OK so this is my first post. I am a 47 year old male. I had always known that I had a heart murmur, even as a young child. I was diagnosed with aortic stenosis in 2001. At that time the valve was at 1.5cm. It held there until the past few years, Two years ago 1.3cm. Now the valve opening is down to 1.0cm. Gradient resting is 36 and peak is 63. I have no symptoms other than fatigue is much more noticable. Light to moderate exercise is helping however an exercise program has never been more difficult to start. I have a high stress job in management. I know that I am realistically within 2-3 years of surgery. I dislike the fatigue and restrictions and am asking those that have had surgery what I can expect on the other side. What are the affects of the blood thinner medicine should I go mechanical? Should I plan a change in lifestyle? As time grows nearer the anxiety grows! Thanks for any imput you may have.
What's it like on the other side? Aortic Stenosis progressing
- Thread starter mcarmical
- Start date
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You can expect a very normal life "on the other side"
The "blood thinner" which is really an "anti-coagulant" is no problem, but you must develop a regimen to TAKE the pill and TEST periodically.
At age 47, a mechanical valve will lessen the need for a future surgeries.
There is NO need to change a lifestyle.....you just have to use common sense.
Anxiety is natural. Most of us will tell you that the "waiting" is the worst part of this surgery.
The "blood thinner" which is really an "anti-coagulant" is no problem, but you must develop a regimen to TAKE the pill and TEST periodically.
At age 47, a mechanical valve will lessen the need for a future surgeries.
There is NO need to change a lifestyle.....you just have to use common sense.
Anxiety is natural. Most of us will tell you that the "waiting" is the worst part of this surgery.
Orangebrittainy
Well-known member
Welcome! I can't tell you what the other side is like, but I know for me I just hope to finally lead a normal life. Best Wishes, you could not have found a better place to hang out and be around people who understand.
BlindFaith
Well-known member
Welcome !! You came to the right place. Many, many folks here know exactly what you are going through. I had a murmur when I was young, but stopped going to the 5-yr checkup with my cardiologist... probably about 20 years ago. 5 years out was a long time to remember, so it just fell off my radar. And, I was playing competitive hockey once a week which was my barometer to being "OK". Although daily, I was getting mini SOB instances at times and an occasional dizzy spell after walking quickly to a meeting, I just thought I was getting OLD!!. (strange that these did not happen with hockey) When I was with my father last June (2009) during a regular checkup after his 4th OHS, the Dr. stopped just to do a "social" listen of my heart. Well, he immediately indicated I had severe aortic stenosis... an echo and cath over the next 6 weeks confirmed it and I had my OHS 9/23/2009. The waiting was absolutely the worst part... actually, I was very calm on the day of surgery, weird but true. I went with tissue valve. (cow) My cardiologist thought I should do mechanical and my surgeon leaned to the tissue. I really wanted to play hockey again, so I went tissue and my dad has had them all and he also thought tissue was best for me.. I am 57.
so, what's it like on this side of the mountain ? well, I don't get shortness of breath or dizzy after walking anymore, but I can't say "I'm a new man!!" - so somewhere in between. I do feel better and you will too !! It's not nearly as bad as you think it will be. Certainly dangerous since it is OHS, but a very successful surgery and getting better all the time. Both tissue and mechanical are great choices, more of a personal choice based on the differences. Either way, you get to live !!
so, what's it like on this side of the mountain ? well, I don't get shortness of breath or dizzy after walking anymore, but I can't say "I'm a new man!!" - so somewhere in between. I do feel better and you will too !! It's not nearly as bad as you think it will be. Certainly dangerous since it is OHS, but a very successful surgery and getting better all the time. Both tissue and mechanical are great choices, more of a personal choice based on the differences. Either way, you get to live !!
agree with above post, it isnt as bad as you think,make your choice not other peoples choice, both are good imo
I think you will feel better on the other side.
To me, the other side feels no different than before.
I was diagnosed with aortic stenosis in 1981. My cardiologist said the valve would have to be replace in about 10 years. I had no symptoms other than a noisy valve until a month before AVR. I blacked out while on my daily 3 mile fast walk. I asked my cardiologist where he would go if HE was having valve surgery. He said Cleveland or Houston. I only lived 550 miles from Houston so it was my choice. He also recommended the surgeon. The surgeon and my cardiologist recommended a mechanical valve due to my age of 56. They also were aware that I had a history of bleeding duodenal ulcer. I didn't fear anti-coagulant for wife had taken it for a year and it was no big deal for her. I never dreaded valve surgery, wife did all the worrying. I didn't give it much thought, I'd heard most people go home in 5 days and that was my plan. Didn't work out just like that, I was there for 20 days. It took almost a year to get back to normal.
Today, still feel great, like the others said, being on anti-coagulant doesn't change ones lifestyle. I eat and do what I did before taking anti-coagulant. It does require testing and common sense. Today, I would dread another valve surgery. I'm planning on the valve lasting my lifetime but one never knows for sure.
I was diagnosed with aortic stenosis in 1981. My cardiologist said the valve would have to be replace in about 10 years. I had no symptoms other than a noisy valve until a month before AVR. I blacked out while on my daily 3 mile fast walk. I asked my cardiologist where he would go if HE was having valve surgery. He said Cleveland or Houston. I only lived 550 miles from Houston so it was my choice. He also recommended the surgeon. The surgeon and my cardiologist recommended a mechanical valve due to my age of 56. They also were aware that I had a history of bleeding duodenal ulcer. I didn't fear anti-coagulant for wife had taken it for a year and it was no big deal for her. I never dreaded valve surgery, wife did all the worrying. I didn't give it much thought, I'd heard most people go home in 5 days and that was my plan. Didn't work out just like that, I was there for 20 days. It took almost a year to get back to normal.
Today, still feel great, like the others said, being on anti-coagulant doesn't change ones lifestyle. I eat and do what I did before taking anti-coagulant. It does require testing and common sense. Today, I would dread another valve surgery. I'm planning on the valve lasting my lifetime but one never knows for sure.
I was relieved to be free of the worry of a future surgery. In addition, I did feel the benefit of a more efficient heart. And it definitely beats the alternative.
a4wanman
Well-known member
I'm thinking I should have had the surgery 1 or 2 years ago. I no longer huff-and-puff when cutting the grass. Before surgery, I had to stop to catch me breath every now and then. This was even before starting rehab. I'm 4 months post surgery and halfway through cardiac rehab.
Surgery results in significant improvement in essentially all people with AS after a recovery period. I had NO symptoms prior to sugery despite a very tight valve (0.7mm and shrinking quickly) and high pressure gradients, so my improvement has not been all that dramatic. Still, I'm glad to have avoided serious symptoms that were coming soon enough. You have substantial pressures and some symptoms and should get great releief.
Warfarin has not and should not change my lifestyle. My hobby is high speed road racing (200+ MPH) and wrenching on cars and motorcycles, which involves a lot of cuts and bruises (the wrenching, not the racing). I haven't noticed any bleeding problems with my INR running between 2 and 3.5. I still shave with a blade razor too.
Warfarin has not and should not change my lifestyle. My hobby is high speed road racing (200+ MPH) and wrenching on cars and motorcycles, which involves a lot of cuts and bruises (the wrenching, not the racing). I haven't noticed any bleeding problems with my INR running between 2 and 3.5. I still shave with a blade razor too.
Glad you found our site. I had AVR at 49 (2 months away from turning 50). I can honestly say that life with a mechanical valve and being on anticoagulant is really no different than before. Actually, my health is better, some due to surgery and some due to lifestyle changes. Mechanical vs Tissue is a personal choice between you, your research and your doctor. I chose mechanical because it was my best shot at not having to have a second surgery.
Life is good! Good luck.....
Life is good! Good luck.....
I also had AVR at 49 (4 months ago). My storie's similar to yours. Have known since I was 12 I'd eventually have to get my BAV replaced. And have known for a couple years the time was probably getting very close. My shortness of breath and back/chest pains got much worse by last spring, so I figured it was time. The angiogram they did in April confirmed it. Dick (and others above) summed it up very nicely. Can't add much other than to echo some key points. Life on this side is MUCH better than life on the side you're on now. Don't fear going through the surgery - for me (and many others) it's nowhere near as bad as you're probably fearing. And as far as restrictions on Warfarin, they're very minimal. Do an advanced search for some of my older posts (back in March-May) to get a good idea what it's like as you approach the other side, and once you get on the other side. Most of the things you'll be wondering are probably covered. PM me if other questions
bluefields409
Well-known member
Alrighty then....... a question for those who had and/or were symptomatic before AVR ...specifically with SOB, fatigue, angina and high BP.... what changes or improvements did you experience after AVR and time frame during recovery.
It is so helpful for those of us yet to start that trek up the mountain to hear from those on "the other side". Thank you SO much for sharing your experinces on "the heart road"
~Blue
It is so helpful for those of us yet to start that trek up the mountain to hear from those on "the other side". Thank you SO much for sharing your experinces on "the heart road"
~Blue
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AgilityDog
Well-known member
I'm almost 2 weeks post surgery for AVR. Regurge, not stenosis but...
I'm not short of breath anymore. Very little wetness left in lungs. Angina seems to be going away, too.
I'm on minimal diuretics, but I can see the veins in my feet again.
I'm tired, exercise is still difficult - but YO, I'm 2 weeks from surgery tomorrow!!
All in all, I feel better, and can tell I'll feel better than ever once I finish recovery. By January I'll be ready to run Jet in an agility trial again.
I'm not short of breath anymore. Very little wetness left in lungs. Angina seems to be going away, too.
I'm on minimal diuretics, but I can see the veins in my feet again.
I'm tired, exercise is still difficult - but YO, I'm 2 weeks from surgery tomorrow!!
All in all, I feel better, and can tell I'll feel better than ever once I finish recovery. By January I'll be ready to run Jet in an agility trial again.
Marguerite53
Premium Level User
Welcome to our wonderful community!
Well, for one thing, once you've had the surgery you won't feel that anxiety you are feeling now leading up to it!! :tongue2: I think I feel more safe (I really hated waiting and it was a 3 year wait). I know that my heart is now better than it's ever been. Your cardiologist may make you wait and wait and wait for the surgery and your symptoms may really start to wear on you; make you tired and breathless. The best thing I did (having been one of those people who had a cardio who wanted me to keep my "native" valve as long as possible) was to ask my cardio point blank when she called in the surgeon -- exactly what was it that would get me into the surgeon's office (altho of course I could have made an appointment with any surgeon without her). For her it was a measure of .7 cm sq. (this because my other numbers/pressures were not dangerous and I wasn't passing out or terribly dizzy). Everyone is different. That is why it is best to trust your cardio (or find a new one) and work closely, clearly with them (or nurses in their office) so that you understand what is going on and can direct your treatment/surgery as confidently as possible.
Ask lots of questions here! Start new threads! We have an enormous combined experience and we are happy to help and support.
Marguerite
Well, for one thing, once you've had the surgery you won't feel that anxiety you are feeling now leading up to it!! :tongue2: I think I feel more safe (I really hated waiting and it was a 3 year wait). I know that my heart is now better than it's ever been. Your cardiologist may make you wait and wait and wait for the surgery and your symptoms may really start to wear on you; make you tired and breathless. The best thing I did (having been one of those people who had a cardio who wanted me to keep my "native" valve as long as possible) was to ask my cardio point blank when she called in the surgeon -- exactly what was it that would get me into the surgeon's office (altho of course I could have made an appointment with any surgeon without her). For her it was a measure of .7 cm sq. (this because my other numbers/pressures were not dangerous and I wasn't passing out or terribly dizzy). Everyone is different. That is why it is best to trust your cardio (or find a new one) and work closely, clearly with them (or nurses in their office) so that you understand what is going on and can direct your treatment/surgery as confidently as possible.
Ask lots of questions here! Start new threads! We have an enormous combined experience and we are happy to help and support.
MargueritePhilip B
Well-known member
Other Side?
Other Side?
What other side? Yes, I do understand where you are coming from and your concerns. Life for me on the other side is really not much different from where I was at before surgery. I eat what I want and do what I want with no restrictions. The only difference is the coumadin I take every night and the INR test I do weekly.
As others have noted, coumadin isn't blood thinner, it's an anti-coagulant. This simply means your blood doesn't clot as quickly. For me, doing the coumadin thing isn't something to be feared. I pursue a very active lifestyle.
Regarding valve choice, there aren't any bad choices when it comes to something that can prolong your life. My valve is mechanical and it works very well for me. If I had chosen a tissue valve, it would probably be working well too.
-Philip
Other Side?
What other side? Yes, I do understand where you are coming from and your concerns. Life for me on the other side is really not much different from where I was at before surgery. I eat what I want and do what I want with no restrictions. The only difference is the coumadin I take every night and the INR test I do weekly.
As others have noted, coumadin isn't blood thinner, it's an anti-coagulant. This simply means your blood doesn't clot as quickly. For me, doing the coumadin thing isn't something to be feared. I pursue a very active lifestyle.
Regarding valve choice, there aren't any bad choices when it comes to something that can prolong your life. My valve is mechanical and it works very well for me. If I had chosen a tissue valve, it would probably be working well too.
-Philip
Greetings, there in Castle Rock. As you can see by my signature line, my valve was replaced last September 22nd. I actually began having the early symptoms such as you are having in 2008. In November of 2008, my valve area was measured at 1.2 cm2. The symptoms changed rapidly in 2009 and by the time of my AVR the valve area was .69 cm2. At a valve area of 1 cm2 my surgeon believes that valve replacement should be done at once to avoid some of the issues that I am currently dealing with.
As you probably know, the reduction in the size of the valve area is the trigger that starts a number of changes. One of those is the small area of the valve portal forces the heart to enlarge (ventricular hypertrophy) in order to force blood through that ever smaller hole. If surgery is delayed, the heart enlargement can become permanent and will never function normally after valve replacement. Often, cardiologists want to wait to recommend a patient for surgery until valve area has dropped below 0.75 cm2 and the patient is experiencing all of the major symptoms; Surgeons do not! I would strongly suggest that you at least get a surgical consult now so you have at least one different point of view than that of the cardiologist.
My present circumstance appears to be that my own AVR went extremely well. The left ventricular hypertrophy, however, is being reduced only very slowly. The result is that almost a year after surgery, I am experiencing fluid retention and exhibiting some of the early symptoms of congestive heart failure even though my aortic valve is fully open. The stiffness caused by the hypertrophy does not allow my heart to squeeze strongly enough on the systolic beat. One of your concerns must now be avoiding a similar situation for yourself.
I think many people in VR have had a similar experience that cardiologists as a group tend to want to delay surgery until it meets the somewhat arbitrary milestones that they choose to work with. I think almost everyone will tell you that surgery before your heart has suffered possibly irreversible damage offers you the best prospect for full recovery. My own Cardio waited until I began experiencing chest pain (the last of the major symptoms) before recommending me for surgery. In retrospect, I think this delay, quite possibly, needlessly compromised my long term prospects for recovery.
Getting an opinion from a good heart surgeon will provide you with a much clearer view than seeking a 2nd opinion from another cardiologist. If this annoys your cardiologist, then he is a poor physician; he should only want what is best for you. It is in your own best interest to take an active part in your health care and not to rely upon the opinion of a single doctor even if you believe him to be an excellent one.
Larry
Tulsa, OK
As you probably know, the reduction in the size of the valve area is the trigger that starts a number of changes. One of those is the small area of the valve portal forces the heart to enlarge (ventricular hypertrophy) in order to force blood through that ever smaller hole. If surgery is delayed, the heart enlargement can become permanent and will never function normally after valve replacement. Often, cardiologists want to wait to recommend a patient for surgery until valve area has dropped below 0.75 cm2 and the patient is experiencing all of the major symptoms; Surgeons do not! I would strongly suggest that you at least get a surgical consult now so you have at least one different point of view than that of the cardiologist.
My present circumstance appears to be that my own AVR went extremely well. The left ventricular hypertrophy, however, is being reduced only very slowly. The result is that almost a year after surgery, I am experiencing fluid retention and exhibiting some of the early symptoms of congestive heart failure even though my aortic valve is fully open. The stiffness caused by the hypertrophy does not allow my heart to squeeze strongly enough on the systolic beat. One of your concerns must now be avoiding a similar situation for yourself.
I think many people in VR have had a similar experience that cardiologists as a group tend to want to delay surgery until it meets the somewhat arbitrary milestones that they choose to work with. I think almost everyone will tell you that surgery before your heart has suffered possibly irreversible damage offers you the best prospect for full recovery. My own Cardio waited until I began experiencing chest pain (the last of the major symptoms) before recommending me for surgery. In retrospect, I think this delay, quite possibly, needlessly compromised my long term prospects for recovery.
Getting an opinion from a good heart surgeon will provide you with a much clearer view than seeking a 2nd opinion from another cardiologist. If this annoys your cardiologist, then he is a poor physician; he should only want what is best for you. It is in your own best interest to take an active part in your health care and not to rely upon the opinion of a single doctor even if you believe him to be an excellent one.
Larry
Tulsa, OK
Having been a sickly child, sickly teenager, I never knew what it was to truly feel healthy & able to do the things that I had longed for so many years! For the first time, 35 years ago and at age 24, I was able to say, I feel well and truly mean it! To me, it was like being born again!
And as for being on coumadin for decades now, that has really never been an issue and I went on to have a very active lifestyle. The only limitations were those that I chose to place on myself because I didn't want to push the envelope or take my new life, for granted.
Whatever choice you make, mechanical or tissue, that will be the right choice for you. Bottom line is to have your heart fixed before it gets worse!
Wishing you the best!
And as for being on coumadin for decades now, that has really never been an issue and I went on to have a very active lifestyle. The only limitations were those that I chose to place on myself because I didn't want to push the envelope or take my new life, for granted.
Whatever choice you make, mechanical or tissue, that will be the right choice for you. Bottom line is to have your heart fixed before it gets worse!
Wishing you the best!
Demonic
Member
I had a mechanical AVR after severe regurgitation was found after a trip to A&E (the emergency room I guess you call it) for pain associated with a kidney stone.
Although I don't consider myself to have been experiencing any symptoms before, I was a generally lazy sod. I underwent my AVR at the age of 42 and a weight of 260lbs. After recovering from surgery and looking at myself it gave me the kick I needed to do something to try and prolong and enjoy my life. I've since become a bit of a gym freak and I'm down to a more respectable 186lbs. At no time have I had any issues related to my surgery or the fact that I am now on anti-coagulation therapy for life. I've just qualified as a scuba diver and I intend to dive a lot more and continue my active lifestyle. So life "on the other side" will be what you make of it but it need not be sedentary.
As everyone has said, the concern and anxiety leading up to the operation are far more of an obstacle than the surgery and recovery. At least that was my experience. Out of hospital inside a week and I had the pleasure of taking the summer off work.
I hope you receive all the advice that you need to make you feel at ease and that your surgery goes well.
Although I don't consider myself to have been experiencing any symptoms before, I was a generally lazy sod. I underwent my AVR at the age of 42 and a weight of 260lbs. After recovering from surgery and looking at myself it gave me the kick I needed to do something to try and prolong and enjoy my life. I've since become a bit of a gym freak and I'm down to a more respectable 186lbs. At no time have I had any issues related to my surgery or the fact that I am now on anti-coagulation therapy for life. I've just qualified as a scuba diver and I intend to dive a lot more and continue my active lifestyle. So life "on the other side" will be what you make of it but it need not be sedentary.
As everyone has said, the concern and anxiety leading up to the operation are far more of an obstacle than the surgery and recovery. At least that was my experience. Out of hospital inside a week and I had the pleasure of taking the summer off work.
I hope you receive all the advice that you need to make you feel at ease and that your surgery goes well.
I am 37 years old and I am 6 weeks post op from Aortic Valve Replacement. At 6 weeks out I probably have more energy than I have had in the past 3 years and I havnt even started cardio rehab or anything. I feel better and I am just waiting for the bone to finish heeling. I still cannot lift anything heavy and I am still avoiding caffeine since I have battled intermitant A-fib and heavy haert beats. even then life is better than before the surgery. Its a rough 3 weeks but after the first 3 weeks its definitly easier.
Come on and drink the kool aid and join us here on the other side.
Come on and drink the kool aid and join us here on the other side.
