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

WIRED4LIFE: The Book

Today was a very emotional & uplifting day for me.  When I left the house this morning I knew the WIRED4LIFE book (Kindle Version) was going live in a matter of minutes.  I was heading to Bloomington, Minnesota to have lunch w/ a couple of wired sisters.  I would be meeting one for the first time and seeing again, one from our last conference.  I arrived having just enough time to peek on my phone to see the link on Amazon.  I really wanted to jump up & down – like they do in the Toyota commercial, but I forced my feet to walk on the ground; like normal feet would do!

The sisters met (Judy & Lori), we hugged, did introductions, ordered food, sat down to visit, learn about each other.  Out of this conversation came laughs, a few tears, facts (thanks, Paul – Lori’s husband), even God entered (although He was really always there).  I shared a bit of my excitem10715668_687431348001384_2048039209_n (800x600) (2)ent about the book, but since I hadn’t really explored it much – or even posted on Facebook, or the world — I was able to contain my beating heart (I believe the pacemaker worked double duty today)!  We took a few pics, and each went our separate ways.

I had less of a mile drive to my next destination, a visit with my first MIL Pat Maniatis.  We spent a good three hours catching up, reminiscing, sharing tears and laughter, hopes and dreams, health issues, dog stories and so much more.  We have always been able to talk honestly to one another; we’ve tackled the really hard stuff, smiling through our tears.  God blessed me deeply and reverently with this, my second mom.  I looked at my watch!  YEGADS, I must get home to Max!  It will be almost 7 hours since I left home and even though he is a good boy, I don’t want to push it.

I sat in awful traffic for an entire hour.  I had moments of anxiety that has haunted me since my pacemaker changeout in June.  This time I just went through the anxiety.  I let God take it because ultimately that is how He works best in my life.  I complain, I carry on, I say I can’t do this anymore and then the work starts!!  Those who have lived through dark nights of the soul know what I’m talking about.  The work doesn’t start when you say “Oh God, save me.”  It just opens the door — gives Him permission to start the hard work.  But I digress, back to the story!!!  :)

So I finally arrived home.  I went right to my laptop, downloaded the e-version of my book to my Kindle and breathed a gigantic sigh of relief.

It’s done.

It’s out there.

Update:  The book is currently available on Kindle and paperback at Amazon.  Just type WIRED4LIFE!  

Thanks to every person who has been a part of the WIRED journey, if not for you — I wouldn’t be here today, with a blog, a website, and now — a book!!

WIRED4LIFE, the book!

41KA7ez6DGL._SS300_

The 21st day of never

Something is in my craw.  So watch out – this could turn into a soap box post!  I’ve heard from two different women this week and one is under the impression that it’s true — that age is a factor in receiving a pacemaker or defibrillator.

One has zero to do with the other.

I should have been implanted with a pacemaker as a baby; but a proper diagnosis was not made until my 26th year of life.  In nine years of doing WIRED newsletters, we’ve had more than one sister share a story of shock and disbelief:  “I thought I was too young for a pacemaker.”

In the October newsletter we will highlight a company called “PaceGuard” they created a special shirt and disk to protect children with a pacemaker or defibrillator, so they can safely play sports.  So…if you think you are too young (or your doctor) thinks you are.  Think again.  There wouldn’t be a need for this sort of disk – if children weren’t receiving implanted devices, and just like with grownups – they are usually implanted in the chest, below the collarbone.

I am surprised that age has anything to do with this subject.  I was born with a birth defect, I have bad wiring, my heart is okay, but the electrical system is junk.  Without a pacemaker, I would not be alive.

So to all of you hokey-pokey doctors out there that are telling patients:  YOU ARE TOO YOUNG….go back to school.  At least dig out some modern medical journals, have your ten-year old grandchildren explain how the internet works.  Heck – call Boston Scientific or Medtronic and ask how it’s possible that a 24 year old woman might need a pacemaker.

But whatever you do–RETIRE!!!  Seriously.  We have enough issue with women being turned away, sent home to “lose weight” or “it’s all in your head,” to now hear — “it can’t be your heart, you are too young.”

And for those who are hearing these words from a medical professional:  GET A SECOND OPINION!!!

 

The mirror concept

It was a little over three years ago when I first met my BFF Nellie.  She was the facilitator of a women’s circle in our town.  I had never been to a circle, so wasn’t sure what it was all about; we decided to meet for lunch, to talk and get to know each other.

I am not a shy person, but it can be uncomfortable to meet someone blindly; “I’ll be wearing a red sweater.”

Nellie was very good about explaining what a circle was (and wasn’t); it wasn’t witchcraft (which I was imagining for some reason).  It had no religious or even spiritual basis, it was simply (and complicatedly) time set aside in which a group of women, who sat in a circle were able to share themselves and be heard (without interruption).  You were given a ‘talking piece’ and when it was your turn, the floor was yours.  It was really uncomfortable at first, all eyes looking at you, ears wide open, no advice, no chatter.  Just a few nods of the head.  When you were done, you handed the talking piece (maybe a ceramic angel, or a smooth stone) to the next person.  When they began sharing, you listened ‘with the ear of your heart.’

But I digress, in order to learn the ‘mirror concept’ I needed to share what the circle was all about, and how I learned (and continue to learn) how to care for others while caring for myself.

The circle, and this group of women changed my life on so many levels.  After we settled in, there were on average six women who consistently joined the group twice a month.  I have remained friends with all of them, although some I rarely see and some I see regularly.  All touched my heart and all shared their ‘grit.’  One thing I really valued about this group was that it wasn’t sunshine and moonbeams.  We were able to safely and productively unload the emotional baggage that we’d been carrying – for some, our entire lives.  It was incredibly cathartic to ease it out, let it go, pray it away.

If not for Nellie and this group, I wouldn’t have found myself sitting on my basement steps bawling my eyes out at 12:30 in the morning, the evening before the second WIRED conference was to begin.  I sniffed and babbled:  “I can’t do this, what if.. or that, I am not sure…”  I went onto say:  “I wish I was more like you; wise and smart and you know what to do.”  Nellie replied with:  “What you see in me, is what I see in you, I am a mirror, a reflection of you.”

WHAT?  It made perfect sense, it was clear and articulate and it made me realize that it was exactly what I wanted to portray to the wired ladies that were coming here to Minnesota – from across the globe to feel and know.  I desired for them, to get back – what I was putting out.  Wisdom, peace, education, love.

My intentions, although oftentimes flawed, have generally been made with good and positive thoughts.

I desire to be a reflection of goodness, honesty, peace and imperfection.

 

 

Goodbye August, Hello September

The seasons are changing “just like that.”  Kids are back to school, there is a hustle and bustle in the air; perhaps in anticipation of upcoming holidays.  When the leaves start to change color and drop, I feel a renewal taking place.  Cozy fires, hot chocolate, warm sweaters, hearty stews.

I’ve always loved September, not just because of my birthday, but also because I enjoy cooler temps, less bugs, almost no humidity, and to be honest, more play time at the park, no kids that Max feels necessary to chase (teenagers in particular)!

Max would agree, as would his friends! 

What do you look forward to when the seasons change?  Please share your thoughts.  I’d love to hear what you have to say!

Everything old is new again

I used to think that only a few select people “knew” me but I’ve been told that I’m an open book.  Speaking of which, as I continue to edit the WIRED book (Amazon made 70 ‘suggested edits’!!!) I am in the process of working with Arthur Cantu (WIRED fan page moderator and techno-whiz) on morphing the WIRED WORDS blog into our WIRED4LIFE.net website. 

Arthur has a busy life, as do I, but we are both hopeful to bring everything together in one place in a relatively short period of time! 

My difficulty in understanding social media is that there are so many differences between all of them and many people use one or the other, but not all.  So in order to please everyone I’ve joined all of them:

  • Twitter
  • Facebook
  • Tumblr
  • Pintrest
  • YouTube
  • LinkedIn
  • Instagram

But I simply do not have the time or inclination (or memory) to post on all.  Arthur will make suggestions and I will decide with his help what best serves the WIRED4LIFE community.

I appreciate your continued support; be it financial, positive posts and emails, ideas, suggestions, whatever and however you contribute to my online life.  

~Dawn

Re-wired

On October 1st 2014, after a nine month hiatus, our WIRED4LIFE newsletter will resume.  We will publish four times a year; each season (Autumn, Winter, Spring & Summer).  We will have quite a few new columns and of course, ‘wired sister’ stories, which is, in my opinion the bread & butter of the newsletter. 

Why the break?  Well, funny you should ask.  I wanted to focus on writing the WIRED book, which is now in final proofing, cover artwork and will be sent to Amazon later this week!  Managing this blog, the Facebook page and the overall work that is involved in keeping WIRED4LIFE afloat meant that I couldn’t add the newsletter to the equation, it was simply, too much work for one person.

I have learned in 49.8 years of life that committing to something or feeling like you should be committed are two different things, although sometimes it feels like the same thing.  I’ve been chasing my tail for a couple of years now, trying to accomplish all that I can.  And still, the ‘to do’ list remains long.  

4 issue subscription:  $10/check, money order or PayPal (you pay fee).  Or women only:  $20 a year includes membership to our core group.  Details/info:  dawnhuberty@wired4life.net

 

 

100happydays

#100happydays is the new thing.  Have you heard of it?  Not being privy to the hash-tag phenomenon, I’ve kind of brushed it away.  However, this morning in our Saturday morning chat, a wired sister shared the link and right away I signed up for it.  I posted a pic of my grandkids and started out the 100 days with my love for them.  It’s an interesting concept — can you commit to 100 days in a row of sharing happiness?  If so, check it out:

Happiness is short lived for a lot of people.  Their grief, suffering, pain, absence of love or money, frustrations, stress and overall heartache restrict the human need for happiness.  I personally feel happiness is like bread or water, we can’t live without it for too long, before we shrivel up and die.

What makes you happy?  Let me share my short list:

  1. My faith in God.
  2. Relationships with genuine people.
  3. Lemon drops.
  4. Road trips.
  5. Fur babies.
  6. Grandchildren.
  7. Belting out songs on the radio.
  8. Meeting a wired sister for the first time.
  9. Date night with hubby.
  10. Beautiful quotes.
  11. Pinterest.
  12. Finding lost items.

Share your happiness! 

WIRED Loss

Yesterday I received an email letting our WIRED community know that a sister had passed away.  Eadie was from Scotland, she joined in 2005 and shared her story in the May 2006 newsletter, I have included here along with a few pics to honor her beautiful life!  Rest peacefully, Eadie! xoxoxo

Tell a bit about yourself, personally. Marital status, children, pets, where you live, what you do for a living, hobbies, interests, etc. Over here in the United Kingdom, it is still quite cold yet sunny and all the bulbs are through now and the first grass is being cut; we also have had springtime clock adjustments so officially it is springtime. The reality is that two weeks ago we had some more heavy falls of snow here in Scotland and now the winds are bitterly cold.   Perhaps you have heard of Edinburgh? Well I live near to the International Festival City. We are really very lucky as we live in a little village near the sea and the hills and right on the door step are some of the best golf courses in the world.

eadieI am Eadie and I have been married for as long as I can remember to my soul mate and best friend; and we are both retired. Our two sons are grown up now and independent though both live near to us and because of that we are close as a family. My eldest son is married to a wonderful girl from the USA; so she is like the daughter I never had and she is very supportive and encouraging, and as we both come from a nursing background we can discuss health matters and she is always ready to update me on any topic. My younger son lives near to us too; and both sons despite being very busy people are always ready to support their parents in any way that they can.

heatherOur “baby” Heather and my companion now is my little Yorkshire Terrier or “Terrifier” as they are sometimes known!  My main hobby is card making for family and friends. I also read magazines, watch TV. and like to chat with my friend. I get very tired easily and find that my concentration is poor due no doubt to the medication I take daily for cardio and chronic pain problems.

Describe life prior to your PM diagnosis, what symptoms did you have, how did you feel. Life prior to my implant was not too much different from now, except that I did not have or require so much help and support and at that point I did not have diabetes which I now control with diet and medication. I now have a career and home help who aids me with basic tasks which cause me extreme tiredness and pain, so relieving a lot of the pressure and frustration from my life. Before my implant I had several other chronic conditions which I was coping with, but could not understand why I continually felt dizzy, lightheaded and very, very tired. We also had to move to a smaller ground floor house as I could not manage to get up and down stairs, so that was a big upheaval but thankfully we managed to stay near family and friends.

Describe the events that lead to your PM, your diagnosis, the surgery, afterwards, how you feel now. I have had my Pacemaker now for four years, my “anniversary” is just past in March and I will not forget the circumstances which led up to my implant. As you may or may not know our medical diagnostic system is very different than in USA. For instance, we have a National Health System, but the “system “is always under pressure from change, lack of staff, or lack of cash so we as patients have to be very patient.

Basically I had complained of light-headedness; passing out; tiredness constantly for a long time and everything was attributed to the fact that I suffer from chronic pain. This only made me more and more anxious until I give up asking and did less and less, guess I was pretty low and feeling as though I had no more strength to cope.

We decided to have a change of scenery as I had had two severe viral infections and it was our wedding anniversary that weekend. I had a vomiting bug for six weeks on and off and this had left gastric reflux problems and chest pain. I checked my BP and pulse only to find to my horror that my pulse was 28 BPM! I had Bradycardia. My GP sent me to a Cardio Specialist for ECG and Echocardiogram plus X-Ray only to be informed that I had better cancel our anniversary trip as my results had just shown I was going straight into surgery to have a pacemaker implant. My problem was a conduction and electrical fault and I was in complete heart block.

Perhaps this was one of the best anniversary presents I had ever received! Everything healed up nicely and the operation was done under local anesthetic. All subsequent checks are done at my local hospital and I have since paid other visits to hospital with chest pain and required adjustments and angiograms. I now know that the pacemaker is doing its work and I have to work at keeping my other chronic problems in check which is very difficult. When you get your pacemaker your life will change for the better hopefully.

Pearls of Wisdom? I have had many discussions with doctors about health, but nobody knows your body like you do, go with your gut feeling and make it clear how YOU feel. Take all the support (W4L) and help that is offered to you…physically; spiritually and emotionally; as you are going to need it and you will always feel better when YOU can return that help no matter how small a gesture.

Do plan, BUT not too far ahead as you will only get ahead of yourself, one day at a time is just fine!

I hope that in my lifetime that the life of the pacemaker battery can be extended and this will mean fewer replacements for all of us. I do not think about my pacemaker at all now; guess you have more “awareness of the implant” at the beginning.

 

People ask the dumbest questions

This was our post on Facebook yesterday, I wanted to share a few with you; the majority will be added to the new WIRED book I’m writing!  We had asked our “fans” to post the most ridiculous or funny comments that they had ever heard on their pacemaker or ICD journey!  Feel free to post own funny!

Liz:  A complete and total stranger once pointed at my pacer scar and asked me if I got stabbed. I looked at her with a straight face and said “Yes, in prison.”

Arthur:  I had someone tell me that I should wrap my chest in tin foil, because the NSA can track and record all of my conversations and movements using my pacemaker.

Sherri:  Went in for a chest X-ray. While I was dressing back up the girl pulls back the curtain and in a panicked voice said, “Do you know you have a pacemaker?” I said just as panicked back, “No, how the hell did that get there!”

Mary:  I went to the er with kidney stones once and my pm is located in my abdomen so it confuses a lot of people… A nurse came in after my imaging, pulled the curtain all secretly like, and whispered, “Do you have something implanted in you?” I was in too much pain to make a joke and just told her that it was my pm, but my dad said next time I need to say in shock, “That alien abduction was real?!!!” Hahaha.

Jennifer:   I had just turned 25 when in 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 your a lot younger than I thought lol