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My heart valve choice

Hi! My name is Daniel. I'm 34 years old, and just had a valve replacement surgery done at the VA hospital in Miami.(I've been out of the hospital for 3 days now.) My condition was a regurgitating bicuspid aortic valve, a birth defect that until now was undetected. I just wanted to let everyone in this forum know how much I struggled with the two valve options, and what my decision was. I opted finally (at the last second, practically) for the natural valve. Everything I had researched on Coumadin was disturbing, and I did a LOT of research in the 7 months before my surgery. As far as I could see, the only benefit to a mechanical valve was no second surgery, but I finally felt that the drawbacks to taking this medication far outweighed the one advantage. How ironic would it be if I got the mechanical valve, only to have my life shortened anyway by getting into a serious accident and bleeding to death, hitting my head and hemmorraging, etc... My surgeons said that I could expect a good 12 to 15 years out of my natural valve, and quite possibly never need to have it replaced at all. My surgeons initially made a good case for the mechanical valve, but, after speaking with them, and presenting my research findings to them, concluded that the natural valve indeed had many advantages over the mechanical valve that needed to be taken into consideration. The one thing they did agree on, is that if I did have a second surgery, it would be more complicated, and recovery would be longer, than the first surgery. I'm willing to take that risk.
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239757 tn?1213809582
MEDICAL PROFESSIONAL
Dan,

Im glad you are happy with your choice. In youger patients with needing valve replacements the choice is not always easy.

You outline alot of the pros and cons. Im glad things have worked out and you are happy with your surgery.

good luck!
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Avatar universal
Thank you very much! I really feel like I have a new lease on life. The valve choice was a decision I agonized over for a long while, but once I weighed the pros and cons one last time, and made the final decision, I felt a great sense of peace. This made going into surgery much easier. Also, the bulk of the information I gathered about the two valve choices came directly from this Cleveland Clinic website, so I would like to thank you, and all the doctors and advisors who provide information in here for helping me to make an informed choice.

Sincerely,
Dan
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Avatar universal
Thanks for the post Dan.  I have been researching the types of valves off and on over the last couple of months since I found out I needed the valve.  I am a very active outdoorsman and spend hundreds of hours alone in the middle of the woods/rivers/lakes each year, so I knew coumadin was probably not for me.  But every thing I found on the internet seemed to point younger people to mechanical valves.  
I think the hardest part of the decision is not knowing how bad the surgery really is.  
You have been through it, are still happy with your decision knowing that you may have to go through with it again?
I have read most of the stories on this site; some make it sound not bad at all, others scare the hell out of me.  
I am scheduled for surgery Jan. 6th at the University of Michigan.  My Surgeon (Steven Bolling)is supposed to be the best in Michigan, so I think I am in good hands.  
Once again thanks for the message, and update your progress on this site to let me know how it is going.  
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Avatar universal
Hello, Steve and Dan-
I wanted to some how give you piece of mind.
I had my aortic valve replaced w/ a pig valve when I was 38 yrs old. That was a year and a half ago, and I'm having the time of my life. I'm still going to the gym 5-6 days a week. Running two miles hard before my weight trainging. Water skiing 'til my muscles screamed. You'll be fine.  
I too struggled w/ the taking of Coumadin, afraid of getting into an accident, bleeding to death was my constant thought. I guess I felt that doing this over agin in 15yrs was worth remaining very active, and not questioning going out on my own wondering the woods. Not to mention haveing beers w/ my buds.
My surgery was done @ Spectrum Health East, Grand Rapids, MI.
The hardest part about the surgery was the backache. Hurt for a couple weeks after. Push yourself to go for those walks afterwords, they realy do help in your recovery.  
Don't worry, your scar will fade, mine is not as promanent.
Best Regards,
R.O.B.
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Avatar universal
In Jan 1999 I had my bicuspid aortic valve replaced. Due to other heart complications such as infected aorta that was threatening to rupture it became a emergency operation. I had no time to invest in finding out what these problems even meant. only afterfact, have I become cognizant of lots of issues. My surgeon at the time told me on the way to operating room that they were going to use a mechanical valve because of my age (54 at that time). Afterwards I found out that coumidin was involved for the rest of my life. My local drs did not understand how much dosage was needed and they were under medicating me with coumidin, henceforth I wound up having strokes caused by blood clots breaking off my mech valve. Though better from strokes now, it has been a long haul and my coumidin levels are closer to  where they are supposed to be, but I am stumbling around and not doing as well as should be. Doing blood test for ratios every two weeks to check on levels. Mini strokes occur every so often.
If I knew then what I know there would of definetly been a pig valve installed so there could be more normalcy to my life. Maybe some people can take coumidin without problems with clots occuring in there valves but I am taking 11 mg a day and still haveing problems. Those of you whom are taking the time to decide before operation are doing the right thing.
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Avatar universal
For all of you with new valves....can you tell me what your heart defect was? Mitral Valve Prolapse etc?? Also, how long you had it, what symptoms made the docs realize you needed new valves etc....I have had MVP for quite a few years and am trying to get info BEFORE I need the valve.

Thanx alot,
Mommof2
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Avatar universal
Thanks so much for all of your stories and information. I am a 40 year old male who needs to have my Mitral and Aortic valves replaced. I just found out a few days ago that my doctors want to do this in the near future. I am in good health with minimal symptoms but they want to do the procedure while i am still "healthy". I became concerned after looking into my valve choices. My doctor suggests the mechanical valve but after reading the stories about Coumadin and the side affects of that it scares the hell out of me. I am very active and want to stay that way. I don't want to have to worry about blood clots and strokes. Also i am a professional meatcutter and get cut from time to time and worry about bleeding. I don't want to have the surgery more than once but i want to live as normal life as i can have. I have read about the minimal invasive surgery. Do any of you have comments about that? Also what are the side affects if any of the natural valve? Thanks in advance for your help, Jed Davis...Maryland
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Avatar universal
Dan - It is amazing how close our situations are.  I am 38 and on Jan 7, 2004 go in for an Aortic Valve replacement and to replace a section of my ascending aorta which has developed an aneurysm(5.4cm).   The bi-cuspid valve is congentinal, so my dad had his replaced 8 years ago (St. Jude Mechanical) and 4 months ago had an aortic aneurysm fixed (now dacron tubing).

I am close to deciding for a tissue valve, as one of my hobbies is cycling ( Many MS150 rides, and a 7 day ride across texas).  Even though there are people around, many time you are remote and if you fall/bleed, a hospital may not be close (or anyone for that matter, particularly on training rides).

Keep us posted on your progress.  Although I know what Is going to happen, still a nervous time.

Jim in Houston
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Avatar universal
Hi Steve- sorry it took me a few days to get back to this site. I am very pleased with my decision to get the tissue valve. I feel a great peace of mind knowing that I made the right decision for me. My doctors were really pushing for the mechanical valve, the only advantage being that I wouldn't need a second surgery. Taking the coumadin, however, seemed to present more risks than undergoing a second surgery. I thought of it like this: If I undergo a second surgery, at least it will be in a controlled environment, being performed by professionals. If, however, I hurt myself in some remote area and bleed too much, that will defeat the purpose of getting the mechanical valve in the first place, which was to extend my life.
To answer your question about what to expect during surgery, I have to tell you that it wasn't at all as bad as I had built it up in my mind to be. Surprisingly, the majority of the pain seemed to be concentrated in my back and shoulders. I expected there to be constant, excruciating pain in my chest, but that was not the case. The only time my chest hurt badly was when I coughed, and that pain goes away after about a week. Right now, two weeks after surgery, I have no pain. There are two times after surgery when felt acute pain in the front of my body. One time was right after surgery, when they used my breathing tube to suction out mucus from my lungs before they removed the tube. That makes you cough, and it hurts for a second. The other time was when they removed my chest tube. That wasn't so much pain as it was uncomfortable pressure located in my upper stomach. They gave me morphine before that, so it wasn't that bad. I hope I answered some of your questions, and helped you become clearer as to which valve you'll choose. Get back to me!

Sincerely,
Dan
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Avatar universal
You, I, Steve, and Champion are in extremely similar situations. I'm glad I have a chance to talk to you and Steve before you go into surgery. My only wish is that I had had someone to talk to like this before I went in! You might want to take a look at the comment I just posted for Steve, because it addresses some of your concerns, such as valve choice and what to expect during surgery. My greatest worry about the surgery was that I would make a choice that I would later regret. Making a decision that I feel good about made everything easier, trust me.
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Avatar universal
It seems disturbing to me that your doctors did not completely inform you as to the advantages and disadvantages of both valve types. Taking coumadin is serious business, and I'm bewildered as to why they didn't completely fill you in as to what to expect. I'm very sorry to hear about the difficulties that you are experiencing, and I hope you'll get get back to me with more information, such as exactly what the doctors told you about coumadin, mechanical valves, and how exactly the local doctors managed to give you the wrong dosages. It sounds like you might have a case for malpractice.
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Avatar universal
Since I seem to have trouble remembering the correct diagnoses I will describe it in laymen's terms.  1.One of the three leaves on my aortic valve is almost non-existent, causing regurgitation.  2.  The opening past the valve is closed of by a membrane that should not be there. (The surgeon compared it to squeezing a garden hose, my heart sounds more like a gurgle than a beat)
I was actually diagnosed with MVP as a child and thought this is what I had all these years.  My surgeon told me this was a common mistake in the past.  
As far as symptoms I have none!  I saw a cardiologist when I was 18 and he wanted to see me every two years for a checkup.  I didn't see him again until 1995 when I needed clearance for back surgery ( Which I ended up not doing because I wanted to wait until after hunting season, and my pain nearly disappeared by the end of it).  He still said I should see him every two years to keep an eye on my condition.
Because I had no symptoms it was easy to ignore this however, and I didn't see him at all since then.  In August of this year I went to my doctor for another problem and thought I might as well schedule an appointment to see the cardiologist again.  Unfortunately he retired and I had to see a new guy who said it was time to fix this problem.  I was shocked to say the least and thought the guy was nuts!  He referred me to a surgeon and he agreed however.  He told me that my heart was enlarged to 53 centimeters (35 - 45 is normal) and that sooner or later it would give out. (He said maybe 5 - 15 years)  He said he would rather work on a healthy heart than a failing one, and so here I am.
It is very tempting to put this off, but all of this happened right after John Ritter's unfortunate death and my wife is scared to death I am going to keel over any minute!
Hope this helps!
Steve
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Avatar universal
Thanks for the reply Dan.  I have been reading your thread on the valvereplacement.com site over the past week. (Another valuable site for information - Mommof2 and others)
I am glad to hear you are doing well.
I have pretty much made the decision to go with a biological valve.  (I go for pre-op testing on December 29th and have to tell them then)  
I think what makes the decision so hard is that for every person that hates coumadin there is someone who says it is no big deal.  
My surgeon actually recommended the biological.  He says that surveys have been done that proved that people with biological valves are happier in the long run even with repeat surgeries.  The people at St. Jude's onevalveforlife.com would disagree.
Of course, they are selling mechanical valves.
I figure as young as I am, I should be able to handle another surgery with no problem, and can get the mechanical then, if I feel I made the wrong decision.
I will try to keep you up-to-date after the surgery.  I am trying to catch up at work, enjoy the holidays with my family and not think about the surgery.  
As it draws closer everyone is getting nervous.  My 10 year old daughter is giving me more hugs and kisses than ever lately, and drawing pictures of her and I together.  My 14 year old is good at hiding her feelings, and doesn't seem too nervous.  Of course she is extremely smart, (actually wants to be a doctor) so maybe she knows every thing will be fine!  
I want thank everyone who has participated in this conversation, it really is a lot of help.  I will try to check in as much as possible to let you know how things are going after the surgery and plan to register with the valvereplacement.com site also.
Good luck to all, and keep me up-to-date on your progress Dan and Jim.




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Avatar universal
Dan, Your concern is appreciated. First I was put in local hospital. Due to the local heart surgeons not being able to perform aortic root operation I waited in local hospital for two days until room for me was made in Stanford Hospital. My local heart doctor never mentioned anything about options for the valve replacement which was going to be done at same time. Arrived off plane and transported into Stanford late at night. Next morning drs assistants were explaining what was going to be done but no mention of options. As they were taking me into the operating room head Dr tells me that they were going to insert mechanical valve, I did not have any idea what he was talking about and a few seconds later was asleep anywise. After 3 months of recovery, went back to Stanford and had check up, they were upset with me because INRs were low and blamed me for not taking coumidin reguarly. After convincing them they told me to tell local drs to up the amount, which I did upon returning the next day. 2 months later I went back to work as roofing contractor. 3 months later had stroke, dragging leg and unable to talk at times. I had a call on my recorder when out and my heart drs nurse wanted me to take extra coumidin immeaditly..in research later found out that inr was low 2 weeks back when last tested and drs did not read and inform me until too late.
It is too late now for malpractice as this was 3 yrs ago. anywise I would admit to missing a dose once every week or so and I was working too hard. Believe would be difficult to win.
You had better know that my wife and I follow the Inrs ourselves and keep the correct levels. The stroke is hard to get over and do not want another.
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Avatar universal
Happy New Year's Eve.  

7 days from today, I will just be entering the surgery room.  The Holiday's have been great with family and friends (and low stress!).  This morning I am doing final wrap-up at work for the 5-6 weeks I will be out.  I plan to talk to the Surgeon on Jan. 2.  After much readying, surfing, discussion and prayer, I have decided on a tissue valve.   This discussion has been most helpful.  

I feel I am in great hands here in Houston.   While the next 7 days will be long (i.e. waiting), I look forward to getting the first 2 months of 2004 behind me and returning to a more "normal" life.

Regards
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Avatar universal
If I only knew then what I know now!! (1) When I had my first open heart surgery for severe mitral valve leakage due to taking Redux, I would have opted for a replacement instead of a repair. 6 months later I ended up with severe leakage again from the mitral valve and cardiomyopathy and congestive heart failure. My EF was at 20% and my cardiologist refused at that time to allow me to have the mitral valve replaced. He said my heart was way too weak and I probably couldnt have made it off the table!Well my heart got better but my symtoms remained so my cardiologist sent me to Duke where they determined I needed replacement right away. I had my valve replaced by a wonderful cardiac surgeon. (2) I wish I had opted for a biological valve instead of letting them talk me into a mechanical valve. I had this surgery 1-6-03 and since then I've had so many bleeding issues while taking Coumadin! I had to have an ovary and cyst removed in August due to excessive bleeding and now will have my other ovary removed along with other cysts that keep returning and causing so much pain. I bleed from so many parts of my body its unreal! I would never advise anyone else to go with a mechanical valve because of the Coumadin issue. For anyone out there that needs the surgery, think long and hard about QUALITY OF LIFE before making these decissions that will alter your lifestyle. I was very healthy until I took Redux and now Im taking 13 different meds a day and have all kinds of heart problems. I've been on social security disablity for 2 years now and Im only 43. Good luck to all my fellow friends in heart...
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Hi Everyone,

I have congenital VSD and was diagnosed with moderate AI at age 18 (I'm 43 now). The VSD is causing one of the aortic valve flaps to prolapse causing regurgatation. I have led a normal life until I was diagnosed with endocarditis about 3 months ago (after a long bout of bronchitis). After 7 weeks of IV Rocephin 2GM daily the endocarditis has cleared up. I just had a follow up with a cardiologist and he has recommended repairing the VSD and replacing my aortic valve in the very near future due to the risk of recurrent endocarditis. So I am going through the same decision process with which valve to choose. When I had the consult with the CV surgeon he recommended the St. Jude mechanical valve. I explained my reluctance with Coumadin (I'm in the pharmacy field) and he said that there are some new anticoagulants without the drawbacks of Coumadin that are now in clinical trials. I did some research and found that there is a new drug called Exanta manufactured by AstraZeneca which has already been approved in France, has been applied for approval in the rest of Europe, and is expected to be applied for approval in the US in the next year. This drug does not require monitoring for levels or diet restrictions and appears to be more effective than Coumadin. Due to my age, if I know this drug will be available soon as a safer alternative to Coumadin I will choose the mechanical valve. If not, I'm leaning towards a stentless biological valve. My question is has anyone heard of this drug, and will it be approved for use for anticoagulant use for aortic valve replacement (it looked like the trials were all on patients to prevent venous thrombosis in orthopedic knee and hip replacement surgeries). Also, does anyone have any comments on the homograph or Ross procedure as alternatives to bio or mechanical valve replacement.

Thanks
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Avatar universal
Today I am 10 days post-op, and feel great!   I am walking 15 minutes 4X a day, and will up that in the next day or so.  

Regarding my valve, as I was waking up from the operation, I was trying to figure out what that "ticking" sound in my left ear was.   The surgeon came by about an hour later to let me know that they had to switch their plan mid-operation (original plan was tissue).  Ultimately the size of my valve opening was 2.9cm, so they had to go to a St. Jude Mechanical (I understand the largest St. Jude they make is a 3.1cm).   In addition, the calicum buildup/deposits were much worse than thought...in fact, they had to pick calcium bits out of my heart.    Although I wanted a tissue, for all the reasons that have been debated here and elsewhere, I am OK with what they had to do.  I totally trust the surgeon and his team that they made the correct decision.

Overall, surgery was 4.5 hours, and a real pain in the back for the first 2 days until I got up walking.   I had no idea how much my back and lower back would hurt just laying around in ICU.

But, as I said in the beginning of my message, I feel great and am so glad to be on the recovery side of the operation.   I will remember January 7, 2004 for the rest of my life.

Regards

JIM
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Avatar universal
Hi, My name is Mike Tilot, I'm from Green Bay, WI. and I am an active 43yr old male who like the rest of you, need my valve replaced and have to decided on what type. I have bicusbid aortic stenois, at .9cm2 and 38mm with calcium build up. Found out Sept 4 2003 and have been trying to do as much research as i can. Has anyone had the newer style mechanical valve called the On-X valve from MCRI installed? They says it has mechanical upgrades to the St Jude valve. ie pure carbon, better blood flow, quieter. I also, all things being equal, do not want to be dependant on blood thinners the rest of my natural life. But time is running out and I need to decide soon so i can schedule the "event" hopefully by 1st of 2nd week of Feb. So any feedback would be great...Thanks...
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Avatar universal
I had valve surgury in 1973 and it was supposed to last only 10 years, in 2001 I had to have it done again this time they used a mechanical valve.  I am very happy I got a mechanical one as I would never go through the surgury again, the first one I was only 21 and healed very fast, the second one was alot harder and I will never do it again.  I take coumidin it is a pain but it has not stopped me from anytging I want to do. I can rollerblade and if I a cut it bleeds but my coumidin level is correct it stops right away.
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Avatar universal
Hello, Jim. I am glad your operation went well and you're doing great!

What was that made your doctors decide to go with the Mechanical valve? You mention something about the size of your valve opening. I don't know too much about the differences between the the biological and Mech valves besides what it has been posted in this forum, but it sounds like they are made of different sizes?

Thanks in advance, and hope you keep progessing steadily in your recuperation process!

Best wishes,

Michael
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Avatar universal
Mike- I was wondering if you had recievedanymore info on the On-X valve.  I, too, have to make a decision, and that was recommended to me by a very good surgeo here in LA.  But another surgeon wants to do the Ross Procedure for me.  I am so very confused, and have to have the surgery within a few weeks.  I hope you have some info to share.  Anyone???
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I
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I am scheduled for the Ross procedure on March 3.  I am very glad to have a qualified surgeon to do it.  My problem is deciding on the back-up plan in case the pulmonary valve isn't good enough!  I am so afraid of having to deal with coumadin for the rest of my life, but going through another surgery in 10- 15 years sounds prety bad, too. I am a very fit 46 year old dance teacher, with a wonderful 5 year old son.  Ideally, the Ross will be fine, but there is a 5% chance....  I am agonizing over this.  Input anyone?
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