SSS

I’ve been hard pressed to find a pic or infographic that shows what Sick Sinus Syndrome looks like.  There are tons of EKG strips given as examples, but to the common folk, such as myself – they make little to no sense.  A person blowing their nose had me giggling.  :)

The definition of SSS (Sick Sinus Syndrome) is a heart rhythm disorder:

  • Sinus bradycardia: This occurs when the natural pacemaker of the heart does not send out a signal telling the heart to beat often enough. The heart beat rate is slow.
  • Sinus pauses or arrest: This occurs when the natural pacemaker of the heart stops sending out signals telling to heart to beat for periods of time.

People with these disorders may also have other abnormal heart rhythms, such as:

  • Supraventricular tachycardia: This is a fast heart rate that starts in the upper chambers of the heart (atria).
  • Bradycardia-tachycardia: This is a pattern of alternating slow and fast heart rhythms (sometimes called “tachy-brady syndrome”).

There are many a diagnosis or age at which a person develops SSS as posted on our FB page this morning:

Christine V:  Looking back, I was probably about 12 when the symptoms were present enough for me to be aware of them. It took many years of doctors to get a diagnosis and pacemaker. It has changed my life.

Julie R:  Good question. I do believe as a child this was a factor in my life, though it was never diagnosed til 8 yrs ago.

Patsy F:  I don’t know for positive, but believe as an adult. But like others, it was years before a definitive diagnosis when it and my afib was finally caught while wearing a holter.

A pacemaker and/or ablation may be necessary for the diagnosis of SSS.  Also a particular med may be tried first.

 

 

 

Your diagnosis

On Facebook yesterday I asked:

Please share your original diagnosis for receiving your pacemaker, defibrillator or heart valve/s. Also your age at time of (first) surgery.

We ended up with over 70 responses!  Here are a “few” of those posts!

 

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Sherian Kaneaster McCoy brady/tachy – Sick Sinus Syndrome, age 42 – caused from internal shingles.

Valentine’s Day Clearance

What better way to get the word out?  A blog post!!!

Our 4th WIRED4LIFE “I Love My Heart” Gathering of Women is in September!  We need all sorts of heart shaped doodads, earrings, prizes, decorations, etc.


The only NO-NO is anything that says:  “(Happy) Valentine’s Day”, okay??  :)

If you find goodies and would like to share with us; ship to:  WIRED4LIFE, 1339 Oak Street, River Falls, WI  54022

THANKS!!!!

Here is a sampling of doodads used in previous years from people just like you who’ve sent goodies!

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SONY DSCSONY DSCSONY DSC OLYMPUS DIGITAL CAMERAThe tablecloth & heart shaped servers!

 

 

 

 

Pretty placemats, heart shaped bowl, wooden roses!

 

 

 

 

Doodads for decorating, heart shaped frames!

 

 

 

 

Pin the heart on the giraffe game!

 

 

 

Red shaped plates, cups, napkins!

 

 

 

 

Doodads for tables!

It’s February — GO RED!

It’s that time of year again!!  Wear red Friday, February 6th, all day!!  Share your story, use wearing red as a conversation starter!  It doesn’t have to be your whole life story, just how you ended up with a pacemaker, or heart attack or your involvement with WIRED4LIFE.  One person CAN make a difference, a ripple becomes a series of ripples, which become gigantic waves!  Let’s make a wave!!!

On January 27th, wired sister Janie and I attended the Twin Cities Go Red for Women luncheon in Minneapolis!  We had a great time along with 700+ other women!

 

 

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Remembering Joyce

Yesterday, our wired  sister Joyce passed away from complications unrelated to her heart issues.  To many in our community, Joyce was a breath of fresh air who frequently liked to discuss in chat or post on her FB page weather statistics.  Although Joyce lived in Maine, we shared similar weather (in western Wisconsin).  Joyce bragged about her granddaughters, who were grown women, but in a way of deep pride, Lisa loves working with animals and boy does she like her Jeep.  Trisha experiments with cooking, the same way I have. 

Joyce and I had a special friendship, and it was her frequent discussion in our Saturday morning WIRED chats about the many kinds of pies she liked to make that led my husband I to plan our vacation around those pies!  We took our first trip to Maine, spending time in Kennebunkport and further north, in hopes of finding moose.  We arrived at Joyce’s home to meet her entire family; son John, wife Norma, granddaughters Lisa & Trisha; their boyfriends, and another surprise — our own wired sister Jean-Marie, who as it turned out, lived in the SAME small town as Joyce.  There were 5, count them — FIVE pies that Joyce had made special for our party.

It was a really special day, and one that helped cement our friendship, two years later, Joyce came to visitSONY DSC us for 9 days (June 2014); it was an experiment of sorts, to see if Joyce could handle traveling alone and managing her oxygen machine — in order to attend the 2015 WIRED4LIFE Gathering in September.

We had a wonderful time; SONY DSCshe had always wanted to check out an IKEA store and we just happened to one near the Mall of America.  We spent an entire day there, enjoying lunch in the cafeteria and exploring the store.  It was really fun!

I also introduced her to my lSONY DSCocal friends; Joyce and I made a special meal to serve at this luncheon.  Mari, Marge, Nellie, Steelie and I regaled Joyce with the stories of how we had met.  We added Joyce to our circle, and we oohed and aahed over the delightful pecan pie.

One Sunday afternoon we took Joyce to see the llama’s, a friend has a farm out in the country.  It was a great day!  Rest in peace, sweet Joyce, until we meet again! xoxoox

 

The language of friendship is not words but meanings. ~Henry David Thoreau


 

 

 

 

 

 

Third World Heartache

There is no greater heartache than being told you need something to live and not being able to afford it.

Federico Alfaro, MD, a Guatemalan physician, was treating a seventeen-year-old patient. The boy had a heart condition cardiologists refer to as “heart block”, an affliction in which the heartbeat continually slows until one day the heart just stops pumping. The boy’s condition was curable. The problem was he was poor. Dr. Alfaro tried desperately to find financial assistance to provide the boy with the pacemaker he needed. But in the end he had to watch the boy die.

Heartbeat International has a long history of saving lives in developing countries. Cardiovascular disease (CVD) is the world’s number one killer, but it disproportionately affects poor populations that do not have access to healthcare and prevention awareness. According to the World Health Organization, of the total 17 million annual CVD deaths, 82% of them take place in low- and middle-income countries. Focusing on those populations, Heartbeat International currently works in 15 countries with a network of local doctors and hospitals who donate their time and expertise to help save the lives of their countrymen. We have three main programs:

  • Pacemaker Program – For more than 25 years, we have been saving the lives of patients (link to Our Patients page) that do not have the economic resources to afford the pacemaker and ICD operations needed to survive. Relying on our network of generous medical manufacturers, doctors, and hospitals, we have saved more than 11,000 lives!
  • Doctor Training- We host an annual workshop for our volunteer doctors to help spread technical and practical knowledge of the latest advancements in the cardiovascular field.
  • One Heart Global Cardiovascular Alliance – Our guiding vision, this alliance is our solution to the growing cardiovascular epidemic that is predicted to worsen in the coming years. We are determined to counteract it with the help and collaboration of other like-minded organizations.

If you’d like to make a very important donation to an organization that is desperate to help more people across the globe receive a pacemaker — please consider Heartbeat International.

Biotronik, Medtronic, St. Jude Medical and Boston Scientific are all partners for this organization.

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Heart Disease Wanted

Can you imagine if, mixed in with your junk mail were flyers advertising for heart disease?  Not for cures, but the opposite; for the actual disease?  Would you be mortified?  Would you think the world had gone wonky?

Were you one of the millions that was thrilled when the magazines stopped accepting advertisements from cigarette companies?  Or when Petco announced last week they would no longer sell dog treats that came from China?  I cheered!  Great news!  Save the people!  Save the doggies!

But when you continue to smoke cigarettes, eat whatever you want “damn the cholesterol readings,” and adhere to a life as a couch potato, you might as well know that you are contributing to your own heart disease (and diabetes, obesity, lung cancer, the list goes on).  Yes YOU.  It’s your fault.  You are to blame. 

You are telling heart disease; come get me.  Here I am. 

It’s not a pretty concept, yet this is what people do.

Is this too harsh a conversation to have?  I don’t think so.  I smoked through TWO pacemakers.  I knew it was bad for me, I knew it was extremely hard to quit, I made a lot of excuses and hid my habit.  But it’s hard to hide the stink of a cigarette.  I quit in 2008.  I breathe so much easier now, I’ve yet to have a cold turn into bronchitis, I no longer have a chronic cough, I am not wasting thousands of dollars on cigarettes ($60 a carton????), are you nuts?  I smoked for nearly 30 years, there was never a thought in mind of how much money I could save by quitting.  You need a reason to quit and it better be a good one so you never go back.  Do you know what it was for me?  My husband gave me an ultimatum, keep smoking or keep him.  Cut and dried.  No attempts to quit, “MUST QUIT.”  I called my doctor, she ordered Chantix, by the end of the first week I had quit and I never resumed.  I chose my husband, but in reality — I chose ME.  I chose to live.  Powerful words.

The entire month of February is dedicated to supporting and educating women about heart disease.  If you already live with heart disease — then I sure hope you understand that it’s your job to educate all of the women in your life about the risks; and then the choices.  The healthy choices.  Some of us are born with heart defects, some learn about the need for a pacemaker from the aftermath of a car accident, some took diet pills and wrecked their heart, some were born with pieces missing from their heart (walls, valves, etc.).  No matter what brought you to a life with heart disease, you are here.  Do you want to live a healthy, long life?  QUIT doing whatever you are doing that is counterproductive to that outcome.

This is preachy, I know.  But it’s for me — as well as you.  I’ve been sitting on an extra fifty pounds around the middle (my muffin top is actually an entire muffin!), I have pain in my knees and hips – this makes it hard to exercise.  But I have good days,  and when I have them — I need to refocus my energy on losing the weight and getting healthier, so I can continue to enjoy a long life with my husband, but even more so — for me.  To enjoy my own life; healthy and active.

The WIRED4LIFE fan page is to encourage, educate and provide a few laughs as we go through life together; but every now and again –  I realize, it’s time to crack the whip, tighten the belt, remind our friends and fans of why we are here in the first place.  What is your motivator to even be alive?  Your kids?  Your family?  Career?  ??  How about YOU?

 

 

 

You will live

The past couple of weeks have been incredibly challenging for me; regarding health issues.  Pain caused havoc on my physical & mental state of being, a torn tendon felt instead like a ripped piece of cartilage, pain like I had never known before.  As I battled my way through pain, a cold bug knocked me down hard, and for 72 hours I could not will myself out of bed.

During this time I was angry at my body for not responding to what I felt it needed; ice, heat, drugs, rest, fluids and crackers.  I could not sleep and was desperately tired.  The more I fought, the harder my body resisted.

The advice of others was lurking just past my state of normalcy.  “Slow down.”  “Rest.”  “Drink ginger ale.”  These all seemed ludicrous.  Yet, out of desperation I succumbed to the advice.  I drank an entire bottle of ginger ale (thank you, wired sister Nelly Schroevers!) in six hours, it felt so good on my throat, it seemed to calm my tummy.  I rested and slowed down to a snail’s pace.  I sat on the sofa watching all of my DVR shows, I napped frequently, I stayed off the computer and even my phone.  No one called.  No one asked of me what I couldn’t possibly produce.  No one expected dinner on the table or chores to be done.

I asked for prayer and let my own lapse, I didn’t have the energy to pray.  I didn’t have the energy to function as a human being.  I was letting myself off all of the hooks.  Just curl into a ball to get better.

As the pain raged and the incessant sneezing continued, I started to feel better.  It was actually pretty amazing.  I looked at the clock and it was 12:30 on Monday afternoon and I realized I hadn’t coughed in hours.

It was the prayers.
I believe this with 100% of my being.

As a sidebar, my sister likes to remind to speak in the positive.  So instead of saying:  “I’m not sick.”  You are to say:  “I’m feeling healthy.”

Lastly, know that no matter what is bothering you, you will live!  You will feel better!  You will smile again.  :)

HAPPY HOLIDAYS

On behalf of our entire wired community, I wish you a happy-whatever-you-celebrate!  May your heart be happy, healthy and may your time with friends and family be peaceful. In our home we celebrate Christmas, so I will share this poem with you! ~Dawn Huberty, Founder WIRED4LIFE

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!

hooray

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