S
Sean L
Thanks
Thanks
All of you are such an inspiration. Thanks for uplifting me with your comments.
Sean L
Thanks
All of you are such an inspiration. Thanks for uplifting me with your comments.
Sean L
Help Support Valve Replacement Forums:
G
geebee
Sean,
It's been 28 years since my first surgery. I was 28 at the time and am 56 now so I have doubled my life. I fully expect at least another 28 years (God willing) and hopefully more. It is also my expectation that something else will "get" me not related to my heart valve. I have also been on coumadin for those 28 years.
It's been 28 years since my first surgery. I was 28 at the time and am 56 now so I have doubled my life. I fully expect at least another 28 years (God willing) and hopefully more. It is also my expectation that something else will "get" me not related to my heart valve. I have also been on coumadin for those 28 years.
I know this doesn't actually go with the flow (or glow) of the rest of the thread...and I don't exactly don't know why I feel this way...but since my surgery I don't fear death nearly as much as I used to. And don't get me wrong...I feel better now, I'm in better shape now, and I'm more athletic now than I've been in probably 15 years (at the ripe old age of 47). But I think once I faced life threatening endocarditis, beat that, then made it through a 6 hour long surgery in which my surgeon tried to repair my valve and then went ahead with the Ross Procedure, I feel like I came to grips with my mortality. Granted I don't have a wife and kids, but after going through 2+ really tough years with the endocarditis, surgery, and sternum complications...I feel like maybe there is a reason I'm still here. And whether I live to be 50, 70, 90, or any age in between I'm going to take advantage of that time, because without the intervention of some very good doctors there is a good chance I wouldn't have seen 50 much less 47. My suggestion is to do what you need to do to successfully recover from your surgery and then live life to its fullest. Do not...and I mean do not be lax with your followups. I get annual followups (with echo) with the ACHD cardiologists at Duke where I had my surgery.
I know this post has kind of rambled from "I don't fear death anymore" to "make sure you get regular checkups". I guess what I'm trying to say is while I don't fear death anymore I don't have a death wish either. I'm just sharing off the top of my head how I feel about life and death after going through surgery. I guess the main point I am trying to make is that my illness and subsequent surgery put me more in touch with my mortality. I honestly don't worry anymore if I will live to be 60 or 100 (give me 80 and I will be tickled to death
). I absolutely thought and worried more about my mortality before I found out I needed surgery than after the surgery. But then again some people have told me that I'm one fry short of a happy meal.
I know this post has kind of rambled from "I don't fear death anymore" to "make sure you get regular checkups". I guess what I'm trying to say is while I don't fear death anymore I don't have a death wish either. I'm just sharing off the top of my head how I feel about life and death after going through surgery. I guess the main point I am trying to make is that my illness and subsequent surgery put me more in touch with my mortality. I honestly don't worry anymore if I will live to be 60 or 100 (give me 80 and I will be tickled to death
). I absolutely thought and worried more about my mortality before I found out I needed surgery than after the surgery. But then again some people have told me that I'm one fry short of a happy meal. 
Sean,
I had an aortic valve replacement in 1992 1 was 31 ,im
47 now and id do it again if i had to,the coumadin for life has
been a pleasure and i would't have it different. I never had the chance of having the vr site so i went through alot of denial and fear in 1992,answers
my husband didnt have and when my surgery was over i had no idea till
then that i was to be on coumadin for life,the doctors told me in march that i wouldnot live to see the end and march 24th my surgery was bumped up as i got sicker. Ive kept a diary of all events from the day the doctor found
my murmer and all the letters for appts. then the surgery and all my writing and mortality was big for me in my diary,i feel its so normal for all of us.
But i wouldnot be here this long and i have that to be thankful for and my family also had to go through alot in their journey with this in their own different way,the hardest possible event my husband did endure. Its a big hurdle we all endured together,but a worthy hurdle and i thank God for all
The packrat i am i kept everything even the original reciept for all my hospital needs i purchased and pictures of heart surgery and just the cutest little cards my husband made me everyday on the computer,little drawings the surgeon made to show me what was wrong with my heart valve and i kept it all and im so happy cus now i go back and review all this stuff and WOW can i relate to how we all were feeling just plain FEAR cus we really didnt have this site to lean on and i was in denial so i wouldnt hear what the Dr's were saying to me,I took on three jobs just to not deal with the issues of it,it was my husband who stopped me in my tracks and woke me up to reality i was killing myself more till i had to be taken in for surgerythe 24th of march i was pushing it when they said id only live till the end of march.But sean you too are going to be fine and your gonna be here for along ,long time,you have the site for any questions and no questions are silly.....JUST ASK theres a great group of people here to assist you with answers.
All the best to you in your surgery and prayers out to you also
zipper2
I had an aortic valve replacement in 1992 1 was 31 ,im
47 now and id do it again if i had to,the coumadin for life has
been a pleasure and i would't have it different. I never had the chance of having the vr site so i went through alot of denial and fear in 1992,answers
my husband didnt have and when my surgery was over i had no idea till
then that i was to be on coumadin for life,the doctors told me in march that i wouldnot live to see the end and march 24th my surgery was bumped up as i got sicker. Ive kept a diary of all events from the day the doctor found
my murmer and all the letters for appts. then the surgery and all my writing and mortality was big for me in my diary,i feel its so normal for all of us.
But i wouldnot be here this long and i have that to be thankful for and my family also had to go through alot in their journey with this in their own different way,the hardest possible event my husband did endure. Its a big hurdle we all endured together,but a worthy hurdle and i thank God for all
The packrat i am i kept everything even the original reciept for all my hospital needs i purchased and pictures of heart surgery and just the cutest little cards my husband made me everyday on the computer,little drawings the surgeon made to show me what was wrong with my heart valve and i kept it all and im so happy cus now i go back and review all this stuff and WOW can i relate to how we all were feeling just plain FEAR cus we really didnt have this site to lean on and i was in denial so i wouldnt hear what the Dr's were saying to me,I took on three jobs just to not deal with the issues of it,it was my husband who stopped me in my tracks and woke me up to reality i was killing myself more till i had to be taken in for surgerythe 24th of march i was pushing it when they said id only live till the end of march.But sean you too are going to be fine and your gonna be here for along ,long time,you have the site for any questions and no questions are silly.....JUST ASK theres a great group of people here to assist you with answers.
All the best to you in your surgery and prayers out to you also
zipper2
U
upchurch131
Longevity
Longevity
Boy Shawn- you hit my fears on the head! Even though I've known about my BAV for nine years, the day they told me its time for surgery, I became acutely aware of my own mortality. I, like most, fear the unknown. Add to this the loss of control of ones destiny and the fear wells up day after day. I have yet to experience the surgery- I'm waiting for my surgical consult. I not only fear the valve replacement, I fear making the right choices and the longevity of the dacron conduit to replace my worn out aorta. Just how long will these things last?
I'm so thankful to have found this wonderful forum, sharing experiences and concern for each other. We'll just have to learn on each other!
Longevity
Boy Shawn- you hit my fears on the head! Even though I've known about my BAV for nine years, the day they told me its time for surgery, I became acutely aware of my own mortality. I, like most, fear the unknown. Add to this the loss of control of ones destiny and the fear wells up day after day. I have yet to experience the surgery- I'm waiting for my surgical consult. I not only fear the valve replacement, I fear making the right choices and the longevity of the dacron conduit to replace my worn out aorta. Just how long will these things last?
I'm so thankful to have found this wonderful forum, sharing experiences and concern for each other. We'll just have to learn on each other!
Rick
Well-known member
My thoughts
My thoughts
Sean,
I am 38 and also have bicuspid aortic valve with moderate-severe regurgitation. 3 years ago it was mild and I was told it´d last til I was old. Three months ago I was told to expect surgery in roughly 5 years. Today, they redid an echo to track progresssion .. now they tell me ¨maybe a year or two¨.
I think it is hard to make individual predictions on these sorts of conditions. The literature I have read states statistical data whereby we have a decreased life expectancy, roughly half of what we would otherwise have left...my own thoughts on this are that though this may be true on average, it is our job to try to be in the group that is alive after 40 years (and therefore be able to post responses on this site....the dead cannot post their stories or reply emails so we get a biased sample, though they are inspiring to me too). Second, someone wrote here earlier about confronting your own mortality.... and that is something important too because one can live a better life from hereon out and that is also very important. This is something I am working on from a spiritual-religious perspective and ideally, I would like to get to a place where I am not so afraid of dying (an earlier post from someone else discussed his experence with this.. that is real peace). Death happens to all of us and sometimes I am glad to have had an upfront warning versus others who suffer a sudden heart attack or die in an accident because I can live better whatever time I have.
I hope this is not discouraging in any way ...it is just how I am dealing with the realities of this condition in as positive manner as I can, without avoiding looking at real information and focusing on doing what I can, medically and spiritually. I hope I get to a place of not being scared, but I have gone from panic to scared, which is an improvement.
Best,
Rick
My thoughts
Sean,
I am 38 and also have bicuspid aortic valve with moderate-severe regurgitation. 3 years ago it was mild and I was told it´d last til I was old. Three months ago I was told to expect surgery in roughly 5 years. Today, they redid an echo to track progresssion .. now they tell me ¨maybe a year or two¨.
I think it is hard to make individual predictions on these sorts of conditions. The literature I have read states statistical data whereby we have a decreased life expectancy, roughly half of what we would otherwise have left...my own thoughts on this are that though this may be true on average, it is our job to try to be in the group that is alive after 40 years (and therefore be able to post responses on this site....the dead cannot post their stories or reply emails so we get a biased sample, though they are inspiring to me too). Second, someone wrote here earlier about confronting your own mortality.... and that is something important too because one can live a better life from hereon out and that is also very important. This is something I am working on from a spiritual-religious perspective and ideally, I would like to get to a place where I am not so afraid of dying (an earlier post from someone else discussed his experence with this.. that is real peace). Death happens to all of us and sometimes I am glad to have had an upfront warning versus others who suffer a sudden heart attack or die in an accident because I can live better whatever time I have.
I hope this is not discouraging in any way ...it is just how I am dealing with the realities of this condition in as positive manner as I can, without avoiding looking at real information and focusing on doing what I can, medically and spiritually. I hope I get to a place of not being scared, but I have gone from panic to scared, which is an improvement.
Best,
Rick
sandpoet
Member
Sean- AVR and lifespan
Sean- AVR and lifespan
Sean-
I had two AVR's in 2008(1st valve failed due to bacterial endocarditis) I also had a hole in my heart from the infection. I have been in excellent health since the last surgery(July 2008), hiking, biking and serious weight-lifting. My doc says that I will probably live a long life, no different then I would have w/o a bad valve. I am 59 and have 7 & 9 year old children. I expect to live to see them graduate college, maybe marry, but doubt ever seeing my grandchildren. The chances of dying from a failed valve are low, more likely from a blood clot or bacterial endocarditis. I have a fib, too, which puts me at risk, although the warfarin will control any clot. I requested discontinuing the Afib drug after consulting with other heart specialists saying I had a risk of sudden heart death on the Tykosyn. I am allergic to Ameridion, but would take other meds, if the Afib caused problems. I hope this helps. Live long and don't fret; that would kill you quicker then a valve failure! Take care and get back the zest for life, David
Thank you so much for telling me about your husband. This gives me hope that I may live to see my two sons marry and have grandchildren. (They are only 5yr and 5 mos old now).
Sean L.[/QUOTE]
Sean- AVR and lifespan
Sean-
I had two AVR's in 2008(1st valve failed due to bacterial endocarditis) I also had a hole in my heart from the infection. I have been in excellent health since the last surgery(July 2008), hiking, biking and serious weight-lifting. My doc says that I will probably live a long life, no different then I would have w/o a bad valve. I am 59 and have 7 & 9 year old children. I expect to live to see them graduate college, maybe marry, but doubt ever seeing my grandchildren. The chances of dying from a failed valve are low, more likely from a blood clot or bacterial endocarditis. I have a fib, too, which puts me at risk, although the warfarin will control any clot. I requested discontinuing the Afib drug after consulting with other heart specialists saying I had a risk of sudden heart death on the Tykosyn. I am allergic to Ameridion, but would take other meds, if the Afib caused problems. I hope this helps. Live long and don't fret; that would kill you quicker then a valve failure! Take care and get back the zest for life, David
Thank you so much for telling me about your husband. This gives me hope that I may live to see my two sons marry and have grandchildren. (They are only 5yr and 5 mos old now).
Sean L.[/QUOTE]
Agian
Well-known member
This doesn't sound right.:eek2:
mbeard
Well-known member
I am one of the ones who just got the diagnosis of BAV and enlarged aorta do 4.2. I found out in August . I was 58. I did not know that I had a BAV and the echo tech was shocked that I had gotten to here now, without this being detected.
The surgeon wants to wait and watch to see if the Aneurysm grows.
I know how you feel about your mortality. I also have to tell myself that this is the only life I have...this is no dress rehearsal. I am not going to be able to go back and relive any of these days when things get better, ie my heart gets fixed.
I know there are stats to look at, and when I absolutely have to, I will, but I am trying hard to seize the day.
The surgeon wants to wait and watch to see if the Aneurysm grows.
I know how you feel about your mortality. I also have to tell myself that this is the only life I have...this is no dress rehearsal. I am not going to be able to go back and relive any of these days when things get better, ie my heart gets fixed.
I know there are stats to look at, and when I absolutely have to, I will, but I am trying hard to seize the day.
Agian
Well-known member
I agree with you. But I don't think Rick's stats are accurate. Or, at least I hope they're not. But then again, he wrote this in 2008.
John & Joann
Well-known member
[/QUOTE]
You might have the doctor consider Sotol (Betapace) to control the At. Fib. Joann had great success with this medication until the past few years. Her AFib is now more of a significant issue. Normal in the morning, but pulse goes to 100 in just a few minutes.
"I think it is hard to make individual predictions on these sorts of conditions. The literature I have read states statistical data whereby we have a decreased life expectancy, roughly half of what we would otherwise have left..."
I don't agree with this "literature." It directly contradicts what I was told by my surgeon, who is, in his own words, ". . . the number 2 man for this procedure in the country." Dr. McCarthy told me that my life expectancy after valve replacement would be ". . . the same as it would have been if you had never needed the valve replacement in the first place." One of these two sources must be in error, and you can guess who I side with.
I don't agree with this "literature." It directly contradicts what I was told by my surgeon, who is, in his own words, ". . . the number 2 man for this procedure in the country." Dr. McCarthy told me that my life expectancy after valve replacement would be ". . . the same as it would have been if you had never needed the valve replacement in the first place." One of these two sources must be in error, and you can guess who I side with.
Sean, reading your posts are like looking into a mirror for me. In 1967 I was 31, had two sons ages 6 and 8, had to be reopened to stop bleeding and my docs told me I could live a normal life afterward. I didn't believe them then but I do now. I just turned 72. I have not only seen my four grandchildren grow up, but now I have seen a great-grandson born. A lot of "normal" people of my generation have died without seeing great-grandchildren born.
I have been told by my current docs that sooner or later I will die of something, but it probably will not be my heart valve.
Do yourself a favor and, as hard as it is sometime, do not dwell on a distant future time.
This thread was started by Sean six years ago in 2008. Longevity of life is the KEY question for most of us. My answer to his 2008 question hasn't changed much...except I just turned 78, which, according to what I read, is normal life expectancy in the US...and I now have three great-grandchildren....and my golf game still "sucks", but as they say, "I am still looking DOWN at the grass".
I actually think my "life expectancy" has nearly DOUBLED...my docs, in1966, told me I would not live to age 40 without corrective surgery and now I'm pushing 80.
With a lot of hindsight I can assure you that it does no good to dwell on the "longevity question".
clay_from_nj
Well-known member
Going further along the path that Steve started, I would submit that there is a good chance that we will live longer than average, if you consider that most of us are more aware of our hearts' condition than most people and eat better, exercise more, have other stuff that we didn't even know we had promptly fixed, and live an overall healthier lifestyle than most. What do most people die of? A heart attack? Caused by something they didn't even know they had?
"What do most people die of? A heart attack? Caused by something they didn't even know they had? "
Like a piece of frozen pee pee falling off an airplane? :eek2:
Or maybe a garbage truck with failing brakes...
I live each day as if it might be my last. Tell the ones you love that you love them. Don't stay mad at people or things that jerk your chain. Don't worry be happy, you got another chance with a mended heart. :biggrin2:
Like a piece of frozen pee pee falling off an airplane? :eek2:
Or maybe a garbage truck with failing brakes...
I live each day as if it might be my last. Tell the ones you love that you love them. Don't stay mad at people or things that jerk your chain. Don't worry be happy, you got another chance with a mended heart. :biggrin2:
MarkU
Well-known member
Before my AVR, my cardiologist said I had a three year life expectancy if I didn't have the surgery. That was 13 years ago, so I figure I'm 10 years into "bonus time".
In that ten years I've seen both my kids graduate from college and pursue successful careers. I've also been able to walk my daughter down the aisle when she got married two years ago.
I went back to my 40th high school reunion a couple of years ago and learned that over 30 people from our class of 600 had died. Most common causes were cancer or accidents. Ironically none due to heart issues.
Of my surviving classmates, I was one of the most physcially active with my triathlon activities.
I have no complaints.
Mark
In that ten years I've seen both my kids graduate from college and pursue successful careers. I've also been able to walk my daughter down the aisle when she got married two years ago.
I went back to my 40th high school reunion a couple of years ago and learned that over 30 people from our class of 600 had died. Most common causes were cancer or accidents. Ironically none due to heart issues.
Of my surviving classmates, I was one of the most physcially active with my triathlon activities.
I have no complaints.
Mark
