Celebrating a wired life

Today, one of our WIRED sisters celebrates the 5th anniversary of her pacemaker implant.  As wired people, I think it’s very important to make a big deal out of this day.  Balloons, party hats and cake for everyone!

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Why is it so important?  Because it’s the day we were given a second chance at life.  For me, it’s the reason I am alive today.  I think that’s a pretty darn good reason!  Many years ago, I think it might’ve been my 10th pacemaker anniversary, my sister threw a little party!  We had cake!

What was your life like prior to your pacemaker or defibrillator? For me it was years of undiagnosed heart disease, chronic fainting spells and the last year prior, it was downright depressing and frustrating.

For many years I lived without the term “wired” in my vocabulary.  I didn’t even consider that I was “living with heart disease,” as I was so thrilled to have the pacemaker solve all of my heart problems that I literally never thought about it.

BOOM.

2004 arrives.  Time for a new device.  No longer a kid of 27, now I was 40 years old and anxiety was my middle name!  I had far more questions than answers surrounding this procedure and wished I had someone to talk to; someone that could hold my hand and calm me down (literally and figuratively).  I was blessed to have an incredible and supportive pacemaker nurse – but I still longed for ‘someone like me.’

WIRED4LIFE.

The journey began.  The quest to find women like me, and now – ten years later, I’ve found lots of women like me!  And they’ve founds lots of women like them, and they’ve started their own little groups on Facebook and these were offshoots of what began in 2004 in my head, and my heart.

happy-anniversary-heart-graphic-imageSo mark the date on your calendar of when your life began AGAIN and celebrate!  Make a cake, send yourself a card in the mail, honor the day that the word WIRED became part of your vocabulary.

 

 

And…no thanks is necessary!  I’m happy to have traveled this journey with you!  thankyou for sharing the journey

 

 

Never and that’s not possible

I’ll tell you what makes me crazy.  Device professionals (cardiologists, device nurses or manufacturers) telling someone “it can’t be done, it’s not possible, no, that would never happen, we can’t do anything about it.”

WE, on several occasions have told all of these people:  1) It happened to me, it is possible, I won’t live like this, I will not take no for an answer, etc.

I still receive messages from wired folk who are being told some of these ‘stock’ answers.  This is why getting a second opinion is very important when you reach a point of no return.  Make certain your appointment is at a NEW facility (not the same), and extra credibility if you were referred by someone you know!

When you live with a heart valve, stent, pacemaker or defibrillator, I can almost 100% guarantee that you will be living with this device the remainder of your life.  There is NO reason that you should ever have to ‘suffer’ or ‘live with’ pain.

Your doctor or nurse, device clinic or manufacturer exists at all, because of  YOU.

When our dog Max was a puppy, he got labeled at PetSmart grooming as being “difficult” and then received a mark on his folder, I believe it was a color system.  We were told this by one of the groomers that didn’t like working there.  So, Max was treated different when he came in for appointments, maybe he was even muzzled, I don’t know the details.  But when we got wind of this; no more PetSmart grooming.  We found a local groomer in town and she adores Max, she says he does best when we leave because he knows what is expected of him and he is a good boy.

People can become the same way; perhaps there is a note in your file; a ‘difficult’ patient, or demands too much, or asks too many questions or complains too much.

Bedside manner.  Does your doctor have a good one?  Does he treat you like a human being or a number?

I believe it starts at that first appointment.  When you leave, were your questions answered?  Do you feel like a nag for asking too many?  Did they make you feel rushed?  Are you afraid to talk to your cardiac team because you feel threatened by them?

YOU are the boss.  You give them a paycheck.  The patient has the right to be heard.

Be your own patient advocate.  Be heard.

 

 

Excerpts from WIRED4LIFE book

41KA7ez6DGL._SS300_Just in case you haven’t read my newly published book; WIRED4LIFE, I thought I’d share a bit of it with you. 

INTRODUCTION

It appears from your tests that you have “third degree heart block with syncope.” October 9, 1991. I heard these words for the first time. I finally had a diagnosis after 27 years.   A pacemaker implant the next day and my wired journey began.

I cannot imagine for a moment what my life would look like without WIRED4LIFE being a large component. The women I’ve met, the experiences I’ve had, the knowledge I’ve gained, the overall feeling of wellness. A path clearly marked now, by the footsteps of many wired sisters.

The idea for a WIRED4LIFE book has been living in my heart for a number of years. Many wired sisters and friends have encouraged me to write this book. I am starting with what I remember and what has been shared with me through the years. I pray you find your story here too.

 

From wired sister Sandy, who shares her own story in book:

It was during my research on pacemakers and settings that I found WIRED4LIFE. I will honestly say that initially I didn’t join as it was a ‘pay’ group. I had been visiting another group that is free but there was a lot of politics and while researching the posts could be helpful, the site seemed to have an almost high school environment – there was definitely an ‘in crowd’. I never felt like I belonged. There was a lot of technical information which for me, in the beginning, was needed. I like to know how things work and it allowed me to find a list of questions to bring to my doctor with questions, but I grew out of that fast.

Then I decided that I liked the idea of a group of women supporting each other. WIRED4LIFE has a much different feel. I’m still quiet most of the time, but I don’t feel like there is an ‘in crowd’. Everyone is ‘IN’. Everyone is equal and welcome

This group isn’t something you ‘grow out of’ it is a community of women that is evolving and growing and is there for each other no matter what. It is truly special and that is because Dawn is special and each of you are as well

We are fortunate to live at a time where first of all we have these crazy contraptions that can save our lives and in many cases improve them and that we live in this digital world where we can connect with people from all over and support each other.

 

And because I’m a huge believer in “laughter as the best medicine” the book ends with funnies shared from Facebook!  :)  The Q was if you had ever been asked a stupid or funny question relating to your device!

Helen: An elderly lady who had a friend with a pacemaker told me (before my first pm implant) that the procedure was ‘just like having your ears pierced’. I wanted to grab her afterwards and ask who the heck pierced her ears.

Claudia: The “strangest” comment I have had was a person I knew suddenly went into a long story about a friend who died and the “pacemaker” kept trying to keep them alive.

Jennifer: I had just turned 25 when I got mine. My daughter was in kindergarten and told her teacher that her mom had gotten a pacemaker. So her teacher thought I was in my 60’s. When she met me she said you’re a lot younger than I thought.

Kerri: Always the same “at your age?” Like heart disease is only a senior special.

 

There are 138 pages in between, many wired sisters shared their stories, as well as device manufacturer and cardiac-specific information, as well as the entire journey of mine – becoming wired, starting WIRED4LIFE and what it all feels like and looks like ten years later.

Wired4life: My Journey to Becoming Wired
by Dawn L Huberty
Link: http://amzn.com/1500909831

Thanks to all who have purchased the book, and a special thanks in advance for those who are sharing it with the world!  ~Dawn Huberty, WIRED4LIFE Founder

 

 

Why we do do do

On October 6th I had foot surgery; it’s been a challenge on so many levels.  Pain and restrictions kept me quiet on the sofa with good drugs and bad television to bide my time for a few weeks.

Then when I realized I could hobble around with a cane and knee walker, now it was time to get back to everything I had been silently seething over; stuff I couldn’t manage to do, or really ask anyone else to, either.  Like REORGANIZE MY OFFICE????  Not like move a few things around (stupid on a good day), but go through stuff, throw stuff away, make piles and fill bags and drag the vacuum out and rearrange and MOVE furniture (granted, plastic carts with bins, but still)!!!

I’m sitting in a room that looks awfully similar to “Hoarders” but I’m getting there.  But….I just received strict instructions from hubby this morning to RELAX, AND DON’T DO ANYTHING.  (Because massive shooting pain started occurring at midnight and continued long into sunrise).

I did.  I really did try, I should say.

I am stubborn.  Norwegian.  Virgo.  And.  Yes.  A.  Control.  Freak.

I am of the school that if it needs to get done (properly) then, I am the ONLY ONE WHO CAN DO IT.  I really dislike this side of myself.  It used to be something that was easily manageable with lists.  I was the QUEEN of lists.  But then 40 came and I started forgetting where the lists were and then I had piles of notes and lists and sticky notes and now I had more lists than chores.

I still keep lists, but they don’t really accomplish anything.  Probably because they are in notebooks and where did I put those???

I’ve ruined perfectly lovely events obsessing about EVERY.  LITTLE.  THING.

I am incredibly blessed to have people in my life that 1) know this side of me, 2) love me anyway, 3) call me on my $hit,  4) encourage me to keep growing, letting it go, ask for help, etc., and finally 5) take over when I’m having a meltdown.

Why do we have this need to constantly do-do-do???  Is it because there aren’t enough hours in the day?  Are we afraid to ask for help; lest it be seen as a sign of weakness?  Are we ‘women, hear us roar’?

It doesn’t matter if you’ve recently had a defibrillator implanted, hip replacement or teeth removed.  Take the time to heal, get better, rest.

But don’t follow my lead!!!  :)

Happy Healing!

 

Depression with heart disease

This is a subject that is difficult to discuss, but I believe a very important one.  I could have changed the title to “Depression with A, B or C health condition,” because it’s a likelihood for all who have chronic health issues or even a one-time health epidemic or condition.  However, I choose to always write about “what I know” so will share with you some of my opinions, relating to my journey in heart disease and depression.

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I believe that depression may be higher in women, although I don’t have facts to back it up; as the primary caretaker of our family units, we tend to bear the brunt of “doing” for our family – so they don’t have to ‘do.’  And in all this ‘doing’ we actually push aside our own needs in order to care for them. It’s a vicious, vicious cycle.

When we are ignoring our needs, it tends to spiral out of control.  First comes physical neglect.  We are so busy running around to care for others (keep in mind, we may be home just a few days from having a pacemaker implanted or open heart surgery), and yet, it’s our job to keep the ship afloat.  We let ourselves go; not meaning to, or even wanting to, it’s just easier than trying to squeeze the time into our already crammed schedule.

Mental neglect sneaks in the back door.  We are forgetful, frustrated, we miss appointments and even trash day.  We snap at the people we love and are nice to the people we don’t know.

Somewhere in the middle comes depression.  It’s not just being bummed out that you can’t manage your life, it’s a deep, heavy cloak of judgement and pain.  It comes on gradually, people may comment that you seem so down, or if you would just take some time for yourself, you’d be okay.  (Oh wouldn’t that be a joy, to take time for yourself!).  But you cannot.  There is stuff to be done, and you’ve not been doing a good job getting it done, so the hole you dig, continues.

Let’s step WAY BACK for a minute. 

Hey — you just had something wrong with your heart.  Maybe you had a heart attack, or a device implanted in your chest,  maybe your arteries were clogged and now you are the owner of a new stent, or heart valve.  Blood thinners and appointments with cardiology and a list of things you can’t do and a list of things you MUST do, and sure – there is a support group on Thursday nights at the local library for those with heart disease, but it runs from 5-6 pm and you must get dinner on the table.  (Ooops, but I digress)….you — yes YOU have experienced something that takes some time to mentally and physically heal from.

You will be NO good to anyone else, if you can’t take care of yourself first.

Ask for help.  Reach out to those who really love you and you can trust to be honest with; “Hey, I’m drowning here.”

Depression can continue if not addressed.

Heart disease rarely is healed with a pacemaker or even a new heart.  If you’ve got heart disease, YOU’VE GOT HEART DISEASE.

So this is something to remember.  You are not alone.  You may feel alone, you may live alone, but we are here.  365/24/7  WIRED4LIFE — here for you, here to talk, to cry, to learn or teach.  We need what you have; a heart!

Option 1 Facebook:  WIRED4LIFE (Free resource, daily posts, drawings for goodies, a place to ask questions and learn)

Option 2 Core Group:  $20 yearly due. Includes all of Option 1,  Saturday morning chats, newsletter 4x a year, snail mail birthday card, member-only conferences and/or local events, private access to groups, special prize drawings and more!  Membership is by approval.

Whichever you choose, we are glad you are here on the journey with us.  No one is an island.  You need people.  You need support.  And we’ve got literally hundreds of years of experience living with heart disease.  And for those who think to themselves: “I’m okay, I’m managing, don’t worry about me, because I have everything under control,” we are here — for when you decide it’s too much, or you just need a friend.

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Because there is no such thing as “just needing a friend.”

The joys of grandmotherhood

As any grandparent will tell you; ‘theirs’ is the cutest, smartest, funniest, talented grandchild that has ever lived!  I’m one of those grandmothers.  :)

I currently have four grandchildren, two on the way!.  Period.

I’d like to elaborate and tell you the big, long, drawn-out story about how I became a grandmother without ever having had biological children, but that explanation is only necessary for those who wish to challenge this title.

And, believe me when I tell you, I’ve been challenged; and then some!!!

The post today is about the Joys of Grandmotherhood.  So let’s keep it light and sweet, just like my grandbabies.

Ben, mid-teens.  Driving, liking girls, playing music, tall as a string bean, questions everything, adventurous with food; would 2014-02-02 15.00.45probably eat anything; just to have the experience!  Quiet, thoughtful with a smile as big as Texas.  When he says “Grandma Dawn” I melt!  :)

 

Ella Joy2014-02-02 15.56.59, “tween”.  When she turned 10, reminded me that “now she was in the double digits.”  I laughed for days over that remark!  She is tender, sweet, a spitting image of her mother at the same age.  Golden hair, big doe eyes, very matter-of-fact.  Aspires to great things.

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Dylan, little man, under 10, over 5.  A spitfire.  Opinionated.  Naughty.  Funny.  Loves Papa Jim deeply and completely.

 

 

Almost 1 year old baby Chloey.  Time spent together, few and far between, but she seems to remember my voice.  I love to touch her baby-soft skin, inhale all that is baby.  Her mother says she 2014 iphone 103is running wild now, napping exhaustingly at the end of the day.

The reality of being wired

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WIRED4LIFE.  As a community; we educate and support.  Oftentimes our support is online; a virtual hug, an email filled with information, an inspirational quote, Saturday morning chats.

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When the planets align, sometimes we meet in person, or travel halfway to connect ‘real-time.’  We also gather together in Minnesota every “odd” year, a group of wired women who learn about their devices, share their stories and perhaps for the first time, meet the sister they’ve been emailing with for three years, or talking on the phone with.  These times are very important.  Face-to-face contact is always preferable, albeit scary sometimes.  When the women arrive, I do everything I can think of to make sure they feel welcome and cared for.  And by doing so, the love and care is returned to me in ways that I can’t even explain; it’s a boomerang effect for sure.  SONY DSC

The reality of being wired means a couple of things.

1) Generally speaking, 99% of us will be wired the remainder of our life, we will continue to need our devices replaced, sometimes we will upgrade to a defibrillator, from a pacemaker, but at the least, we will be getting the ‘newest’ model.

2) The fear, anxiety and endless questions and worries will dissipate (yes, they really will) as time goes on.  You may even become friends with your device, you may even name it (Sparky or Engelbert Humperdinck — yes I’ve heard them all!).

3) With knowledge comes compassion.  The more you know about your own device, the more able you will be to share compassion, as a whole — not just with regards to heart disease, but I believe, to all who live with a chronic health condition.

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4) Having a wired friend is a life changer.  What I hear over & over again from the folks on Facebook or in email — is complete gratitude for WIRED4LIFE.  Having a place to learn, share experiences, even laughs — it’s tantamount to how they feel about being wired.  Imagine another level of community.  We have always had a ‘core’ group of women, those who make a donation to the group (due) to receive a newsletter, talk privately (‘secret’ groups), meet for Gatherings, etc. 

5) The reality is, as much as our spouse, best friend, sister or coworker want to understand, they simply cannot – unless they are wired as well.  Even belonging to a support group for ‘heart disease’ isn’t as intentional as WIRED4LIFE.  We are for people (and the core groups; only for women) who have an implanted cardiac device.

6)  We won’t live forever, but would you want to?   :)

7)  We can still have a heart attack (I wanted to nip this rumor in the bud).

And lastly, it’s not a negative.  It’s just not.  It’s a device inside your body, keeping you alive.  If you can get to the point of gratitude, you’ve got it made.

WIRED4LIFE, continuing to be here for you the past ten years, and going forward far, far into the future!

Click on this link to buy our newly published book, WIRED4LIFE.  Available at Amazon, Kindle or paperback.

 

 

It’s better to be human

We have quite a few wired sisters who are going through tough times.  And by tough I mean — situations where you and I would crumble.  The kind of heartache that just keeps coming at you, over and over again.

I have no explanation for these occurrences and it makes me crazy when people chalk it up to bad karma or just plain bad luck.

But what drives me crazier — is a pitiful attempt at making it better for the person by encouraging them to “stay strong” or remark at how “strong” they are.  Strength is overrated.  BIG TIME.  Being strong, staying strong or attempting mental strength when life is plain in the pits is not attainable and should not be expected.

This type of thinking makes me nuts.

My road has been rocky.  People have deceived and hurt me.  I’ve been tossed to the side of the road like old garbage.  I’ve been forgotten about and lied to.  I’ve been judged and had literal rocks thrown at me.  I lived 26 years with a chronic undiagnosed heart condition that was slowly killing me.  I am pretty sure I’ve been to hell and back.  But am I stronger because of it???

NO!!!

I am merely human.  And I’d rather be that, any day, than considered “so strong” for all I’ve been through (as if strength is some sort of armor that protects us from pain).

Choose your words carefully when comforting a friend or loved one.  Don’t make them feel inferior with comments of strength; let them know it’s okay and really, perfectly okay – to be human.  To not be strong.  To need help, to be able to ask for it.  Perhaps we can replace the word strength for other; more empowering words:  compassionate, giving, healing, humanness.

Humanness.

 

 

Breast cancer vs. heart disease

I see a lot of posts on Facebook and the internet, really about the coverage that Breast Cancer Awareness gets during the month of October.  It’s true, ‘going pink’ is a big deal. Whether you are a business owner or a professional football player, you can (and will) get called out for not supporting PINK.

My mother died of breast cancer in 1978, so this is a tender subject for me.  Not only was there not awareness, it was a mostly taboo subject.

I find it very difficult to believe that 35 years later there still isn’t a cure.  I tend to believe that there IS a cure, but there is more money to be made in so called ‘research’ than there would be in a cure.  How sad if that’s true.  And if it’s not true — where are the billions of dollars going?   Maybe it’s trillions of dollars by now.

However, I believe that it’s not Breast Cancer VS. Heart Disease.  It’s true — heart disease; GO RED in February pales sorely in comparison.  “We” get a special day to wear red and tell our story, and some would like to say the entire month is devoted to it — but I beg to differ.  It’s been 11 years since the American Heart Association created “Go Red for Women,” (advocacy to support women with heart disease).  But it seems to all fizzle out after the first week.

The really sad statistic?  More women have been dying from heart disease than breast cancer in almost six years.  SIX YEARS.  And more women die from heart disease than ALL OF THE CANCERS combined:(

Wear a pink ribbon, donate generously.  But please do the same when February rolls around.  Wear red, share your story with anyone who will listen.  Share the staggering statistics, help your sisters, friends, relatives get  healthy.  So much of heart disease CAN be prevented, we can’t control our DNA, but we can make better choices.

There is no such thing as “just cancer” or “just heart disease.”  Both are killers, both are tough to beat.

 

Long QT Syndrome

For this post and in the weeks ahead, we are going to be schooled on the obscure, lesser known reasons for needing a pacemaker or defibrillator.

Definition  Long QT syndrome (LQTS) is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. These rapid heartbeats may trigger a sudden fainting spell or seizure. In some cases, your heart may beat erratically for so long that it can cause sudden death.

You can be born with a genetic mutation that puts you at risk of long QT syndrome. In addition, certain medications and medical conditions may cause long QT syndrome.

Long QT syndrome is treatable. You may need to limit your physical activity, avoid medications known to cause prolonged Q-T intervals or take medications to prevent a chaotic heart rhythm. Some people with long QT syndrome need surgery or an implantable device.

Symptoms  Many people with long QT syndrome don’t have any signs or symptoms. They may be aware of their condition only from results of an electrocardiogram (ECG) performed for an unrelated reason, because they have a family history of long QT syndrome or because of genetic testing results.

For people who do experience signs and symptoms of long QT syndrome, the most common long QT symptoms include:

  • Fainting. This is the most common sign of long QT syndrome. In people with long QT syndrome, fainting spells (syncope) are caused by the heart temporarily beating in an erratic way. These fainting spells may happen when you’re excited, angry, scared or during exercise. Fainting in people with long QT syndrome can occur without warning, such as losing consciousness after being startled by a ringing telephone.Signs and symptoms that you’re about to faint include lightheadedness, heart palpitations, irregular heartbeat, weakness and blurred vision. However, in long QT syndrome, such warning signs before fainting are unusual.
  • Seizures. If the heart continues to beat erratically, the brain becomes increasingly deprived of oxygen. This can then cause generalized seizures.
  • Sudden death. Normally, the heart returns to its normal rhythm. If this doesn’t happen spontaneously and paramedics don’t arrive in time to convert the rhythm back to normal with an external defibrillator, sudden death will occur.

Signs and symptoms of inherited long QT syndrome may start during the first months of life, or as late as middle age. Most people who experience signs or symptoms from long QT syndrome have their first episode by the time they reach age 40.

Rarely, signs and symptoms of long QT syndrome may occur during sleep or arousal from sleep.

You should see your doctor if you suddenly faint during physical exertion or emotional excitement or after use of a new medication.

Because long QT syndrome can occur in families, see your doctor to be tested for long QT syndrome if a first-degree relative (parent, sibling or child) has been diagnosed with long QT syndrome.

Tests and Diagnosis  If your doctor suspects that you have long QT syndrome, you may need to have several tests to confirm the diagnosis. These include:

  • An electrocardiogram (ECG). In this noninvasive test, small probes are taped to your chest to monitor the waves of electrical impulses in your heart. The probes transmit the waves to a computer screen or printout for your doctor to see. You may have this test while at rest or while exercising by running on a treadmill or pedaling a stationary bike.
  • Ambulatory ECG monitoring. This test, also called Holter monitoring, is used to monitor your heart for rhythm irregularities during normal activity for an uninterrupted 24-hour period. During the test, electrodes attached to your chest are connected to a portable recorder that attaches to your belt or is carried by a shoulder strap. The recorded information can then be analyzed to check for heart rhythm irregularities, such as prolonged Q-T intervals.
  • Event ECG recording. This is similar to the ambulatory ECG except that you may need to wear a portable ECG recorder for days or weeks as it records your heart rhythms.

While some people with suspected long QT syndrome have a visibly lengthened Q-T interval on an ECG, others don’t, making the condition more difficult to diagnose. Other testing may then be necessary:

  • A nonexercise (medication) stress test. This ECG test is performed while you’re given a medication that stimulates your heart in a way similar to exercise. The medication is given through a vein in your arm and may include epinephrine (adrenaline). Adrenaline is a substance that your body releases in response to stress. In this stress test, doctors monitor the effects of the adrenaline on the way your heart recharges. This test can unmask in some people what’s known as concealed long QT syndrome, which is a normal Q-T interval (recharging time) at rest. In some people with long QT syndrome, fainting spells are triggered by sudden bursts of adrenaline in the body, such as are experienced during intense exercise or emotional upset.
  • An electroencephalogram (EEG). This test looks for neurological causes of fainting, such as a seizure disorder. The procedure measures the waves of electrical activity the brain produces. Small electrodes attached to your head pick up the electrical impulses from your brain and send them to the EEG machine, which records brain waves.
  • Genetic testing. A genetic test for long QT syndrome is available and increasingly covered by private and governmental insurance plans. Current genetic tests for long QT syndrome are capable of finding the genetic cause for about 3 out of every 4 cases of long QT syndrome. Therefore, it’s possible to test negative with the genetic test, but still have long QT syndrome. If your genetic cause of long QT syndrome is discovered through a positive genetic test, then family members can be tested to prove definitively whether they inherited the same genetic mutation.
  • A second opinion. You may want to seek a second opinion if your doctor diagnoses you with long QT syndrome. Treatments for long QT syndrome can be life altering, such as avoiding strenuous exercise, taking powerful medications or having surgery. In addition, evidence suggests that misdiagnoses related to this condition are not uncommon — including diagnosing long QT syndrome when it’s not actually present, and overlooking the condition when it is present.

Treatment and Drugs  It’s often possible to eliminate drug-induced long QT syndrome simply by switching medications, with your doctor’s direction. Some people, however, may need additional treatment.

Medications used to treat long QT syndrome include:

  • Beta blockers. Examples of these heart drugs include nadolol (Corgard) and propranolol (Inderal, Innopran XL). These drugs slow the heart rate and make the dangerous rhythm associated with long QT syndrome less likely. They work by blunting the way a long QT syndrome-affected heart reacts to adrenaline in times of stress, fear or exertion.
  • Mexiletine. In people with a form of long QT syndrome called LQT3, taking this anti-arrhythmic drug in combination with propranolol may help shorten the Q-T interval.
  • Potassium. Potassium is a mineral in your body, derived from your diet, that’s important for the health of your heart’s electrical system. Potassium supplements may improve the heart’s recharging system and may be helpful for people with certain forms of long QT syndrome.
  • Fish oil. Supplementation with heart-healthy fish oil (omega-3 fatty acid) may help stabilize abnormal heart rhythms. You should talk to your doctor before starting fish oil or any other supplements and medications.

Your doctor may suggest treatment for long QT syndrome even if you don’t experience frequent signs or symptoms of the disorder.

If you do need treatment, take the medications your doctor prescribes for long QT syndrome as directed. While medications won’t cure the condition, they provide some protection against potentially fatal disruptions of your heart rhythm. You may need to take a medication such as a beta blocker indefinitely.

Your doctor may consider two other treatments for you:

  • A pacemaker or implantable cardioverter-defibrillator (ICD). These devices, which are implanted under the skin of your chest, can stop a potentially fatal arrhythmia. An ICD continuously monitors your heartbeat and will deliver electrical shocks to restore a normal heart rhythm when necessary.
  • Left cardiac sympathetic denervation surgery. In this procedure, specific nerves in your chest are surgically removed. These nerves are part of the body’s sympathetic nervous system, which controls automatic functions in the body including regulation of heart rhythm. Left cardiac sympathetic denervation surgery significantly reduces the risk of sudden death.This surgery is generally reserved for people considered at high risk of sudden death, people who do not tolerate their medications or have a fainting spell despite their medications, and people who have an implanted ICD. Left cardiac sympathetic denervation surgery may significantly reduce the frequency of ICD shocks.

In addition to medications or surgery, your doctor may recommend some lifestyle changes to reduce your chances of a long QT syndrome-related fainting spell. These could include avoiding strenuous exercise or contact sports, reducing loud, startling noises, and staying away from situations that could make you excited or angry.

Work with your doctor to balance these lifestyle recommendations against the clear, heart-healthy benefits of an active lifestyle. In some circumstances, it may be possible to stay fully active in sports, including competitive sports, after carefully reviewing the risks and benefits with your doctor.

If your symptoms are mild or don’t occur very often, your doctor may recommend only lifestyle changes as treatment for your condition.

Information provided by Mayo Clinic.  Illustrations Bing.com/images

For further support, please contact the SADS FOUNDATION