Pulse - Spring 2009

• 2009-06-28

Welcome to the Pulse, the semi-annual newsletter that provides club news and information of interest to our battery-operated members.

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Social Weekend Event 

You and a guest are cordially invited to attend our first official social event. It’s a great opportunity to meet other members, have some fun, learn more about your device and support Heartbeat International.    Sheraton Riverwalk Hotel, Tampa, Florida
September 25, 26 & 27 2009


Tentative Agenda Friday, September 25 6:30 - 9:30 PM 
Meet & Greet Reception (Pool Side)
Cash bar, appetizers will be served, casual dress Saturday, September  26 9:00 AM - 11:00 AM
Educational Session
Coffee & snacks will be served, casual dress AFTERNOON 
Free time to explore Tampa  7:00 PM
Heartbeat International "Dancing with the Stars" Fundraiser Dinner & Auction Tickets to this premium event have been generously donated by St. Jude Medical

Shuttle service to the event included, formal cocktail dress (suits & gowns)

Sunday, September  27

9:00 AM
Farewell Breakfast to celebrate World Heart Day

Participants are responsible for their travel and hotel expenses, as well as the meals not listed above.  A block of rooms have been reserved for Pacemaker Club members and their guests at $89/night (double occupancy), including valet parking.  

Reserve a hotel room at www.starwoodmeeting.com/Book/PacemakerClub

Registration fee is only $50 per person.

The deadline to register is August 31, 2009.

REGISTER NOW! 

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Member Spotlight:  Pookie (Karen Amirault)
 

Many of you may have already been blessed with getting to know Karen Amirault, an active member, while socializing on the site. For those of you who have not, we interviewed her to help you get to know her, learn from her wisdom and be motivated by her spirit for life. 
Do you have a pacemaker or ICD?

I have a Medtronic Enpulse DR pacemaker (dual lead)

When was it implanted? How many have you had?

I received my pacemaker on November 2 of 2004. This is my first and wow what an experience I had. On November 4 I was still in tremendous pain and something in my gut told me to call 911. Forty-five minutes later while in the ER I "crashed" not once, but twice! I died twice! I did go to "the" bright white place and didn’t want to come back because it was SO SO SO peaceful and there was no pain; but I came back both times, lucky me. At least now I know dieing isn’t as frightening as I thought so what a great lesson learned.

Finally the doctors figured it out; somehow during the initial surgery my heart started to have a slow bleed and the heart sac was filling with blood which was not allowing my heart to beat because technically it was drowning. They immediately did a cardiac tamponade surgery, while I was fully awake, as time was not on my side, then straight to the Cardiac Critical Care Unit where I would spend the next 10 days. (My twin sister was flown home immediately, as I found out later, the doctors didn’t know if I was "going to make it or not".) While in the CCU, the next day I had to go for another surgery as one of the leads had fallen.
A few days after that, I was all dressed and packed and ready to go home, when the doctor came in and told me I had to go for yet another surgery as that lead had fallen again!!! Truly, I thought he was joking, but unfortunately he was not. The next day happened to be a holiday so I couldn’t have the surgery until Friday. The doctor gave me a pass so I could go home for a few hours...so my mom and twin sister and I got on the elevator while my dad and Lloyd went to get the cars, and that is when it happened....we got stuck in the elevator for 45 minutes!!! Looking back it was funny, but at the time it was NOT. I mean, how much luck can one person have? On Friday, November 12, I had my 4th surgery, but this time a cardiac surgeon took over my case and he used a different kind of lead, one with a screw-type end and it has stayed in place ever since. A vascular surgeon had implanted the pacemaker originally. Six months later, I went in for surgery #5 as the pacemaker had migrated to my armpit. Again, the cardiac surgeon who fixed my lead also did the repositioning surgery and this time he "anchored" it and it’s been fine ever since. I don’t even know it’s there most days.
 

Unfortunately, since the pacemaker I have never felt better. I was told I would not only feel better but also I would have more energy and no more dizziness. Well, for some of us, our devices, for whatever reasons, don’t fix these problems. But let me say I am glad I have my pacemaker, it brings me peace of mind knowing that my heart will not go below 60 anymore. I went through a lot both physically and emotionally and since then I’ve just been diagnosed with Post Traumatic Stress Disorder. I had gone through major depression and anxiety for the first 2 years after all I had gone through, which is understandable, but I knew in my heart (no pun intended) that what I was experiencing was much more than depression and anxiety, so now I have the challenge of going through treatment for PTSD. It’s seems to be a never ending journey, but also quite the learning experience!

Since the pacemaker my health has been really bad. I’ve been diagnosed with Neurocardiogenic Syncope, Hypotension Intolerance, Colitis, and a form of Meniere’s Disease which is an inner ear problem hence my dizziness and problems with balance. I also have chronic pain in my head and neck. I’ve had numerous diagnosis for the chronic pain, everything from Migraines to bone spurs. The latest diagnosis is Eagle’s Syndrome (which could very well be the answer for my chronic head & neck pain along with the dizziness), so I’m just waiting to see a specialist about this. I truly pray that it is Eagles so I can have the surgery and get my life back in order. I have been living in chronic pain and dizziness for 5 years now and have been on Long Term Disability for the past 2.5 years. That, my friends, is the hard part, not working, not being able to get out and actually see and talk to people, not feeling productive. But, I have hope that eventually my medical problems will be addressed. We all know we have to stay focused and positive when we can. It’s hard, but each day is a new beginning.

Where do you live?

I live in Halifax, Nova Scotia, Canada. I was born in Minneapolis, Minnesota on March 26 of 1962. In 1965 our family moved back to my mom’s hometown of Antigonish, Nova Scotia. In 1979 we moved to Halifax; which is the capital of Nova Scotia. My parents are both in their late 70s and only live 2 minutes away from me. My only sibling, my twin sister, Lynn, has since moved back to Minnesota ... in 2005, by pure coincidence, while on vacation in the Dominican Republic, she met and fell in love with a guy who just happened to be from Minnesota, so back to her birthplace she went.

Are you married? Do you have any children?

I was married in 1986 (to a twin!!!) but we were young & foolish and had a friendly divorce in 1992. In 1993 after being a teacher for 8 years at a business college I quit and went to work for The City Of Halifax and that is where I met the love of my life, Lloyd. I had never had my driver’s license and didn’t have a way back & forth to this new job so I posted that I was looking for a co-worker to drive me and that is how I met Lloyd!!!!!! We started dating on June 24 of 1994; 2 weeks later he moved in with me and we’ve been together ever since. And no, I never did have children (either did my twin sister), but if I could turn back time I would absolutely love to have a little boy. When I get my health back then Lloyd & I have considered adoption. For now our babies are our 2 cats and Lloyd now wants a small dog!

How often do you visit the club?

I visit the club almost every day since 2005. Sometimes several times per day.

Have you met fellow members? If yes, can you say who and share a little about your meetings?

I have met SO many friends thru this site and for that I truly am grateful. Wow, where to begin and with whom?

I joined the club in 2005 as me, Karen Amirault, then I made made a boo boo of trusting an individual a little too much which became uncomfortable for me, so I disappeared for a few weeks. I missed the site and my pacer friends so much, I truly needed to come back, so I then decided to come back as Pookie, which is my nickname. I didn’t feel too good being Pookie at first because I felt like I was fibbing, but then I thought about it for a very long time and what I came up with was this: what does it matter what my name is? I go to the site for support and offer help and support to others if and when I can.

The first person I have to mention is Harley63. I met her in February of 2008 and we instantly clicked. To date we chat each & every day. She is my true angel. She has been there for me every inch of the way. She has gotten me through some very deep moments during the last year. I consider her my sister and love her dearly. I thank my lucky stars that she came into my life. My life has changed for the better because of her. We are even planning on meeting one another soon which will be a dream come true. Thank you Harley, you mean the world to me.

I also want to make a very special note to Maryanne and Shelley as they have been there for me too. I am very thankful to have become friends with these 2 special gals. These 2 girls can lift me up when I am having a bad pain day; we laugh together and we cry together; I just don’t know what to say other than thanks for always being there for me. Here’s to headsets and webcams!!!

I have also made friends with some other dear members: Ela-girl, Janice, Smitty, Electric Frank, Candi, Arabella, Turbo, Jessie, Blue Australia, Alice G., Peter C., StoneFlyer, ABC123, Heckboy, Vonnie Vern, Justwatchme, Sis, Walkerd, TraceyE, Bionic Beat, Renee, and of course, the infamous Cabg Patch. I have received so much more than I can ever give back.

How do you stay positive?

I stay positive by logging onto the site every day. It has taken me a long time to accept what has happened to me but through the support of the members of this site, that is how I stay positive. This site, to me, has saved my life. I honestly wouldn’t know where I’d be without it. I’m not always positive though. We are all human beings with heart issues which is hard emotionally and sometimes physically as we all know. We all have our good and bad days. I also stay positive as much as I can by thinking of my medical problems as a challenge. It is a goal for me to get to the answers. Plus I’m a bit stubborn.

Why do you need your device?

I was told I needed a pacemaker because of Bradycardia. My heart rate during the day was always below 60, but at night it would go down into the low 30s. I was also told I have SSS and Heart Block. Junctional Rhythm was also brought up at my last cardiologist/pacemaker check so now I am waiting to get a Loop/Event Recorder in July followed by my first appointment ever with an EP.

I was also sent to the Mayo Clinic in Rochester, Minnesota (I got to choose the facility) back in February 2007 as I have a rare heart defect called Left Ventricle Noncompaction. What was I thinking???? Minnesota in February....brrrrrrrrrr. But, I chose that facility because of it’s reputation and my twin lives there. My left ventricle was thoroughly checked and every year now I have a Heart Wall Motion Study Test to check my Ejection Fraction, which is excellent at 62%. My last pacemaker check was March 30 and I am pacing 48% in the atria. I have pacemaker checks every 6 months and the atria pacing has been anywheres from 27% to 72%; the ventricle has always been at less than 1%. 


What is the best thing that has happened to you since having your device implanted?

The best thing that has happened to me since my device....would have to be my friendships with Harley, Maryanne and Shelley. My pacemaker simply changed me for the better. My life has completely changed. I have become more compassionate, a better listener, I’ve become more knowledgeable, I now can truly understand what others go through. And I only hope that my postings and/or replies on the site have helped even one person.

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Member Quotes

Messages on web-based support groups can sometimes be seen as negative because recipients who visit often are seeking help with a complication, question or emotional healing.  We hope you enjoy the words of encouragement below.  They are actual quotes taken from members’ postings. 

• “I’m 44, active and have had my device for two years. I love it as I can run again and enjoy working out without feeling like I’m an old man.” 
•  “I can honestly say that I am feeling absolutely amazing!” 
• “Without the little machine, we would not be here.” 
•  “I just had this miracle implanted two weeks ago and I’m feeling better.” 
• “I wouldn’t be here if it were not for this amazing technology inside of me.” 
• “A lot of people are and live normal lives with no problems whatsoever.”
•  “It’s much better to live with a pacemaker than to risk your life without one.” 
• “One week has passed and I must admit that each day I feel a little stronger.”
• “You now get to start a new life it’s like being reborn.”
• “It becomes a part of your body just like any other part.”
• “99% of the time, I totally forget I even have this device.”
• “We are ALIVE! How wonderful is modern medicine.”
• “Sometimes a device must be tuned a few times before it is right. My cardiologist said it is like fine tuning a car.”

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Website Improvements

You may have noticed that improvements have been made to our website based on feedback from members like you.  Improvements have been made to:

• Chat - A new chat system has been implemented and informal chat times are now promoted. 
• Gallery - You can now more easily find the most recent photos posted.
• Private Messages - You can now mass delete messages in your inbox and sent folder.  The original message will also appear when you reply to a private message.
• Member List - The search feature has been expanded to help you find other members like you or those in your area.

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In Memory

It is with great sadness that we announce the passing of two active members.

• Peter Nash (username: Peter.Nash)
• Debbie Stamos (username: Dairy Princess)

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The Pulse Newsletter provides club news and information of interest to our battery-operated members. It is published semi-annually (Fall and Spring).  If you wish to submit an idea for a future publication, please contact us.