Update - LQTS - ICD Turned off!

[Guest guest]

Best of luck . Sounds as if you are in good hands and doing well.

Love and Prayers,

Adele from MA--Dave from Maine's Mom .New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out!

[Guest guest]

Hi Everyone!

I hope all is well! Well I went to the Mayo Clinic yesterday, was there for about 9 hours. The Dr. I saw was incredible, made me feel like a human and not just a patient. He talked with myself and my family for an hour and 45 minutes. After a series of test he confirmed the diagnosis of LQTS, but he is not sure which type I have. He is almost certain that I have LQT1, if that is the case then I don't need the ICD. He said the ICD is a very aggressive form of therapy and that there are many other options to try before implanting an ICD.

I am in the process of getting some genetic testing done. Not only for myself (to figure out which type I have) but to find out the likely hood of passing this disorder onto my future children, it is usually a 50% chance.

For the time being, my ICD is still turned off and I have been put on Nadolol. I hope I don't feel too tired!

Thanks for listening, take care!!

, 26 in Minneapolis, MN

[Guest guest]

Hi ,

Having an ICD IS an aggressive, invasive procedure that is becoming

way to common a way out; just like c-sections have made it easier and

more convenient for doctors to deliver babies. I have a different

heart condition than you but my ICD has been off for over a year and

is soon to be taken out. During the time your's is off, use that time

to determine if you feel safe with it off. It will help you decide if

you want it out or if you want to hang onto it and have it turned back

on in the future if it becomes necessary to have one.

I understand that the problem you may have now does not warrant having

an ICD but on the other hand it's in there and it may be prudent to

keep it there for future need. Just a thought to talk over with your

doctor. If you weren't so young, I would not make the recommendation

but having people dinking around with your heart is not something to

take lightly or do frequently if you can avoid it.

Keep us posted here because your experience helps others who might be

needing to make a big decision.

blessings,

Bonnie

>

> Hi Everyone!

> I hope all is well!  Well I went to the Mayo Clinic yesterday, was

there for about 9 hours.  The Dr. I saw was incredible, made me feel

like a human and not just a patient.  He talked with myself and my

family for an hour and 45 minutes.  After a series of test he

confirmed the diagnosis of LQTS, but he is not sure which type I

have.  He is almost certain that I have LQT1, if that is the case then

I don't need the ICD.  He said the ICD is a very aggressive form of

therapy and that there are many other options to try before implanting

an ICD.

> I am in the process of getting some genetic testing done.  Not only

for myself (to figure out which type I have) but to find out the

likely hood of passing this disorder onto my future children, it is

usually a 50% chance.

> For the time being, my ICD is still turned off and I have been put

on Nadolol.  I hope I don't feel too tired! 

>  

> Thanks for listening, take care!!

>  

> , 26 in Minneapolis, MN

>