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Wednesday, July 21, 2010

I am WIRED4LIFE! Are you??

 

I know, you are all probably thinking what is WIRED4LIFE. It is this amazing group of women who all have pacemakers or ICD’s implanted to help with their heart arrhythmia's or heart conditions. These little devices keep our heart on the straight and narrow, in some cases keeps us alive. When you are faced with such problems, it can be very scary. That was the case with me. I became “wired” on April 13, 2009. My heart will not beat without my pacemaker. I am pacemaker dependant. That alone makes me very scared. It is very hard for my family and friends to sympathize with me because without one, its very hard to know how someone really feels with one. That is why I was so incredibly blessed to find this amazing support group for women who are “wired”.

I want to introduce you to Dawn Huberty, founder of WIRED4LIFE. She has become someone extremely important in my life. She introduced this whole world of new friends and supporters that DO know exactly how I feel.  This is a sisterhood with a bond that can never be broken, we are all wired for life.

dawn

Dawn was lives in River Falls, WI with her husband Jim.  They own a auto repair shop in Maplewood, Minnesota. Dawn enjoys thrifting and chatting with her wired sisters.

I asked Dawn a few questions about her health conditions and how Wired4Life came to be. I want to share her answers as she wrote them. She has such an interesting story…

2. When did you realize you had heart problems. When was your PM implanted?

I was born with a heart defect, suffering my entire life with an undiagnosed heart condition.  I had lived with repeated fainting spells from infancy until the age of 26, when I was experiencing them up to ten times a day!!  I had to stop driving, and I basically quit living for fear of fainting in public.  On October 15, 1991 I lost consciousness after a fainting spell and was hospitalized.  Two days later after extensive testing I had my first pacemaker implant.  I was relieved to finally have an accurate diagnosis after 26 years

3. How hard was it for you to adjust? Mentally and physically.

It was not hard for me to adjust, mentally or physically, I was young and quite active, not worrying about tomorrow, just living for today.  One month after my surgery, my dad and I flew to Amsterdam to visit my brother who was stationed in the Air Force there, we spent nine wonderful days touring Germany and Holland.  I spent the next 13 years living like any other healthy person, not really thinking much about my pacemaker!

4. What made you decide to start Wired4Life?

In 2003, about a year before my 2nd implant I was having concerns about the surgery, recovery time; my ... how 13 years had changed me!! I was now a worry-wart, not as carefree as my younger self!  Not only did I have questions, but I had also been dealing with other health issues, not knowing they were heart issues too!

I had two TIA's (mini-strokes), I couldn't imagine they had anything to do w/ my heart, afterall, the pacemaker was supposed to solve those problems, but I was worried as the doctors said I could possibly stroke out with severe symptoms if we didn't resolve this.  Turns out I had a hole in my heart (PFO); and one year after my pacemaker implant, a septal occluder (a patch to close the hole) was implanted.  In two years I had two heart surgeries.  Certainly they weren't as serious as open-heart surgery, but they each had risks and it made the worrier in me come out even stronger!

After discussing some personal questions with my pacemaker nurse (how can my bra strap stop irritating my scar, what sort of things do I have to stay away from), she suggested I start a local support group for women with pacemakers - because we had different issues than men, and like myself, most women were born worriers!!!

I started WIRED4LIFE as a local group in St. Paul, but couldn't get a regular number of women to attend; so decided in late 2004 to stretch our outreach to the world, and it ended up MUCH MORE successful, even women who aren't internet savvy (some of our older members) can receive the newsletter via email or snail-mail, we talk on the phone instead of the computer!  I try to always be available one way or the other to the members!

5.  Who, if anyone, has been your biggest inspiration throughout this journey?

My mother passed away in 1978, and my dad in 1993, just two years after my implant.  Both of my parents in their own heavenly way have guided and inspired me down this 'wired' road.  However, my earth-angel and biggest supporter has always been my husband, Jim.  He is just one of those men that is who he says he is; very real, caring and extremely supportive of every part of me, from my health issues to what I want to do with my time; and my time the past six years has been spent growing WIRED4LIFE.

6.  Can you tell me about the daily operations of Wired4Life? 

It's never daily unfortunately, because I have always worked full-time either in my own career or working with Jim at the shop.  The time I find for WIRED is when I can squeeze it in; early in the morning, late at night, in-between fun times during the weekend and there is always a big crunch time for me at the end of the month, to finish the newsletter!  When I have time, I'm working on the monthly newsletter, tweaking/adding content to our webpage as well as our Facebook FAN page!  I keep track of dues; send expiration notices, reminders, update my spreadsheet, send packets of information out, write grants, promote the group through internet advertising, and dream/write about our 2011-2nd annual conference!

7.  What is your goal for Wired4Life short and long term?

Short term is to keep stretching our wired arms out into the communities of this world, to educate women about living life with a pacemaker, as well as knowing that emotional support is just a phone call or email away!

Long term -- oh my, the list is long!  I'd like to educate emergency room doctors as to the symptoms that women have; so different than men in regards to heart pain/symptoms.  I would love to get ALL of the device companies on board and possibly under our umbrella in a way that would support the women of the world.  Medtronic and Boston Scientific have been amazing, providing mentoring at every corner, but there are lots more device manufacturers that need to get familiar with WIRED4LIFE and lastly, of course I'd like every device/pacemaker clinic, heart hospital and cardiologist across the globe to know who WIRED4LIFE is!!!

See what I mean…Dawn is an angel! I really want every one of my readers to know how much this group has helped me. When I am feeling sick or depressed or even happy I have a wired sister ready to share words of care and uplifting me to a better place. They know how I am feeling because they go through it too!

WIRED4LIFE has an angels program. You can donate $20 to WIRED4LIFE and pay for the membership of someone who is unable to pay that needs the support like I do. Someone was an angel to me and I am soooo very thankful! If you would like to donate, please contact Dawn at dawnhuberty@wired4life.net.

I would like to share the mission statement of WIRED4LIFE. It sums up what this group is all about.

We are women, from every nationality, living in every part of the world, practicing every different aspect of spirituality and healing.

The one thing that connects us together is that we are ‘wired.’

Our group:  WIRED4LIFE is an international, online pacemaker support group for women.

We provide not only information and education, but also friendship and camaraderie.

Not every woman with heart disease will need a pacemaker; but if she does – our group is meant to provide support and understanding.

3 comments:

  1. I am so thankful for wiredforlife. I have an ICD. I'm 33 years old and have a form of untreatable, progressive, and irreversible cardiomyopathy and have survived one SCD and lots of mini-traumas. And my friends don't understand my fears, anxieties, concerns. So this group has been absolutely wonderful. it's so nice knowing you're not alone.

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  2. The only woman in the world who is luckier to know Dawn & be a "Wired Sister" is myself. Thanks to our wonderful mother, Sally, I am Dawn's sister. I gladly share her with all her Wired Sisters- because I know she has unending room in her heart to love & care for all of us. Thank you, Cara, for seeing this incredible woman as I do and making the sun shine on Dawn's little patch of the world! San

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