vprnet
Well-known member
As we can see from this fantastic website, many of us have struggled with the dichotomy of choosing a mechanical or tissue valve. And for those of us with some time on our side I'm sure this forum will help everyone make the best choice for their situation. I learned so much from the members who have posted to this website that I would like to share my adventure in this new thread, or should I say what seems to be an abstract of a long thesis. Since this is a clinical trial involving a mechanical valve without Coumadin I thought this would be the best forum for it.
Last November (07) I was told that my regurgitating aortic valve was showing in echo it was time for intervention. After 15 years of going for echo's (I’m 54 now), I thought it would never be said. I rowed crew in HS and college, lifted weights to the point of passing out, and ran behind mowers in landscaping for 5 years. I thought my heart was indestructible. Needless to say, I never took very serious interest in my condition although I was told about a heart murmur when I was 18. After an MRI last December it was confirmed that I have a congenital bicuspid valve. Not feeling any serious symptoms and following the AHA guideline for these conditions I found out I’m a risk class 2b patient (2b or not 2b) I call it.
http://www.acc.org/qualityandscience/clinical/guidelines/valvular/Valvularpocketguide.pdf
After reading Adam Pick's book, consulting with 6 excellent surgeons, (Brown Morristown NJ, Petterson CCF, Stelzer Mt Siani NYC, Swistel, St Luke's NYC, Asgarian HUMC, and von Segesser CHUV Switzerland, and a second cardiologist opinion, I found that it was near impossible to find a simple majority of doctors with the same opinion for a condition like ours in the 20-65 years of age. They were all very informative, accessible and easy to speak with, and I understand excellent at their profession. Naturally surgeons tend to favor their specialty and experience where otherwise the clear choice would be a tissue valve if I were 65+. (By the way , lifting heavy weights is decidedly a no-no for BAV).
So I made an assessment of all the input I had gathered in reading and consultations and of my personal preferences since there is no perfect recommended solution. I came up with the following: I prefer not to have Coumadin more than I prefer not to have a second operation. I thought that left me only with repair or tissue options until I came across the FDA approved study on the ON-X valve. The study began in July 2006 and will likely not be completed until 2015.
http://www.onxlti.com/onxlti-hv-proact.html
The more I looked into it the more I liked what I read. Even though there is still the risk of having to be on Coumadin for life with this valve my feeling is it is no greater a risk than having to be on Coumadin with a tissue valve were afib can bring it into play anyway. This of course assumes the ON-X study pans out. For me that risk outweighs the thought of having to go for a second operation in the next 10 - 15 years, which from what I have gathered is a greater risk for any of the tissue (including Ross) and repair options for the BAV 20- 65 year old age group. So I signed up for the study, almost a year after starting this story.
http://clinicaltrials.gov/ct2/show/NCT00291525
Naturally the study itself is a risk, and I guess one's choice will be determined one’s own risk assessment of what risks we are more willing or less willing to take with any of the options before us. The good news for me was that my test to sensitivity to Plavix is positive, now I'm waiting on aspirin sensitivity test results. If that proves good I can look forward to the possibility of a life with an ON-X mechanical valve w/o Coumadin. If the sensitivity tests failed my fallback decision was valve repair at with an ON-X as backup since I was told that sensitivity to Plavix improves with age.
By the way, the AHA guideline recommends repair/sparing whenever possible, but the stats I've seen and from the discussions I've had the risk of needing reop after repair is no less than a tissue valve but the heart is preserved longer in its natural state and you have your own live tissue to help fight off infections. CFF is highly regarded in the field of valve repair/sparing.
http://my.clevelandclinic.org/heart/disorders/valve/aorticvalvesurgery.aspx
http://cardiacsurgery.ctsnetbooks.org/cgi/content/full/3/2008/935?ck=nck
http://www.umm.edu/heart/aortic_valve_preserv.htm
To all still pondering your decision and surgery options, and those who have made it and are on your way to recovery, all the best wishes.
vprnet
BAV patient
Planning surgery this year
Mechanical ON-X clinical trail for reduced anticoagulation (reduced or no Coumaden)
PS. I am not a medical professional or a doctor. My comments in this forum are my own opinion and are not intended to be given as medical or professional advise or a recommendation of any valve choice. Decisions that affect your health and wellbeing are ultimately yours and your doctors. vprnet
Last November (07) I was told that my regurgitating aortic valve was showing in echo it was time for intervention. After 15 years of going for echo's (I’m 54 now), I thought it would never be said. I rowed crew in HS and college, lifted weights to the point of passing out, and ran behind mowers in landscaping for 5 years. I thought my heart was indestructible. Needless to say, I never took very serious interest in my condition although I was told about a heart murmur when I was 18. After an MRI last December it was confirmed that I have a congenital bicuspid valve. Not feeling any serious symptoms and following the AHA guideline for these conditions I found out I’m a risk class 2b patient (2b or not 2b) I call it.
http://www.acc.org/qualityandscience/clinical/guidelines/valvular/Valvularpocketguide.pdf
After reading Adam Pick's book, consulting with 6 excellent surgeons, (Brown Morristown NJ, Petterson CCF, Stelzer Mt Siani NYC, Swistel, St Luke's NYC, Asgarian HUMC, and von Segesser CHUV Switzerland, and a second cardiologist opinion, I found that it was near impossible to find a simple majority of doctors with the same opinion for a condition like ours in the 20-65 years of age. They were all very informative, accessible and easy to speak with, and I understand excellent at their profession. Naturally surgeons tend to favor their specialty and experience where otherwise the clear choice would be a tissue valve if I were 65+. (By the way , lifting heavy weights is decidedly a no-no for BAV).
So I made an assessment of all the input I had gathered in reading and consultations and of my personal preferences since there is no perfect recommended solution. I came up with the following: I prefer not to have Coumadin more than I prefer not to have a second operation. I thought that left me only with repair or tissue options until I came across the FDA approved study on the ON-X valve. The study began in July 2006 and will likely not be completed until 2015.
http://www.onxlti.com/onxlti-hv-proact.html
The more I looked into it the more I liked what I read. Even though there is still the risk of having to be on Coumadin for life with this valve my feeling is it is no greater a risk than having to be on Coumadin with a tissue valve were afib can bring it into play anyway. This of course assumes the ON-X study pans out. For me that risk outweighs the thought of having to go for a second operation in the next 10 - 15 years, which from what I have gathered is a greater risk for any of the tissue (including Ross) and repair options for the BAV 20- 65 year old age group. So I signed up for the study, almost a year after starting this story.
http://clinicaltrials.gov/ct2/show/NCT00291525
Naturally the study itself is a risk, and I guess one's choice will be determined one’s own risk assessment of what risks we are more willing or less willing to take with any of the options before us. The good news for me was that my test to sensitivity to Plavix is positive, now I'm waiting on aspirin sensitivity test results. If that proves good I can look forward to the possibility of a life with an ON-X mechanical valve w/o Coumadin. If the sensitivity tests failed my fallback decision was valve repair at with an ON-X as backup since I was told that sensitivity to Plavix improves with age.
By the way, the AHA guideline recommends repair/sparing whenever possible, but the stats I've seen and from the discussions I've had the risk of needing reop after repair is no less than a tissue valve but the heart is preserved longer in its natural state and you have your own live tissue to help fight off infections. CFF is highly regarded in the field of valve repair/sparing.
http://my.clevelandclinic.org/heart/disorders/valve/aorticvalvesurgery.aspx
http://cardiacsurgery.ctsnetbooks.org/cgi/content/full/3/2008/935?ck=nck
http://www.umm.edu/heart/aortic_valve_preserv.htm
To all still pondering your decision and surgery options, and those who have made it and are on your way to recovery, all the best wishes.
vprnet
BAV patient
Planning surgery this year
Mechanical ON-X clinical trail for reduced anticoagulation (reduced or no Coumaden)
PS. I am not a medical professional or a doctor. My comments in this forum are my own opinion and are not intended to be given as medical or professional advise or a recommendation of any valve choice. Decisions that affect your health and wellbeing are ultimately yours and your doctors. vprnet
. If I were 31 again, I obviously would get the mechanical. The rumors about Warfarin are unfounded. It is a simple drug with (for me) NO side effects so long as I take it as prescribed and test routinely. As I age and other meds are added, I am having a little more trouble in keeping my INR in a stable range. For that reason, I would consider a tissue valve for me. Now, it apears there may be a third choice....
