My daughter has all the symptoms of long qt syndrome, even my husbands cardioligist said so, but my daughter needs to see a pedeatric cardioligist, the pediatric cardioligist wont do the genitic testing because he says it costs to much and the insurance wont pay for it, what do I do???
@theshadowgypsy John Clark, one of our pediatric cardiologists, would like to touch base with you about this concern. You can contact him directly at jclark@chmca.org.
i am 13 i have LQTS3 i found out 2 and half years ago i had to quit sports and swimming i had no black outs yet thankfully but i am on 6 capsules aday and 1 betablocker i hate taking them but iv no choice! i am pationitly waiting on word on my surgery to get a defibultor in but its just a life saver i can not do no sports all my life i am one of 5 in my family that has this.....
Yeah..it is horrible when u try and tell people, well..i'm not supposed to get really upset, nor have adrenaline rushes, i can't have my arms above my head..i can't run..a.s.o..and people look at u like -well u look just fine...But i guess there is a lot automatic pain and -heart ache- with any life threatening disease.. still, sometimes it feels like it'd be easier to have an amputated leg, at least people could SEE that there is actually something wrong with u..
I have it, and as a teen it's really difficult, because it's untreatable. And you can die, I mean they're like, "blah blah blah, you could die" and you're like... huh?? It's emotional, but it DOES get easier as it goes... I promise :)
i play softball and volleyball and irishdance, so im really athletic. my mom has long Q.T and i have borderline Q.T and had to wear a halter monitor and soon a stress test
I've had to get an ICD implanted, whilst a senior in high school. It wasn't great at first, but it grew on me. In some sense it was probably the greatest thing to happen to me, because I never considered college at first (did great in high school, but college never appealed to me) until this occurred. Its been a struggle these past couple years, I went through a couple cardiac arrests and the ICD had to be taken out for medical complications, but I've managed to remain a high-ranked student.
I have long qt 3!!!!!!!!! And im getting sympathetic surgery on nov 11....ive had it for 13 years and have had 5 surgeries!!! ive had over 358 cardiac arrests.. if u need anything anything at all any advice or anything facebook me!! Kristina Ofsthun
@cyphaqueen wow..quite an amazing short story.. i have qt3 too..but i'm 45 now and totally ignored for surgery.. i get by on the beta blockers, but the doses just get higher, i am tired all the time...and have really weird stuff happen to me in my sleep ( i am aware of it even in dreams and wake up to it) ..i'm on early retirement now. U must be a world record in cardiac arrests..so amazing u have survived.
Thank you for sharing your story! My family has Long QT type 2, several of us have ICD's. My diagnosis & treatment were rapid, also. I was diagnosed & implanted w/ an ICD 10 years ago and have had three devices so far.
I have LongQT Type 1 and so does 4 other members of my family. I have an ICD and had to give up swimming and other sports. I miss lots of things, but I realise I am very lucky to be alive. Great video!
My daughter has all the symptoms of long qt syndrome, even my husbands cardioligist said so, but my daughter needs to see a pedeatric cardioligist, the pediatric cardioligist wont do the genitic testing because he says it costs to much and the insurance wont pay for it, what do I do???
theshadowgypsy 2 weeks ago
@theshadowgypsy John Clark, one of our pediatric cardiologists, would like to touch base with you about this concern. You can contact him directly at jclark@chmca.org.
AkronChildrens 3 days ago
i have long qt syndrome too
:(
cheeselovingirl14 1 month ago
hey i am doig lqts for a school project sorry for u though
fatharrypotter55 1 month ago
i am 13 i have LQTS3 i found out 2 and half years ago i had to quit sports and swimming i had no black outs yet thankfully but i am on 6 capsules aday and 1 betablocker i hate taking them but iv no choice! i am pationitly waiting on word on my surgery to get a defibultor in but its just a life saver i can not do no sports all my life i am one of 5 in my family that has this.....
raichealokane 2 months ago
Yeah..it is horrible when u try and tell people, well..i'm not supposed to get really upset, nor have adrenaline rushes, i can't have my arms above my head..i can't run..a.s.o..and people look at u like -well u look just fine...But i guess there is a lot automatic pain and -heart ache- with any life threatening disease.. still, sometimes it feels like it'd be easier to have an amputated leg, at least people could SEE that there is actually something wrong with u..
somesortanaughty 3 months ago
I have it, and as a teen it's really difficult, because it's untreatable. And you can die, I mean they're like, "blah blah blah, you could die" and you're like... huh?? It's emotional, but it DOES get easier as it goes... I promise :)
cheeesemacoroni 6 months ago
i play softball and volleyball and irishdance, so im really athletic. my mom has long Q.T and i have borderline Q.T and had to wear a halter monitor and soon a stress test
peacepuppy224 9 months ago
So, life can go on through all of this. These hard times just build character.
RonT222 1 year ago
I've had to get an ICD implanted, whilst a senior in high school. It wasn't great at first, but it grew on me. In some sense it was probably the greatest thing to happen to me, because I never considered college at first (did great in high school, but college never appealed to me) until this occurred. Its been a struggle these past couple years, I went through a couple cardiac arrests and the ICD had to be taken out for medical complications, but I've managed to remain a high-ranked student.
RonT222 1 year ago
Sweetie I promise u that u can play volleyball and that u can swim..it will all get so much easier!!
cyphaqueen 1 year ago
I have long qt 3!!!!!!!!! And im getting sympathetic surgery on nov 11....ive had it for 13 years and have had 5 surgeries!!! ive had over 358 cardiac arrests.. if u need anything anything at all any advice or anything facebook me!! Kristina Ofsthun
cyphaqueen 1 year ago
@cyphaqueen wow..quite an amazing short story.. i have qt3 too..but i'm 45 now and totally ignored for surgery.. i get by on the beta blockers, but the doses just get higher, i am tired all the time...and have really weird stuff happen to me in my sleep ( i am aware of it even in dreams and wake up to it) ..i'm on early retirement now. U must be a world record in cardiac arrests..so amazing u have survived.
somesortanaughty 3 months ago
Thank you for sharing your story! My family has Long QT type 2, several of us have ICD's. My diagnosis & treatment were rapid, also. I was diagnosed & implanted w/ an ICD 10 years ago and have had three devices so far.
jessicaNjerrid 1 year ago
I have LongQT Type 1 and so does 4 other members of my family. I have an ICD and had to give up swimming and other sports. I miss lots of things, but I realise I am very lucky to be alive. Great video!
tessy790 1 year ago