electrphysiology studies, radiofrequency ablation

  • By kimbleloss · Posted November 7, 2013
  • In Clinical and scientific research · 10 replies
  • hi there, im just curious as to whether I am having normal side effects as the hospital was not very forthcoming with information. I had an ablation done on Tuesday, may I say it was the most horrendous ...

Please Help

  • By AmberO · Posted November 6, 2013
  • In Help desk · 1 reply
  • Is there anyone out there who knows is a person with Long QT can handle Chemotherapy ...

SADS NYU Family seminar

  • By melike · Posted November 6, 2013
  • In Building awareness · 0 replies
  • Hi all, I will be attending this family seminar at NYU and wanted to share the info with the group. SADS Family Seminar- New York University Attention all East Coast SADS Families! The SADS Foundation ...

Long QT Folks - Suggestions for Sinus Congestion?

  • By Andreas13 · Posted October 24, 2013
  • In Building awareness · 6 replies
  • Hello Heart People. I've gotten a chronic cough and congestion thing going on, which i tend to get regularly this time of year each year. After 4 weeks, i'm tired of it so have been looking for drugs ...

My 4yr old daughter has CPVT

  • By lifechanges · Posted October 23, 2013
  • In Clinical and scientific research · 3 replies
  • My daughter's genetics test just came back after 11 weeks of waiting. She has the gene RYR2-CPVT and also has a gene mutated called Calsequstrin. Her Cardiologist said it only affects 1-2% of people ...


  • By KingofHearts · Posted October 21, 2013
  • In Help desk · 0 replies
  • I have some serious questions that I would really love everyone to give some feedback on ....... I have a single lead pacemaker (2011) ...... Open Heart Surgery in 1974. 1. How have you coped with your ...

Concerned about ObamaCare

  • By Voni517 · Posted October 17, 2013
  • In Building awareness · 25 replies
  • I'm concerned about my future care when ObamaCare goes into full swing. Having a SADS condition pretty much marks you for long term expensive care and I don't fall in or under the poverty line. I'm expecting ...

ECG handheld monitor?

  • By shiawase · Posted October 15, 2013
  • In ECG screening for athletes · 24 replies
  • does anybody here have a ECG handheld monitor? do you find it helpful? and what type you have? i need information about it. if someone knows. please do share and discuss it. any inputs would be appreciated ...

My Cardiologist Unconcerned About Borderline QT

  • By tcrissy · Posted October 9, 2013
  • In ECG screening for athletes · 10 replies
  • Hi Everyone! I'm 42 and have been active all my life. Lately, I have been feeling dizzy at the gym, usually after my cardio workouts (though I've never passed out in my life). I went to the ER one night ...

Faint Spells. Dizziness. Lost of Breath.

  • By jaydeeo · Posted October 4, 2013
  • In Help desk · 5 replies
  • My 11 year old son fainted while taking a bath early in the morning last February of this year and again last August, also while taking a bath. And this morning before taking a bath he got dizzy and had ...

Having Cardiac Ablation, Have A Question

  • By starlite · Posted September 30, 2013
  • In Tales of the heart memorials and tributes · 36 replies
  • I've read comments from those who've had a cardiac ablation and said the area could take up to a year to heal. What would be the feeling from that healing process. I'm have it done pretty soon. Thanks ...

Frequent pvc's

  • By greendaygirl · Posted September 27, 2013
  • In Building awareness · 21 replies
  • I'm new here so I'll start with a little bit about myself. I'm 33 years old and for the last 10 or so years I've had pvc's on and off, maybe 2 or 3 in one week! But since the birth of my third baby they ...

Asymptomatic kids with class II variants only

  • By melevy · Posted September 9, 2013
  • In Genetic testing · 2 replies
  • My children recently had genetic testing for LQT. It all started when my son who is a diabetic went in for a sports physical. We did not know at the time that very low blood sugar can cause a short term ...

Stopping amiodarone

  • By Aries92 · Posted August 21, 2013
  • In Building awareness · 16 replies
  • I have stopped amiodarone after taking it for 22 years...cold turkey....I need to get off of it and get it out of my system so I can have my radiation treatment for thyroid cancer. EP didn't put me on ...

Ablation Done.....Phwew!

  • By mvanstef · Posted August 17, 2013
  • In Building awareness · 18 replies
  • Hi everyone, Got thru my ablation on Wednesday. Was really nervous going in. Thought I was going to be twilight, but as it turned out I had to stay awake. It was 4 1/2 hrs. Not horrible, but wouldn't ...

CPR to Someone with Pacemaker

  • By dgodesky · Posted August 15, 2013
  • In Building awareness · 6 replies
  • Does anyone have a link to a quality set of guidance around the use of CPR on someone with a pacemaker? The only, and thus best advice I've received so far is verbal - proceed with CPR as you would on ...

Palpitations after ablation

  • By zbloom · Posted August 12, 2013
  • In Help desk · 8 replies
  • I had my ablation done in 08 . I was fine with the exception of a few palpitations happening every month around that time of the month. I tore my Acl, Mcl and meniscus in march and every sense then my ...


  • By RMSchmid · Posted August 6, 2013
  • In Building awareness · 22 replies
  • Is there anyone out there who has ARVD/ARVC? I'm finding it very hard to find anyone or any support groups of poeple who have this rare disease and have been living with it for a while or know some information ...

My 4yr old was just diagnosed with CPVT

  • By lifechanges · Posted August 4, 2013
  • In Clinical and scientific research · 2 replies
  • Hi, I am new to do this board, and my daughter was recently hospitalized and found out she has CPVT. Has anyone ever heard of that or have a child or know someone with this condition? I have some questions ...

Dr. David Dunbar in MN (anyone familiar with him?)

  • By mvanstef · Posted August 2, 2013
  • In Building awareness · 2 replies
  • Just wondering if anyone has heard of or seen Dr. David Dunbar (St. Paul, MN) if so, what did you think of him ...

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