Goodness, the blue in the face was an expression. I didn't mean it literally. Obviously a bad choice of words but I simply meant that if he keeps it for years and years that is a secret that may bring about doubts in her mind, and he can reassure her over and over but she may have doubts that it's nothing to worry about. I completely think letting a loved one know would be comforting with regards to anxiety. I absolutely didn't mean he would literally get blue in the face. No one should, heart problem or not.
So.... when do you tell the family about this?
- Thread starter Roxx_yer_Soxx
- Start date
Help Support Valve Replacement Forums:
Listen to Marguerite. This is a burden to carry around. Sharing the news will help you begin to step back from it. In 2001, I learned about my valve problem and was plunged into depression with the news. Talking helped me develop some perspective and let me concentrate on the fact that I was years away from surgery. It still produced more anxiety in 2009 when I learned that surgery was imminent. Last year, my family was concerned but I had prepared them for the day when I might need a valve replacement so it was not too troublesome when the time came. My Mother was a little goofy but I was able to talk her down by pointing out that other than my heart heart issue I was her healthiest child and when it was fixed I would be in great shape. This would have been more difficult if she was hearing about my heart problem for the first time.
Before I first met with my surgeon, his office sent me a packet and asked that I try to find as many answers as possible. Among the questions was the one about what family members in the previous two generations had heart problems. In trying to answer this I learned that my family also likes to keep secrets. To my surprise I learned that, although it was not common knowledge, my Mother's younger brother had had heart surgery, when I called him, he said, "Oh yes, I had an aortic valve replacement - Twice!" After more questions, I learned that Uncle Bob's younger brother and my Grandfather both died with failing aortic valves. Imagine my surprise in realizing that I was not the first and not alone. My family did not talk about my Grandfather's problem because they believed it was caused by some kind of moral failue on his part that left him unable to work in the fields. This I learned as I was becoming unable to do things such a mow my own lawn.
When I discussed this with my surgeon, he said that a problem arising in three generations and each discovered between the ages of 45 & 50 that it was almost certainly caused by some genetic anomaly. Because my Uncle's first valve (a St Jude mechanical) began failing as the result of tissue growth, he recommended that I plan on a tissue valve since there was a good chance that the same thing might happen to me. Finally, my surgeon suggested that my cousins needed to know of the problem and that any diagnosis of someone with a heart murmur should be followed up in light of the family history. So I made it a point of talking to my 1st cousins. All of them were surprised but none of them went running through the streets in despair. I was able to tell them that should this heart problem be discovered in them or their children that it is easy to diagnose and today treatment can restore one's health. For the few that found the news disturbing, my own recovery from surgery has helped allay their fears.
So, my suggestion is that without a lot of fanfare you begin speaking with your family and let them know that you have a heart issue but that your doctor is watching it and if intervention is needed, it can be treated long before it becomes life threatening. This would also give you the opportunity to feel them out to see if anyone else shares your problem and, as in my family, leave them a little more vigilant if a similar problem should arise in one of their own offspring. I think you have an obligation to share this and it doesn't have to be in a flashy way or all at one time.
One final note, in my family, when my cousins now speak of my surgery they usually add "yeah, just like Uncle Bob..." My talking about it not only eased my anxiety but it sort of gave them permission to talk about it which I think is a healthy thing. Knowing that I'm not the only one has been strangely comforting. I never really knew my Grandfather because I was 4 when he died 6 years before the first successful valve replacement but I feel a kinship with him now that I do not with any of the others because I know how he felt when he became short of breath or had to Lay down when he suffered palpitations. Choosing to share this information may launch you on a path you are not anticipating but that is not always a bad thing.
Larry
Before I first met with my surgeon, his office sent me a packet and asked that I try to find as many answers as possible. Among the questions was the one about what family members in the previous two generations had heart problems. In trying to answer this I learned that my family also likes to keep secrets. To my surprise I learned that, although it was not common knowledge, my Mother's younger brother had had heart surgery, when I called him, he said, "Oh yes, I had an aortic valve replacement - Twice!" After more questions, I learned that Uncle Bob's younger brother and my Grandfather both died with failing aortic valves. Imagine my surprise in realizing that I was not the first and not alone. My family did not talk about my Grandfather's problem because they believed it was caused by some kind of moral failue on his part that left him unable to work in the fields. This I learned as I was becoming unable to do things such a mow my own lawn.
When I discussed this with my surgeon, he said that a problem arising in three generations and each discovered between the ages of 45 & 50 that it was almost certainly caused by some genetic anomaly. Because my Uncle's first valve (a St Jude mechanical) began failing as the result of tissue growth, he recommended that I plan on a tissue valve since there was a good chance that the same thing might happen to me. Finally, my surgeon suggested that my cousins needed to know of the problem and that any diagnosis of someone with a heart murmur should be followed up in light of the family history. So I made it a point of talking to my 1st cousins. All of them were surprised but none of them went running through the streets in despair. I was able to tell them that should this heart problem be discovered in them or their children that it is easy to diagnose and today treatment can restore one's health. For the few that found the news disturbing, my own recovery from surgery has helped allay their fears.
So, my suggestion is that without a lot of fanfare you begin speaking with your family and let them know that you have a heart issue but that your doctor is watching it and if intervention is needed, it can be treated long before it becomes life threatening. This would also give you the opportunity to feel them out to see if anyone else shares your problem and, as in my family, leave them a little more vigilant if a similar problem should arise in one of their own offspring. I think you have an obligation to share this and it doesn't have to be in a flashy way or all at one time.
One final note, in my family, when my cousins now speak of my surgery they usually add "yeah, just like Uncle Bob..." My talking about it not only eased my anxiety but it sort of gave them permission to talk about it which I think is a healthy thing. Knowing that I'm not the only one has been strangely comforting. I never really knew my Grandfather because I was 4 when he died 6 years before the first successful valve replacement but I feel a kinship with him now that I do not with any of the others because I know how he felt when he became short of breath or had to Lay down when he suffered palpitations. Choosing to share this information may launch you on a path you are not anticipating but that is not always a bad thing.
Larry
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Philip B
Well-known member
Timing
Timing
My valve lasted over fifty years. It was still working okay when my 5.8 cm aortic aneuryism was discovered after twenty-seven years of avoiding doctors of all kinds. They took care of both issues in one trip.
So you've got an potential issue that needs to be monitored, what's the big deal about making sure your wife knows what's going on? My wife knew I had a potential issue with my aortic valve before we got married and married me anyway. Our relationship didn't change.
You're an athlete and in denial? Guess what... you can still be an athlete even if you're not in denial.
You're in monitoring mode... monitor and move along with your normal life. When it's time to get things fixed... get things fixed. Sure, it's normal to feel stressed when you findout you've got a problem, but obsessing isn't where you want to go either. Of course, if you like to stress, that's okay too... it's really a choice you get to make. Your concerns still sound a lot like those you posted back in December 2009. Hang in there though, if you do the stress thing and continue through December, you'll have stressed for a year. Don't get me wrong, we're okay with that.
I never wanted to be treated differently because I had a "heart condition" before I had surgery and prefer to not to be treated differently now that I've had my valve replaced and aorta fixed. Quality of life and activities don't have to change just because your valve gets replaced and your aorta is overhauled.
I really didn't give my "heart condition" much thought during the twenty-seven years that I didn't see any doctors. I should've had the problem monitored, and I'd never recommend that anyone avoid getting monitored like I did.
I don't see how you could go wrong by talking to you wife about potential problems you guys may have to deal with down the road.
-Philip
Timing
My valve lasted over fifty years. It was still working okay when my 5.8 cm aortic aneuryism was discovered after twenty-seven years of avoiding doctors of all kinds. They took care of both issues in one trip.
So you've got an potential issue that needs to be monitored, what's the big deal about making sure your wife knows what's going on? My wife knew I had a potential issue with my aortic valve before we got married and married me anyway. Our relationship didn't change.
You're an athlete and in denial? Guess what... you can still be an athlete even if you're not in denial.
You're in monitoring mode... monitor and move along with your normal life. When it's time to get things fixed... get things fixed. Sure, it's normal to feel stressed when you findout you've got a problem, but obsessing isn't where you want to go either. Of course, if you like to stress, that's okay too... it's really a choice you get to make. Your concerns still sound a lot like those you posted back in December 2009. Hang in there though, if you do the stress thing and continue through December, you'll have stressed for a year. Don't get me wrong, we're okay with that.
I never wanted to be treated differently because I had a "heart condition" before I had surgery and prefer to not to be treated differently now that I've had my valve replaced and aorta fixed. Quality of life and activities don't have to change just because your valve gets replaced and your aorta is overhauled.
I really didn't give my "heart condition" much thought during the twenty-seven years that I didn't see any doctors. I should've had the problem monitored, and I'd never recommend that anyone avoid getting monitored like I did.
I don't see how you could go wrong by talking to you wife about potential problems you guys may have to deal with down the road.
-Philip
Roxx_yer_Soxx
Well-known member
All of you great people have made some wonderful points, all of your support and compassion means a great deal to me.
It's been a week today since my Echo.... the tech was very talkative... she said "your valve is working perfect" and "I still can't tell if you have a bicuspid or not?"
As I was putting my shirt on, I asked...."and what was the root measurement?" she said....."hmmm....I came up with 3.8."
I could feel the blood rush to my face, I was like "3.8, ouch.... that's not good."
She said..... "I could be wrong."
(My thoughts were a last minute attempt to make me feel better.)
I have spent the last week jumping every time my cell phone rings as I am convinced the very next call will be the Cardio office with some grimm news.
A week came and went....and no call.
So...I called today and asked for a copy of my Echo report, the lady said she would send a copy right out in the mail.
So... I'm not sure if I am moving a little faster than my Cardio, or if he even has anything he wants to discuss?
Either way, I refuse to wait any longer to see these new numbers, so I made the call.
It's been a week today since my Echo.... the tech was very talkative... she said "your valve is working perfect" and "I still can't tell if you have a bicuspid or not?"
As I was putting my shirt on, I asked...."and what was the root measurement?" she said....."hmmm....I came up with 3.8."
I could feel the blood rush to my face, I was like "3.8, ouch.... that's not good."
She said..... "I could be wrong."
(My thoughts were a last minute attempt to make me feel better.)
I have spent the last week jumping every time my cell phone rings as I am convinced the very next call will be the Cardio office with some grimm news.
A week came and went....and no call.
So...I called today and asked for a copy of my Echo report, the lady said she would send a copy right out in the mail.
So... I'm not sure if I am moving a little faster than my Cardio, or if he even has anything he wants to discuss?
Either way, I refuse to wait any longer to see these new numbers, so I made the call.
Don't feel bad about making the call. As I have posted before, I see my Cardio to discuss my Echo results within minutes (yes minutes) after the Echos. Waiting is not a requirement and should not be tolerated.
I glad to see you had a good discussion with your wife!
Scott
I glad to see you had a good discussion with your wife!
Scott
Marguerite53
Premium Level User
I think the word discussion should be in quotes...... I think he ducked an opportunity and opted for a more pleasant afternoon...... :rolleyes2:
But I do agree -- good for you for getting your results mailed to you. Now, you'll be able to show your wife how confusing everything is (echo reports are full of way too many peculiar terms and numbers and not enough sentences!) and she will have a piece of paper to shake her head at curiously with you.
Come on...... no more ducking, Roxx...... :wink2:
Marguerite
It looks like you understood my meaning without the quotes. Men will be men.
Orangebrittainy
Well-known member
I would tell your spouse, but remember it doesn't always mean surgery. I grew up knowing about my problems, and doctors always said I'd have surgery by the time I was 18. I made it six extra years and had a child I was told I couldn't have. Honestly there is nothing to do but to just keep living life everyday like nothing is going on, an extra appointment or so a year is not a big deal. The thoughts of the surgery can be scary, but for me, about a week before my surgery I had a realization. That was, I was in good hands, a doctor I trusted and I was going to be so drugged I wouldn't remember a thing going on. It gave me comfort.
Right now keep seeking help for your anxiety, it is a bigger danger to you than your heart at the moment. Enjoy your family and keep going on.
Right now keep seeking help for your anxiety, it is a bigger danger to you than your heart at the moment. Enjoy your family and keep going on.
Roxx_yer_Soxx
Well-known member
All of you wonderful people have been a great comfort to me the past week, and a lot easier on my wallet than seeing a therapist 
The past few days, I have been my usual comedic self.... (yeah, I am the "funny" one pretty much wherever I go, although you guys don't get to see that side of me) but I have had a dullness, or darkness within myself that either no one has caught on to, or at least said anything.Before I tell my wife what's up, I'm going to have to believe myself that surgery or no surgery, everything will be alright.
Last night when I got home from work, my 5 year old daughter greeted me with a song she made up called "I love daddy."
As she sang, she was twirling around showing me her new moves she just learned at dance class. Meanwhile, my 15 month old son was following me to the bedroom (where I change out of office clothes into more comfortable clothes) and he's saying "daddy, daddy, daddy" over and over again trying to mimic his sister..... I'm a lucky guy.
As I stood there changing in front of the mirror, I noticed that the extra workouts is paying off. I have always been in shape, but I am in the middle of the p90x workout program at the moment, and at 32 I really am in better shape than I was in high school. I workout at a college gym (I am alumni there so I have a membership for life) and I notice that I take far fewer breaks than guys 10 years younger than myself.At work, customers and new co-workers often mistake me for 5-7 years younger than I am. I don't drink, don't smoke, only ever been with one woman (married my high school sweetheart)
I take every precaution to live clean, and take care of myself.
I am still in the "why me" stage of this BAV thing....and I have to get over that.
Life isn't always fair, and the logical part of me knows that in perspective of others, I have a
very little to complain or whine about. We all have obstacles that we will have to overcome.
Perhaps I just found out about mine sooner than later? Before I tell my wife about this, I am going
to have to believe to my soul that everything will be just fine, and that my life will not be shortened by this,
as if I just try to fake my way through the "it'll be alright" part, she'll sense the B.S. in about .02 seconds.
The past few days, I have been my usual comedic self.... (yeah, I am the "funny" one pretty much wherever I go, although you guys don't get to see that side of me) but I have had a dullness, or darkness within myself that either no one has caught on to, or at least said anything.Before I tell my wife what's up, I'm going to have to believe myself that surgery or no surgery, everything will be alright.Last night when I got home from work, my 5 year old daughter greeted me with a song she made up called "I love daddy."
As she sang, she was twirling around showing me her new moves she just learned at dance class. Meanwhile, my 15 month old son was following me to the bedroom (where I change out of office clothes into more comfortable clothes) and he's saying "daddy, daddy, daddy" over and over again trying to mimic his sister..... I'm a lucky guy.
As I stood there changing in front of the mirror, I noticed that the extra workouts is paying off. I have always been in shape, but I am in the middle of the p90x workout program at the moment, and at 32 I really am in better shape than I was in high school. I workout at a college gym (I am alumni there so I have a membership for life) and I notice that I take far fewer breaks than guys 10 years younger than myself.At work, customers and new co-workers often mistake me for 5-7 years younger than I am. I don't drink, don't smoke, only ever been with one woman (married my high school sweetheart)
I take every precaution to live clean, and take care of myself.
I am still in the "why me" stage of this BAV thing....and I have to get over that.
Life isn't always fair, and the logical part of me knows that in perspective of others, I have a
very little to complain or whine about. We all have obstacles that we will have to overcome.
Perhaps I just found out about mine sooner than later? Before I tell my wife about this, I am going
to have to believe to my soul that everything will be just fine, and that my life will not be shortened by this,
as if I just try to fake my way through the "it'll be alright" part, she'll sense the B.S. in about .02 seconds.
Since you asked, I think you should just tell your wife now, that you have a bicuspid valve and a slightly enlarged aorta that needs to be awatched and some day you MAY need to have surgery. I really believe, that if you keep thinking of reasons to put it off, (I was actually surprised when you first started this thread, because I figured you probably told her last year when you first found out) you never will tell her, and it HAS to be harder on you keeping this all to your self and on top of worrying about IF and when you need surgery you added this extra burden to yourself of if and when you will tell your wife. I also don't think you OR anyone ever gets to the point that they "believe to my soul that everything will be just fine, and that my life will not be shortened by this" when it comes to something like this that does have risk, no matter how small they may be, most people will always have some fears they might be the small % that either has an annuerysm dissect or doesn't do well with surgery. I think you may have set a goal for yourself that is almost impossible to reach as the time you will tell your wife.
I don't see any reason to fake your way thru anything. I think you should just tell her the facts as you know them now..not all the fears you are worrying about, but the facts. That you may (or DO I can't remember what was decided) have a bicuspid valve, that means instead of 3 leaflets you have 2 and it is something 2% of the people have and most never need any interventions or have any problems at all and that you also have a section of your Aorta that is larger than normal, but right now it isn't close to needing replaced, but you have to keep an eye on it so IF it ever gets large enough to need replaced you will know and can have surgery that for the vast majority of people has very good success rates. You also might want to tell her the fact you do keep your self in shape, don't smoke ect will help with your recovery IF you ever do need surgery or any kind.
I really think when you finally tell her, it will lessen YOUR anxiety too, unless of course you tell her all the worst case senerios which wouldn't do either of you good.
I don't see any reason to fake your way thru anything. I think you should just tell her the facts as you know them now..not all the fears you are worrying about, but the facts. That you may (or DO I can't remember what was decided) have a bicuspid valve, that means instead of 3 leaflets you have 2 and it is something 2% of the people have and most never need any interventions or have any problems at all and that you also have a section of your Aorta that is larger than normal, but right now it isn't close to needing replaced, but you have to keep an eye on it so IF it ever gets large enough to need replaced you will know and can have surgery that for the vast majority of people has very good success rates. You also might want to tell her the fact you do keep your self in shape, don't smoke ect will help with your recovery IF you ever do need surgery or any kind.
I really think when you finally tell her, it will lessen YOUR anxiety too, unless of course you tell her all the worst case senerios which wouldn't do either of you good.
Roxx_yer_Soxx
Well-known member
Hi Lyn, thank you for the very nice rational minded post that is exactly how I need to think.
2 Echo's....neither can confirm Bicuspid or not.... 1 tech said it is, another came in the room and said its a abnormal shaped Tri..... whatever it is, it's working fine now. 3.8-ish root size.... Cardio calls this top side of normal, and seems to have very little concern at this point, just wants regularly follow-up of course, which of course I will.
I also wanted to mention you said something about one of the reasons you don't want to tell people, is because you are afraid they will look at you or treat you different if they know you have a 'heart condition" or something like that. Honestly I think how people react or treat you when they find out you MAY need surgery someday for your heart, has alot to do with how YOU act about it. I think for most people/family members they might have some question in the beginning about what it is, if there is anything you should or shouldn't be doing ect and then pretty much, tuck it into the back of their mind and for the most part forget about it as far as day to day living acting around you. IF you mention you heart and fears or say you can't/shouldn't do something because of your heart often , of course they probably will think about/worry about you more often. But if you go about your life just like you always have and just mention when you have or had a check up recently, from my experience most people will do the same or more or less forget about the fact you have any problem. I know just from living with Justin who has had many heart surgeries and most everyone knows about them since he's had to miss alot of school and work ect for heart surgeries and will need more in the future (not to mention his scars and zipper tat) that except for right before or after surgeries, most people never think about his heart or at least they don't treat him differently than they treat everyone else, if they do think about it. Alot of that is probably because he doesn't mention it or bring it up or say he can't do something because he has heart problems. He just pretty much goes on with living his life, even if he needs to nap a little more than people his age, except for that and getting his check ups, pretty much everything is the same as everyone else.
We do talk about his heart, but not as something to worry about, but just like we talk about anything else going on. Both my Mom and Dad have /had heart issues too, my Mom had a couple surgeries, my Dad just takes meds, but he is 80 and mowing the lawn and snowblowing and most people knew he has something "wrong" with his heart because he was in the hospital a couple days a few years ago, but no one treats him any different than they would any 80 year old man because of his heart. Most likely because beside taking his meds and getting check up he doesn't focus on it either.
I know others that haven't had surgery (or had one a while ago and are fine) but are either being watched or take meds but they are often talking about their heart or what they can or can't do ect, so of course everyone around them treats them like a frail heart patient if that makes sense.
I think this is something like ripping a band aid off you should just take a deep breath and do, tell your wife (and your adult family members if you think they will be supportive and not make you more anxious) I wouldn't tell your children yet, only because they are so young it would be hard to understand,you may need surgery someday. it would be different if you were having surgery soon, but for now, I don't see any reason to tell your young kids.
ps I understand the concersn about the enlarged Aortic root, Justin is 4.3 and we've been watching it.
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Marguerite53
Premium Level User
Okay, Roxx. You're starting to sound like you can get around to telling your wife. Good. Lyn (and others) have made some fantastic points. So let's work on the "why me" stuff.
I bet if they MRI-ed every part of your body they would find something wrong with more than your heart!! NO ONE is perfect! What has actually happened for you, and particularly since you are so adamant about working out hard and staying all buff, is that the curve ball that life has thrown you is some very important information that could actually save your life. You don't have to do anything now except make a doctor appointment every "x" years and have your heart looked at. Nothing else, nada, zilch. Nothing has changed. You aren't starting any medications, you aren't being given restrictions, nothing has changed for you except this fantastic (and might I repeat... FANTASTIC) bit of information which is going to allow you to continue to be smart about your health. Please look at it as helpful, not as a curse. You really don't have to consider yourself a heart patient. You may never be a heart patient! Because I went to too many rock'n'roll concerts 30 years ago and will probably someday have some hearing loss, am I going around calling myself deaf?? Of course not! So sit back and shrug your shoulders and think, ah well, I'm not as perfect inside as I am outside!! Whatever!!! :wink2: Nobody can see that part anyway!
It's the weekend. Get a babysitter. Go out with your wife to some nice public place so that she can't "read" you quite as well with all the distractions around you. Tell her. Let her learn with you. Let her reassure you. Let her love you. She wants to -- that's why she chose you.
:thumbup: Marguerite
I bet if they MRI-ed every part of your body they would find something wrong with more than your heart!! NO ONE is perfect! What has actually happened for you, and particularly since you are so adamant about working out hard and staying all buff, is that the curve ball that life has thrown you is some very important information that could actually save your life. You don't have to do anything now except make a doctor appointment every "x" years and have your heart looked at. Nothing else, nada, zilch. Nothing has changed. You aren't starting any medications, you aren't being given restrictions, nothing has changed for you except this fantastic (and might I repeat... FANTASTIC) bit of information which is going to allow you to continue to be smart about your health. Please look at it as helpful, not as a curse. You really don't have to consider yourself a heart patient. You may never be a heart patient! Because I went to too many rock'n'roll concerts 30 years ago and will probably someday have some hearing loss, am I going around calling myself deaf?? Of course not! So sit back and shrug your shoulders and think, ah well, I'm not as perfect inside as I am outside!! Whatever!!! :wink2: Nobody can see that part anyway!
It's the weekend. Get a babysitter. Go out with your wife to some nice public place so that she can't "read" you quite as well with all the distractions around you. Tell her. Let her learn with you. Let her reassure you. Let her love you. She wants to -- that's why she chose you.
:thumbup: Marguerite
Roxx_yer_Soxx
Well-known member
Thanks for another awesome post sweetheart.... you make me sound like I'm "Vanity Smurf"..... holding a mirror and running my fingers through my hair all day......I haven't done that for 2 years!!
(just kidding)Beautiful people come in all shapes/sizes/colors/and backgrounds.... whats inside counts the most..... and with that said, in this forum I am surrounded by the best there is.
Getting old, losing muscle tone....and perhaps a nice size scar on my chest.....NO BIG DEAL!! Gray hair? Bring it on.
I just want a nice long healthy life, grow old with my wife, raise my kids, and watch my kids have families.
Just normal stuff..... you know.... be a good husband, and a good dad.
I'm sure this will all work out, I just need to relax, and be rational.
Marguerite summed it up very well. I have known that I have a BAV for about 20 years. It is something like 50% of people with BAV never need any type of intervention. In my opnion it is best that my spouse knows about it. By having this knowledge, you are more on top of your health and will not be blindsided by problems down the road (because you are being checked on a regular schedule). About 10 years ago I stoped geting checked mostly due to lack of medical insurance, so it was a shock that 2 years ago showed that I had developed an aneurysm and start of aortic stenosis. I do not miss my check ups now!! I think the bigest lesson here is that even though you have a BAV and a aortic root at the upper end of normal, there is a good chance that nothing will ever need to be done about it, so go on and enjoy life with your wifes support.
Marguerite53
Premium Level User
Yes. And I think we are all trying to get you back to the normal stuff, Roxx. You are understandably (we've been here, done that!) wrestling with the severity, longevity, tenuousness of your "new" diagnosis. Who the heck asked for this to happen?? What the...... what does all this mean, anyway. What does it look like?? Why can't I control what is happening to me?
Would more knowledge be helpful for you? There is a phenomenal amount of information "out there" that you could start gathering on your particular status. Some of us just can't stop reading about all the medical nuances of everything about our condition. I, for one, was very very curious. But I have no aptitude for understanding as deeply as I wanted/needed to and finally just gave up and learned to trust the doctors (I mean they are trained and paid pretty well). Four and a half years out of surgery -- I'm very glad that I trusted them!! I am better than new!!
So maybe you need to ask more questions here, if there is something particular that you are curious about -- start a new thread! And then maybe you need to do a little Googling and read and read and get confused and frightened (oh, we've all done this!!) and angry. And then, after awhile (which may be why you finally came here) you'll figure out that you're a bit like a cat chasing its tail..... you're spinning around but you're really not getting anywhere. And then, maybe you'll realize that if you let go of that stuff that is driving you a little out of your mind; if you just toss it in a paper bag and throw it away, or put it inside a helium balloon and let the wind take it away in the sky -- then you'll feel a lot better. You will have simply accepted it, woven it into your newly informed consciousness, and can go about your day to day undaunted; protected by the knowledge that you know what you must do to take care of yourself.
It's not easy. You have to choose to let go. Maybe your wife could help you with that?
M
Would more knowledge be helpful for you? There is a phenomenal amount of information "out there" that you could start gathering on your particular status. Some of us just can't stop reading about all the medical nuances of everything about our condition. I, for one, was very very curious. But I have no aptitude for understanding as deeply as I wanted/needed to and finally just gave up and learned to trust the doctors (I mean they are trained and paid pretty well). Four and a half years out of surgery -- I'm very glad that I trusted them!! I am better than new!!
So maybe you need to ask more questions here, if there is something particular that you are curious about -- start a new thread! And then maybe you need to do a little Googling and read and read and get confused and frightened (oh, we've all done this!!) and angry. And then, after awhile (which may be why you finally came here) you'll figure out that you're a bit like a cat chasing its tail..... you're spinning around but you're really not getting anywhere. And then, maybe you'll realize that if you let go of that stuff that is driving you a little out of your mind; if you just toss it in a paper bag and throw it away, or put it inside a helium balloon and let the wind take it away in the sky -- then you'll feel a lot better. You will have simply accepted it, woven it into your newly informed consciousness, and can go about your day to day undaunted; protected by the knowledge that you know what you must do to take care of yourself.
It's not easy. You have to choose to let go. Maybe your wife could help you with that?
M
Hi Roxx,
First, I think you should have already told your wife.
Wife and I don't have keep anything from each other, been that way for over 54 years.
I was diagnosed with Aortic Stenosis in 1981 at age 46. But didn't have an enlarged Aortic root. My cardiologist said surgery would be needed in about 10 years. I had no symptoms other than a noisy valve. I was jogging 3 miles a day and had been for years. I continued to jog or walk every day for the next 10 years. I told everyone, didn't see it was anything to hide. Never gave it too much thought but continued to have annual echoes.
Surgery turned out to be more than I planned but guess that was good in some ways.
I wish you the very best.
First, I think you should have already told your wife.
Wife and I don't have keep anything from each other, been that way for over 54 years.
I was diagnosed with Aortic Stenosis in 1981 at age 46. But didn't have an enlarged Aortic root. My cardiologist said surgery would be needed in about 10 years. I had no symptoms other than a noisy valve. I was jogging 3 miles a day and had been for years. I continued to jog or walk every day for the next 10 years. I told everyone, didn't see it was anything to hide. Never gave it too much thought but continued to have annual echoes.
Surgery turned out to be more than I planned but guess that was good in some ways.
I wish you the very best.
I can identify with Lyn. I was 25 (1987) when the doctors eventually diagnosed my BAV. I was probably at my peak fitness. I used to train (run) to the maximum. When the doctor said I had a heart problem it was as if my whole world was about to collapse. I did not know what to say to my family so I went to see a friend first.When I told my family they were pretty well pragmatic about it - just as if it was a normal daily occurrence. I do also remember thinking "what will other people say when I have a big scar down my chest". I had my operation early this year (23 years after diagnosis) and I presently swim and run every day and no one bats an eyelid with the scar.
I took it easy for a few years after diagnosis then started competing again (almost back to normal). The only time I would really think about the BAV was when I was due for my yearly hospital check up. The rest of the time it was back to normal. I did not keep it a secret but I think a lot of people who knew me from running did not know I had this heart defect/problem or if they did find out would say "should you not be at home taking it easy?" - then they would promptly forget about it!.
I am really glad I made the decision to carry on as normal as I would have missed out on a lot of great personal achievements and would have hated to be in a position of saying to myself "If only I had of done this ... or I wish I had done that when I was younger...!"
All the best
Martin
You should watch these presentations:
http://www.streamingmeeting.com/webmeeting/rillahan/aats/2010/toc.html#
should be helpful.
http://www.streamingmeeting.com/webmeeting/rillahan/aats/2010/toc.html#
should be helpful.
Roxx_yer_Soxx
Well-known member
Thanks Gregory,
And to answer your question in the private forum, I am 5'11, 182lbs (this fluctuates between 180-193-ish depending on if I am focusing more on cardio or lifting)
I am one of those that with say dress clothes on, people guess me to be 170lbs.... when I have a tank top & shorts on, people will say 190lbs. I am muscular, but not like hulking huge muscular..... more like the body of a gymnast for example.
No chance that I have Marfans...... I was 5'6 when I graduated high school.... grew 5 more inches later.
