Search found 21 matches

by Nyone
January 31st, 2010, 3:18 pm
Forum: 2010 Forum Posts
Topic: Runners with ICDs wanted for Medtronic Heros 10K
Replies: 4
Views: 682

Re: Runners with ICDs wanted for Medtronic Heros 10K

Hi Cyndie I've been wanting to qualify for the marathon for a few years now, but you have to do a marathon before you can qualify. Did the Rock & Roll half last June, but have since changed my beta blocker to nadalol and am having problems training with the change. Will see how this year goes and ma...
by Nyone
January 31st, 2010, 3:12 pm
Forum: Moms, Dads & Kids
Topic: looking for info on CPVT and ICD
Replies: 21
Views: 12509

Re: looking for info on CPVT and ICD

Wow jdm, I'm glad they caught the perforation early. Mine perforated about 3 months after implant (which had been unusual because like Garrett, this usually happens withing the first 6 weeks. They are making leads so thin that it's happening more often later and I think St Jude changed their design ...
by Nyone
January 26th, 2010, 3:57 pm
Forum: Moms, Dads & Kids
Topic: looking for info on CPVT and ICD
Replies: 21
Views: 12509

Re: looking for info on CPVT and ICD

Hi jdm111 and zmom, I had been diagnosed with long qt syndrome for 4 years but doubted the diagnosis and finally saw Michael Ackerman at the Mayo clinic for a 3rd opinion. Coincidentally (or more likely by a higher power) 2 days before my appointment, the Mayo got a hit on my blood I had sent in 2 y...
by Nyone
October 9th, 2009, 4:22 pm
Forum: 2009 Forum Posts
Topic: CPVT? Appointment with a new doctor...
Replies: 21
Views: 2593

Re: CPVT? Appointment with a new doctor...

Hi Andrea I had been diagnosed with Long QT syndrome for 4 years but had never been comfortable with the diagnosis (too many things with my case didn't make sense). My QT interval was long immediately after my first event, but subsequent ECGs were not always long. My genetic test was negative but a ...
by Nyone
July 4th, 2009, 1:12 pm
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17203

Re: CPVT

It was only a half marathon and it was last Saturday--when I saw the full marathoners veering off for another 13 miles, I was so glad I wasn't going with them! I stupidly tried switching to nadalol before the race and had problems training, so I switched back to metoprolol, but now that the race is ...
by Nyone
July 3rd, 2009, 6:07 pm
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17203

Re: CPVT

Theresa, The FDA had a problem with how a couple of the manufacturers made the generic Toprol XL, so that caused a shortage of generic metoprolol ER tabs. I could only get one month filled at a time and only the brand Toprol XL, which cost 3-4 times more since my insurance covers less for brand name...
by Nyone
June 25th, 2009, 6:43 pm
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17203

Re: CPVT

Hi CPVTers You can add me to the list. I haven't browsed this board in a long time--the last time I did I still had the long QT syndrome diagnosis, but now have found a mutation in the Ryanodine receptor area for CPVT (new mutation so has not been confirmed that I really have CPVT). I'm on metoprolo...
by Nyone
August 10th, 2006, 11:04 am
Forum: 2006 Forum Posts
Topic: any programs that can help pay for meds.
Replies: 10
Views: 1746

Check out this website: http://www.needymeds.com/indices/pap.tml

It's like a yellow pages for pharmaceutical assistance programs
by Nyone
February 21st, 2006, 3:11 pm
Forum: Moms, Dads & Kids
Topic: Posible problem with Joel's Q-T
Replies: 17
Views: 8721

Hi Wendy I doubt they would stop the Inderal before the stress test, but it depends on what they are looking for--whether there is LQT without beta blockers or whether the beta-blockers are working appropriately? My kids started on atenolol and had to go back for more exercise testing, which showed ...
by Nyone
February 13th, 2006, 1:53 pm
Forum: Moms, Dads & Kids
Topic: Posible problem with Joel's Q-T
Replies: 17
Views: 8721

HI Wendy I'm sorry to hear about Joel's diagnosis. Many with long QT remain without symptoms for life, so lets hope he's one of them. The QT changes from day to day, hour to hour so I don't know if they can really say that his is "not very bad" with certainty. My QT interval has been normal several ...
by Nyone
February 3rd, 2006, 12:30 pm
Forum: Moms, Dads & Kids
Topic: Prayers Needed
Replies: 2
Views: 2655

Cyndie
I hope your new friend gets through this all right. She's lucky to have found you for support and guidance. I'll keep her and her family in my prayers.

Nancy Y
by Nyone
January 26th, 2006, 1:06 pm
Forum: 2006 Forum Posts
Topic: Question on Warfrin
Replies: 9
Views: 2066

Hi Terry With short bowel syndrome, your INRs may be a bit more tricky to regulate. It often trial and error until they get the right recipe. Make sure your doctors know you're still taking Plavix--use with warfarin can increase your risk of bleeding complications so they should have a good reason f...
by Nyone
January 23rd, 2006, 12:57 pm
Forum: Moms, Dads & Kids
Topic: Posible problem with Joel's Q-T
Replies: 17
Views: 8721

Hi Wendy That's good your pediatrician had a cardiologist look at the EKG because it can be tricky to measure a QT interval correctly (the machine reading is not correct). Also, a lot of drugs can cause the QT interval to prolong, so it could be related to that rather than another heart problem. Thi...
by Nyone
January 21st, 2006, 1:31 am
Forum: 2006 Forum Posts
Topic: QUESTION
Replies: 6
Views: 1563

Hi Ruthy There's no evidence that coenzyme Q-10 works to improve ejection fraction when used alone, but it may help when used with other medications (but controversial). It may interact with warfarin/Coumadin by decreasing warfarin's effectiveness, so its important to monitor warfarin closely if Q-1...
by Nyone
January 12th, 2006, 1:37 pm
Forum: Main Forum 2019
Topic: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.
Replies: 1165
Views: 397889

Posted: Thu Dec 22, 2005 1:56 pm Post subject: -------------------------------------------------------------------------------- Hi I'm the mom of 2 kids, Marisa (9yo) and Mitchell (6yo) and have been diagnosed with long QT syndrome since my respiratory arrest at a lake while camping in July 2004. My...