Valve Choice for "Younguns"

[MikeHeim]

Hi there, I'm a brand new member with some fairly urgent questions. I am having surgery next Friday (Dec. 9th) for (hopefully) a Mitral Valve repair. As you well know, these are only about 85% successful, and if the surgeon determines the valvular damage is too great, it will have to be replaced. Therefore, I find myself with the decision that almost all of you have had to make.

I see that this was touched on in earlier posts, but I wanted to take it in a slightly different direction. What sort of activity restrictions are those of you on Coumadin under? My surgeon mentioned that I should stay away from skiing, surfing, or anything that could possibly result in head trauma. In addition, I need to basically cut out any alcohol, watch how much Vitamin K I ingest, etc. These possible restrictions are actually scaring me more than the actual surgery! (I'm only 28 and the idea of having to alter my life at this point is pretty depressing.) If this is the case, I will probably elect to go with the Bovine valve and risk having it replaced sometime down the road.

One other question: does anyone know if the activity level of a person dictates how long the Bovine valve will last? I go to the gym 3-4 nights per week, run marathons, and go hiking when I'm on vacation. Does this mean I may have to replace a Bovine valve quicker? Thanks to all that reply!

 

[Karlynn]

Hi Mike and welcome!
The Coumadin warnings you got from your surgeon are typical, unfortunately. There isn't too much physical activity prohibited while on Coumadin. Yes, head injury is to be avoided. However, if you ski - wear a helmet. Do surfers wear helmets? We have marathoners, tri-athletes and bikers who take Coumadin. They just take appropriate precautions - which really everyone should. Isn't head injury to be avoided by everyone?

We also have a saying here "Dose the diet, don't diet the dose." In other words, we eat what we want and adjust the warfarin (Coumadin) dose accordingly. The key is consistancy. If you love salads, have salads, just have them regularly. If you like brocolli - go for it. Yes, you want to avoid dosing large amounts of Vit. K - so you don't take a vitamin with K in it. Or if you do - don't stop it without closely monitoring your INR.

Alcohol - no binging. I enjoy an "adult beverage" whether it's a glass of red or a rum and diet coke about 4 nights a week. I rarely over indulge though and that should be avoided. Being young and avoiding weekend drinking can be a tough one, but going tissue so you can drink seems (I could see my son doing that).

The biggest reason to go mech at a a young age is to avoid repeat surgeries. Mechanicals don't guarantee no redos, but neither does a tissue valve guarantee you won't have to take Coumadin. Sometimes people develope atrial fibrilation after valve surgery and that requires Coumadin.

Having a mechanical valve does present a problem when requiring other kinds of surgery because the Coumadin must be stopped for the surgery and you risk throwing a clot. However, bridge therapy is used so that your unprotected time is relatively small and the risk is minimal.

I had a mechanical valve put in when I was 32 and 14 years later I'm still very happy with my choice. My life didn't have time to put up with a failing tissue valve, another surgery and recovery period.

I'm sure others will be along to fill you in on the tissue choice. The bottom line is you make your decision and you don't look back. One thing that valve surgery gives you is a great appreciation for the value of life.

 

[tobagotwo]

I vote with Karlynn.

While your activities won't shorten the life of a tissue valve noticeably, tissue valves are generally ravaged by 28-year-old body chemistries. And they traditionally don't last as long in the mitral position as the aortic. Of them, the bovine would be my choice. But the odds don't weigh well for longevity of any tissue valve this young. And there are too many reops - I would figure it to take three more tissue valves to get you through an average lifespan.

The newer, anticalcification-treated valves are an improvement, but the useful life figures normally quoted are for people twice your age and for the aortic position. I would be very careful with any too-good-to-be-true figures you may hear bandied about.

If you were a woman who wanted to get pregnant, my reply might be different, because some things in life change the balance, and alter the value of the risk.

Fortunately, many mitral valves can be repaired quite well. I hope that's what happens for you.

Best wishes,

 

[Ross]

Man when are these people going to stop with this nonsense about Coumadin? Every new person that comes in here is saying the same things over and over.

Alcohol-try to limit yourself to 2 drinks per day and be consistent. The big worry with alcohol is the possiblity of stomach bleeding from ulcers. If your a heavy drinker, then you best stop drinking or never start coumadin. Somethings going to kill you whether it's bleeding from coumadin or poisoning from the alcohol.

Vit K-Eat the foods you like, don't listen to their rubbish about eating greens and all of that. My saying is this, Dose the Diet, Do Not Diet The Dose. The coumadin will be adjusted for the diet you eat. Diet actually plays a very small roll in your INR level.

I'm for anything that is going to keep you from being on the OR table again, so mechanical would be my choice. This isn't something you want to go through again and again. Mechanical is no guarantee against another, but it's possible you'll never need a reop, with tissue at your age, 3 maybe 4 more surgeries in the picture.

 

[JimL]

I'm going through a clumsy faze, especially as far as head injuries are concerned. A few weeks ago I managed to get a gash above the hairline about 45 minutes before we were expecting friends to come over. I held ice on it for a half hour, and no problems. Now that that's healed up, I've hit roughly the same place on my head against immovable objects a couple of times the past few days. No sense has been knocked into me yet, and no problems whatsoever from taking coumadin.

I did start making my own wine after starting on coumadin. I've also brewed beer, and recently tried root beer; I may try some butterbeer tomorrow. I also consume some of what I make.

Valve choice is a personal decision. It is good for you to gather all the information, and then make an informed decision. But you won't know the future; so make your decision and be content with it.

 

[Kate]

Mike,
Welcome! Sorry you're having to face surgery but hopefully your repair will be a great success. If you do need to have your valve replaced, I would tend to agree that mechanical is the best choice for someone your age, even though I'm very pleased with my choice of a bovine valve for my aortic replacement at age 38.

I'm expecting to have my first resurgery in 10 years and recognize that the risk of serious injury or death roughly doubles with each surgery. I'm willing to take that risk because I'm hoping the next two valves will last 15 years each (with a little luck) allowing me to reach my late seventies with 3 OHS. This decision made sense to me for a variety of reasons related to my personality, where I live, etc.

Although only 10 years younger than me, your situation could be very different. You could easily burn through three valves by your early 50s. Even assuming you go to one of the best hospitals with very low mortality rates, you could be looking at 1 in 7 odds (or higher) of not making it through that 4th surgery.

Again, this is a personal decision and there are a wide variety of reasons for making a decision at odds with what might make sense objectively. However, all things being equal, I'd go mechanical if I were you.

Best of luck, Kate

 

[Gemma]

Hi Mike, and welcome!

Firstly, let me say that December 9th is an excellent date - it's the same date my boyfriend Jim had his AVR 2 years ago. He's now 28.

Jim chose the mechanical valve to avoid a lifetime of wondering when he'd need his next surgery. His cardiologist is happy for him to do whatever he likes activity-wise (including mountain biking and on and off road motorcycling) and he just eats the same as he always did. As for alcohol, it's quality, not quantity, that counts! Jim actually had to cut down before his surgery because he was taking an ACE inhibitor, so he was used to that by the time he got his new valve. Now he'll have a drink if he wants, but it'll usually be a "real ale" rather than cheap lager. Not a bad thing really.

I think everyone else has summed up the pros and cons already - just wanted to give you the perspective of someone the same age as you .

Will be thinking of you on the 9th. Do you have someone to post after your op by the way, we tend to get anxious if we don't hear anything!

Gemma.

 

[Granbonny]

Hi Mike

Hi Mike

the worse thing about coumadin..taking a pill EVERYDAY.. I know you are young and active..but you do have to remember to take it.....I would worry about my son..He's a little older than you..but forgetful...due to his busy life-style. I have to call him, still, to remind him to call family members and wish them Happy Birthday ect. ..A pillbox is great...Leave it where you can remember to take it..Next to toothbrush, ect.....Good luck on any decision you make. bonnie

 

[Ross]

the worse thing about coumadin..taking a pill EVERYDAY.. I know you are young and active..but you do have to remember to take it.....I would worry about my son..He's a little older than you..but forgetful...due to his busy life-style. I have to call him, still, to remind him to call family members and wish them Happy Birthday ect. ..A pillbox is great...Leave it where you can remember to take it..Next to toothbrush, ect.....Good luck on any decision you make. bonnie

Does he forget to take his gun, badge and handcuffs to work? If so, then maybe he shouldn't take Coumadin. I bet he doesn't though! Just as the tools for the job preserve his life, so Coumadin does for mechanical valvers.

 

[MikeHeim]

Thanks again to all who have replied!

After much thought (that still continues), I am seriously considering the artificial. I'm still not sure how I will deal with things like being 100 miles from a hospital when I'm up in the mountains and I slice my hand open, but hopefully those fears would pass with time.

One last question on the bovine. My surgeon has stated that he would expect me to get 12 years out of a bovine valve. Does anyone know if high activity levels tend to wear them out faster? I guess I have one other question: Has anyone gotten a bovine for the first replacement, and then switched to the mechnical valve the second time around? This actually seems pretty palatable because I hope I would have settled down some by time I reach 40 (at least I think that way now).

Thanks!

 

[geebee]

Mike,

As someone who has had 3 surgeries, I would tell anyone who will listen that you want to go through as few as possible. Each one is harder and there are so many chances for errors because the surgeon has to go through so much scar tissue.

That being said, you may have a good case for a tissue this time and a mechanical the next. If you do a lot of potentially injuring activities, a long way from civilization (read hospitals), coumadin may be a problem. For those of us who lead relatively "normal" lives, coumadin is no big deal. We know what to watch for and how to avoid injuries (as much as that is controllable). You know your lifestyle and need to take that into consideration when making your decision.

I would say that, should you decide on a tissue this time, please choose a mechanical the next. Avoid surgery whenever possible and reasonable for your life.

 

[Gemma]

Just wanted to add that taking warfarin (coumadin) doesn't mean you're going to bleed to death the first time you cut yourself. As an example, Jim fell backwards down some rocks off his trials bike last year, and got an approx 4"x2" fairly deep graze on his back. It bled for a bit longer than it would had he not been on warfarin, but not so much that he had to go to hospital for treatment. Ditto when he dropped a Mini engine on his arm a couple of months later. Did I mention he's a little clumsy sometimes .

To explain further, Jim's INR range is 2-3 (it'll be a little higher for a mitral valve - 2.5-3.5 I think). When he tested it recently it was 3.1, and the PT time (time it takes for the drop of blood on the machine to clot) was 20-something seconds. So, it takes longer to clot, but does clot given time.

As far as switching from tissue to mechanical, it's been done, as has going from mechanical to tissue. But I'm with Ross and Gina on the "keep surgery to a minimum" side! Whenever the subject comes up, Jim's response is always "NO WAY!!!" (OK, to be honest it's a little more colourful but I don't want to offend!).

Of course, if you do get a repair this will all be hypothetical anyway .

 

[MarkU]

What sort of activity restrictions are those of you on Coumadin under? My surgeon mentioned that I should stay away from skiing, surfing, or anything that could possibly result in head trauma. In addition, I need to basically cut out any alcohol, watch how much Vitamin K I ingest, etc. These possible restrictions are actually scaring me more than the actual surgery! QUOTE]

I have a mechanical valve and will have been on Coumadin for five years on 12/15.
I do triathlons, yard work, work on my cars and sometimes even run with scissors.
I use a razor when shaving and occasionally cut myself.
I have never had any uncontrolled bleeding.
I have a couple of glasses of red wine with dinner most evenings.
I watch my diet, but to control my weight, not my Coumadin levels.
I had a Lovenox bridge this past year when I had a colonoscopy/polypectomy - not my favorite experience, but far better than open heart surgery.
Just my $0.02
Mark

 

[Kate]

Mike,
I read everything I could find about the bovine valve prior to getting mine and found no indication that a very active lifestyle would either decrease or increase the life of the valve. When asked, my surgeon insisted that there was nothing I could do to extend the life of my valve - diet, exercise, weight, etc. don't seem to have any impact on the calcification process.

As far as choosing a biological valve now and going with a mechanical valve next time, I think this is a potentially good choice under two conditions. First, you have to accept that your Dr. can't promise you 12 years. They simply aren't able to predict this with any assurance. It might be 14 or it might be 8 or even less. Secondly, you need to be confident that you will have the kind of job that will offer you good health insurance so that you can go to one of the top ranked heart hospitals to get your reoperation. If not, I'd still go mechanical. Kate

 

[mielkep]

I hope this gets to you in time, I'm 30 years old and just had my aortic valve replaced in september, I now have a mechanical valve which means I am on coumadin. I'm fairly active, I live in colorado and I snowboard, run, climb 14ers, hike, etc.... Neither my cardiologist or surgeon has suggested I give up any of my activities I enjoy so much. The only thing they both told me was to be sure to wear a helmet when I snowboard. I have found that being on coumadin is no big deal at all. It seems like it depeds on what doctor you talk to in terms of what they tell you can and can't do activity wise while on blood thinners. Hope this helps!

Paul

 

[Lynlw]

Mike, I understand your concerns about being on the mountain and away from the hospital and thinking maybe getting tissue now and mechanical when you settle down more. I didn't get a valve, but my 17 year old son did. and since he does alot of outdoor activities in the country and loves to sail w/ scouts. that was one of my concerns w/ Justin and a mechanical valve. I had a few others but that was my biggest fear. Luckily for us, (I guess lucky sounds odd here) Justin also had his conduit (a tube from his right ventricle-pulm artery) replave when he got his valve, so all the doctors said since that will only last 10-15 years he should get the tissue.
So I think tissue now and mechanical later (if something better hasn't shown up by then) is a good idea in your situation, Lyn

 

[T-Money]

Hi Mike.
I'm a 32 yr old active person and on Coumadin. The only things I have changed is that I don't engage in team contact sports anymore. I gave up basketball and football. I did this because I didn't want others to treat me differently or have someone in a pick up game forget that we're not in the NBA and crack me in the skull. As long as you are doing individual sports (sans knife juggling or sword swallowing), you'll be fine. I received my St. Jude mechanical on April 15 2005 and was fully recovered (i.e. running, lifting weights, biking, cutting grass) by late July. After that long recovery period, I was so happy that I minimized my chances of having to do that again anytime soon. Regardless of age, open heart surgery recovery is not fun. Unless you have a heck of a compelling reason, don't do anything that could make you more likely to go through it again. If you don't buy what I'm saying, let's talk in about 2 weeks when you're telling your caregiver (and you will need one for at least a week or two) how much fun ohs recovery is. I along with everyone else will be praying for you and thinking of you. Hang in there and have faith.

 

[Granbonny]

Hi Mike

Hi Mike

I see you have 3 more days before your surgery..I will put you on the calendar ..so we can all wish you good luck...no matter which valve you choose..it will be the right one. ...I usually post for someone going with tissue..to remember it takes a year after surgery to really feel your old self again..and remember the year before your tissue goes South....Probably lots of doctor visits, echos, ect.........Also, I'm still amazed at what I am still learning from other people posts.... Kate made a good point..about Insurance...Will you still be at the same job?Same Insurance when time for a replacement?...........Average cost for open heart surgery..$100,000... would a new job pick up Insurance after they know one has had open-heart surgery?..These questions are not meant for you..but for me to ponder..wondering if others who chose tissue at a young age thought about this?Someone in their early 50's..would probably have medicare to pick up a second surgery...Please have someone to post for you after surgery..We like to know how you are doing? Bonnie

 

[LeoSmith]

Foreign Travel

Foreign Travel

Thanks again to all who have replied!

After much thought (that still continues), I am seriously considering the artificial. I'm still not sure how I will deal with things like being 100 miles from a hospital when I'm up in the mountains and I slice my hand open, but hopefully those fears would pass with time.

One last question on the bovine. My surgeon has stated that he would expect me to get 12 years out of a bovine valve. Does anyone know if high activity levels tend to wear them out faster? I guess I have one other question: Has anyone gotten a bovine for the first replacement, and then switched to the mechnical valve the second time around? This actually seems pretty palatable because I hope I would have settled down some by time I reach 40 (at least I think that way now).

Thanks!

Dear Mike,

I wish you the best with the surgeries. I have had a human tissue (not bovine) and an artifical valve. The first surgery was when I was young (13 or so). The second was at 21. I certainly pay a lot more attention to my heart concerns now that I take coumadin, but this might be more of a reflection of my change in maturity...

Realistically, I don't think that the lifestyle differences are that great between mechanical or tissue valves. Given that, the reduced chance of surgery makes the mechanical valve a no-brainer for me (unless you are a woman interested in child bearing where the choice would a no-brainer in the other direction). I was very disappointed with the tissue valve. There seems to be a lot of variance on the amount of time a tissue valve lasts, and mine only lasted 8 years. I don't enjoy OHS, and I would trade quite a bit to avoid it, and I barely think I traded anything by going for the mechanical valve (except maybe binge drinking ).

As for being far away from help... I spent one month in the middle of nowhere in Madagascar two years ago for work, and I was concerned. I had plenty of bump, bruises, and even a broken rib by the end. Everything worked out fine. You just have to be prepared and know what to do. From my perspective, the head injuries are the problem, so just be more careful. I have been cut plenty of times, and they have been slightly worse than earlier in my life, but it is certainly not "crazy" or even that noticeable how different the coagulation is. Again, my biggest concern is head injuries, so I am just more careful in that regard. Don't be overly scared about the bleeding. It really has not affected me much at all after 10 years. I have travelled to some pretty strange places for work, and the only activity I avoid is SCUBA. Otherwise, my life is pretty much the same.

Again, I wish you the best of luck. Recovery from surgery is a bit slow at first, but you will be back to yourself in a blink of the eye.


Leo

 

[MikeHeim]

Thanks!

Thanks!

I'm now only about 1.5 days before surgery and I'd like to say that I have a pretty positive outlook on it. I'm leaning pretty heavily towards doing the bovine now and a mechanical next time. (That's if the mitral repair doesn't work - I still find it a bit interesting that the replacement I've been brooding over so much still only has a 15% chance of being required.) However, I guess my final decision won't be made until tomorrow when I have to put said decision in writing.

I can't thank all of you enough for your input, not just in this discussion thread, but all the others that have roughly the same topic. I've read as much information as I could at other sites around the internet, but I don't think anything beats hearing the stories and perspectives from those who have had to make this difficut decision themselves.

Anyways, I will try to have my fiance drop a note on my behalf on Saturday or Sunday to let you know that things went OK. If not, I'll drop a note myself when I get home early next week. Thanks again!

Oh yeah, if it's not too much trouble, please send a prayer, happy thought, etc., in the general direction of UCLA on Friday morning.

Mike