Carson Hodges - Heart Valve Journal

My Journal

3406 days ago

Hi! It's been a while since I have been on this site.... I hope I am even posting this correctly! I made this account for my 6 year old son who was diagnosed ...Read more

Hi! It's been a while since I have been on this site.... I hope I am even posting this correctly! I made this account for my 6 year old son who was diagnosed with BAV only last year. It has been so helpful to read everyone's stories! I have a question though.... My son has his yearly follow up with the cardiologist this afternoon. Again, this will only be his second appt since being diagnosed. The fist was a little crazy and overwhelming and I didn't receive a lot of information at that time. I have noticed that some of you have mentioned something like what your gradient etc, was at each check up. I am wanting to know what specifics I can ask the Dr. today so that I can keep up and really know what condition things are in for myself. I feel like they just diagnosed him and told me about the condition, and sent me on my way... but that is not enough for me. I need to know a few specifics ha ha. If anyone can give me some advice of some questions to ask after his echo, I would appreciate it so much. Also, if you want to provide what your numbers last were so I have something to compare with, that would be great too! Again, he has bicuspid aortic valve and we were told he had mild regurgitation at that time. I think he had some aortic stenosis as well. Thanks in advance for any help and I hope you all are doing wonderful!! Jamie

Ashley Molyneaux Hi Jamie. I'm sure that must be stressful having a child with a valve problem. The gradient (veloci ... Read more

Ashley Molyneaux Hi Jamie. I'm sure that must be stressful having a child with a valve problem. The gradient (velocity) is important as that shows how quickly the blood is moving through the valve...think of what a garden hose does when you put your finger partially over the spout. The more narrow you make the opening, the faster the blood comes out. Another one is the actually valve opening itself, how big is it? what is the ejection fraction (how well is the heart pumping)? Lastly, is the heart a normal size for your sons body size?

Carson Hodges Ashley, thank you so much for your comment! Carson had his follow up this afternoon and the Doctor sa ... Read more

Carson Hodges Ashley, thank you so much for your comment! Carson had his follow up this afternoon and the Doctor said everything was pretty much the same as last year....We are about to be moving out of state, and I asked that they just give me his records to take with me so that I don't have to deal with waiting for them to be sent next year when we see a new cardiologist. Since I knew I would have everything in hand when they mail them to me, I did not ask the specifics of everything. Once I recieve them I may post some info on here for comparison! As for now she did not seem as if there were any new concerns and that is such a relief. Again, I really appreciate your comment and wish you the very best on your journey!!!!!

Ashley Molyneaux Great news and thank you!!! :)

Carson Hodgesposted a journal

3489 days ago

I am not sure how to to reach out to people on thi website lol. I know it was created mostly for surgery, but I am just hoping to find other parents out there ...Read more

I am not sure how to to reach out to people on thi website lol. I know it was created mostly for surgery, but I am just hoping to find other parents out there who have children with BAV. Anyone? I created a profile for my son who has this condition, hoping to connect with other people who have the same thing as him. This is the first place I have found that has this much info on heart valves and it looks wonderful! Everyone's success stories make it a little less scary. Thanks- Jamie

Jean Raber I hope you get some "bites," Jamie. I have a friend (now 40) who had this condition as a child. I've ... Read more

Jean Raber I hope you get some "bites," Jamie. I have a friend (now 40) who had this condition as a child. I've also had several students who had heart surgery as children and have written about it. It seems to be far scarier for the parents than the kids.

Carson Hodges Hi Jean! Thanks for taking the time to respond!! My son is 6 and was just diagnosed 4/2015 So it's st ... Read more

Carson Hodges Hi Jean! Thanks for taking the time to respond!! My son is 6 and was just diagnosed 4/2015 So it's still very new to us. As of now he is completely normal and does not need surgery. I was completely crazy when I first found out, but have since accepted it and feel I am dealing with it much better. Even so, the thought of it, still never really leaves my mind. Just hoping to hear from others and learn as much as I can about it. We go back in April for a 2nd echo and are hoping and praying nothing has changed!!! Thanks again, and I wish you luck with all that comes your way!!

Clare Auten Welcome. I know I have read at least 2 profiles of parents on the site but I can't remember who. Ther ... Read more

Clare Auten Welcome. I know I have read at least 2 profiles of parents on the site but I can't remember who. There are also a few people who had surgery as children and are on the site now as young adults. I am glad your son does not need surgery yet. Ask us any questions you have. We all love to talk about ourselves and tell our stories.

Carson Hodges Thanks so much for the comment Clare! It is nice reading about everyone's experiences, even though th ... Read more

Carson Hodges Thanks so much for the comment Clare! It is nice reading about everyone's experiences, even though they are much older than him. It is my hope and prayer that he will be an old man before he would require surgery!

Hi Carson, i was born with a bicuspid aortic valve, but didn't learn about it until I was in my mid-t ... Read more

Hi Carson, i was born with a bicuspid aortic valve, but didn't learn about it until I was in my mid-thirties and just had my replacement at 40. Best wishes and I hope you are able to make connections. Does the hospital or doctor who diagnosed your son have resources? There is a large spectrum of how long the valve lasts. Either way, technology is always progressing. Best wishes!!

Carson Hodges Hi Laura! thanks for the post. At this point, Carson doesn't need any intervention. I read your story ... Read more

Carson Hodges Hi Laura! thanks for the post. At this point, Carson doesn't need any intervention. I read your story and like you, i have my fingers crossed that there will be something amazing out there by the time the time he might need something done! So sorry to hear about your father and all of the things you have been through. How did you discover you had BAV? I am the only one who has not screened for it yet, and I am a little nervous about it. My husband and older son are fine thank goodness, and my baby was scanned in utero, but his little valve was too small to see so we will rescan when he is older.praying nothing is wrong with him either. I finally broke down and made an appt to go next month and get checked out myself. I have been having insane heart palpitations that are prob hormone related (still breastfeeding)... But it's enough to make me want to get it over with. Most of my family have passed away so I am not sure if it ran in my family or not. Anyway, thanks again for the post and best wishes to you as well!!

Hi Carson, I was diagnosed right after I had my second child as I had a heart murmur when I was pregn ... Read more

Hi Carson, I was diagnosed right after I had my second child as I had a heart murmur when I was pregnant and asked my OB to check for it at my 6 week check up. I pushed it because my dad passed away while I was pregnant with my second child and he had said I needed to get checked and I knew a heart murmur was a symptom. You are smart to get everyone checked (including yourself). My boys were checked and thankfully didn't inherit it. Luckily, this is such a common heart issue, the technology is always changing so I hope your son does not need intervention until something amazing is available! Best wishes!

Wanda Mroz Welcome... This is a great site to get answers and hopefully you will get yours. It's amazing how fa ... Read more

Wanda Mroz Welcome... This is a great site to get answers and hopefully you will get yours. It's amazing how far medicine has evolved. I can only imagine the improvements in the future. Best of luck for the future.