Comments on: “Is Heart Valve Surgery Common For My Age?” Asks Phil http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/ Former Patient And Author, Adam Pick, Blogs About Heart Valve Replacement And Heart Valve Repair Thu, 09 Feb 2012 06:18:04 +0000 hourly 1 http://wordpress.org/?v=3.3 By: Keri Kish http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-18628 Keri Kish Thu, 28 Jan 2010 22:42:38 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-18628 I just found out yesterday that my son, who is three years old has Bicuspid aortic valve. We were going to Childrens hospital in Boston to see his cardiologist for a check up on his SVT that we found over 2 years ago. He has been on propanalol for over two years now and he has been doing great. We have done three holters on him in the past few year and they all come back flawless with no activity. The doctor said everything looks great and all his heart functions are perfect. He said that children grow out of the SVT and he was one of them, but to hear about the BAVD was a shock to my husband and I. He told us not to worry about this. Put it in the back of our minds it not a big deal right now in childhood. He said as he gets older they will check him and monitor everything. He will be going back in a year for a follow up with the SVT because we are weening him off the medication and he will have all the testing again. I was shocked and worried when I heard this and really don’t know anything about it. I have been trying to do some research on my own and just need some help. Can you please help me. Thank you Keri I just found out yesterday that my son, who is three years old has Bicuspid aortic valve. We were going to Childrens hospital in Boston to see his cardiologist for a check up on his SVT that we found over 2 years ago. He has been on propanalol for over two years now and he has been doing great. We have done three holters on him in the past few year and they all come back flawless with no activity. The doctor said everything looks great and all his heart functions are perfect. He said that children grow out of the SVT and he was one of them, but to hear about the BAVD was a shock to my husband and I. He told us not to worry about this. Put it in the back of our minds it not a big deal right now in childhood. He said as he gets older they will check him and monitor everything. He will be going back in a year for a follow up with the SVT because we are weening him off the medication and he will have all the testing again. I was shocked and worried when I heard this and really don’t know anything about it. I have been trying to do some research on my own and just need some help. Can you please help me. Thank you Keri

]]> By: Lisa http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-16448 Lisa Thu, 05 Nov 2009 20:21:13 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-16448 Glenda, you are not alone. I am 36 and had mitral valve repair in Dec 2008, recovery is not easy. I have struggled with many of the issues you have mentioned. Please feel free to email me lisa@ravendesigns.com Any of the support groups I have found have people that are all much older than myself, and my cardiac rehab nurse said I was the youngest patient she had ever had. We can compare notes. -Lisa Glenda, you are not alone. I am 36 and had mitral valve repair in Dec 2008, recovery is not easy. I have struggled with many of the issues you have mentioned. Please feel free to email me lisa@ravendesigns.com Any of the support groups I have found have people that are all much older than myself, and my cardiac rehab nurse said I was the youngest patient she had ever had. We can compare notes. -Lisa

]]> By: glenda http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-16437 glenda Thu, 05 Nov 2009 15:19:34 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-16437 I have had MVP and MVP w/reg 4+ since I was 9. Im 36 now. i have vlave repair Sept 14th. I never in a million years thought I would be having open heart surgery at 36 or even 46, but I did. I was the youngest patient ever on their cardiac floor. The nurses really didnt know how to treat me. They tried treating me like the 80 years old people that were my neighbors. It was weird. Al the other patients looked at me like "whats she doing here". LOL I have had alot of mental issues since the surgery. VERY depressed. I cry all the time. I feel alone because I know of no one that is my age and had this done so no one relates to me. I have been tired 20 something years because of the MVP. Always tired. After my surgery people thought I should have been able to take out my breathing tube and go run a marathon. I got alot of "youre fixed now, get up and do something". People can be rude. well sorry to babble but I just wanted to put this out there to see if I was alone as I thought. I have had MVP and MVP w/reg 4+ since I was 9. Im 36 now. i have vlave repair Sept 14th. I never in a million years thought I would be having open heart surgery at 36 or even 46, but I did. I was the youngest patient ever on their cardiac floor. The nurses really didnt know how to treat me. They tried treating me like the 80 years old people that were my neighbors. It was weird. Al the other patients looked at me like “whats she doing here”. LOL
I have had alot of mental issues since the surgery. VERY depressed. I cry all the time. I feel alone because I know of no one that is my age and had this done so no one relates to me.
I have been tired 20 something years because of the MVP. Always tired. After my surgery people thought I should have been able to take out my breathing tube and go run a marathon. I got alot of “youre fixed now, get up and do something”. People can be rude. well sorry to babble but I just wanted to put this out there to see if I was alone as I thought.

]]> By: Joe Reagan http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-16101 Joe Reagan Mon, 26 Oct 2009 12:55:32 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-16101 Don Henry, I enjoyed reading your post. Keep me posted @ rjosephreagan@yahoo.com. My AVR on 10/14/09 went so smoothly I almost can't believe it. I walked 5 miles yesterday, 11 days post op. I'm on limited Advil for pain. My focus now will be showing up for my next AVR in the best possible shape physically, sprirtually and emotionally. Peace brother, good luck. Joe Don Henry,
I enjoyed reading your post. Keep me posted @ rjosephreagan@yahoo.com. My AVR on 10/14/09 went so smoothly I almost can’t believe it. I walked 5 miles yesterday, 11 days post op. I’m on limited Advil for pain. My focus now will be showing up for my next AVR in the best possible shape physically, sprirtually and emotionally.
Peace brother, good luck.
Joe

]]> By: anta jobs http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-16099 anta jobs Mon, 26 Oct 2009 09:11:32 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-16099 Hi Phil am 40years and I had aorctic valeve replacement and am 2 months post operative. Am about doing the same thing I was doing no problem. The problem is timing of the prognosis and the preparation of the surgery. Make sure you get the best cardiologist surgeon Am advising you to positive mental atitude you will be fine anta Hi Phil
am 40years and I had aorctic valeve replacement and am 2 months post operative. Am about doing the same thing I was doing no problem.

The problem is timing of the prognosis and the preparation of the surgery. Make sure you get the best cardiologist surgeon
Am advising you to positive mental atitude you will be fine

anta

]]> By: Don Henry http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-16094 Don Henry Mon, 26 Oct 2009 03:39:42 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-16094 Phils' toughest decision will be choosing between the mechanical or tissue valve. Nobody wants to have more than one surgery and with a mechanical the odds are you won't have to have, but one surgery. Of course the downside is the blood thinners. I think Jimmy made the decision based on having just the one surgery and for him it was the right choice. The ON-X valve is the latest in the mechanical as it supposedly requires less blood thinners. At age 55 I got the Carpentier Edwards Bovine valve and have done really well for 10 years and now this valve is thickening and I will require surgery in a year or so. Which valve to get at age 65 is still a tough decision. Good luck to Phil and jimmy. Don Phils’ toughest decision will be choosing between the mechanical or tissue valve. Nobody wants to have more than one surgery and with a mechanical the odds are you won’t have to have, but one surgery. Of course the downside is the blood thinners. I think Jimmy made the decision based on having just the one surgery and for him it was the right choice. The ON-X valve is the latest in the mechanical as it supposedly requires less blood thinners. At age 55 I got the Carpentier Edwards Bovine valve and have done really well for 10 years and now this valve is thickening and I will require surgery in a year or so. Which valve to get at age 65 is still a tough decision. Good luck to Phil and jimmy.

Don

]]> By: Jimmy Beville http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-15984 Jimmy Beville Wed, 21 Oct 2009 02:10:51 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-15984 Hello! If mechanical valves did not require Coumadin, just about everyone that could receive a mechanical valve would. I think even Mr. Pick would be clicking away like us mechanical recipients. So, the question is, can you live with the side effects of blood thinner? I was 38 years old when I received my ON-X mechanical valve in 2008. Life on Coumadin has been pretty uneventful, I test at home weekly and eat pretty much what I want. I realize that a catastrophic event could be harmful, but I believe that the possibility of never having surgery again and not compromising a healthy valve, was my major deciding factor. I am also in the ON-X study which should be done in a few years. The study will hopefully prove that high INR levels are not required for this particular valve. Thus minimizing a catastrophic event!!!! Hello!
If mechanical valves did not require Coumadin, just about everyone that could receive a mechanical valve would. I think even Mr. Pick would be clicking away like us mechanical recipients. So, the question is, can you live with the side effects of blood thinner? I was 38 years old when I received my ON-X mechanical valve in 2008. Life on Coumadin has been pretty uneventful, I test at home weekly and eat pretty much what I want. I realize that a catastrophic event could be harmful, but I believe that the possibility of never having surgery again and not compromising a healthy valve, was my major deciding factor. I am also in the ON-X study which should be done in a few years. The study will hopefully prove that high INR levels are not required for this particular valve. Thus minimizing a catastrophic event!!!!

]]> By: Rachel Vaughan http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-15982 Rachel Vaughan Wed, 21 Oct 2009 00:43:04 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-15982 Hey all! My name is Rachel and I am 26 years old, like alot of those who commented, I have severe aortic stenosis due to a bicuspid aortic valve. I had several opinions, and now I will be having it replaced Oct 27th at Sentara Heart Hospital in Virginia. I am a Biocor Valve put in, the reasoning behind this is I have yet to have children and wish to in the future, and after working with my doctor we have figure out this will be the best route for me. I am very nervous about this upcoming surgery however, this will be my second. I had a VSD repair at age 4, in 1987. I was very suprised, as well as many of the doctors/nurses I deal with that I have this condition at my age. However I am glad that it has been found and that It will be taken care of soon! Hope everyone stays happy and heatlhy. If you wish to contact me my email is Rachely16@aol.com! Thanks Hey all! My name is Rachel and I am 26 years old, like alot of those who commented, I have severe aortic stenosis due to a bicuspid aortic valve. I had several opinions, and now I will be having it replaced Oct 27th at Sentara Heart Hospital in Virginia. I am a Biocor Valve put in, the reasoning behind this is I have yet to have children and wish to in the future, and after working with my doctor we have figure out this will be the best route for me. I am very nervous about this upcoming surgery however, this will be my second. I had a VSD repair at age 4, in 1987. I was very suprised, as well as many of the doctors/nurses I deal with that I have this condition at my age. However I am glad that it has been found and that It will be taken care of soon! Hope everyone stays happy and heatlhy. If you wish to contact me my email is Rachely16@aol.com! Thanks

]]> By: Joe Reagan http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-15970 Joe Reagan Tue, 20 Oct 2009 12:09:39 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-15970 Hello friends, I am a 51 year old fit male born with a heart murmur. I had my Aortic valve replaced last Wed. 10/14/09 by Dr. Lawrence Cohn at Brigham and Women's Hospital in Boston. Bovine tissue valve, 25mm. I experienced two days of misery followed by days of increasing hope and joy. I left the hospital on Sunday 10/18/09 and went for a 40 minute walk (albeit slow and methodical) outside in beautiful New England on Monday. Day at a time, be positive and ask for help. Joe Hello friends,

I am a 51 year old fit male born with a heart murmur. I had my Aortic valve replaced last Wed. 10/14/09 by Dr. Lawrence Cohn at Brigham and Women’s Hospital in Boston. Bovine tissue valve, 25mm. I experienced two days of misery followed by days of increasing hope and joy. I left the hospital on Sunday 10/18/09 and went for a 40 minute walk (albeit slow and methodical) outside in beautiful New England on Monday. Day at a time, be positive and ask for help.
Joe

]]> By: Sasha http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/comment-page-1/#comment-15954 Sasha Mon, 19 Oct 2009 14:39:11 +0000 http://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/18/common-age-for-bicuspid-aortic-valve-surgery/#comment-15954 My boyfriend recently had his aortic valve replaced wtih a tissue valve. He turned 48 in July and he was diagnosed with a bicuspid valve when he was 17. Unfortunately, he wasn't monitoring it with his cardiologist which led to CHF (congestive heart failure). Because the valve was so calcified, his heart was/is very enlarged and the Doctors indicated it will likely take a year for him to reach full recovery. He is doing tremendous and getting stronger every day. My boyfriend recently had his aortic valve replaced wtih a tissue valve. He turned 48 in July and he was diagnosed with a bicuspid valve when he was 17. Unfortunately, he wasn’t monitoring it with his cardiologist which led to CHF (congestive heart failure). Because the valve was so calcified, his heart was/is very enlarged and the Doctors indicated it will likely take a year for him to reach full recovery. He is doing tremendous and getting stronger every day.

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