We went to the cardiologist today

[JTsMom]

and everything looks good, and we're set for another year!!! :yay:I am beyond relieved, and just had to share. I've been soooo stressed about this visit- it was the first time we went anywhere near that long between visits. Jason even cooperated a bit. :boogie:

[k_null81]

That is awesome! :bighand: I'm a heart defect survivor myself. I'm 28 and still go once a year unless something comes up.

[JTsMom]

Thanks for posting! DH and I love to hear from older survivors! It's so reassuring. Best of luck to you with your twins!

[brittone2]

:cheerleader1:

What a relief that must be!!! :)

[KpbS]

Congrats on the good report! Yea :)

[hillview]

WAHOO.
CONGRATS!
/hillary

[Melaine]

Good news! I'm glad you can rest easy tonight.

[buddyleebaby]

Big hugs Lori!
I am so happy everything looks good.

[egoldber]

Wonderful!!! You mist be so relieved. :)

And just because I can't resist :heartbeat:

[JMS]

That's fantastic news Lori. I'm sure you're over the moon :)

[gatorsmom]

That IS wonderful news. I just hate those "scary" appointments, don't you?

[MontrealMum]

That's wonderful news, you must all be so happy :yay:

[DrSally]

:yay::bighand:

So happy for you!!

[Corie]

Great news, Lori!!! :)

[LarsMal]

You must be so relieved. What great news...and some cooperation?!? Can't beat that!!!

[anamika]

That's fantastic. I can only imagine how happy and relieved you must be!

[JTsMom]

Thanks guys! :) It is always so stressful to do these appointments. My anxiety level gets really high once we get about a month or 2 away from one b/c you just never know what you're going to hear. Next year we're going to do a cardiac MRI just to get some more detailed info, but I'm choosing not to freak out about that for now.

It's getting harder, in some ways, now that he's older b/c I think about how I'm going to explain things to him when he starts asking more questions. It's so clear that he remembers having gone though some of the things he did, and it just breaks my heart. :(

[KBecks]

Congrats!!!

[DrSally]

It's getting harder, in some ways, now that he's older b/c I think about how I'm going to explain things to him when he starts asking more questions. It's so clear that he remembers having gone though some of the things he did, and it just breaks my heart. :(

I could totally see that. The best you can do is be there for him and he will have the security of knowing that his mom and dad are there for him no matter what happens. I imagine that going through this with such a supportive family will give some extra resiliency that will serve him well in later life.

[NancyJ_redo]

Yay, congratulations to you and Jason, that's great news!


It's getting harder, in some ways, now that he's older b/c I think about how I'm going to explain things to him when he starts asking more questions. :(

My 3yo son also has a congenital heart defect and we go for repeat echo's every 6 months to monitor things. Our next appt is in just a few weeks and now that DS is so inquisitive and articulate, I'm already wondering if he's going to start asking questions and what I'm going to tell him. And really, I'm shocked my older DS hasn't asked more questions about it and demanded to know real answers as opposed to the vague responses I've given him in the past.

[GlindaGoodWitch]

Big huge cyber (((hugs))) to you Lori! I am SO happy to hear your good news. YEA!!!

[ThreeofUs]

Congratulations! I'm so glad to hear your great news.

[elektra]

What a relief! Congrats!

[blisstwins]

So glad for you. Love to hear GOOD news.

[jgenie]

:yay::yay: Congrats on the great report! :yay::yay:

[JTsMom]

My 3yo son also has a congenital heart defect and we go for repeat echo's every 6 months to monitor things. Our next appt is in just a few weeks and now that DS is so inquisitive and articulate, I'm already wondering if he's going to start asking questions and what I'm going to tell him. And really, I'm shocked my older DS hasn't asked more questions about it and demanded to know real answers as opposed to the vague responses I've given him in the past.

I didn't know that. We'll have to chat more.

[NancyJ_redo]

I didn't know that. We'll have to chat more.

My DS has a bicuspid aortic valve, basically his aortic valve is fused, so the value normally has 3 "leaflets" that operate, but 2 of his are fused together. And he has aortic stenosis/dilitation, which means the aortic valve is bulged and the blood doesn't flow properly. We thought he'd have to have the valve replaced a few years ago but so far it seems to be operating ok so no surgeries yet! And of course, the longer we can put it off, the better.

Do you watch Oprah? Last month she had Dr. Oz on and they were looking at medical breakthroughs and other things that could elongate one's life. They visited a lab at Wake Forest Univ where the docs were growing organs...real organs! It was super cool. They grew an actual heart using cells from someone's body. I'm hopeful that by the time my DS requires surgery, they can grow him a replacement value using his own cells, or there will be some other incredible cardio development by then. Otherwise they'll have to use a pig or cow's heart valve, or a mechanical valve, which will work, but obviously wouldn't work as well as his own valve.

[karolyp]

Congrats! What awesome news!!!

[k_null81]

I wish I could of caught that Oprah episode! That would be awesome if they could transplant a new heart into me from my own cells. That gives me hope! :)


My DS has a bicuspid aortic valve, basically his aortic valve is fused, so the value normally has 3 "leaflets" that operate, but 2 of his are fused together. And he has aortic stenosis/dilitation, which means the aortic valve is bulged and the blood doesn't flow properly. We thought he'd have to have the valve replaced a few years ago but so far it seems to be operating ok so no surgeries yet! And of course, the longer we can put it off, the better.

Do you watch Oprah? Last month she had Dr. Oz on and they were looking at medical breakthroughs and other things that could elongate one's life. They visited a lab at Wake Forest Univ where the docs were growing organs...real organs! It was super cool. They grew an actual heart using cells from someone's body. I'm hopeful that by the time my DS requires surgery, they can grow him a replacement value using his own cells, or there will be some other incredible cardio development by then. Otherwise they'll have to use a pig or cow's heart valve, or a mechanical valve, which will work, but obviously wouldn't work as well as his own valve.

[JTsMom]

My DS has a bicuspid aortic valve, basically his aortic valve is fused, so the value normally has 3 "leaflets" that operate, but 2 of his are fused together. And he has aortic stenosis/dilitation, which means the aortic valve is bulged and the blood doesn't flow properly. We thought he'd have to have the valve replaced a few years ago but so far it seems to be operating ok so no surgeries yet! And of course, the longer we can put it off, the better.

Do you watch Oprah? Last month she had Dr. Oz on and they were looking at medical breakthroughs and other things that could elongate one's life. They visited a lab at Wake Forest Univ where the docs were growing organs...real organs! It was super cool. They grew an actual heart using cells from someone's body. I'm hopeful that by the time my DS requires surgery, they can grow him a replacement value using his own cells, or there will be some other incredible cardio development by then. Otherwise they'll have to use a pig or cow's heart valve, or a mechanical valve, which will work, but obviously wouldn't work as well as his own valve.

I didn't see that Oprah epi, but I have heard about the heart being grown. :boogie: I can't remember how many details I've posted about Jason's condition in the past, so forgive me if you already have read this..

Jason's condition is Dobule Outlet Right Ventricle with Pulmonic Stenosis, a VSD, and a tiny ASD. His aorta and PA were both on the right side of his heart- you're probably familiar with the other terms, so I'll spare you. ;) He had surgery at 3 months, and a cath at 13 mos. The surgery was considered a complete repair, but he will likely need "tweaking" as the years go by. My fingers and toes are crossed that everything can be done via cath, but there's no way to know of course.

During the surgery, his pulmonary valve was removed- he doesn't have one at all right now. They could have put one in, but he would have outgrown it quickly, and it would have had to been replaced. He is functioning really well without it, and he may never need one put in, but from what I told, he likely will in his teen years. That buys us some time though, and I'm of the same mindset as you- hoping that science will advance by that point.

His VSD was closed using his own tissue.

Because of the re-configuring of his major vessels, there is some extra "stuff" that narrows blood flow in certain parts. So far, so good though.

ETA: The ASD has not caused any problems, and they have left it alone thus far. His surgeon said it would function as a pop-off valve. We were SO incredibly fortunate to be near an excellent cardiac dept, with 2 amazing surgeons. If you ever happened to catch the reality show Miracle Workers (it was only on for 1 season), Dr. Burke, the host, was one of our docs.