vr.com & personal convictions

[Wise]

I have been convinced of my personal decision for some time, in case I ever have to have a first surgery. That is based totally on doing all I can to avoid a second surgery. That's my conviction. I can't say I'm up on the latest research. Nor can I say that statistics mean nothing to me. But, in my studies here at vr.com, I've learned that there are so many variables specific to each individual that can render statistics meanningless when push comes to shove. Most of my "research" has been conducted right here. However, when I have done searches regarding surgery risks, I'd have to say that I have encountered more information supporting avoidance of second surgeries. That's what I have to go on.

I've posted about my brother before. He had two BAV replacement surgeries (Ross Procedure, then 7 years laters, mechanical). He wasn't expected to survive either surgery, but he did. However, he died seven months after the second surgery. I strongly suspect that he had connective tissue disorder and that the second surgery was so extensive as to include artificial veins and partial root replacement. His official cause of death was COPD, which I doubt, but I can't prove that.

I came here after learning that I have a BAV; I learned this almost a year after my brother's death. I was scared to death, to be honest. Finding this forum was a life saver to me...I was not coping with my brother's death very well (having lost my other brother three months earlier). Then to find out I had the same condition, well it was frightening. VR.com, and God, is responsible for me being a mostly sane person now. I needed a place to get grounded in the facts. I now understand that I'm not about to fall over dead or that a surgery for me would be as difficult as my brothers'.

I'm saying all of this to reiterate (because it isn't a secret) that vr.com is life changing. If I never have surgery, I've already been helped so much here. I know that many vr members have strong opinions and rightly so. I've just relayed the basis for mine. When you see new members come in, you don't always know everything about them; not everyone blabs on like this. One thing you do know is they need you or they wouldn't be here. So, here's to all schools of thought in the valve disease, valve replacement arena and to their provocative but peaceful coexistance.

Thanks for putting up with this....but, it helps me to put in writing.

Wise

 

[geebee]

Thanks for writing your thoughts and sharing them. It is important to hear such information.

 

[Mary]

Wise,
I'll drink to that!

 

[Nancy]

Wise-

Thanks for sharing the personal side of life here. That's what makes this such a wonderful site.

 

[hensylee]

Thank you, Wise, for sharing your thoughts and feelings with us. This is what VR is all about. Where else in the world can we go and say things like this and express our appreciation in such a wonderful way - to each other. Heart surgery is a life changing event - all of us know that and have said so in so many different ways right here. It's just nice to hear it again. Your mother/father named you properly. You are - very.

 

[bvdr]

Hi Wise, Your post brought a few tears to my eyes because I think that is the bottom line for many of us that frequent this site. We found the site because we were in need and stay because we know how important it has been to us and to new people as well. I appreciate you being here and hope you stay around for a long time.

 

[CCRN]

Hi

I am sorry to hear of your loss. Your sharing means a lot to me. I get support every time I log on to this site. It's really heart lifting to know you can get a word from someone who's been where you are just at your fingertips. We are all blessed to have each other and Happy New Year to you too.

 

[MarkU]

Whenever I start feeling sorry for myself, I remind myself that my doctor told me I had less than three years to live if I didn't have AVR surgery. That was five years ago - I'm on bonus time now! It's also why trivial things don't bother me much anymore...

 

[Wise]

Whenever I start feeling sorry for myself, I remind myself that my doctor told me I had less than three years to live if I didn't have AVR surgery. That was five years ago - I'm on bonus time now! It's also why trivial things don't bother me much anymore...

What a bonus! I hope there are many more bonuses to come for you.

 

[Guest]

Interesting read, Mr. Wise .

I always find the "debates" on here, especially those regarding valves, as humorously interesting. Yes, you read that correctly.

I've always felt it odd that we call what doctors do "practice". To that end, while I know there are stauch supports of just about every "way to treat" a valve-related condition, each way presents unique positives and negatives for each _individual_ person. One "right" way is not for all.

Course, on another level, I've found them interesting because I've never had an option for a valve. The surgeon has always just told me what he's going to put in. Obviously, I wasn't exactly of "decision age" during my first surgery in 1977 (I was still a baby, then ... and not an adult baby, either). My second surgery was in 1987, while I was in middle school, so my attitude then was...let's get this overwith ... whoopie....out of school for a while. During my last surgery (Jan 2003), while I was of "decision age" ... the surgeon didn't really feel there was much of a decision....so, I went with his original suggestion ... so far, so good.....


Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"I can?t take anymore" ... 3rd Eye Blind ... 'How's It Going To Be'

 

[Geo]

Wise,

I am so glad that you shared your story. This web site is truly amazing for bringing together people in need of answers and of sharing and expressing some tough times in our lives. To know that we are not alone in this world and to be supported and encouraged is truly a blessing.

Hang in there.

George

 

[aussigal]

Wise by name and nature ...


and a Very Happy New Year to you too

 

[maka]

KNIGHFAN
What a courageous young man you must be. Too young for so many operations. Is that the reason your profile says "I cant' take anymore?
I certainly hope this one is the last one and that from now on you live a healthy and happy life...you deserve it

 

[Wise]

Interesting read, Mr. Wise .

I always find the "debates" on here, especially those regarding valves, as humorously interesting. Yes, you read that correctly.

I've always felt it odd that we call what doctors do "practice". To that end, while I know there are stauch supports of just about every "way to treat" a valve-related condition, each way presents unique positives and negatives for each _individual_ person. One "right" way is not for all.

Course, on another level, I've found them interesting because I've never had an option for a valve. The surgeon has always just told me what he's going to put in. Obviously, I wasn't exactly of "decision age" during my first surgery in 1977 (I was still a baby, then ... and not an adult baby, either). My second surgery was in 1987, while I was in middle school, so my attitude then was...let's get this overwith ... whoopie....out of school for a while. During my last surgery (Jan 2003), while I was of "decision age" ... the surgeon didn't really feel there was much of a decision....so, I went with his original suggestion ... so far, so good.....


Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"I can?t take anymore" ... 3rd Eye Blind ... 'How's It Going To Be'

Cort, you certainly do have a good attitude. We need those who can find the humor in sometimes less than humorous situations. I didn't really start this thread to just tell about me; I guess how you find humor...which is great...in the same way I find reflection about what's important. My wife would laugh because although I can be too serious, I can be too silly also. Now, just because I go on like this in writing doesn't mean you'd two words out of me in a face-to-face conversation. Keep smiling.

"Keep on Smiling" ... Wet Willie ... "Keep on Smiling" (not a good effort, I know, but in your honor Cort)

 

[epstns]

Wise,
I personally appreciate your story. Mine is similar, but different. While I do not have anything in my history that would point me toward or away from multiple surgeries, I agree that I would prefer to have the odds in favor of only one trip to the OR for valve surgery.

The similarity I feel is that of bearing the weight of an inherited condition. While I cannot be sure, I suspect that my father may have had an untreated bicuspid valve. He passed away at age 68 from a first coronary -- but the paramedics reported that when they arrived at the scene dad was lucid and able to converse with them. Once he arrived at the ER, his heart simply stopped. Could this have been Sudden Cardiac Death? Don't know -- too long ago (almost 20 years) to ask. I did know his doctors, and I wouldn't have sent my dog to them. . .

There are also several other members of dad's immediate family who died from CHF (they thought) or abnormal heart rhythm problems -- could these have been brought on by untreated BAV and aortic stenosis? We'll never know, as they, too died decades ago.

So, Wise, I carry with me the anxieties and fears of one who has watched others suffer and die from what appears to be the same condition affecting me. I feel very strongly, though, that my friends and extended family here at vr.com have equipped me to do a much better job of protecting my health. I also know that the quality of medical care available to many of us is nothing short of miraculous, and I am lucky enough to have a wonderful care team and good insurance. Above all, I realize that it is not all in my hands, and that we are all being watched and protected by our Creator.

Thanks again.

 

[Wise]

Wise,
I personally appreciate your story. Mine is similar, but different. While I do not have anything in my history that would point me toward or away from multiple surgeries, I agree that I would prefer to have the odds in favor of only one trip to the OR for valve surgery.

The similarity I feel is that of bearing the weight of an inherited condition. While I cannot be sure, I suspect that my father may have had an untreated bicuspid valve. He passed away at age 68 from a first coronary -- but the paramedics reported that when they arrived at the scene dad was lucid and able to converse with them. Once he arrived at the ER, his heart simply stopped. Could this have been Sudden Cardiac Death? Don't know -- too long ago (almost 20 years) to ask. I did know his doctors, and I wouldn't have sent my dog to them. . .

There are also several other members of dad's immediate family who died from CHF (they thought) or abnormal heart rhythm problems -- could these have been brought on by untreated BAV and aortic stenosis? We'll never know, as they, too died decades ago.

So, Wise, I carry with me the anxieties and fears of one who has watched others suffer and die from what appears to be the same condition affecting me. I feel very strongly, though, that my friends and extended family here at vr.com have equipped me to do a much better job of protecting my health. I also know that the quality of medical care available to many of us is nothing short of miraculous, and I am lucky enough to have a wonderful care team and good insurance. Above all, I realize that it is not all in my hands, and that we are all being watched and protected by our Creator.

Thanks again.

Steve, my dad died of CHF (so they say). I'm the last male in my immediate family. But, just as you say, I'm much better equipped because of vr.com. I have a great and compassionate cardiologist and still fortunate enough to have good insurance. Yes, I too have to leave it in our Creator's hands ultimately. However, I hope I don't appear to still be terrified. I'm much better than that...I'll save the fear for when it matters.

 

[Wise]

I very much appreciate all of the kind and supportive words expressed in this thread. I know you are wonderful people, and am still amazed at your heart.

Very important to me is knowing that all of the vr.com veterans be appreciated and respected for all they have done for us. This is really the motivation behind this thread, although not obvious. I said a lot about me, but it was only to demonstrate how I came to be where I'm currently at in my convictions.

Again, you gals and guys are wonderful and I consider you friends and family.

Wise

 

[Natanni]

Wise and Epstns--just wanted to add Nathan's Dad to the list....he is post heart transplant for cardiomyopathy, and at the time of surgery, he was having significant CHF. They felt "virus" was the culprit, but this was also back in 1990. Nathan now has "cardiomyopathy" riding around on his chart as well....

Side note--LOVE the new puppy picture!

 

[Wise]

Wise and Epstns--just wanted to add Nathan's Dad to the list....he is post heart transplant for cardiomyopathy, and at the time of surgery, he was having significant CHF. They felt "virus" was the culprit, but this was also back in 1990. Nathan now has "cardiomyopathy" riding around on his chart as well....

Side note--LOVE the new puppy picture!

I've heard of people becoming their mother...or their father...but this is a new twist in becoming your parents, isn't it.

About the picture, it's my favorite of them...and the dog is better looking than me.

 

[aussigal]

I wouldnt mind being like my dad so much either if it didnt include this dodgy aortic-stuff...which I unknowingly passed on to 2 of our boys...



How blessed we all are to have found VR.com


your home-support group there look pretty loveable too !