WayneGM
Well-known member
Welcome to the community. Glad you found us. I can't help you with valve selection as I had a repair, but just wanted to say "hi". 
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EireCara
Well-known member
*Hi Carloine, I dont have any info to offer you, but just wanted to 'welcome' you to the site. Best Wishes.
To Carolyn2007
My diagnosis also was "severe aortic stenosis" probably due to misdiangosed rheumatic fever as a child. I have had the same mechanical valve (starr-edwards) since 1967 and I continue to do very well. I have never had ANY restrictions on my activity or lifestyle. My doctors told me, before the surgery, that the valve had a design life of 50 years and its beginning to look like their estimate of valve life was accurate. One of my docs recently told me that I would eventually die from something, but it probably would not be my heart valve. Warfarin therapy is not difficuly to get used to, but you must follow a good regimen once you start warfarin.
I believe that the important decision is to have corrective surgery done BEFORE further damage is done to the heart and/or other related body parts. Both "mechanical" or "tissue" valves have pros and cons. Either will work so long as they are implenated while you are otherwise healthy.
My diagnosis also was "severe aortic stenosis" probably due to misdiangosed rheumatic fever as a child. I have had the same mechanical valve (starr-edwards) since 1967 and I continue to do very well. I have never had ANY restrictions on my activity or lifestyle. My doctors told me, before the surgery, that the valve had a design life of 50 years and its beginning to look like their estimate of valve life was accurate. One of my docs recently told me that I would eventually die from something, but it probably would not be my heart valve. Warfarin therapy is not difficuly to get used to, but you must follow a good regimen once you start warfarin.
I believe that the important decision is to have corrective surgery done BEFORE further damage is done to the heart and/or other related body parts. Both "mechanical" or "tissue" valves have pros and cons. Either will work so long as they are implenated while you are otherwise healthy.
ALCapshaw2
Well-known member
Welcome aboard Caroline !
When it comes to Mechanical Valves, Yes, they are designed to last WAY longer than anyone expected lifetine (as long as there are no extenuating circumstances such as tissue growth into the valve area, etc.)
I am convinced the relatively new (10 years, 50,000 units implanted) ON-X Valves offer significant advantages over ALL the other Mechanical Valves currently in use. See www.onxvalves.com or contact Catheran Burnette at 888.339.8000 ext 265. She sent me an extensive information package outlining all the details and advantages of their valve.
BTW, the FDA has sanctioned studies in Aspirin ONLY anticoagulation (Low Risk Aortic Valve Patients) and Reduced Anticoagulation (moderate risk patients). Even If these studies don't pan out, the patient benefits from LOWER potential for Clot Formation than with other valves, and that benefit can start as soon as you receive your new valve.
FWIW, due to extenuating circumstances (Radiation Damage) my surgeon implanted a St. Jude Mechanical valve in my Aortic position rather than the Bovine Pericardial Tissue Valve I had requested. I'm not very familiar with the improved tissue valves, either Bovine or Porcine.
'AL Capshaw' (requested an On-X valve for my upcoming Mitral Valve Replacement)
When it comes to Mechanical Valves, Yes, they are designed to last WAY longer than anyone expected lifetine (as long as there are no extenuating circumstances such as tissue growth into the valve area, etc.)
I am convinced the relatively new (10 years, 50,000 units implanted) ON-X Valves offer significant advantages over ALL the other Mechanical Valves currently in use. See www.onxvalves.com or contact Catheran Burnette at 888.339.8000 ext 265. She sent me an extensive information package outlining all the details and advantages of their valve.
BTW, the FDA has sanctioned studies in Aspirin ONLY anticoagulation (Low Risk Aortic Valve Patients) and Reduced Anticoagulation (moderate risk patients). Even If these studies don't pan out, the patient benefits from LOWER potential for Clot Formation than with other valves, and that benefit can start as soon as you receive your new valve.
FWIW, due to extenuating circumstances (Radiation Damage) my surgeon implanted a St. Jude Mechanical valve in my Aortic position rather than the Bovine Pericardial Tissue Valve I had requested. I'm not very familiar with the improved tissue valves, either Bovine or Porcine.
'AL Capshaw' (requested an On-X valve for my upcoming Mitral Valve Replacement)
twinmaker
Well-known member
Welcome to the site, Caroline! Glad you found us. I might as well put in my two cents. I am 54 years old and had a mitral valve repair at age 22. Then we had our three children and at age 29 I had my valve replaced with a St. Jude mechanical. I'll do the math for you...the same valve has been going strong for almost 26 years. And I've been on Coumadin for that long also. My children were ages 5 and 3 year old twins when my valve was replaced. My husband traveled quite a bit with his job so I was home alone with three young ones for much of the time. I played tennis (and still do), bike ride, snow ski, cut our lawn (and we don't have a self propelled mower) and do just about everything I want to do. My surgeon suggested a mechincal at age 29 because he said that would give me the best chance at not having to have another OHS. So far, he has been right on the money! Of course, I'm not up to date on all the new advances that have come along since 1981, so I can't speak to those. Just wanted you to know that there are quite a few of us that have had mechanicals and don't PLAN on any more heart surgeries. The St. Jude mechanical has changed very little design wise since mine was put in. I guess it's one of the "tried and true". Good luck with your research and decisions. I'm sure whatever you decide will be the right decision. We're glad to have you as part of the family. LINDA
Of course, I'm not up to date on all the new advances that have come along since 1981, so I can't speak to those. Just wanted you to know that there are quite a few of us that have had mechanicals and don't PLAN on any more heart surgeries. The St. Jude mechanical has changed very little design wise since mine was put in. I guess it's one of the "tried and true". Good luck with your research and decisions. I'm sure whatever you decide will be the right decision. We're glad to have you as part of the family. LINDAmarciemarine
Well-known member
Welcome Caroline! I see that you're from Central NY. I had a double valve replacement recently in Utica at St. Elizabeth's and I can highly recommend it if you live near there. I also hear that Syracuse has some good hositals that people have great things to say about. I have mechanical valves and am pleased with them. Good Luck to you! Marcie
C
Caroline2007
Thank you everyone...! Still absorbing everything! KarenS - I look forward to reading about your recovery (and any advice you can give me on keeping the household under control!!!!). Marciemarine - I will most likely be at University, although I am going to explore the Ross procedure and see where that leads!
Mike
Well-known member
one other thought from Mike
one other thought from Mike
Hi Caroline,
As you know I had my mvr and avr at University Hospital in Syracuse and we go to the same cardiology practice, and that I had a positive and successful experience at both. However, if I had it to do over again I would seek a second opinion, not because the first one was faulty in any way, but just for the peace of mind of knowing that I was following the better course of action for me. I suppose I was blissfully ignorant of all the issues that would be facing me, I was very sick with chf, etc. and just wanted to get it over with. You're asking good questions, just make sure you get the answers you need. I don't think I even knew the questions to ask! I understand now that you have to do your homework.
I know of an individual who had his repair done at St. Joseph's in Syracuse and went to another cardiology practice that ours; he also had a good outcome and was pleased with the care he received. You might wish to contact him with questions as well. Let me know and I'll help you two get together.
Mike
one other thought from Mike
Hi Caroline,
As you know I had my mvr and avr at University Hospital in Syracuse and we go to the same cardiology practice, and that I had a positive and successful experience at both. However, if I had it to do over again I would seek a second opinion, not because the first one was faulty in any way, but just for the peace of mind of knowing that I was following the better course of action for me. I suppose I was blissfully ignorant of all the issues that would be facing me, I was very sick with chf, etc. and just wanted to get it over with. You're asking good questions, just make sure you get the answers you need. I don't think I even knew the questions to ask! I understand now that you have to do your homework.
I know of an individual who had his repair done at St. Joseph's in Syracuse and went to another cardiology practice that ours; he also had a good outcome and was pleased with the care he received. You might wish to contact him with questions as well. Let me know and I'll help you two get together.
Mike
K
KMS
Caroline -
Again, welcome to the forum. It's good to see you asking such good questions...that's the only way to make a decision with which you're completely comfortable. And I, like Karen, could not NOT respond to your post.
I'm 43 years old and 10 months post-op. I was in pretty good shape prior to surgery -- I'm a runner and an occasional aeorobics class participant -- and didn't really have any symptoms. While not stenotic, I was diagnosed last March 28th and had my valve replacement in May (my aneurysm really forced the issue). I found this site during the month prior to my surgery and found it to be absolutely invaluable. I researched my valve options (and spent countless hours on many sites during those weeks leading up to surgery) and I found that the tissue option felt right for me. I chose it mainly because I was not ready to commit to Coumadin; the only medication I take is an aspirin each day.
I've had a very smooth recovery...I walked my first mile a week after surgery and never looked back. I was back to running after 3 months and was really pretty much back to 100% after 4 months. I think a key to my recovery was staying as active as I could right up to the day before my surgery (I'd dialed back my workouts and instead walked a couple of miles almost every day).
Yes, I'll have another procedure sometime in my late 50's; I clearly understood what selecting a tissue valve meant. And I would do it again in a heartbeat (pun slightly intended)...I've been very, very happy with my choice.
Best regards as you continue your journey,
Kristine
Again, welcome to the forum. It's good to see you asking such good questions...that's the only way to make a decision with which you're completely comfortable. And I, like Karen, could not NOT respond to your post.
I'm 43 years old and 10 months post-op. I was in pretty good shape prior to surgery -- I'm a runner and an occasional aeorobics class participant -- and didn't really have any symptoms. While not stenotic, I was diagnosed last March 28th and had my valve replacement in May (my aneurysm really forced the issue). I found this site during the month prior to my surgery and found it to be absolutely invaluable. I researched my valve options (and spent countless hours on many sites during those weeks leading up to surgery) and I found that the tissue option felt right for me. I chose it mainly because I was not ready to commit to Coumadin; the only medication I take is an aspirin each day.
I've had a very smooth recovery...I walked my first mile a week after surgery and never looked back. I was back to running after 3 months and was really pretty much back to 100% after 4 months. I think a key to my recovery was staying as active as I could right up to the day before my surgery (I'd dialed back my workouts and instead walked a couple of miles almost every day).
Yes, I'll have another procedure sometime in my late 50's; I clearly understood what selecting a tissue valve meant. And I would do it again in a heartbeat (pun slightly intended)...I've been very, very happy with my choice.
Best regards as you continue your journey,
Kristine
marciemarine
Well-known member
I hear that University Hospital in Syracuse has an excellent reputation. Time Price recently had his procedure done is Syracuse - I'm not sure which hospital and I don't know if they do the Ross procedure there. Marcie
Welcome Caroline
Welcome Caroline
Sorry it took me so long to post...going back to work post op keeps me busy! I am 8 weeks post op with a bovine AVR done at St. Joe's. I cannot say enough about how well everything went. Of course, University is a fine hospital also, so I don't think you can go wrong either way. You can check out all the surgeons and hospital statistics on line. That helped me make my desicison on who and where to have surgery.
http://www.health.state.ny.us/diseases/cardiovascular/heart_disease/docs/cabg_2002-2004.pdf
Welcome Caroline
Sorry it took me so long to post...going back to work post op keeps me busy! I am 8 weeks post op with a bovine AVR done at St. Joe's. I cannot say enough about how well everything went. Of course, University is a fine hospital also, so I don't think you can go wrong either way. You can check out all the surgeons and hospital statistics on line. That helped me make my desicison on who and where to have surgery.
http://www.health.state.ny.us/diseases/cardiovascular/heart_disease/docs/cabg_2002-2004.pdf
K
KarenS
Hi again Caroline,
Sorry it has taken me so long to post again. I just had my follow-up visit with my surgeon yesterday and wanted to have that visit behind me as well as some recovery time under my belt to write about. I plan on posting my recovery to date in the Post Surgery Thread and will include the steps I took in preparing my family/household for the surgery there is well. I know I bounced back and forth between the Pre and Post Surgery threads prior to my surgery as I needed to know what to expect on both ends in order to feel prepared.
I will give you my (hopefully short) story regarding valve selection here. I, like some other members have posted, had a gut feeling regarding the right valve for me once I came to terms with the fact that I definitely was going to have to have this surgery. From what I knew in the beginning stages of my research, I felt that tissue was the right choice for me personnally. I spoke with one cardiologist, whose opinion I highly valued, and he agreed with me and recommended a stentless tissue valve. Again, this was early on in the decision phase and I researched as much as I could about all valve type (a lot of info. found right here on vr.com). My own cardiologist recommended mechanical as did my surgeon the first time I met with him. My surgeon did say he could do any valve I chose and I met with him on three separate dates to discuss the surgery and valve choice. I trusted him to be a great surgeon, but needed to be sure that we were on the same page regarding valve choice. I certainly did not want to tell him to "install" a valve he was not comfortable with. He did say to me that of the tissue choices, he felt that the stentless type was the best choice for my body type, in his opinion ( I am petite...5 ft, small framed). I just kept asking questions and knew I had to go into the surgery feeling confident.
So, you need to find someone you are comfortable with who has done this surgery successfully many, many times. Look around, like Marguerite adviced and go to the consults with your questions in hand. Good luck and keep us posted.
Karen
Sorry it has taken me so long to post again. I just had my follow-up visit with my surgeon yesterday and wanted to have that visit behind me as well as some recovery time under my belt to write about. I plan on posting my recovery to date in the Post Surgery Thread and will include the steps I took in preparing my family/household for the surgery there is well. I know I bounced back and forth between the Pre and Post Surgery threads prior to my surgery as I needed to know what to expect on both ends in order to feel prepared.
I will give you my (hopefully short) story regarding valve selection here. I, like some other members have posted, had a gut feeling regarding the right valve for me once I came to terms with the fact that I definitely was going to have to have this surgery. From what I knew in the beginning stages of my research, I felt that tissue was the right choice for me personnally. I spoke with one cardiologist, whose opinion I highly valued, and he agreed with me and recommended a stentless tissue valve. Again, this was early on in the decision phase and I researched as much as I could about all valve type (a lot of info. found right here on vr.com). My own cardiologist recommended mechanical as did my surgeon the first time I met with him. My surgeon did say he could do any valve I chose and I met with him on three separate dates to discuss the surgery and valve choice. I trusted him to be a great surgeon, but needed to be sure that we were on the same page regarding valve choice. I certainly did not want to tell him to "install" a valve he was not comfortable with. He did say to me that of the tissue choices, he felt that the stentless type was the best choice for my body type, in his opinion ( I am petite...5 ft, small framed). I just kept asking questions and knew I had to go into the surgery feeling confident.
So, you need to find someone you are comfortable with who has done this surgery successfully many, many times. Look around, like Marguerite adviced and go to the consults with your questions in hand. Good luck and keep us posted.
Karen
A
ann47
Caroline,
Another lurker comming out for the first time.
I had OHS to repair a bicuspid aortic valve January 9th 2007. I am 47 and choose a porcine valve. It worked for me because I wanted to be as medicine free as possible. I was out of the hospital in 4 days, no pain meds at home, and only take a baby aspirin a day. Surgery isn't easy and there are no guarantees. The best advise on valve choice for me was "the only bad choice is no choice". Good luck to you and trust that your choice is best for you.
Ann
Another lurker comming out for the first time.
I had OHS to repair a bicuspid aortic valve January 9th 2007. I am 47 and choose a porcine valve. It worked for me because I wanted to be as medicine free as possible. I was out of the hospital in 4 days, no pain meds at home, and only take a baby aspirin a day. Surgery isn't easy and there are no guarantees. The best advise on valve choice for me was "the only bad choice is no choice". Good luck to you and trust that your choice is best for you.
Ann
S
Susan BAV
Welcome to the site, Ann! Glad your surgery went well. I'm amazed you could go so long without posting from when you joined the site. Post again and take care.
C
Caroline2007
Thanks everyone!
Thanks everyone!
Welcome Ann! I am glad I could get you out of hiding!
Thanks Mike ,Tom, and MarciMarine for you information here in CNY... this is the only place I have found people with similiar situations in the area.
KMS and Karen - it seems like I have a lot in common with you both. Karen - I too am on the petite size (5' 1") and was wondering if there would be considerations in valves. So it seems that there are...
I will keep on looking at all the information out there. I want to be as confident in my decision as everyone is on this site.
Thanks everyone!
Welcome Ann! I am glad I could get you out of hiding!
Thanks Mike ,Tom, and MarciMarine for you information here in CNY... this is the only place I have found people with similiar situations in the area.
KMS and Karen - it seems like I have a lot in common with you both. Karen - I too am on the petite size (5' 1") and was wondering if there would be considerations in valves. So it seems that there are...
I will keep on looking at all the information out there. I want to be as confident in my decision as everyone is on this site.
K
KarenS
Hi again Caroline,
As a follow-up to my last post to you-When I met with another great, well-known surgeon in my area 2 years ago his recommendation was "you are a small woman, I would recommend a mechanical valve when the time comes". So go figure. I think the point is as someone pointed out earlier, valves come in all sizes and I don't think we are limited in our choice due to our petite frames. Just continue to research the heck out of it, as I am sure you are, and bring all your questions to the surgeons you meet with. I think your visit is coming up soon....good luck and things will come together as you go.
I have been thinking about you a lot lately and I am working on getting you my recovery info. and steps I took to organize my kids/house before surgery.
I am long winded and it takes a while for me to summarize-who has time to read a novel nowadays, right??
I'll be in touch!!
Karen
As a follow-up to my last post to you-When I met with another great, well-known surgeon in my area 2 years ago his recommendation was "you are a small woman, I would recommend a mechanical valve when the time comes". So go figure. I think the point is as someone pointed out earlier, valves come in all sizes and I don't think we are limited in our choice due to our petite frames. Just continue to research the heck out of it, as I am sure you are, and bring all your questions to the surgeons you meet with. I think your visit is coming up soon....good luck and things will come together as you go.
I have been thinking about you a lot lately and I am working on getting you my recovery info. and steps I took to organize my kids/house before surgery.
I am long winded and it takes a while for me to summarize-who has time to read a novel nowadays, right??
I'll be in touch!!
Karen
S
SteveHWms
I am 41, and I was dead set on getting a biological valve. I was NOT going to talked into taking Coumadin. Then a surgeon commented to me that, "only in the United States would you find anyone who would opt for two open heart surgeries over one." That made me start thinking. After having one open heart surgery, I am happy with my decision. I would hate to have a second one guaranteed in my future.
I also had a dilated ascending aorta, which increased the likelihood of problems with a "re-do" surgery if I had opted for a biological full root.
The best advice I got was that this is THE most important decision that you will ever make, and you don't get a "do over" if you change your mind, so get as much info as possible and be conservative. You can find a surgeon out there who will do just about anything, whether it is the best idea or not, and there are "fads" in OHS just like any other industry.
God bless you and welcome to the site.
I also had a dilated ascending aorta, which increased the likelihood of problems with a "re-do" surgery if I had opted for a biological full root.
The best advice I got was that this is THE most important decision that you will ever make, and you don't get a "do over" if you change your mind, so get as much info as possible and be conservative. You can find a surgeon out there who will do just about anything, whether it is the best idea or not, and there are "fads" in OHS just like any other industry.
God bless you and welcome to the site.
Ross
Well-known member
SteveHWms said:
Thank you Steve, I concur 100%.
HeartDawg
Well-known member
Be OVERLY CAUTIOUS
Be OVERLY CAUTIOUS
I agree with the poster who says that you need to be cautious .... especially once you feel at all symptomatic.
I had a cardiologist who NEVER followed up after an echocardiogram last summer. When I finally got somebody from his office to call me, the person simply said that I should see him again in six months.
I did wait the six months, but then went to another cardiologist. Both this cardiologist and the surgeon agreed that they would have recommended surgery six months ago ... and now (in January) we had reached a very critical point! Ugh! I had been (I thought) such a good patient, with the hopes of NOT reaching that point.
I have since seen the notes from the "old" cardiologist, and can't believe the difference between what I was told and what he wrote. He also wrote that I was not symptomatic at the time, but ... um ... how would he know? He never even met with me after the echo. He did meet with me a few months prior to the echo, and even then I said I thought I might be feeling symptomatic.
Thanks for letting me vent! Hope it is helpful to someone.
Be OVERLY CAUTIOUS
I agree with the poster who says that you need to be cautious .... especially once you feel at all symptomatic.
I had a cardiologist who NEVER followed up after an echocardiogram last summer. When I finally got somebody from his office to call me, the person simply said that I should see him again in six months.
I did wait the six months, but then went to another cardiologist. Both this cardiologist and the surgeon agreed that they would have recommended surgery six months ago ... and now (in January) we had reached a very critical point! Ugh! I had been (I thought) such a good patient, with the hopes of NOT reaching that point.
I have since seen the notes from the "old" cardiologist, and can't believe the difference between what I was told and what he wrote. He also wrote that I was not symptomatic at the time, but ... um ... how would he know? He never even met with me after the echo. He did meet with me a few months prior to the echo, and even then I said I thought I might be feeling symptomatic.
Thanks for letting me vent! Hope it is helpful to someone.
