Hi! My name is Nicholas Arruda. I am 15 years old and I am from Johnston, Rhode Island. I live with my dad, Raymond and my mom, Julie. I have a 13 year old sister named Emily and a one year old Yorkshire Terrier named Chloe.

I have CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia). When I was 5 years old running around my grandfather’s office with my then 3 year old sister Emily, I collapsed on the floor. My Uncle Pete called 911 and my uncle and my dad did CPR on me. I woke up before the ambulance arrived. I was brought to the hospital and stayed there for a few days. At first, they thought I might have had a seizure, but then they realized it was my heart. I started seeing Dr. Sara Ford from the Pediatric Heart Center in Providence, RI. I was told I had ectopic atrial tachycardia. I was put on a beta blocker. I did not have any other episodes for 6 years.

When I turned 11, we decided to take me off the beta blocker because I had no symptoms. My parents asked for me to have a stress test to make sure I was ok without the beta blocker. I was on the treadmill for two minutes when my heart rate went up to 300 beats per minute. They stopped me immediately and realized I had to be on a beta blocker and add another medicine called flecainide. I had to be admitted into Hasbro Children’s Hospital in order to start flecainide. I also have a cardiologist name Dr. John Triedman at Boston Children’s Hospital. I was genetically tested and found out I have CPVT. My parents and sister were also tested and they do NOT have it.

Since then I have had two heart monitors implanted and I even went to the Mayo Clinic in Minnesota to have Left Cardiac Sympathetic Denervation (LCSD). Currently I am still taking 40 mg of nadolol two times a day and 100 mg of flecainide two times a day. I am not allowed to compete in any competitive sports and I have to take my AED with me when we know I am going to be a bit more active. This is one of the biggest challenges I have had. It stinks that I always have be careful of how active I am. 

There are MANY positive things that have come out of diagnosis. I am a big New England Patriot’s fan and I was able to get a Make-A-Wish in the summer of 2016. I chose to meet Tom Brady. My family and I got to meet him and take a picture. I also got a signed jersey and picture. We even used our picture with Tom Brady for our Christmas card that year! I also was able to get seats to see Maroon Five by Do It For The Love Wish Grant. I was able to work at Rob Gronkowski’s Sports camp this past summer and Julian Edelman’s Sports camp too. I was able to get pictures with both of them. I also was able to meet Patrice Bergeron from the Boston Bruins at a Make-A-Wish Event. 

I love to watch football. We have Patriot’s season tickets so I always go to a few games each year. I currently am a manager of my high school’s Varsity football team. I go to Lasalle Academy in Providence, Rhode Island. I am currently a Boy Scout with the Life Rank in Troop 1 North Scituate, Rhode Island. I like to spend my spare time playing X-Box, watching YouTube videos, and spending time with my family.

We have also attended three SADS Conferences. We went to San Diego, Toronto, and this last one in Atlanta. It was a great experience for myself, my sister, and my parents.

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Name: Heather Whitehurst
Age: 36
When was your SCA? September 26, 2015
Which SADS condition do you have? LQTS
How are you treated? Beta blocker, ICD, paced to not go below 60bpm to help prevent arrhythmia as lower heart rates are a known trigger for me, avoiding meds on the CredibleMeds list unless benefit outweighs risk

Can you tell us about your Sudden Cardiac Arrest (SCA)?
I had just woken up from a late day nap as I wasn’t feeling good and was making a cup of coffee before I did my night-time routine with my kids (who were 6 & 8 at the time). As my coffee was brewing, I was trying to read a text on my phone and couldn’t focus my eyes to read it and for a brief moment, I felt short of breath and severely dizzy. That’s the last thing I remember.
Luckily, my kids heard me collapse because when I collapsed, I kicked the pots and pans cabinet which made lots of noise and my head slammed against a kitchen table chair.
When I didn’t respond to my kids asking from their beds if I was ok, they got out of bed to check on me. When they couldn’t wake me up and saw that my lips were blue, they ran outside to get my husband/their father who was sitting on the front porch.
My husband immediately started CPR as he was dialing 911. There’s a fire station less than a mile from our house and they got to my house within minutes so I was only down for about 5 minutes. Once at the hospital, I had 2 more SCAs.  

Did you have any warning signs of having a SADS condition before your SCA? 
Yes, I did. I had over a dozen episodes of suddenly passing out, none of which was during activity. I sought out care for all but 2 of them, at the ER.
I had ECGs each time in which I was told that my heart was “perfect” even though a prolonged QT was noted and several times it was recommended I be evaluated for Long QT Syndrome (LQTS). 
I was never told about it and the ER doctors noted in my record that my QTc wasn’t “long enough to be a concern”. Instead I was misdiagnosed with vasovagal faint, anxiety and/or stress.
The 2 episodes of passing out that I didn’t seek care for occurred a couple of weeks before my SCA and occurred back-to-back. I passed out, came to and immediately passed out again with coming to feeling like my body was vibrating (suspected seizure). I didn’t seek care because every time that I sought care previously, it was shrugged off as nothing to be concerned about. 

What has been the biggest challenge you’ve faced as a SCA survivor and/or living with your diagnosis? 
Medical professionals not understanding LQTS and/or not taking it seriously and also being chastised for being an informed/educated patient. 
Being a SCA survivor, I’ve struggled with memory issues caused by anoxic brain injury and learning to accept the new “me”. One thing that has made being a SCA survivor even more frustrating, is the total lack of after-care unless I demanded it and the lack of research about SCA survivors/survival. 

What is one positive thing that has come out of your SCA/diagnosis? 
Meeting some pretty awesome people thru social media support groups and recently at the SADS Conference in Atlanta. 

What encouragement or advice would you give someone who has just survived a SCA or been diagnosed with your condition? 
Educate yourself about your condition!! Ask plenty of questions!! Find support!! Patients CAN live a “normal” life with LQTS. It’s definitely a scary condition but diagnosis and proper treatment prevents the worst from occurring and allows that “normal” life to be lived!!

What does your day-to-day life look like?
Like it did prior to my diagnosis except I pay a lot more attention to the “little things” and I forget where I had put my coffee more, LOL. 

What are your favorite hobbies and activities? 
Hanging out with my family and friends. Supporting others. Watching my kids grow. Collecting dolphin figurines. Starting projects that I somehow never finish!

Want to be featured in the SADS Spotlight? Share your story by answering a few short questions. If you have a longer story to tell, or if you’d like to write about a specific topic, check out our guidelines for writers

Welcome to Atlanta! Our family is thrilled that Atlanta is hosting this year’s SADS Foundation Conference. There are so many delicious new restaurants, landmarks and fun attractions for the whole family to enjoy. You can do as much, or as little as you’d like in our town.

When you arrive, if you are flying to Hartsfield-Jackson International Airport, theAtlanta Marriott Buckhead Hotel and Conference Center is a short 20-25 minute Uber, taxi, or Marta ride. I encourage you to take Marta as it has a Buckhead stop (Lenox) and Atlanta traffic is unpredictable and miserable on Fridays.


*BUCKHEAD*
The Atlanta Marriott Buckhead is located here.
Buckhead is a residential area, with many shops and restaurants.

Restaurants in Buckhead:
Aria
Hal’s
Chops
Bones
Bistro Niko
Anis
Annie’s Thai Castle
King + Duke
Gypsy Kitchen
La Grotta
Le Bilboquet
Shake Shack (my kid’s personal favorite)

Things to do in Buckhead:
Phipps Plaza and Lenox Square
Both within walking distance of hotel
Department stores such as Saks Fifth Avenue, Nordstrom, Macy’s, Newman Marcus, Legoland, etc.
The Shops of Buckhead
High end shopping and restaurants
The Atlanta History Museum and The Swan Coach House

*MIDTOWN*

Restaurants in Midtown:
Baraonda
Cooks & Soldiers
South City Kitchen
Gunshow
JCT Kitchen
Redbird
Mary Mac’s Tearoom
Marcel
Miller Union

Things to do in Midtown:
Atlantic Station
outdoor shops and restaurants
The Atlanta Botanical Gardens
Atlanta Beltline
Fernbank Museum
Krog Street Market
Piedmont Park
Ponce City Market
The High Museum
The Center for Puppetry Arts
SCAD FASH Museum of Fashion + Film

*DOWNTOWN*

Restaurants Downtown:
Alma Cocina
Blackbird
Der Biergarten
Poor Calvin’s
The Sundial
The Varsity (Atlanta staple and fun to take the kids)

Things to do Downtown:
The Children’s Museum
Centennial Olympic Park
The College Football Hall Of Fame
The Georgia Aquarium
The World of Coca-Cola
The Center for Civil and Human Rights
MLK birthplace, original Ebenezer Baptist Church and memorial
Zoo Atlanta

Name: Richard Lamphier
Location: Atlanta, GA  
Occupation: Program Manager Project S.A.V.E of Children’s Healthcare of Atlanta, an affiliate of Project ADAM

Why were you drawn to nursing as a career? 
I had a good friend who passed away. While he was in the hospital, he had 2 male nurses who encouraged me to be a nurse in his honor.

How long have you’ve been in nursing?
35 years. I joined Project S.A.V.E 6 years ago. Before that I worked in hospital cardiac ICU and cath lab.

What first got you interested in cardiac issues and prevention of sudden cardiac death?   
I had a team mate in high school who had a SCA. My coach did CPR on him and I will never forget the desperate look in his face when he was doing CPR. I want to try to make sure no one else has to go through that feeling of helplessness.

What are some of your recent projects and accomplishments?   
We recently passed the Sudden Cardiac Arrest Prevention Act in Georgia – Jeremy Nelson and Nick Blakely Sudden Cardiac Arrest Prevention Act (SB 60).  I’m a member of the Georgia High School Association’s (GHSA) Sports Medicine Advisory Committee. GHSA mandated that all high school coaches in Georgia are required to have CPR/AED training at least every 2 years. We have between 15,000-18,000 coaches in Georgia. The law went into effect July 1, 2019. I’ve been busy training coaches.

Can you tell us about a time when you were personally involved in a life saved?
Outside a hospital- one time in 35 years. It occurred at a health & wellness expo where Project S.A.V.E. had a table. Someone came to table and said “We need your help!” There was a toddler with complex medical condition and had no pulse, and had stopped breathing. I started CPR, with another nurse for 1- 2 minutes (with what seemed like hours!) and then I felt the child’s heart beat return under my hands.

Is there anything you are looking forward to? 
I’m looking forward to helping host the 2019 International SADS Foundation Conference in Atlanta. I’m also looking forward to the impact mandating CPR/AED training for coaches will have.

Is there anything you would like to say to fellow nurses about attending the SADS Conference in Atlanta? 
Some of these conditions are so rare in our pediatric population that it’s a great opportunity to learn about them. It’s important to recognize a SADS condition. Also a great opportunity to interact with patients and families to better understand what can be done in your schools and community. In addition to the healthcare provider program, the Family Conference will have continuing education hours for nurses.

What activities do you enjoy in your free time? 
Atlanta has some great things to do. I’m kind of a foodie. Atlanta has some great restaurants. I enjoy going to local sporting events, Atlanta Botanical Garden , and exploring all of what Georgia has to offer. We have the North Georgia Mountains with over 1,000 mapped waterfalls and the beaches of Southeast Georgia.  

What advice would you give to someone who is interested in getting involved with cardiac advocacy efforts to make their community safer? 
I think the best way to start getting involved with cardiac advocacy is to demonstrate the behavior you want to see in others. My wife and I both have AEDs in our cars, we donate AEDs to the community we live in and teach a lot of CPR/AED. We have a son-Deacon, 6- who knows the basic CPR steps: to call 9-1-1 and get an AED.

From here, I would recommend connecting with likeminded people, who are interested in advancing the awareness of cardiac issues. You could join us at www.choa.org/projectsave  for more information.

I think another great place to connect with is your state nursing association. I am currently the President of the Georgia Nurses Association.  We are always looking for speakers and causes for our members to get behind. I have a goal that all 140,000 nurses in Georgia would teach 5-10 people CPR/AED every year. That would be another ½ to 1 million people ready to respond in a cardiac emergency.

Another suggestion is to get to know your local elected officials- Mayor, city council person, school board member, State Senator and State Representative. Meet with them; let them know you are the content expert when it comes to cardiac issues, including awareness and preparedness.

Read Kennedy’s previous post for the first installment of her story.

January 23^rd. Some recognize this date as the day Richard Nixon announced an accord to end the Vietnam War, or the day LeBron James became the 7^th and youngest player to reach the 30,000 NBA point milestone. With those moments forever etched in history, this day holds a value that I’m forever indebted to. For me, January 23^rd, 2013 is the day that I flew to Heaven with gossamer wings.

Only seventeen, following the trendiness of society in a puzzling quest of fitting in (as most dramatic teenagers do). Getting over the convenience of crying and why it caters to the young and wondering, while anxiously solving the case of my life’s unknown purpose. I walked into school that Wednesday morning completely unprepared for the way destiny would manifest itself around me with the sweetness of its burnt out black feathers.

Bigger, Faster, Stronger was a class that helped improve all aspects of my athletic performance as a high school softball player. From strength, speed, agility, and flexibility training, breaking records in the weight-room became my weekly goal. I strived to be more explosive not only in my workouts, but on the pitchers’ mound. I approached the pull-up bar completely full of adrenalin as if I was cavorting into the prelude of a dream. Trying to reach my repetition goal, I began the cadence of pulling my chest up to the bar and extending my arms back down. Inhale, exhale. Reaching my third rep, something wasn’t right. I had to quit despite how hard I wanted to push my strength. Grip so firm, my knuckles had lost their human color and the single vein in my forehead appeared like a quiet captivating abandon. Stop, Kennedy, stop. Once my feet planted the floor, it was as if someone had a carafe with nine ounces of static, generously poured into the sinus node of my heart. Collapsing to the ground, I immediately was in cardiac arrest.

Expecting to find minimal injury, my teachers rushed to my side and instead, found me unconscious, unresponsive, and in my most vulnerable moment. Chest compressions and mouth-to-mouth resuscitation was immediately administered as a classmate dialed 911 with frantic fingers. Although stunned at what had happened, my rescuers knew that if I were to survive, paramedics needed to get here and get here quickly. For fifteen minutes my pulse had vanished. I knew it was going to leave me someday but would’ve never imagined it would possess the qualities of evanescence as a young teenager. What felt like an eternity was only minutes, faculty yielded care to firefighters, emt’s and paramedics. After assessing my cardiac rhythm, I was in ventricular fibrillation (rapid, erratic, electrical impulses) requiring me to be shocked a total of three times. Because of the skill and rapid response, my pulse was recovered. Yet unable to breathe on my own, I was rushed to the hospital and put on life support.

About 90 percent of people who experience severe out-of-hospital cardiac arrests die, so the chances of recovery were now lifted in roars of constant prayer. My dad and grandmother did not deserve to be in that hospital waiting room again. My grandma now having lost both of her children, my dad losing his wife, and now here they are in fear of losing their daughter and granddaughter to this masked shadow. Why was death trying to pluck our loved ones like petals from a flower-it loves them, it loves them not.

Carrying the news for anxious ears, the doctor informed my family that I was showing signs of slow recovery. “We are amazed but cautiously optimistic.” It was a miracle I had survived, but because I flat-lined for fifteen minutes, one of the biggest concerns was the impact of prolonged oxygen deprivation on my brain. With cardiac arrest, the lack of circulation affects not just one part of the brain but everywhere in the brain where blood flows. When cardiac arrest occurs, it is essential to start cardiopulmonary resuscitation (CPR) within two minutes. By nine minutes, severe and irreversible brain damage is likely and chances of survival are low. If my teachers hadn’t of administered CPR as quickly and consistently as they did, I wouldn’t be alive. CPR literally saved my life that Wednesday morning, but what trauma would be waiting for me?

I was transferred to University Medical Center where different brain tests were performed and miracles began to happen. Results revealed no signs of permeant brain damage which left the medical team astounded. To be deprived of oxygen that long without the extra assistance of an Automated External Defibrillator and be completely free of cascading symptoms is proof that I was under the care of no human hand. My eyes opened and I found myself laying in a hospital bed connected to tubes and wires like a marionette puppet. I had no recollection of what happened but as I was listening to the story, it sure felt like an episode of Grey’s Anatomy. The question I remember asking myself was “but… why did this even happen?”

Imagine forcing yourself to be content with the reality of never knowing why your mom died. Or my grandmother looking at “anomaly” on her seventeen year old son’s autopsy report knowing deep in the fibers of her soul that there had to be more to that declaration. From being prescribed heart rate stabilizer pills to being hooked up to the glittering menagerie of frequent electrocardiogram tests, it seemed like a nuisance for two little girls who felt like the unfairness of life had just slapped them in the face. I can’t speak for my sister but I know that my tears found refuge in the palms of my hands.

With my grandmother’s persistent research with the SADS Foundation, we knew it had to be within the genetic composition of our family tree. Connecting with the Mayo Clinic, our family’s heritable cardiovascular disease specialist realized that the electrical heart conditions I had been tested for twelve years prior, were mimickers of one uncommon needle in a haystack. I was with my grandmother at a SADS conference in Ohio when our specialist Dr. Ackerman told us the results of his research. He looked at my grandmother, looked at me, and says “Pam, Kennedy, we found it.” From implantable cardioverter-defibrillator (ICD) surgery to scrutinizing DNA samples, catecholaminergic polymorphic ventricular tachycardia (CPVT) was our smoking gun. The day my heart freed Excalibur.

This rare genetic condition often shows up in childhood with first sightings of fainting, heavy exercise or strong emotion. The two upper chambers of the heart are called atria and the two lower chambers are called ventricles. Normally, the signal to start your heartbeat comes from a group of specialized cells in the heart called the sinoatrial node. People with CPVT can develop a sudden, irregular and rapid heart rhythm from the ventricles called ventricular tachycardia (VT). With this condition, the heart beats so quickly that it does not have enough time to fill between beats. As a result, not enough blood gets pumped forward to the body.

It took me some time to truly comprehend this big anatomical orchestra, but it’s through the music that I’ve learned what it truly means to be a cardiac arrest survivor and I wouldn’t change it for the world. There was a season where I felt like I was trapped in winter. Through that winter I learned the nature of patience and with that patience, the harvest will be rich in the end and darkness will dissipate.  With the promise whispered in my ear that my destiny on earth wasn’t finished yet, my heartstrings became the feathers on His golden quill.

Amazing things happen when we are liberated from our own fear. As we let our light shine from that freedom, we unconsciously invest in giving people permission to do the same. Never give up. You never know what beauty can be found in our darkest moments.

      

Mama’s house is gone
Fragments remain as part of
That once vital family
I am one of those fragments
My name is Mary
I have a story to tell

Dirt road, uninsulated house, outhouse, wood stoves- one for heating, the other for cooking, water from a pump nearby.
The outdoors was my world.

6 kids. 4 had seizures.  I was one of the 4.  I had grand mal seizures.  I can’t speak for the other 3- they are dead.
I was 8 when my sister Catherine, 13, died suddenly.  That was the year my seizures started.

10 years later, I was a freshman at the University of Vermont.  That year my only brother Richard died suddenly at the age of 26.  2 years later, my sister Elisabeth passed away.  I had a cigarette for her outside the funeral home.  I figured I was the next one to go.  I increased my drinking.

Institutions….10 or 11 years either for alcohol or depression.

I met my future husband in a bar.  We smoked pot together.
I found religion.  That helped for a while.  I felt called into the Salvation Army.
My pot smoking friend figured if we married that would bring him the religion I found.
He found his own way.  We married and were in the Salvation Army for a year.

During that time, our first child Elizabeth was born.  I saw her little feet first.  I fell in love.  The year was 1976.  I think within a week, I had a seizure.  My timing after this is a bit confusing.  When I look back, I had what I call heart spells.  I was 31 years old and felt like an old woman.

We had company one day and I had another episode.  At this point, I asked my husband to bring me to the ER.  They checked my vitals and said I could go home.  I refused.  I knew something was wrong.  I was admitted under psychiatric surveillance and was on a regular medical floor.
Within 24 hours, I was experiencing something with my heart.  I grabbed a nurse’s hand and the doctor on call heard about a hysterical woman.

They slapped an EKG on me and I was off the charts.  I was on a gurney heading for cardiac.  I knew I was dying and was glad someone else knew.
In the cardiac unit, Dr. Dennis DeSilvey was in charge.  He knew immediately from the EKG reading that I had LQTS.
They had to defibrillate me a number of times.

They tried me on beta blockers.  That didn’t work because of my low blood pressure.  I was on Dilantin and perhaps phenobarbital for my seizure activities.   No idea what DeSilvey put me on before I was sent to Burlington, Vermont to have what they called back then a left stellate ganglionectomy.

I had a couple of friends that worked in the hospital.  Apparently, the surgeons were operating from a manual.  There were some complications so what was supposed to be a relatively short surgery turned into 9 hours.

Somehow I gave up during that surgery and my two friends took turns holding my hand during recovery.  Those gals helped saved me.
So thanks to Dr. Arthur Moss and perhaps a Dalmatian dog, the surgery was successful.

After recovery, I went home and went to Rutland hospital.  I was on so much medication.  DeSilvey had to find one that worked for me.  Guinea pig, hooked to the wall.  No portable units back then.  Primidone. It shortened my QT.  Miracle.

Written up in a medical journal.  Home to my family.  Scared.  Anything happening with my heart sent me back to the cardiac unit.  So many times.  One trip the nurse threw the leads at me and told to hook myself up.  Visits to the psych unit.  I picked up drinking again but could only drink for one night.  My primidone prevented that.  I drank on and off for 10 more years.

Four years after my surgery, our daughter Katherine was born.  The year was 1980.  My brother’s daughter Laurie died suddenly of LQTS.  It seemed like this thing would never go away.

I was so messed up.  Finally my family was gone.  I was in an institution.   When I came home 5 weeks later, I was a single woman with no family.   I lived here and there, trying to get my life back.  It came slowly.

A job for 3 years at a turn of the century sweat shop.  That job created some stability in my life.  I would fly out to see my kids.  I called it a weekend extravaganza.  I would leave on a Friday and come back on a Sunday.

Sobriety in 1987.  It lasted.  Jobs here and there.  Vocational rehabilitation.  My own small business- The Traveling Computer Tutor.  Other jobs to make up the difference.  A 4 year degree 30 years in the making.   Magna Cum Laude.

After the internet became available to the general public, I decided to write my own homepage based on my LQTS but showing that my life could be fairly normal.

Fast forward to the present day.  I am 73 years old.  What can a 73 year old do in spite of LQTS?

Play Pokemon.  Take walks.  Laugh with my friends.  Do genealogy.  Go bird watching.  Drive my car.  I can even do my dishes.  My 87 year old neighbor likes to do my dishes, so I let her.

My LQTS doesn’t define me.  My alcoholism doesn’t define me.

I am a total human being.  I live in hope.  I have become a positive person.