Discussions

electrphysiology studies, radiofrequency ablation

kimbleloss
  • 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

AmberO
  • 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

melike
  • 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?

Andreas13
  • 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

lifechanges
  • 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 ...

Help

KingofHearts
  • 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

Voni517
  • 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?

shiawase
  • 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

tcrissy
  • 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.

jaydeeo
  • 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

starlite
  • 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

greendaygirl
  • 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

melevy
  • 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

Aries92
  • 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!

mvanstef
  • 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

dgodesky
  • 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

zbloom
  • 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 ...

ARVD/ARVC

RMSchmid
  • 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

lifechanges
  • 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?)

mvanstef
  • 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 ...

Things you can do

Support SADS Foundation

Help The Sudden Arrhythmia Death Syndromes Foundation reach its goals and support people like yourself by making a donation today.

Donate to The Sudden Arrhythmia Death Syndromes Foundation

Discussion topics

Community leaders