Hello, I'm a heart patient!

I'm 26 and found out only 2 years ago I was born with a hole in my heart (Arterial Septal Defect) and I had open heart surgery at 24 to fix it as it was too big for keyhole surgery. The doctor said the right hand side of my heart was double the size to compensate but since surgery it has returned to it's normal size

I like the idea of this group and it's nice to meet you guys. I hope everything goes well for your children

Jess

Hello Everyone,

This is a interesting and unique group.. I'm glad I came across it. I was born with VSD (heart murmur) and ASD atrial septal defect. I had surgery when I was 10 years of age to fix the murmur, but I still have the leaking valve, which will probably need replacement when I am in my 30's or so they say. I feel good most of the time, and I don't notice any bad symptoms in my day to day life, I am very lucky for that.

losing4me2012, I read your post about your son, it's so amazing all the love and care you have for him, he is one lucky child to have a mom like you. You are both so strong, reading it brought me to tears. (and he is the most adorable and sweet baby/boy)

I am curious if anyone else has experienced this, It seems like to me, people with heart defects that grow to be adults are kind of passed over when it comes to treatment or cutting edge care. I'm 22 and when I visit the cardiologist I feel that they are mostly concerned with treating their elderly patients for chronic problems, and have an attitude that death is right around the corner so make them comfortable with meds.

I even had my most recent cardiologist admit this without saying it in so many words. He also said that i was fortunate to have stumbled across him because he considered himself to have an interest in the pathology of younger patients.

I was moving and he advised me to seek out a university hospital or somewhere where they might have an interest in helping patients that are younger. I am not saying this is true for every doctor, but in my experience it has been. I guess they see their way to make money off of an aging population that has developed heart conditions.

I have found myself wishing many times that I could still visit my pediatric cardiologist, because the level of interest and care recieved from him was exemplary. It's nice to feel like someone cares a little about your future, instead of patting you on the head and taking 500 dollars for an EKG...hahah

I want to get my weight under control and finally be as healthy and fit as I have hoped to be. I have had an overweight problem most of my life. I'm starting to realize maybe I have a direct control over my future when it comes down to it, I need to educate myself and become as healthy as I can be for my heart.

I am just getting into CHD awareness online, and I find it so interesting, as I have never known anyone else with problems like these.

I hope we can have some interesting discussions, take care everyone!

Hi Starry,

I know what you mean re: elderly patients! When I go visit the doctor i'm always the youngest and when I had heart surgery I was the youngest in the hospital room by about 30 years LOL. I had doctors and uni students visiting all the time to ask me questions like a test case. It was the same in heart rehab (where we learnt about healthy heart/eating).

One thing I wish the elderly people would do though is just ask me why i'm there, instead of staring and looking at me constantly!

Hey sorry for my late reply, lol I forgot to check this board, and I was out of town.

Glad to know other people have had the same experiences, I was very much a curiosity when I had my surgery, I suppose it didn't help that Vanderbilt (where I had my surgery) is a university hospital. Haha! But If I was able to help in any way so that other people have a chance of living than it's more than worth it.

That's so amazing they caught your heart defect before it was too late, It's awesome what surgery can do. I'm so grateful for all the help I recieved.

Hello Everyone,

This is a interesting and unique group.. I'm glad I came across it. I was born with VSD (heart murmur) and ASD atrial septal defect. I had surgery when I was 10 years of age to fix the murmur, but I still have the leaking valve, which will probably need replacement when I am in my 30's or so they say. I feel good most of the time, and I don't notice any bad symptoms in my day to day life, I am very lucky for that.

losing4me2012, I read your post about your son, it's so amazing all the love and care you have for him, he is one lucky child to have a mom like you. You are both so strong, reading it brought me to tears. (and he is the most adorable and sweet baby/boy)

I am curious if anyone else has experienced this, It seems like to me, people with heart defects that grow to be adults are kind of passed over when it comes to treatment or cutting edge care. I'm 22 and when I visit the cardiologist I feel that they are mostly concerned with treating their elderly patients for chronic problems, and have an attitude that death is right around the corner so make them comfortable with meds.

I even had my most recent cardiologist admit this without saying it in so many words. He also said that i was fortunate to have stumbled across him because he considered himself to have an interest in the pathology of younger patients.

I was moving and he advised me to seek out a university hospital or somewhere where they might have an interest in helping patients that are younger. I am not saying this is true for every doctor, but in my experience it has been. I guess they see their way to make money off of an aging population that has developed heart conditions.

I have found myself wishing many times that I could still visit my pediatric cardiologist, because the level of interest and care recieved from him was exemplary. It's nice to feel like someone cares a little about your future, instead of patting you on the head and taking 500 dollars for an EKG...hahah

I want to get my weight under control and finally be as healthy and fit as I have hoped to be. I have had an overweight problem most of my life. I'm starting to realize maybe I have a direct control over my future when it comes down to it, I need to educate myself and become as healthy as I can be for my heart.

I am just getting into CHD awareness online, and I find it so interesting, as I have never known anyone else with problems like these.

I hope we can have some interesting discussions, take care everyone!

Hello All!

I am a heart mom to an awesome little 4yr old. He has TGA/ VSD. He was born 2/14/2008 and had an OHS at 1 week. I am glad I found this group.

We have a pediactric cardiologist right now for our little guy. We do attend a Heart and Mind Awareness Day at CHOP (Childreh's Hos. of Philadelpia) every year. And one of the things we alwways hear about is the lack of DRs out there with the expirence to handle or understand Adults with CHD... It use to be CHD babies rarely survived but now that more and more are surviving there is a lack of quality care for when they reach adulthood. I think in the near future there will be more and better care for the adults like there is for the babies/kids. Here is a site for adults... http://www.achaheart.org/

Hello All!

I am a heart mom to an awesome little 4yr old. He has TGA/ VSD. He was born 2/14/2008 and had an OHS at 1 week. I am glad I found this group.

We have a pediactric cardiologist right now for our little guy. We do attend a Heart and Mind Awareness Day at CHOP (Childreh's Hos. of Philadelpia) every year. And one of the things we alwways hear about is the lack of DRs out there with the expirence to handle or understand Adults with CHD... It use to be CHD babies rarely survived but now that more and more are surviving there is a lack of quality care for when they reach adulthood. I think in the near future there will be more and better care for the adults like there is for the babies/kids. Here is a site for adults... http://www.achaheart.org/

Thank you for that site. All of the googling I did when I found out about my defect last year and I never came across it.

Anytime!