Pulse Newsletter

• 2011-01-15

Welcome to the Pulse, the newsletter that provides club news and information of interest to our battery-operated members.  In this edition, you will meet six veteran recipients whose stories will inspire you, learn of a strong friendship forged by members across continents and also read other Club news.  

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An article titled, Who has lived the longest with a pacemaker, from our last newsletter generated considerable interest and debate. In the article, we described how the late Swedish engineer, Arne Larsson lived 41 years with a pacemaker implanted. The information had originally been published by a manufacturer a few years ago.  Well based on your feedback and a query of our membership database, we have identified 30 members who have indicated they have lived longer than 40 years with a pacemaker and most more than the 41 years reported in the article.      Since medical records are not public and our membership database does not represent the entire population, we can’t confirm who has actually lived the longest with a pacemaker. Instead, we are pleased to introduce you to six veteran recipients.    We hope their stories inspire you to a life of longevity.   

Leslie (Helwick) Brant
Username: EverReady

Leslie is holding her third grand-daughter. 
 

Year of first implant
March, 1967 at the Children’s Hospital in Denver Colorado

Age of first implant  
13 years old

Number of devices
About 10  (The early devices lasted only 2 years)

Reason for device
Leslie was born with heart block. As she aged and became more active, her heart rate dropped to 30 beats per minute. At the time of her first implant, pacemakers had been put in older people, but the idea of implanting one in a teenager was a rather new concept.  She is 100% paced.

What is the best thing about being paced? 
"Being alive for 57 years.  The fact that I have lived more years WITH a pacemaker than without, makes my life "normal" with a pacemaker. I have been very blessed, I take no medications, have not had trouble with recalls, or faulty wires, and have really done everything that I have wanted to do. I have two children, both born healthy, have adopted two other children and am now involved with grandchildren.  I owned my own business for 16 years, and now work a couple of days a week, just to keep involved.  I have never thought of myself as different than other people.  As a rule, I do not even mention I have a pacemaker to people, in fact, I hardly think about being paced. I have always looked at the positive side and am always amazed at the new technology each time I have a new device. I am very blessed and thank God every day for the life He has given me."

Roderick Lane
Username: Roderick

Year of first implant 
1967

Age of first implant   
2 years old

Number of devices
28

Reason for device
Roderick was born with heart block. 

What is the best thing about being paced?  
"Living life well!" 

Una Ireland
Username: Uireland

Year of first implant 
1968

Age of first implant   
7 years old

Number of devices
14

Reason for device
On July 3, 1968, at age seven, Una underwent open heart surgery for an ASD. She then developed complete heart block. She received her first pacemaker on August 5, 1968. She has survived two cardiac arrests and a heart attack. She received an ICD in January 2005. On August 2006, she had open-heart surgery to replace a valve and in December 2010 she received her 14th device

What is the best thing about being paced/zapped?  
"I’m alive!"

Bill Camilleri
Username: bcamilleri

 
Bill & his wife Beth

Year of first implant
1969

Age of first implant   
15 years old

Number of devices
18 devices

Reason for device
In 1954, Bill was born with Tetralogy of Fallot and in 1966 had corrective surgery to patch holes and repair valves. He was doing well until May of 1969, when his heart rate was less than 30 beats per minute. On May 21, 1969 he got his first pacemaker. He was small and the pacemaker was large, so it was placed in his abdomen where it fit. In 1980, he got his first dual chamber rate responsive unit. He felt better and it was the first time he had a heart rate that changed. "It was a great improvement for me (especially in playing racquetball)." In 2004, he got his first ICD. In 2010, he got a Bi v ICD and now he is doing quite well. He is currently being paced nearly 100% of the time and his ICD protects him in case his heart races too fast.

What is the best thing about being paced/zapped?  
"The best thing about have a pacemaker is that I get to go to the front of the line when I travel at airports. Saves a lot of time! I have had fun with the fact my heart rate was controlled. In the 60’s and 70’ when I had my fixed rate device (hr 78), I played racquetball. When I met new opponents, we would bet that I was is in such good shape, that after one hour of play my heart rate would be the same as when we started. Since they didn’t know that I had a fixed rate pacemaker, I would always win the bet. Won a lot of beer back in the day.

One of my best pranks with a pacemaker occurred when I received a demo device of the real unit that my doctor had just put in me. After the implant, the doctor arrived at my hospital room to see how I was doing. As he walked in, I showed him the demo device and said that it had fallen out of my chest. It was a great joke."

Gene Shuten
Username: gshuten

Year of first implant 
1971

Age of first implant   
4 years old

Number of devices
40

Reason for device
Gene was born with a VSD, when it was repaired the patch did not hold and during the revision surgery the natural pacemaker in his heart was severed. This lead to his first pacemaker that was external. Over the next few months, the doctors managed to implant a pacemaker. He actually has tried to collect as many of his old pacemakers as possible.  One of his pacers, from when he was about 5 or 6, is the size of a hockey puck! 

Gene’s high number of devices is because his pacer site/pocket frequently has become infected and the device is replaced within weeks to months of being implanted. He believes it may result from the drug Coumadin.  

What is the best thing about being paced?  
"I like getting to joke about myself being a real six million dollar man, then later being on my first steps to becoming Darth Vader!!"

Dudley (Denny) Fincke
Username: Dudley

Year of first implant 
1975

Age of first implant   
36 years old

Number of devices
Three devices over a 35 year period.  His second device lasted over 21 years.

Reason for device
In 1974, Denny was diagnosed with complete heart block.  In 1975, his heart rate went down to the low 20’s and he almost died.  His first pacemaker was implanted at the Cleveland Clinic, and all three pacemakers have served to keep his heart rate from going too low. 

What is the best thing about being paced?  
"The best thing about being paced is that I have a built in insurance policy that prevents me from dying from too low of a heart rate. My devices have also provided some entertainment.  When I went into the hospital to have my second device implanted a friend came to visit, and he brought a car battery with him as a joke. When the doctor came to visit, he immediately asked what the big battery was for. I told him that it was my insurance policy that if he did not get the pacemaker implanted correctly, I was going to hook myself up with jumper cables to the battery. Everyone had a good laugh over that."

As you read about these recipients, you may have noticed a few common themes among these members.  Those with congenital heart disease tend to have had their pacemakers the longest.  All are very knowledgeable about their condition and maintain a positive attitude about their health and device.  Many even show a sense of humor about their device, which is known to help people cope.  Many of their pacemakers have also been upgraded to an ICD as they aged. 

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Friendships Forged
By TraceyE, LoopyLou and Angelie

Once upon a time, I thought you couldn’t have a friend that you met on the computer, that it would be awkward to meet in person, and that you didn’t really know a person unless you’d met face to face. Now I think there are soul mates out there that I haven’t yet met, people you click with instantly and when you meet them for the first time you have to keep reminding yourself that you haven’t actually known each other for years because it feels like catching up with an old friend.

I’ve met two such women through Pacemaker Club, Loopy Lou and Angelie. We started bantering on posts, then friended each other on Facebook, chatted through instant messenger, sent oodles of texts back and forth, talked on the phone. Christmas of 2008, Loopy’s family came to the States for a holiday. We met and it was like meeting my twin family, only with a proper British accent. We are the same age, have pacemakers for the same condition, our children are the same age, our husbands got along great, and our kids were instant friends. We had a lovely two days together.

The three of us were supposed to all meet at the Pacemaker Club Social in fall of 2009. Loopy flew in all the way from England and the two of us drove up to Tampa together to catch up with Angelie and the other Pacemaker Club members. About the time Angelie was supposed to leave to join us, she was admitted to the hospital. We didn’t meet Angelie that trip and the best we could do was drag a picture of Angelie everywhere we went so she’d have a virtual trip to Tampa, but it just wasn’t the same.

Fast forward to Christmas of 2010. Loopy’s family was coming to the States for the holidays again so of course we made plans to meet! I think the kids were as excited to see each other again as the adults. We made plans to spend a few days together. And without mentioning anything to Loopy, I had a chat with Angelie...

(Angelie’s part of the story)

... and there was no way that I was going to miss out on this opportunity twice. My middle name might be Murphy’s Law, and I might have the worst luck in the world but there was no way that I was going to miss this. I will never forget the look on Loopy’s eyes when she saw me walk up to their table while they were eating at an Orlando Olive Garden. The classic deer caught in the headlights, mixed in with a whoozie dizzy spell, and mere shock. All I can say, is that I’m glad that we were all battery operated or we might of had a few arrhythmia moments with people passed out on the floor.

People might think I’m crazy for traveling 4 hours to meet two crazy pacer chicks and their families. Two people and two families that I have never even met in person, but they were far from strangers. Loopy received her pacemaker and joined Pacemaker Club just one month before I joined in 2008. Tracey was one of the first people to respond to one of my posts on the club, and it didn’t take long for me to get to know Tracey and Loopy quite well. Loopy and I would have "virtual" pillow fights and blushing conversations about George Clooney. Tracey was always a phone call away whether I was facing more surgery, just needing to vent, or to share a good laugh with.

(Loppy’s part of the story)

After just finding out I had a very low pulse rate of 30bpm and suddenly being rushed in to have Gerry the Pacemaker you can imagine how low and un-Loopy like I was. I had gone from being a mad crazy sort of healthy kinda gal to a very upset, worried, mess! Then I found Pacemaker Club !!!! I posted a message and one of the first replies was Tracey! Followed quite quickly by Angelie!!! This was the beginning of many, many messages which slowly started to cheer me up and make me feel better about myself..... Knowing someone else was going through the same kind of thing made it easier somehow. Angelie and Tracey were always there at the beginning for me - everytime I felt low, I would leave a message and in no time at all these wonderful Pacer Chicks would be right there with me.... All be it on a computer screen!!

Christmas 2010 - We are off to Orlando again!!! And we arranged to see Tracey and children again! During a meal at a local restaurant we all sat down. The four children were at a table and Tracey, my husband Mark and myself at another. I might add at this point, Tracey had been making lots of texts and calls!! Anyway, we order and are chatting away..... When someone catches my eye. Heading straight at me was.....ANGELIE!!! For a split second, I was confused! Thinking no, it can’t be, she lives miles away.... And then.... Wow! She looks a lot like Angelie! To which this lady says to me"Hi, I’m Angelie, I will be your server for the evening!!! Oh my gosh!!! Thank goodness we all had our pacemakers and taken our meds! I couldn’t believe it... I think my eyes must have been out on stalks! It was one of the best surprises ever!

(Tracey again)

And so we had an impromptu party at Olive Garden in Orlando. We toasted each other. We laughed enough to collect annoyed looks from the tables around us. Loopy must have said "Oh my gosh!" with a goofy grin about a hundred times. The kids only rolled their eyes at us a little bit, I think they were glad to have their own table. We finally relinquished the tables and headed back to the hotel where we talked and laughed until we couldn’t keep our eyes open anymore. The next day we went to a go-kart park where the kids could amuse themselves while the adults visited some more. We had a blast trying to figure out whodunnit at a mystery dinner theater that night, then in the morning my girls and I headed south, Angelie went north, and Loopy and her family was left to enjoy the rest of their Florida vacation.

(Loopy again)

And this was all thanks to Pacemaker Club, a club that is so important to people who are going through all sorts of problems relating to pacemakers and ICDs. Pacemaker Club has brought people together via computer, telephone, and now by Virgin Atlantic!

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Next Social 

We are looking for your ideas as to where and when to hold our next official social.  Our membership is worldwide, with the vast majority coming from the United States.  At our first Social in Tampa during the Fall of 2009, we kicked off the weekend with a meet and greet Friday night. On Saturday, we had an educational workshop with presenters from the medical device industry.  On Saturday evening, we attended a Heartbeat International gala fundraising event.  The weekend wrapped up with breakfast Sunday morning before everyone started to fly or drive home.

If you would like to help host the next social, please email us at info@pacemakerclub.com with your city idea along with some details on the weekend’s agenda and potential places where it could be hosted.  The deadline for submissions is February 28, 2011.  Our main requirement is that the location be accessible for our members (i.e. it be located near an International airport with lots of flights and/or in a city/state where a large number of members reside).     

 
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Power Pack Special

All members can purchase a Power Pack of our most popular merchandise for just $25.95, save over 15% and support the Club, as well as receive a free membership card.  

 
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Facebook Fan Page 

Are you a Facebook user?  If so, check out the Pacemaker Club Fan Page at www.facebook.com/PacemakerClub  Don’t forget to indicate you LIKE the page.  

Our Facebook page provides members with another channel to follow the latest news from Pacemaker Club.  Our intention is not to reduce the activity on our website, but to promote our online community and hopefully expand our purpose of helping cardiac pacemaker and implantable cardioverter defibrillator (ICD) recipients meet, share information and support each other.