a long recovery process both mentally and physically. I would definately not choose a valve that I knew was going to have to be replaced in 5 - 10years....No way, No how. Just my opinion. Although we have come a long way since 1989 when I had my first surgery, the majority of Valve replacements are still full sternum operations. Also, once you have had one OHS, your risks increase slightly with every subsequent OHS.
The opinions on this subject are just as varied as are the people who post them, we are all unique and have our own life experiences to consider. This is one of those questions that has no right or wrong answer.

Best Wishes to you and your decision making process.

Tammy

 

[carverelli]

Not sure if this was mentioned, but if you go the tissue route now- who's to say when it needs replaced your lifestyle may have changed and you could then go the mechanical route. These are generalities as far as I've read, but tissue valves dont last as long on younger patents as they do with older ones. How many times can your surgeon cut out a valve in your heart and replace it without having to sew it into old scar tissue?

I'm leaning toward a mechanical on-x at age 45, but most of my wilder days are behind me. This has truly been one of the harder decisions I've ever had to make.

Get as much info as you can on Both sides of the argument, then make the one best for you.

 

[H.E.pumper]

Not sure if this was mentioned, but if you go the tissue route now- who's to say when it needs replaced your lifestyle may have changed and you could then go the mechanical route. These are generalities as far as I've read, but tissue valves dont last as long on younger patents as they do with older ones. How many times can your surgeon cut out a valve in your heart and replace it without having to sew it into old scar tissue?

I'm leaning toward a mechanical on-x at age 45, but most of my wilder days are behind me. This has truly been one of the harder decisions I've ever had to make.

Get as much info as you can on Both sides of the argument, then make the one best for you.

Good point, BUT, someone PLEASE correct me if I'm wrong, from what I understand after much research 'lifestyle' has absolutely nothing to do with the survival rate of an artificial heart valve. Only the progression of time has a deleterious effect on a tissue valve.

Once I'm sufficiently recovered from my 11 week old AVR I plan to get really 'wild' again...:thumbup:



Tom