“What Is The Best Heart Valve Replacement For My 16-Year Old Son?” Asks Carole

I also agree that it is each individual’s choice. I was told its my decision. I fretted over this as I am 45 and also considered young. I was at first recommended the mechanical in which i was told I had no choice because I was so young, but then i researched and swtiched doctors and found that I could indeed go w/a bovine valve. No one can guarantee that i will not have problems with either valve, mechanical or bovine, and mechanical for me i did not want to take blood thinners since i wasn’t taking any meds to begin with. Whatever you chose will be right for you, there is really no wrong choice, just “choices” and that too is hard. Although every time I go for a physical now and they look at me and ask, i tell them what i got and they just respond “oh, great.” since I don’t have to be monitored w/meds. My valve can last, 2 years, 10 years, 20 years or the rest of my life it really is body dependent, and after its in, its out of your control, your body will deal w/it. BUT i feel soooo good now. Didn’t know what i was missing!

Is there any way that the valve can be repaired instead of replaced? When the valve is replaced, it has to be done again at some point in the future, depending on the type of valve. At the Cleveland Clinic, they don’t do ANY replacements (I also believe that Dr. Adams at the NY Hospital is the same). They ONLY do repairs. That way, there is no issue with having to do it again. Check into it and see if it is a possibility. I had mitral valve repair in Dec 2009, and I am doing great.

I had a St Jude’s mechanical valve implanted when I was 54. I’m now just shy of two years out and my coumadin therapy has been a huge source of frustration. In all that time, I’ll bet my PTINR has been in range twice.
I’m just coming off having blood work done for the third time in a week and still I’m now below range and had been way above the first two times.

For a young person to be messing with this disaster is something I would not recommend to any one of my three adult children. In fact, my two boys both have heart murmurs, and were born with them, just as I was.

My kid would get either the pig valve or something human, but that is just me.

I had mitral valve repair surgery in August 2010. I was on no medications before surgery and was happy to leave the hospital with no meds. However, six weeks after the surgery I developed atrial fibrilation and atrial flutter and have been on Multaq (an anti-arhythmic) and Coumadin since that time. So, even with a repair, you’re not guaranteed to stay off Coumadin. I very recently switched from Coumadin to Pradaxa, a new anti-coagulant which was just approved by the FDA last Oct. There are no INR checks with this new drug, and you can eat all the spinach and broccoli you want. So, it makes life much easier in that respect. I’m a very active 61 year old lady who skis, hikes and bikes with feet clipped into the pedals, so any anti-coagulant makes me very nervous. I’m coping with these drugs just fine, but I do wish they could disappear from my life.

First, contrary to what Patricia posted above, Cleveland Clinic is a leader in valve replacement, both tissue and mechanical. Repair is rarely an option, and as the doctor in the original post stated, there are concerns with durability of repairs, though it may be the best option. My surgeon had promised to look at the option of repair once he was in but determined that it was too far gone when he got there.

Second, warfarin anti-coagulation therapy needn’t be feared. It isn’t for everyone, and it is certainly easier for people who are consistent in their habits. Exercise frequency and intensity, consumption of certain foods, use of alcohol, and other factors play a large role in maintaining a steady INR. Having said that, if this is a reasonably stable and responsible 16 year old, who is willing to take some responsibility for his own health and well-being, warfarin can be quite easy to deal with. Self testing rather than visiting clinics is now more accessible and affordable than ever before and there are several online resources to turn to for advice and information that is better than many Primary Care Physicians (even cardiologists) give out.
Carole, if you or your son would like to talk about what anti-coagulation therapy has meant to my very active lifestyle and how I experience it I would be happy to have that chat. I was 39 when I had my valve replaced but I play like a 16 year old still. I cycle, rollerblade, ride motorcycles, run, jet-ski, sail, camp and just about anything else I can think of.
A mechanical valve may or may not be the right choice for your son but I do hope that he gets the real facts to help him make his decision. There is a lot of negativity on the web about warfarin, most of it completely unwarranted.
If you reply via this forum I’d be happy to pass on my contact imformation to you.
Paul K

Thanks everybody for your comments!

For anyone interested in learning more about the key indicators for aortic valve repair versus aortic valve replacement, here is a video that should help you learn more.

http://www.heart-valve-surgery.com/heart-surgery-blog/2011/02/20/lars-svensson-aortic-valve-repair/

Keep on tickin!
Adam

Actually Paul, you are correct ONLY when it comes to aortic valves.
http://my.clevelandclinic.org/heart/disorders/valve/youngvalve.aspx
Carole, this is a good article to read about young aortic heart valve surgery for young hearts!

Cleveland Clinic does almost exclusively repairs when it comes to mitral valves. Since I dealt with a mitral valve and not aortic, that is what I was familiar with. My mistake and my apologies!

“Mitral Valve Repair at Cleveland Clinic” (from the website)
Cleveland Clinic heart surgeons have the world’s greatest experience with mitral valve repair, the best option for most patients with a leaking mitral valve (mitral regurgitation).

At Cleveland Clinic, nearly all leaking mitral valves are repaired rather than replaced, providing patients with ideal outcomes. The majority of these operations are performed minimally invasively, ensuring rapid recovery.”

Fair enough Patricia, and thank you for clarifying your statement. Since we were talking about an aortic valve patient I thought that you meant to say that Cleveland wasn’t doing AVRs anymore. As you now know, this is not at all the case.

I wasn’t aware though, and am pleased to know, that they are able to repair so many mitral valves, and with minimally invasive surgery too! As those of us who have undergone the sternotomy know, healing from the heart surgery is quick and easy, from the sternotomy takes the time and patience. (Although recovering full working capacity from the hear does take a little time too. Whatever our young compatriot chooses, I do hope he finds a cardiac rehab centre willing and able to work with a young patient. It can be a little frustrating to rehab alongside people who have as an end goal something resembling your starting point.)

I had my aortic valve replaced in Dec 2009. I used a ATS Open Pivot valve and have yet to hear it as it is the quietest valve made. I do anything I want from yard work to fun things like running and cycling and I am never out of breath. I found the choice was a no brainer. I never want to have my chest opened up again and the procedure reproduced. I was 48 and was told non mechanical valves last anywhere from 8 to 12 years, on average. Mechanical valves last a life time. INR monitoring was not a big deal. I bought a machine with 48 sticks for around $650 and tested twice a week for the first year. I stayed in my range and adjusted my meds as neccessary and have moved to once a week testing. I still adjust my meds weekly. I do watch my diet and maintain my exercise levels as consistently, week over week.

While I can’t say what is best for your son… My son had the Ross Procedure done at age 14. He is now 16 and doing great. Without having to take meds!!! We never know what our future will bring but this was the best option for him at the time of his surgery. Doing your research as I can see you are, and being prepared will help you during the process… My thought will be with you.

Go for the Ross. If done by an expert the complications are minimal.
prof Magdi Yacoub recently gave a talk showing that Ross has survival approaching that of non valve surgery population

I understand the dilemma here for Carole and Ian – I wish you both and the whole family all the best in your choices.
I had a metal heart valve fitted (aortic valve) by Bentall Procedure last November. The choice was in view of my relatively young age (47) and because the cardiologists strongly advised it. However, I don’t think I knew enough about animal vales (pig and cow) to be able to make a good decision. So it’s really important to get al the information and opinions you can before you decide, and this may mean visiting more than one cardiologist. In my case there was no time for this as the indications were urgent, but I would advise shopping around for opinions.
The anticoagulation therapy has been fine for me so far, although I have had to change my habits and it’s true that you need to be disciplined to keep up the drugs. I just accept it as a fixture in daily life, and my kids help me to remember the medication times by setting the alarm on my iPod Touch!
One thing – I take Acenacoumarol, a rival to Warfarin, and currently favoured in some European countries (I live in the Netherlands). It’s working fine. It’s important to know that Warfarin is not the only option.
Good luck!

Hi Carole and Ian,
I can totally relate to your situation as I was a pediatric aortic valve patient as well. I am 23 years old right now and I had my aortic valve replaced last June when I was 22, but I had regurgitation of my valve since I was 12 years old. I was told when I was younger that the Ross Procedure would be best for me because it allows for growth still through the teenage years. However, when I finally HAD to get my valve replaced last year, my surgeon recommended that I go against the Ross since it adds another valve problem to the equation.

The next decision was between the mechanical or biological bovine valve. I will give you one huge piece of advice with this decision – it should be YOUR decision. You will be the one living with the valve and one valve is not more difficult to put in than the other (my surgeon assured me of this). I chose to go with the biological bovine valve, and the main reason why was I was scared to go on Coumadin. Being still young, I did not want any restrictions as far as sports or activities, as well as going in frequently for INR blood tests. Having said that, there is a shorter life span on the biological valves and I will probably have to have it replaced within 10 years. If you do choose to go the mechanical route, it has a great life span and will probably not have to have it replaced for a very long time, and maybe ever.

Let me know if you have any other questions at all, I have a page on the journal site. I know how difficult it can be to be a young person going through this. I wish you the best of luck and God Bless!

Trevor

Hey Carole and Ian,
I think we would agree that making the choice sucks. I was 38 when I got my On-x aortic heart valve. I am in the study that the Dr. mentioned. For patients in the study with just a valve replacement they are being put on just Plavix and aspirin. The study looks good so far as to lowering the INR for all On-x patients. I think anti-coag has gotten a bum rap. It’s been a piece of cake for me, I eat what I want, do what I want, take my pill and don’t worry about it. These people that freak out everytime their INR drops a point or two crack me up. ITS A RANGE PEOPLE!!!!!! Obviously, the decision is yours. MY personal reasons where that pig and cow was out considering my age and the Ross was out, due to compromising a healthy valve and a more difficult dangerous surgery.
Good Luck!!!

Hello from Carole,
I am amazed at the wonderful and varied answers that have posted on this blog since I asked the question of Adam. I agree that this is a very tough question. We have waffled between mechanical valves, tissue valves and the Ross procedure for months now. But, Ian told me just the other day that he has decided on a tissue valve. (He did not say what kind and that will probably be the next decision. And this decision could easily change any day). We are leaning towards the tissue valve because of the precautions one must take with coumadin. Ian is an active boy involved in scouts, hunting and other outdoor activities. Ian is researching his options very carefully and I will let Ian make this choice. (I guess the mom is given the task of posting on blogs!) I was glad to see Trevor’s comment above…I had already gone to his journal and read about his AVR and recovery. I also read about the teenager who is a vegeterian and had a tissue valve implanted. If there are any other teenager or 20 year-olds who have had AVR surgery, I would love to hear about which valve you chose and why. This will be Ian’s second heart surgery. When he was 3 he had his aortic valve repaired. I realize that he probably will have a third surgery some day if he has the tissue valve implanted but I think that there will be many medical advances in 10-15 years regarding coumadin and open heart surgery techniques.Thank you all again and keep thinking of good thoughts for Ian. His surgery is scheduled for August 17th. Carole

Hi Carole,
It’s great that you and Ian have the time, the energy and the inclination to consider all of the options available to you. If Ian has decided on a tissue valve then I applaud him for having the courage to make a decision and respect that it is his to make.
I really would like to state clearly though, that coumadin need not prevent anyone from doing camping, scouting, hunting or just about anything else you could imagine or hope to do. My earlier caution about it requiring a level of responsibility and consistency stands but there are far too many myths out there about what life on coumadin is like. I often see mention of the web of coumadin being the reason for choosing a tissue valve, and that, on the surface, is fine. When it is a myth or misunderstanding about coumadin though, I can’t help but wonder whether people would have chosen differently had they known the truth.
Coumadin need not restrict activities. Coumadin need not restrict your diet. Coumadin doesn’t require frequent visits to the doctor if you acquire self testing equipment.
Coumadin does require active participation in one’s ongoing care, a certain amount of consistency in activity, testing, diet etc, and it is a lifetime commitment.
Please do ask a surgeon whether they think that 15 years of surgical development will likely change the re-op techniques for prosthetic valve replacement. Some don’t believe so.
Cheers,

Paul

Hi, Adams, critical dilema indeed since many years. Fortunately a concrete solution is going to emerge for young patients who are the large majority of candidates for heart valve replacement worldwide (on press in one of the major cardiovascular publications). Congratulation again for your pertinent and well informative blog. I would recommend to Carole today the ATS or the On-X valve with a minimum dose of Warfarin (INR between 1,5 and 2). However the final choice must take into account the personal profil of Ian.

I face this decision – tissue or mechanical – shortly for AVR. I am 73. What are the main downsides to coumadin? And what are the alternatives?

Hi i ma a 14 yrs boy i m from Nepal i have a valve problems i meet doctor he examine by electrocardiography , ECG , and chest x ray in the diagnosis \” Bicuspid Aortic Valve , Midly Dialeted lv ,Moderate to serve ar IVEF -65% . i know that my last treatmetn is valve replecement… I m a poor patien\’t now im am reading in class 8 … i want to what i am doing please doctor repply me

Hi Robin
First, check your options with your surgeon and doctor. Tissue based valves allow the user not to have to take blood thinners, where mechanical valves require blood thinners and monitoring. The drawback of tissue based valves is how long they last before another replacement is needed. Tissue based valves last about 10-12 years, average, where mechanical valves can last a life time. There are valves that were used in the 1960s that are still going strong and technology has greatly improved, where even today you can get a quite valve like the ATS open pivot, my personal preference. Blood thinners are very cheap medication to purchase but have some issues that have been covered here, primarily monitoring and restrictions in foods and contact sports. Today you can home monitor, much like sugar diabetes is done with a small hand held machine, your PT/INR in a range that your specific valve requires. I monitor weekly and sometimes bi-weekly to keep my range. Food restrictions are those that contain vitamin K and reduce blood clotting. Most green leafy vegetables are off limits as a rule but if you eat a salad every meal then you allow for this and adjust your meds so that you can eat your salad every day. I personally love cranberry sauce with my turkey dinner so I adjust my meds 3-4 days before I will eat cranberry sauce so that my range is maintained. Then there is the limitation of contact sports. My doctor told me that if I am in range and got hit playing football where I was bleeding, I would have no problems because my blood would clot like anyone else. The problem is that many people do not home monitor and go to a clinic or doctor monthly for a PT/INR testing, and most of the time, studies show that many people will be out of their range during the month. If you are out of range and become injured then your blood will not clot as effectively and could be a problem. Monitoring your PT/INR is the key to a mechanical valve. In the present post we were discussing a 16 year old who would obviously have to have this procedure at least once more in their life if they choose a tissue based valve but they will not be limited with blood thinning monitoring or food and sport restrictions. This, of course, is a personal decision that the 16 year old has made with his doctors and parents. Information is the most important reason for Adam’s excellent work on this site and bringing both medical doctors and patients together to present these resources for everyone.

I just had heart valve replacement (2 valves). Surgery was Feb. 16th 2010. I had 2 mechanical valves installed. I am 51 years old. I am doing very well. I am keeping my weight down and exercising. I ride a bike 15 miles in one hour and 25 miles in 2 hours. I swim 1300 yard non stop in one hour. I will walk 3.5 mph pace for up to 10 miles at a time. I can eat what I want, because I like everything. I am on 10mg of warfarin (cumadin) a day and one day 15mg. I am usually between 2.5 and 3.5 where they want me to be. I regularly stay at 3.0 and do not varry much. I have mild hearing loss so the clicking of the valves is rarely a problem. The clicking would probably be bothersome to someone with good hearing. I know my dog can find me when I try to hide from him. My biggest concern is surgery needed later down the road with thinners. The good new is my valves should last till I am 74 (25 years). I like not huffing and puffing to walk, swim, and bike. I have never smoked, well maybe one pack total in my entire life. My arteries had the catheter and they said they were as clean as an 18 year old. I am happy with the metalic valves overall. If you have a choice and are thinking about metal valves, and have good hearing know it is like sleeping next to a grandfathers clock, per my wife.

I’m curious George, do you really have metallic valves? Or do you have pyrolitic carbon valves which are significantly more common these days. I also wonder why your docs told you that you would only get 25 years from a modern mechanical prosthetic valve, when evidence indicates that they will likely outlive you, barring bacterial endocarditis or the much rarer growth of pannus tissues, which can occur on either type of valve.
Sounds like your pair are louder than average though, with the comparison to a grandfather clock. Perhaps this is because they are, as you say, metallic? My carbon aortic valve needs a VERY quiet room for me to hear it.

My Dr. said my valves came from St. Jude. My record card says On-x Prosthetic Heart Valve from MCRI 27 and 29 mm. I do have a St. Jude card also that goes with them. I probably exagerated with the grandfathers clock comment, but my wife can hear them in the car, when we are watching T.V. and my daughter can hear them up to 20 feet away in a quiet room. Did I mention my daughter can also hear a gold fish fart at 6.2 feet in 12″ of water? I work on motors for a hobby and asked the Dr. if he would leave a bolt on plate on my chest and I would do the next valve job. You have to have a good sense of humor, and a great wife for support. I am going to be lucky enough to see all of my kids in college. A year ago I could not have told you that for sure. 2 of my 3 kids have desided to go into health care because of the great experience I had in the hospital and my life being extended. I still drive by the hospital and thank the doctors and the nurses for being alive and well. Just as a side note where can I get a good set of westminister chimes for my pocket protector? I hope everything goes as well for everyone as it did for me.

Interesting responses. The decision is a very personal choice. I am 37 years old and had a Ross operation to repair my bicuspid aortic valve 9 years ago, when I was 28. I thought the Ross was going to last my whole life. However, recently I learned that my aortic root has dilated and now facing surgery again on May 2nd. Surgeon is not sure he can salvage my valve, and now I’m leaning towards a mechanical valve if my existing valve cannot be spared. 9 years ago there was little research or information on the drawbacks to the Ross procedure. Never heard of the risk of two valve problems, nor the risk of re-surgery. However, for a young person, a life of Coumadin is a big factor. I feel now at my age that going on Coumadin is something that I will just have to deal with, and I’ve read the horror stories but also heard of the successes. I don’t want to face surgery again, and if I choose a tissue valve could be facing an operation at least a few more times. Again, the choice is very personal and only the patient can make the choice that they feel comfortable with.

just to give everyone some added info. I had the ross procedure done at 23 with a donor valve, and now at 35 I’ve had to have both the donor mitral and my aortic valve replaced again. this time I have a mechanical aortic (on-x). three weeks out and every thing seems ok. but the on x is really loud. so basically no the natural valve repacements do not usually last more than 10-15 years. i’m hoping the fake one last longer, if that means blood thinners then so be it.

i should have metioned that my inr is between 2.0 & 3.0 so I usually only need 5 mg of cumadin. at this dose my blood still clots fine when I bleed. I’m a very active person I was a constuction worker, motorcylcist, and exercise alot. as far as I can tell the only thing i can’t do anymore is the constuction work, oh well.

I think i luckily chose a mech. valve (on-x). My reason was if you have a bad knee, do you take a part from your other knee to fix it? I thought about the Ross Procedure for a long time, but I’m glad I didn’t go with it. It sucks that you had to have re-surgery. The bad reports on blood thinners usually come from 80 year olds with multiple other problems that love to blame blood thinners for all their problems.

Jeremiah,

I’m curious why you needed resurgery? Was it a dilated ascending aortic root?

Edward

Hi Jeremiah,

Congratulations on your successful surgery. I have a question for you too. Why can’t you go back to construction work? I am nearly two years past my own AVR with mechanical and am also on warfarin, with an INR of 2.0-3.0 (although it takes 11mg every day to keep me there). I am also still active, running, cycling, hiking, camping and motorcycling. I have a very vigorous job as a marine engineer on a large yacht, which I waited 6 months after surgery to return to. The very first work that I did though, at 2 months out, was to install a new floor and a paint job in my rental property (way too soon, wouldn’t recommend that)and the second, at 4 months, was a full bathroom reno with drywall, a new tub, tiling, plumbing and paint. That was hard, but it was a good test for me so that when I got back to my regular work I new I would be just fine.
Good luck with your continuing recovery.
Paul

I had a St Jude mechanical valve for my Aortic valve in March 2008. I was 53 years of age. The disease was due to bacterial endocarditis As it turns out, I had a congenital condition of a bi-leaflet valve, which would have required surgery, at some point.. 4 months later, I had a \”redo\” which was as a result of insufficient antibiotic therapy during the first valve post-op. I am on Warfarin and have been in range for over 3 years. I did not change my diet, but adjusted the med to be within range if tending low or high in the INR test. I have cut myself and bumped/bruised without complication of a bleed. I lift weights and run, never concerned about the bleeding problem. It\’sjust a nonissue with me. I do carry a Medic alert card to provide information about my condition should I be seriously injured in an accident of any kind. I also have epilepsy, a condition I acquired after a craniotomy to correct a brain bleed caused by the bacteria flush in March 2008. LIfe has returned to normal with the exception of my superior athletic abilities. I guess my abilities would have faded as I aged, this was just an acceleration of the inevitable. Life has changed, but I am alive and life is good. If you would have asked me about life quality in 2008, I would have opted to \”check out\”. I went through multiple life traumas concurrent to these medical events, such as death of father, wife filed for divorce, terminated from my dream job of CEO, etc. I am writing an autobiography with a professional writer. I am hoping it is published and/or becomes a lifetime movie. Lesson: There are no guarantees to life. Even those who have meticulous diets and exercise often can suffer life threatening circumstances. Live life to the fullest while alive. Some of you are alive, but not living!

I had to make the choice between a tissue or mech aortic valve. I decided to go with a tissue valve because of my age at the time (70). After a meeting with the surgeon he suggested a mech valve. I had to have the valve replaced and my ascending aortic artery repaired because of an anueyrsm. His reasoning was two fold. My other arteries were clean like that of a 30 year old and installing the mech valve/aortic artery repair was less likely to develop leaking problems. I had the surgery 4/28/2010. That was my 70th birthday. My concern about the mech valve was the life time of taking warfarin. I take 3.5 mg daily and get checked monthly. My IRN is usually 2.7-3.0. I have only had a problem with the IRN once. That happened when I was treated with an antiboitic for an infection. It took a few daily/weekly adjustments and checkups to get the numbers right. I am adjusted to the routine and continue my life the same as before the surgery. The choice is a tough individual decision. The doctors involved are a valuable source of information when making the decision. This blog where people are willing to share their successes and failures is also a great source of information. Thank you.

While it is up to the invidual, i had one doc tell me i had no choice when i had mine done 11/2009, said i had to have mechanical, due to my young age, i was 42 at the time. I said ok. I went for a second opinion and he said what are you thinking? that was the old thinking, while yes it is not a permanent solution there is still no guarantee that the mechanical won’t have problems either, and taking blood thinners has its own risks. After further research i opted for a pig valve. My surgeon was happy I did, and I made the choice myself. It was hard, but i am sooo happy I did. I figure if i can get 15-20 years out of my valve, maybe something new (which we know they are working on) will come to fruition and they won’t have to be so invasive! Not having to take blood thinners was my bonus! I go for my annual check up tmw, and am so happy that I listened and reasearched it myself. It was a hard choice no matter what, but I felt good about it and after i told my doc he too said he was happy i had gone that way (although i had joked, why can’t he just pick one and make my life easier-but he said no, had to be up to me.)
good luck!

Hi Paul. I realize this was posted 4 years ago, but with the hope that you may get email notifications on replies, or that you may still visit this site, I am taking a chance. My husband, also Paul, is having a Ross Procedure reversal and repair of an aortic aneurism in December at the Cleveland Clinic. Since his OHS Ross 12 years ago, he has had tissue valves and for this upcoming surgery we are weighing the pros and cons of tissue vs. mechanical. I am very interested in putting him in touch with you to get your feedback on the mechanical valve and living on blood thinners. He is a 37 year old, very athletic, active, outdoorsy dad of 2 young boys who is concerned about a lifestyle changes w/ warfarin. I read that you seem to be as active as he is, and we could really benefit from your input!

Adam they say it’s tough to do minimal invasive on aorta valve repkacement cause of scar tissue. Is this true? Seeing lars Sevenson next week he has seen preliminary results of my situation now wants me to come down for further test. Is this a good sign for me to have a chance and consult with the best