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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.
I am responding to Scott's wife regarding the loud thumping noise her husband has experienced with a mechanical valve. I too had a St. Jude valve put inserted December of 2003. I first heard the clicking sound of the valve, but it turned in a matter of a few weeks into the "thumping" sound you described. The doctors have explained that it is normal, will not decrease with time, but that my brain will eventually tune the noise out. This last part, the brain tuning it out, has been true of the clicking sound of the valve and thus has greatly decreased. The thumping has not though and is not only sound, but physical, in that I can feel the heart beat much more pronounced in my chest and neck since the operation. The easiest way to describe it is that it is similar to the the sensation that which occurs after strenuous exercise, when your heart beats fast and furious and you can feel it and hear it. Only mine doesn't go away. To say the least it is mentally taxing. Is that what others with a mechanical valve has experienced? Does it go away or reduce with time? As like Scott's wife, I would appreciate anyone else whose has this experience to respond. Thanks.
I am responding to Scott's wife regarding the loud thumping noise her husband has experienced with a mechanical valve. I too had a St. Jude valve put inserted December of 2003. I first heard the clicking sound of the valve, but it turned in a matter of a few weeks into the "thumping" sound you described. The doctors have explained that it is normal, will not decrease with time, but that my brain will eventually tune the noise out. This last part, the brain tuning it out, has been true of the clicking sound of the valve and thus has greatly decreased. The thumping has not though and is not only sound, but physical, in that I can feel the heart beat much more pronounced in my chest and neck since the operation. The easiest way to describe it is that it is similar to the the sensation that which occurs after strenuous exercise, when your heart beats fast and furious and you can feel it and hear it. Only mine doesn't go away. To say the least it is mentally taxing. Is that what others with a mechanical valve has experienced? Does it go away or reduce with time? As like Scott's wife, I would appreciate anyone else whose has this experience to respond. Thanks.
Hello ...
I had an AVR operation in Aug of 2001 when I was 49. It was the very first operation in my life.
My wife and I debated on a tissue valve or the newest St. Jude valve. We decided on the St Jude valve as we didn't want to even think of having this surgery again even though it meant taking coumadin.
I have to say that I have had no problems at all in taking the coumadin and the new St Jude valve is extremely quite. My wife normally has to put her head on my chest to hear it. I have remained in excellent health and swim 12 miles a month.
I would recommend the St Jude valve to anyone. One heart surgery in a lifetime is more then enough!!!
Chip1
I had an AVR operation in Aug of 2001 when I was 49. It was the very first operation in my life.
My wife and I debated on a tissue valve or the newest St. Jude valve. We decided on the St Jude valve as we didn't want to even think of having this surgery again even though it meant taking coumadin.
I have to say that I have had no problems at all in taking the coumadin and the new St Jude valve is extremely quite. My wife normally has to put her head on my chest to hear it. I have remained in excellent health and swim 12 miles a month.
I would recommend the St Jude valve to anyone. One heart surgery in a lifetime is more then enough!!!
Chip1
Hi all...
I didn't have a choice when my aortic valve was replaced by the bental procedure in '98.
Coumadin has definatley become a life style rather just another maintance med. Given the chance and knowing what I know now,
I would have went with the tisue valve.
But the unforseen complications from my arotic disection caused some excess tisue that causes clotting and I would have ended up on coumidan any way. When my surgeon was approached by my cardio doc for his opinion of second surgery to correct this condition. His reply was"I wouldn't touch him again with a 10 foot pole."
..My point is: what if within the 10 to 15 years for some unforseen reason you are no longer a canidate for surgery and that valve needs to be replaced......?
P.S. we have all been givin a 2nd chance at life, go forth and enjoy it and help someone else less fortunate than ourselves along the way....jay
I didn't have a choice when my aortic valve was replaced by the bental procedure in '98.
Coumadin has definatley become a life style rather just another maintance med. Given the chance and knowing what I know now,
I would have went with the tisue valve.
But the unforseen complications from my arotic disection caused some excess tisue that causes clotting and I would have ended up on coumidan any way. When my surgeon was approached by my cardio doc for his opinion of second surgery to correct this condition. His reply was"I wouldn't touch him again with a 10 foot pole."
..My point is: what if within the 10 to 15 years for some unforseen reason you are no longer a canidate for surgery and that valve needs to be replaced......?
P.S. we have all been givin a 2nd chance at life, go forth and enjoy it and help someone else less fortunate than ourselves along the way....jay
The best of luck. Just weigh all of your options along with the pros and cons to fit your life style, after all it's your life, you should make your decision, not your doctor. Don
hi friend, many thanks for the info. it a long way from phoenix to nyc but it cold well be worth the trip. mel
Melt: You probably aren't a good candidate for the Ross Proceedure because of your age. This is due to the length of the operation, besides, you wouldn't be expected to need a replacement for a mechanical valve in 20-25 years. Good Luck.
Candi, you will do fine and it sounds like you
hello would someone tell me about the Ross procedure
hi candy. i am in a situation similiar to yours. i have to have the aortic valve replaced in the next few mo. i guess, because of my age the tissue valve will be my choice. i'm 77. i never heard of the ross procedure, what is it ? i wihs you the very best. melt
This is for bcb333 who asked about Exanta, but it's for everybody who's taking Coumadin, or will have to take this drug in the near future.
From this Sunday's local paper's magazine section:
<< ximelagatran (to be marketed as Exanta): Derived from amino acids, it inhibits the action of thrombin, a constituent of the blood that affects clotting. A considerable amount of research has shown that Exanta is at least as effective, possibly more so, as warfarin (Coumadin).
And this drug, unlike warfarin, uses a fixed dose without having to monitor coagulation. When Exanta becomes available (it's expected in the near future), you won't need to check your blood while taking it: It is not affected by food or other medication; and although it leaves you vulnerable to bleeding (after all, it is an anticoagulant), it is safe. Its introduction will emancipate most, if not all, users of warfarin. >>
Hope this helps.
Best luck to all.
Michael
From this Sunday's local paper's magazine section:
<< ximelagatran (to be marketed as Exanta): Derived from amino acids, it inhibits the action of thrombin, a constituent of the blood that affects clotting. A considerable amount of research has shown that Exanta is at least as effective, possibly more so, as warfarin (Coumadin).
And this drug, unlike warfarin, uses a fixed dose without having to monitor coagulation. When Exanta becomes available (it's expected in the near future), you won't need to check your blood while taking it: It is not affected by food or other medication; and although it leaves you vulnerable to bleeding (after all, it is an anticoagulant), it is safe. Its introduction will emancipate most, if not all, users of warfarin. >>
Hope this helps.
Best luck to all.
Michael
We discovered my husband had a bicuspid valve and a dilated aorta at 5 cm last summer. Within a couple of weeks of finding this all out his aorta dissected and landed us in the ER facing emergency surgery. We had already decided on a mechanical valve at our surgeon's recommendation with surgery scheduled approximately a week later. At 42, Scott now sports a St. Jude's mechanical valve. We are close to 5 months out now and recovery has been slow. Scott has had several incidents where the room will spin and he can
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?
I
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???
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
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
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.
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...
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
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
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
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
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...
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
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
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.
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.
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
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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