Paul: I am 59 with bicuspid aortic valve and subsequent stenosis. I am considering a Ross with Dr. Paul Stelzer at Mount Sinai in New York. Prior to this ...Read more
Paul: I am 59 with bicuspid aortic valve and subsequent stenosis. I am considering a Ross with Dr. Paul Stelzer at Mount Sinai in New York. Prior to this consideration-redirect; I was scheduled to have a standard mechanical or tissue valve installed at Cleveland Clinic. Question(s): where did you have your Ross done; and have they worked out the bugs in the procedure since 2001? I am thinking of you and thank you for your willingness to inspire others.
Paul Wells Tough decision. I was 45 at the time. I was sold on the Ross because I was told it would be the only ... Read more
Paul Wells Tough decision. I was 45 at the time. I was sold on the Ross because I was told it would be the only surgery and no blood thinners.
The tissue valve implanted in the pulmonic position stenosed noticeable in just a few years. Newer valve types make claims to last longer but no guarantee. My pulmonic and those of people I know we're replaced at about 10 years.
The new aortic (old pulmonic) valve is said to revasculerize. But sometimes not so much. Many times it is replaced withen twenty years.
The new aortic valve is not recognize by the body as foreign, so it does not stenose as quickly.
Replacing 2 valves means more scar tissue and 2 valves that if not placed correctly may leak.
If I could do it over at age 45. I would go mechanical and take the Coumadin. I had my procedure local in KY.
For a single tissue valve look at the manufacturer web site some say things like. good hemodynamtics for up to 12 years.
So far two open hearts and expecting a third.
The enlarged chambers are here to stay. The previous pulmonic stenosis means a downsized pulmonic valve forever . I personally regret messing with my native working pulmonic valve, it may need to be explanted. Seems a waste to toss it in the trash when it could still be in its native position working better than than the 2 valves so far that replaced it.
You are 59. TAVR procedures are starting to be approved for intermediate risk patients. These constructed valves may not last as long but they can be placed minimaly invasive, and when the time comes can be replaced "valve in valve ". I would like to stay away from the perfusion machine. Search - post perfusion syndrome and, Pump head.
Lots to think about
KEVIN RYAN Thanks, Paul, for your excellent feedback! This is the issue with the real world....wait long enough ... Read more
KEVIN RYAN Thanks, Paul, for your excellent feedback! This is the issue with the real world....wait long enough and the experts/technology will improve everything. Our issues today will someday be a non-issue. Dr. Stelzer has done over 640 Ross procedures...but admits that the learning curve was steep in the beginning and many of his colleagues had early failures to the point of giving up on the procedure altogether.
My biggest fear is what you so aptly verbalized: If I could do it over...I'd do it differently. I bet we could find patients who had either tissue or mechanical who second guess their decision, as well.
I would seriously consider looking at the Cleveland Clinic in your situation...#1 cardiovascular surgery for the past 20 years! Some of their guys actually specialize in re-ops.
Yeh, pumphead syndrome is real...and yet another concern. I'd just as soon deny that I have any problems and go back to my youth... naivety has it's place :-) All the best, my friend.
Rita Savelis Thank you two for your very honest informative posts.
It is so hard to know whether one would do it ... Read more
Rita Savelis Thank you two for your very honest informative posts.
It is so hard to know whether one would do it differently as we can never know what the other alternative outcome might have been. But that question/feeling is always there. There are many ways to proceed. Is there any "right" decision? I wish I were more certain.
I hear exactly what you are saying.
Ultimately I wish we all didn't have to make these decisions, but we do what we can, and we take the next steps.
Take care.
August 14, 2016
Hello, Paul . . . . It looks like biking gets you around the corners. Our son just completed the Leadville 100 (Leadville, Colorado. ...Read more
August 14, 2016
Hello, Paul . . . . It looks like biking gets you around the corners. Our son just completed the Leadville 100 (Leadville, Colorado. It is a 100 mile mountain bike ride, starting in Leadville (10,150 feet elevation ) . The event ends in Leadville, too. During the 100 mile ride, one has an elevation gain of about 2500 feet throughout the race . . . not all on one mountain. Rusty is 49 years old and did the ride last year in 9 hours, 35 minutes. He had less time to train and did the ride yesterday in 9 hours, 53 minutes. VERY RESPECTFUL TIMES.
Paul, I am 75. When I was 46 I had my mitral valve replaced with a St. Jude's mechanical valve. I have been on coumadin for 29 years, and I rarely think about it. I would rather have my St. Jude valve than have dealt with many more heart surgeries to keep replacing tissue valves.
In mid April, my aortic valve was diagnosed as: severe aortic stenosis. I needed to have it replaced. On June 16, two months ago, I had my aortic valve replaced with an ATS AP mechanical valve. My triscupid valve was repaired at the same time as it had a leak. I recovered so well. I was out fly fishing with my husband after 5 weeks. I ride my bike and hike.
I have a little device so I can check my INR at home and call in my results. I do not find it a nuisance, and I rarely pay much attention to my diet other than I eat healthy and avoid most rich foods. I am 5'7" and weigh about 120. I should get up to 125.
My heart problems are a result of rheumatic heart disease. I had rheumatic fever when I was 16, a junior in high school. Hmmmm . . . . that caused me to stumble a little. I am, though, a graduate of CSU (Colorado State University) and I have my master's from CU (University of Colorado . Boulder).
Please feel free to write me and ask any questions. I had my surgery done at the Cardiac Center . St. Joseph Hospital . Denver, Colorado.
bjspinney@gmail.com Judy Spinney
Paul Wells Judy ,thanks for your note. I did not have the information I would have like to had before my first s ... Read more
Paul Wells Judy ,thanks for your note. I did not have the information I would have like to had before my first surgery ,and not much time. I know more now but what's done can't be changed, and such I have Rollercoaster health and more valve replacements.
KEVIN RYAN Paul: I am about your age and facing aortic valve replacement due to a bicuspid aortic valve and sub ... Read more
KEVIN RYAN Paul: I am about your age and facing aortic valve replacement due to a bicuspid aortic valve and subsequent aortic stenosis. Until your story, I was considering the Ross. I have read that the Ross has been refined a little to include supporting the aorta with dacron; but your experience with a failing pulmonic valve is of great concern. I need to ask where you had your Ross done ( I am looking at Dr. Paul Stelzer at Mount Sinai in New York); and do you have any hindsight pearls of wisdom to someone faced with aortic valve surgery. I am hopeful for you....there are a lot of experts now since the early days of 2001/2013 that can address your situation. Have you looked at Cleveland Clinic? Thanks.
The tissue valve implanted in the pulmonic position stenosed noticeable in just a few years. Newer valve types make claims to last longer but no guarantee. My pulmonic and those of people I know we're replaced at about 10 years.
The new aortic (old pulmonic) valve is said to revasculerize. But sometimes not so much. Many times it is replaced withen twenty years.
The new aortic valve is not recognize by the body as foreign, so it does not stenose as quickly.
Replacing 2 valves means more scar tissue and 2 valves that if not placed correctly may leak.
If I could do it over at age 45. I would go mechanical and take the Coumadin. I had my procedure local in KY.
For a single tissue valve look at the manufacturer web site some say things like. good hemodynamtics for up to 12 years.
So far two open hearts and expecting a third.
The enlarged chambers are here to stay. The previous pulmonic stenosis means a downsized pulmonic valve forever . I personally regret messing with my native working pulmonic valve, it may need to be explanted. Seems a waste to toss it in the trash when it could still be in its native position working better than than the 2 valves so far that replaced it.
You are 59. TAVR procedures are starting to be approved for intermediate risk patients. These constructed valves may not last as long but they can be placed minimaly invasive, and when the time comes can be replaced "valve in valve ". I would like to stay away from the perfusion machine. Search - post perfusion syndrome and, Pump head.
Lots to think about
My biggest fear is what you so aptly verbalized: If I could do it over...I'd do it differently. I bet we could find patients who had either tissue or mechanical who second guess their decision, as well.
I would seriously consider looking at the Cleveland Clinic in your situation...#1 cardiovascular surgery for the past 20 years! Some of their guys actually specialize in re-ops.
Yeh, pumphead syndrome is real...and yet another concern. I'd just as soon deny that I have any problems and go back to my youth... naivety has it's place :-) All the best, my friend.
It is so hard to know whether one would do it ... Read more
It is so hard to know whether one would do it differently as we can never know what the other alternative outcome might have been. But that question/feeling is always there. There are many ways to proceed. Is there any "right" decision? I wish I were more certain.
I hear exactly what you are saying.
Ultimately I wish we all didn't have to make these decisions, but we do what we can, and we take the next steps.
Take care.