Ross
Well-known member
If we use the poll numbers, it's 1%. I think that is too low and I actually think my 10 to 12% may still be too high. Wish we had some clear published numbers for those that want those sort of things.
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If we use the poll numbers, it's 1%. I think that is too low and I actually think my 10 to 12% may still be too high. Wish we had some clear published numbers for those that want those sort of things.
ALCapshaw2
Well-known member
The statement about 50% of (Tissue) Valve recipients ending up on Coumadin anyway needs some clarification.
MY interpretation is that it refers to people who develop Atrial Fibrilation which is a common Heart Rhythm ailment in older people (age 60 and above).
A-Fib may also result from 'disturbances' to the Heart from Surgery which often clear up after a few months of recovery. It is more common following Mitral Valve Replacement since that valve is closer to the Sinus Node which controls the electrical behavior of the heart.
'AL Capshaw'
MY interpretation is that it refers to people who develop Atrial Fibrilation which is a common Heart Rhythm ailment in older people (age 60 and above).
A-Fib may also result from 'disturbances' to the Heart from Surgery which often clear up after a few months of recovery. It is more common following Mitral Valve Replacement since that valve is closer to the Sinus Node which controls the electrical behavior of the heart.
'AL Capshaw'
Brookwood
Well-known member
I am 39 and I've had my pocine valve for 6 weeks. I was fit and had no symptom before my heart murmur was caught in an annual physical exam early this year. After that, I did feel my heart was a little different. I got the news ON MY BIRTHDAY that my valve was leaking, my heart had enlarged, and I needed surgery the sooner the better. What a gift I had!
Luckily, I had a textbook perfect (in my surgeon's words) surgery and a speedy eventless recovery so far thanks to my dear wife. The reason why my native aortic valve failed is still a mystery to my cardio and my surgeon. But that is now irrelevant.
I feel I've gained my normal life back (baby aspirin has been the only new stuff to my daily life since 1 week post-op). My lifestyle was/is/will be "erratic" and I enjoy my freedom. I just couldn't stand the thought of having my fate absolutly depend on pills/the many people that handle them/the mechine that tests them, on a daily basis starting from 39 young. I do plan to live beyond 80
I'll have my valve replaced down the road. I am gambling and I feel the odds is not bad. Which valve will I choose next time? I'll have to make my decision all over again when the time comes. Things change and I'll adapt.
Some of my other thoughts on this topic:
Many of the statistic data in medical papers and studies are lumped results in a limited sample space.
In regards to the 50% (or 12% whatever) chance of a tissue valve recepient using coumadin, one has to ask how many of these people would outlast their valve and thus eliminates the possibility of a future OHS? How many of these people ended up with coumadin for reasons unrelated to their valve choices? How many of these people were on temperary ACT for preventive purpose? How this 50% breaks up against different age groups? ...
BTW, IMHO the imcompetancy of the medical field in ACT management should be considered as a risk factor when making commitment because that IS the reality and I don't see it to improve significantly as a whole very soon.
People do make mistakes (self-dose or not) and pills/mechines/instruments do fail! I am an engineer and I approve this message.
EJ
Luckily, I had a textbook perfect (in my surgeon's words) surgery and a speedy eventless recovery so far thanks to my dear wife. The reason why my native aortic valve failed is still a mystery to my cardio and my surgeon. But that is now irrelevant.
I feel I've gained my normal life back
(baby aspirin has been the only new stuff to my daily life since 1 week post-op). My lifestyle was/is/will be "erratic" and I enjoy my freedom. I just couldn't stand the thought of having my fate absolutly depend on pills/the many people that handle them/the mechine that tests them, on a daily basis starting from 39 young. I do plan to live beyond 80I'll have my valve replaced down the road. I am gambling and I feel the odds is not bad. Which valve will I choose next time? I'll have to make my decision all over again when the time comes. Things change and I'll adapt.
Some of my other thoughts on this topic:
Many of the statistic data in medical papers and studies are lumped results in a limited sample space.
In regards to the 50% (or 12% whatever) chance of a tissue valve recepient using coumadin, one has to ask how many of these people would outlast their valve and thus eliminates the possibility of a future OHS? How many of these people ended up with coumadin for reasons unrelated to their valve choices? How many of these people were on temperary ACT for preventive purpose? How this 50% breaks up against different age groups? ...
BTW, IMHO the imcompetancy of the medical field in ACT management should be considered as a risk factor when making commitment because that IS the reality and I don't see it to improve significantly as a whole very soon.
People do make mistakes (self-dose or not) and pills/mechines/instruments do fail! I am an engineer and I approve this message
.EJ
Marguerite53
Premium Level User
Hello and welcome to our community.
I am 54 and I have a bovine tissue valve that is 2 years old. Textbook AVR, no complications going in or coming out..... ie....... lucky!!
The only thing I would have to say about choosing tissue in your 50's is that I know that I, personally, was feeling very rundown during the 2 years my aortic stenosis was advancing to the point of valve replacement. I did not feel good during that time. When our new tissue valves go, they probably go through the same kind of slow disintegration (particularly if you have the stenosis disease) and I know I will NOT look forward to that at all. And then to top it all off with another surgery when I'm in my 70's.
But for me, the choice was about today and tomorrow...not about 20 years down the road. How do I want my day to day life to be? I'm very sensitive to meds and also not at all regimented about anything (much more free spirited) and couldn't relate to having to "watch" any level of anything on a day to day or week to week basis (heaven help me not to be diabetic ever).
I don't know how much time I'm to be given on this planet. I want each day to be my best day. For me, tissue was the instinctive choice. Had my surgeon said, hey, no, you need to really go mechanical....I would've been with him "in a heartbeat".
Choose LIFE.
Best wishes.
Marguerite
I am 54 and I have a bovine tissue valve that is 2 years old. Textbook AVR, no complications going in or coming out..... ie....... lucky!!
The only thing I would have to say about choosing tissue in your 50's is that I know that I, personally, was feeling very rundown during the 2 years my aortic stenosis was advancing to the point of valve replacement. I did not feel good during that time. When our new tissue valves go, they probably go through the same kind of slow disintegration (particularly if you have the stenosis disease) and I know I will NOT look forward to that at all. And then to top it all off with another surgery when I'm in my 70's.
But for me, the choice was about today and tomorrow...not about 20 years down the road. How do I want my day to day life to be? I'm very sensitive to meds and also not at all regimented about anything (much more free spirited) and couldn't relate to having to "watch" any level of anything on a day to day or week to week basis (heaven help me not to be diabetic ever).
I don't know how much time I'm to be given on this planet. I want each day to be my best day. For me, tissue was the instinctive choice. Had my surgeon said, hey, no, you need to really go mechanical....I would've been with him "in a heartbeat".
Choose LIFE.
Best wishes.
Marguerite
J
johnb
Hi, welcome to the site!. I have to agree with Rich. I am 48, had the valve replacement when I was 44, and opted for the St Jude. My surgeon in NYC advised to go with the mechanical valve, and I'm glad I did. The tissue valve would have to be replaced over time. Like you, my cath was clear, so you seem to be in pretty good shape. The wafarin is a small annoyance at this time, again, something my surgeon said. It's really not that bad. Bes of luck to you.
ALCapshaw2
Well-known member
The reference to 50% of Tissue Valve patients ending up on Coumadin came from 2 studies as listed in the booklet on www.heartvalvechoice.com
Here is the link to the web page for the references about % of tissue valve users on Coumadin. Go to references, #'s 47 and 48. These articles are available on MedLine, the government's medical library and can be purchased.
Here are the references:
Philips SJ. Searching for the truth: a mechanical or a tissue valve? J Heart Valve Dis 2004;13(Suppl.1):S95-S98
Wheatley DJ. Life quality and expectancy after heart valve replacement. J Heart Valve Dis 2004:13(Suppl 1):S91-S94
Here is the link to the web page for the references about % of tissue valve users on Coumadin. Go to references, #'s 47 and 48. These articles are available on MedLine, the government's medical library and can be purchased.
Here are the references:
Philips SJ. Searching for the truth: a mechanical or a tissue valve? J Heart Valve Dis 2004;13(Suppl.1):S95-S98
Wheatley DJ. Life quality and expectancy after heart valve replacement. J Heart Valve Dis 2004:13(Suppl 1):S91-S94
Dale
Well-known member
I am new to the site too. I am 56 and last fall I was told my valve would need replacing in maybe 5 years, then in April I was told "in a couple of years" and that I might start getting symptoms this year. When I go back in November I'm afraid of what the date will be then! Actually, I am just afraid in general. Every time I feel unwell I think it's a symptom although I don't get chest pain after exercising and I don't have shortness of breath, except in this humid, polluted Toronto heat!
I was told a mechanical valve was my best option. I am secretly hoping for one of the new advancements in surgery, although my surgeon seemed to doubt it. I'm glad I found the site -- actually it was someone's blog that mentioned it. It is wonderful to find an online community for support as there doesn't seem to be much support of this kind in the real world. Or maybe just not yet, until I get more into the medical system.
I was told a mechanical valve was my best option. I am secretly hoping for one of the new advancements in surgery, although my surgeon seemed to doubt it. I'm glad I found the site -- actually it was someone's blog that mentioned it. It is wonderful to find an online community for support as there doesn't seem to be much support of this kind in the real world. Or maybe just not yet, until I get more into the medical system.
Ross
Well-known member
Welcome aboard Dale. You sound just like all the rest of us. It is doable, not fun at all, but doable. If you need anything, please start a new thread so we can keep everyone in their own place to address.
M
maras1
It's interesting to see how passionate everyone is about the type of valve they chose. Everyone who has posted seems to have made the right decision for their own lifestyle and have no regrets. I am still not sure yet which way I will go when the time comes to make that decision. I have known about this valve problem all my life and felt like it held me back in some ways. All my life I have looked forward to the day when it would be replaced and I would be free to do as I wanted. Starting the research into the different types of valves has forced me to take a realistic look at my future. The reality is that I'm 52 years old, not 18. I suddenly have realized I am chasing a dream that's 30 years old. Maybe it's time to find a new dream. Time to sell the high priced road bike and buy a couple of beach bikes that I can enjoy long rides with my wife. Join a 50+ league and enjoy sports at a more leisurely pace instead of trying to compete at the Y where it's always balls to the wall. Live a healthy lifestyle instead of daily workouts trying to stay up with people half my age.
Or,
Maybe not!
Decisions, decisions.
Mark
Or,
Maybe not!
Decisions, decisions.
Mark
S
Susan BAV
I don't know if that would be completely true, no matter which valve you choose.
That said, getting a new and correctly functioning aortic valve in replacement for my old deteriorating bicuspid valve was an amazing new lease on life for me and I hope it goes that well for you also.
M
Mary
Al,
The booklet www.heartvalvechoice.com is an On-x sponsored site and calls coumadin a "blood thinner."
I am unclear if you're saying they referenced Philips and Wheatleys article?I typed in MedLine and came up with medline industries. Do you have the web address? I'd like to read the articles.
Thanks in advance
ALCapshaw2
Well-known member
Al,
The booklet www.heartvalvechoice.com is an On-x sponsored site and calls coumadin a "blood thinner."
I typed in MedLine and came up with medline industries. Do you have the web address? I'd like to read the articles.
Thanks in advance
Yes, the references are #47 and #48 at the end of the Booklet published by On-X (reproduced at www.heartvalvechoice.com).
I found the following from a quick search on GOOGLE for "Medline":
Sponsored Link
Medline
Medscape.com Sign Up Free on Medscape & Get Relevant Medline Search Results.
MedlinePlus Health Information from the National Library of Medicine
The National Library of Medicine's authoritative and current database of health information for consumers and health professionals.
www.nlm.nih.gov/medlineplus/ - 25k - Cached - Similar pages
National Library of Medicine - National Institutes of HealthBiomedical journal literature from MEDLINE/PubMed. Picture of child and mother. Visit Site · ESPAÑOL · MedlinePlus Health and drug information for patients, ...
www.nlm.nih.gov/ - 15k - Cached - Similar pages
More results from www.nlm.nih.gov »
PubMed HomePubMed is a service of the U.S. National Library of Medicine that includes over 18 million citations from MEDLINE and other life science journals for ...
www.ncbi.nlm.nih.gov/pubmed/ - Similar pages
MEDLINEOnline database of 11 million citations and abstracts from health and medical journals and other news sources. Bibliographic information needed by health ...
medline.cos.com/ - 5k - Cached - Similar pages
There are several more links on GOOGLE.
Mark,
Whoa! Hold on!
You said:
Why? You've found the dream-it's your new valve-no matter which one you select.
I'm a year older, about four months post-op, and just took my road-bike to a cardiac rehab jog/walk event this morning. I bike daily to work and plan to start longer rides after the temperatures cool. Why would you stop riding that nice road bike when you are going to get a new,improved, more efficient valve? Are you concerned about the new valve or the coumadin? Don't worry about either one. Consult with your cardio. and rehab team, buy a good helmet, and pay attention while biking.
You sound fairly athletic and after the new valve you will feel a million times better. Maybe act your age at the gym, but give those young pups a run for their money at the Y.
Remember "Age and treachery overcome youth and skill".
John
Whoa! Hold on!
You said:
Why? You've found the dream-it's your new valve-no matter which one you select.
I'm a year older, about four months post-op, and just took my road-bike to a cardiac rehab jog/walk event this morning. I bike daily to work and plan to start longer rides after the temperatures cool. Why would you stop riding that nice road bike when you are going to get a new,improved, more efficient valve? Are you concerned about the new valve or the coumadin? Don't worry about either one. Consult with your cardio. and rehab team, buy a good helmet, and pay attention while biking.
You sound fairly athletic and after the new valve you will feel a million times better. Maybe act your age at the gym, but give those young pups a run for their money at the Y.
Remember "Age and treachery overcome youth and skill".
John
Your choice should be one that reflects your lifestyle choices and which you can live with over time. If you get a tissue valve now (as I requested and received at 52), you will have at least one more surgery over time, probably shortly before you're 70. That may not be your cup of tea. You need to determine how your personal drivers work with each of the types. Either will work fine for you, and neither would force you to make a decision about which type of bike you use, or how hard you want to work out, once you're recovered.
Regarding the Coumadin percentage, it's a non-issue:
Here is the convoluted statement that the marketing people put into the On-X site. It is attempting to say that it doesn't matter if older people (over 70) have more complications on anticoagulants by saying that more of these people have had reasons to use "anticoagulant medication" anyway (for strokes or heart attacks).
"Anticoagulant medication" includes anyone taking Coumadin, Plavix, heparin, or aspirin. Note that most people over 55 now take an 81mg aspirin each day for that purpose. In fact, neither Coumadin nor warfarin is actually mentioned in the text quoted above at all.
The last line is the one that is supposed to get its information from Philips SJ. Searching for the truth: a mechanical or a tissue valve? J Heart Valve Dis 2004;13(Suppl.1):S95-S98 This statement is not a quote from the article, but claims to use it as a source. The line plainly also refers to generalized "anticoagulant medication," which would include clopidegrel (Plavix) or aspirin, and doesn't specify coumadin or warfarin.
This was a marketing statement. It didn't lie, but it is misleading. It's eay to see how Coumadin winds up being the anticoagulant in everyone's mind when they read this.
I should note that Dr. Philips' article was printed in a trade magazine used primarily for marketing purposes for the valve replacement community. The only references to this article I can Google are from MCRI (On-X) sites and one site in China, where two young doctors refer to it in an unrelated article they published about a study involving 52 aged patients (36 with AFib) with poor heart function, whose heart function was restored after valve replacement.
I would also point out that the same MCRI site indicates that porcine valves decline in eight years and bovine in ten. Accurate - if you use studies from valves made thirty years ago or use data highlighting young age groups.
This is advertising. By its nature, it's biased. I believe personally that the On-X is the most advanced mechanical valve on the market today, but I am enormously disappointed in the lack of quality and honesty in their advertising copy. Their product is more than good enough to compete without this type of misdirection.
Best wishes,
Regarding the Coumadin percentage, it's a non-issue:
On-X Marketing Site said:
Here is the convoluted statement that the marketing people put into the On-X site. It is attempting to say that it doesn't matter if older people (over 70) have more complications on anticoagulants by saying that more of these people have had reasons to use "anticoagulant medication" anyway (for strokes or heart attacks).
"Anticoagulant medication" includes anyone taking Coumadin, Plavix, heparin, or aspirin. Note that most people over 55 now take an 81mg aspirin each day for that purpose. In fact, neither Coumadin nor warfarin is actually mentioned in the text quoted above at all.
The last line is the one that is supposed to get its information from Philips SJ. Searching for the truth: a mechanical or a tissue valve? J Heart Valve Dis 2004;13(Suppl.1):S95-S98 This statement is not a quote from the article, but claims to use it as a source. The line plainly also refers to generalized "anticoagulant medication," which would include clopidegrel (Plavix) or aspirin, and doesn't specify coumadin or warfarin.
This was a marketing statement. It didn't lie, but it is misleading. It's eay to see how Coumadin winds up being the anticoagulant in everyone's mind when they read this.
I should note that Dr. Philips' article was printed in a trade magazine used primarily for marketing purposes for the valve replacement community. The only references to this article I can Google are from MCRI (On-X) sites and one site in China, where two young doctors refer to it in an unrelated article they published about a study involving 52 aged patients (36 with AFib) with poor heart function, whose heart function was restored after valve replacement.
I would also point out that the same MCRI site indicates that porcine valves decline in eight years and bovine in ten. Accurate - if you use studies from valves made thirty years ago or use data highlighting young age groups.
This is advertising. By its nature, it's biased. I believe personally that the On-X is the most advanced mechanical valve on the market today, but I am enormously disappointed in the lack of quality and honesty in their advertising copy. Their product is more than good enough to compete without this type of misdirection.
Best wishes,
Mark,
I second this -- don't sell yourself short.
I also heartily recommend cardiac rehab -- it will help you get back on the path to a very active life.
As far as valve choice, my approach was to make a list of the pros and cons of each type of valve, and then after doing all my research and reading, making my choice, taking into consideration my own priorities. You will make a good choice and do well.
M
maras1
I met yesterday with the physicians assistant at my cardiologist office. She asked me a lot of questions about what I new about valve choices and other heart related stuff. She was quite impressed by what I knew. I told her about this website and the about the knowledge everyone on this site has. She had never heard of it before but was very interested. She said they do most of their research with the AMA. I asked if I would be a canidate for the Ross Proceedure as a possibility. I found it interesting that she had not heard of the Ross Proccedure before. No one in the Ft Myers area does the surgery so it's never been brought up with her before. It really does seem the people on this site are some of the best informed people on valve replacement.
I have my first appointment with the surgeon next Tuesday. I'm leaning towards going with a tissue valvle right now. From what many people have said, depending of different factors, it may not be my choice anyway. It's funny how so far I have been really calm about the whole thing until the appointment was made with the surgeon. All of a sudden it's seems very real and more frightening. I'm suddenly hoping they will say since my symptoms are not severe, I can still wait for a year or 2.
If this seems like it's rambling it's because I'm using this to vent. I have hundreds of ramdom thoughts and no one I know really understands what I am going through It's nice to have this site full of people who do understand. Thanks for listening.
I have my first appointment with the surgeon next Tuesday. I'm leaning towards going with a tissue valvle right now. From what many people have said, depending of different factors, it may not be my choice anyway. It's funny how so far I have been really calm about the whole thing until the appointment was made with the surgeon. All of a sudden it's seems very real and more frightening. I'm suddenly hoping they will say since my symptoms are not severe, I can still wait for a year or 2.
If this seems like it's rambling it's because I'm using this to vent. I have hundreds of ramdom thoughts and no one I know really understands what I am going through It's nice to have this site full of people who do understand. Thanks for listening.
K
Karlynn
I'm sure the appointment helped cement the reality of it. You would be an oddity if you weren't worried, or fearful or apprehensive about this. It's a big thing that's going to be done. But it's a successful thing too! It will be improving your life! And you can vent here any time!
