Marcia58
Well-known member
My cardiologist told me, "The day will come when the benefits (of surgery) outweigh the risks. When that day arrives, it's time for surgery."
Can't sleep wondering if we have made the right decision
- Thread starter BarbJean
- Start date
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jake
Well-known member
Listen Brother I will give you a little tough love. I am purposely not reading the other posts because I feel VERY strongly on your post. The only difference between you and me is that I have to make the decision for my surgery, your making it for someone else. Bear in mind, your not making it alone, so don’t shoulder the load yourself! Your doctor said its your call, not that you shouldnt do it.
Secondly, it has grown from 4.1 to just over 4.5 in just 13 months! HELLO! This, to me, seems a NO BRAINER! That rate of growth, in my mind, makes the decision easy for you. If not the size, the rate of growth should be sending up red flags all over the place!
Sometimes, it really sucks being the one everyone is looking to have the final word. Your fears and concerns are fair and reasonable, HOWEVER, you are the person charged with making that decision and if you have chosen to move forward in a situation where a doctor has thrown the decision in your lap as a 50/50 toss up, than move forward with 100% confidence in your resolution. No matter the outcome, remember, you guys could walk out of the hospital without the surgery, get in your car, be hit by a SUV being driven by a drunk driver and kill you. Who’s going to take the blame for that? No one can! You made the decision to leave when you did but who could have seen that coming?
Listen, I feel your pain, I have decided to have an aorta replacement even though my doctor says I likely could hold out a few more years. But hold out for WHAT? An air bag to go off hit me in the chest and kill me? For some kid on a bicycle to accidently hit me while I’m skating in the park and rupture my aorta? For lightning to strike me again (ive been hit once already)? For a new health care system to decide that I can’t get a surgery until I reach a certain point? Sorry, that’s no way to live brother. You’re in a position where YOU can make the calls because it’s not an emergency. Once it’s an emergency, about 90% of your ability to make decisions just vanish into thin air! Other people get to make those decisions and you have to live with them. How will you feel if that happens?
I once heard a saying “the fear of death is far worth than death itself." To me, waiting for the unknown is far worse than the anxiety of an outcome you are failry shure of.
Make your call, stick to it, and don’t look back! You will ALWYAS have regrets, but life is not about regrets, it’s about doing what you think is best for you and your family. You would never do anything to hurt your son, so why second guess yourself? Whatever you do, God bless you and remember, its all in his hands anyway (at least thats what I think, opinions vary)!
Secondly, it has grown from 4.1 to just over 4.5 in just 13 months! HELLO! This, to me, seems a NO BRAINER! That rate of growth, in my mind, makes the decision easy for you. If not the size, the rate of growth should be sending up red flags all over the place!
Sometimes, it really sucks being the one everyone is looking to have the final word. Your fears and concerns are fair and reasonable, HOWEVER, you are the person charged with making that decision and if you have chosen to move forward in a situation where a doctor has thrown the decision in your lap as a 50/50 toss up, than move forward with 100% confidence in your resolution. No matter the outcome, remember, you guys could walk out of the hospital without the surgery, get in your car, be hit by a SUV being driven by a drunk driver and kill you. Who’s going to take the blame for that? No one can! You made the decision to leave when you did but who could have seen that coming?
Listen, I feel your pain, I have decided to have an aorta replacement even though my doctor says I likely could hold out a few more years. But hold out for WHAT? An air bag to go off hit me in the chest and kill me? For some kid on a bicycle to accidently hit me while I’m skating in the park and rupture my aorta? For lightning to strike me again (ive been hit once already)? For a new health care system to decide that I can’t get a surgery until I reach a certain point? Sorry, that’s no way to live brother. You’re in a position where YOU can make the calls because it’s not an emergency. Once it’s an emergency, about 90% of your ability to make decisions just vanish into thin air! Other people get to make those decisions and you have to live with them. How will you feel if that happens?
I once heard a saying “the fear of death is far worth than death itself." To me, waiting for the unknown is far worse than the anxiety of an outcome you are failry shure of.
Make your call, stick to it, and don’t look back! You will ALWYAS have regrets, but life is not about regrets, it’s about doing what you think is best for you and your family. You would never do anything to hurt your son, so why second guess yourself? Whatever you do, God bless you and remember, its all in his hands anyway (at least thats what I think, opinions vary)!
BarbJean
Well-known member
Thanks, I needed that! Today, I really do realize it is the best decision. I think sometimes I just get such an overwhelming sadness , not for me, but for him. I know we all love our kids, but he is just the sweetest guy. He never has given us an ounce of trouble and would never hurt a flea. I sometimes think I feel guilty having brought him into the world with a genetic disorder to deal with, yet I know he has had a great lifetime until now. Not once, does he ever feel sorry for himself, so I should not be doing that for him.
Becca, it must have been hard for you to go through that anguish with a toddler, but I am so happy your son is a thriving 8 year old now.
Becca, it must have been hard for you to go through that anguish with a toddler, but I am so happy your son is a thriving 8 year old now.
Barb, don't feel guilty for bringing him into the world with a disorder! Not only has he lived a full life to this point, he will after as well, so nothing to feel bad about! This is just a speedbump.
BarbJean
Well-known member
Thanks, Andy. I am now leaving to go with four girlfriends to see that new comedy "Cyrus". Just what I need. I did take an antianxiety med and I am feeling mellow and ready to laugh.
I will tell you right now that even though there are times I wish I didn't have my heart defects for a day, I would never, ever wish to be any other way. Because my experiences have shaped me into who I am and where my life has led me. I like who I am, and I love my life. How can I complain about a defect that led me to love reading and become a librarian to help others love to read as well? How can I complain about a defect that brought me here to VR (and other groups) where I've made some wonderful friends? How can I complain about a defect that led me to surrogacy and my two precious miracles? I can't. And I won't. So don't feel guilty. You didn't do anything to "cause" his defects and I'd be willing to bet he would be a different kid without them.
jake
Well-known member
Hey, once more, I can speak from real world experience. Wouldn’t it be great to be able to get into the shoes of your kid and see the world through his eyes?
Well, let me take you through the mindset of the child who has to go through this. My parents, both are healthy, no heart problems, and I am the youngest of 3. Being the baby of the family, I enjoy the "perceived most favored" status as far as my brothers are concerned. When I was diagnosed with this bi-cusped valve and aortic aneurism, my parents were horrified! They felt responsible. The first thing my mom told me was "I don’t understand, you were the only one that I DIDNT smoke while I was pregnant with." Keeping in mind, we are talking about 1965 when no one gave much thought to smoking while pregnant.
My parents felt that they were responsible for my condition especially my mom. I had to make sure that they knew, it’s not their fault! This illness is a GIFT! Not a CURSE! How can it be a gift you say? Now you get to see who you REALLY are, and your child, if he is the strong, wonderful and smart kid you know him to be, will take this in stride as it sounds like he is. He will get the benefit of living through this experience and have that scar to wear as a badge of courage and honor! He will now and forever be known as a warrior and have the trophy to prove it like most everyone on this forum has and I soon will have! You will all take pride in the fact that that warrior came out of you! You built him. You didn’t force him into this battle, but he will have the last word and your pride will be overwhelming when he comes out the other end triumphantly. Hockey players only get to hold Lord Stanleys cup, your kid will have his trophy to keep with him forever!
No matter the outcome, our lives are never assured and never guaranteed to us. Every day, every minute is a gift. Don’t live in fear, rejoice in his strength and your own. Show him how strong you want him to be by being strong and proud that you have a kid who is ready to go into the battle of his life for his life and you are there to watch him fight that battle. When it’s all over, you will be amazed at how strong and resilient he will emerge. Not only will he be physically stronger, almost every challenge the world can throw at him will pale in comparison! This is not a curse you passed on to your child, its is a gift that will make your all stronger and more appreciative of how fragile life is and how strong a child can truly be in the face of such an obstacle and what a great kid your raised.
This is how I laid this out to my parents and it set their minds at ease. If your child were just a little older and perhaps a little more worldly, because he has a great supportive and loving family, I GUARINTEE he would be telling you the same thing if he hasn’t already! You did not hand him a curse, you all have been given a blessing. You get to see your child do something that most parents seldom get to see their kids do. Triumph in the face of huge adversity. He isn’t fighting for a state championship or a scholarship or anything worldly, he is fighting for his own life and will probably do it with a smile on his face. It behooves you to smile right along side of him and share in his strength the optimism that only a child with great, supportive and loving parents can have.
To you I say CONGRADULATIONS! Not good luck. No matter the outcome, fight well as a family. On the other side, you ALL walk away far stronger. Don’t lament the decision you have made, rejoice in it.
Sorry for the long winder. I live for this stuff!
Well, let me take you through the mindset of the child who has to go through this. My parents, both are healthy, no heart problems, and I am the youngest of 3. Being the baby of the family, I enjoy the "perceived most favored" status as far as my brothers are concerned. When I was diagnosed with this bi-cusped valve and aortic aneurism, my parents were horrified! They felt responsible. The first thing my mom told me was "I don’t understand, you were the only one that I DIDNT smoke while I was pregnant with." Keeping in mind, we are talking about 1965 when no one gave much thought to smoking while pregnant.
My parents felt that they were responsible for my condition especially my mom. I had to make sure that they knew, it’s not their fault! This illness is a GIFT! Not a CURSE! How can it be a gift you say? Now you get to see who you REALLY are, and your child, if he is the strong, wonderful and smart kid you know him to be, will take this in stride as it sounds like he is. He will get the benefit of living through this experience and have that scar to wear as a badge of courage and honor! He will now and forever be known as a warrior and have the trophy to prove it like most everyone on this forum has and I soon will have! You will all take pride in the fact that that warrior came out of you! You built him. You didn’t force him into this battle, but he will have the last word and your pride will be overwhelming when he comes out the other end triumphantly. Hockey players only get to hold Lord Stanleys cup, your kid will have his trophy to keep with him forever!
No matter the outcome, our lives are never assured and never guaranteed to us. Every day, every minute is a gift. Don’t live in fear, rejoice in his strength and your own. Show him how strong you want him to be by being strong and proud that you have a kid who is ready to go into the battle of his life for his life and you are there to watch him fight that battle. When it’s all over, you will be amazed at how strong and resilient he will emerge. Not only will he be physically stronger, almost every challenge the world can throw at him will pale in comparison! This is not a curse you passed on to your child, its is a gift that will make your all stronger and more appreciative of how fragile life is and how strong a child can truly be in the face of such an obstacle and what a great kid your raised.
This is how I laid this out to my parents and it set their minds at ease. If your child were just a little older and perhaps a little more worldly, because he has a great supportive and loving family, I GUARINTEE he would be telling you the same thing if he hasn’t already! You did not hand him a curse, you all have been given a blessing. You get to see your child do something that most parents seldom get to see their kids do. Triumph in the face of huge adversity. He isn’t fighting for a state championship or a scholarship or anything worldly, he is fighting for his own life and will probably do it with a smile on his face. It behooves you to smile right along side of him and share in his strength the optimism that only a child with great, supportive and loving parents can have.
To you I say CONGRADULATIONS! Not good luck. No matter the outcome, fight well as a family. On the other side, you ALL walk away far stronger. Don’t lament the decision you have made, rejoice in it.
Sorry for the long winder. I live for this stuff!
I can't speak for your situation, but I can tell you that I was so happy to finally get the surgery done. I am 24 and had a tripple valve replacement 8 months ago. I'd been waiting to get it done for 10 years, and when the time came, my cardiologist gave me the option to wait 3 months and do it over my winter break, or to get it done this summer when my school year ended. I scheduled it for december, but when I quickly started gaining water weight and losing energy, I moved it up a month and withdrew from my classes, uprooted my life and returned to Colorado from my home in Montana in order to do it sooner. After 10 years waiting, I went into the surgery joyfully, just dreaming about all the things I would be able to do that I could no longer do because of my heart. Not to mention having it behind me. I woke from the 9 and a half hour surgery and was already joking around with my family before I they took the trach tube out, and the worst part of my recovery was laughing because it hurt my chest so much. That's not to say it was easy by any means or that there wasn't risk and pain involved. And it did greatly disrupt my life, but I am so happy to have gotten it done when I did, and so young. Now I have the wonderful opportunity to focus on my body and my health in a more positive way, rather than trying to manage my health and my disease. There are a few good years of my youth behind me that I was not able to fully enjoy because my heart held me back, but only a few. Now there are many years of my youth left to enjoy. I don't know to what extent that relates, but that is my story.
Julieaka
Well-known member
My mama just had to go through the surgery with me at age 43 - she birthed me in the same hospital with a BAV 43.5 years ago - and she has worried for that entire time.
Frankly, I just repaired mine at 4.0 when they went in to do the BAV
It's just totally natural to worry - and Marfan's is completely different from everything else
You are a wonderful mom and everything will turn out perfectly - even though you wlil still be worrying - however, I will tell you when my mom walked into my hospital room (not the ICU - but when I got to tele she had a HUGE smile on her face because the "problem" had been fixed by experts and she doesn't have to worry daily!
Julie
Frankly, I just repaired mine at 4.0 when they went in to do the BAV
It's just totally natural to worry - and Marfan's is completely different from everything else
You are a wonderful mom and everything will turn out perfectly - even though you wlil still be worrying - however, I will tell you when my mom walked into my hospital room (not the ICU - but when I got to tele she had a HUGE smile on her face because the "problem" had been fixed by experts and she doesn't have to worry daily!
Julie
