St. Jude Medical Pacemakers & ICDs

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The Pulse - Spring 2008

April 25, 2008

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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Member Spotlight:  CathrynB

Many of you may have already been blessed with getting to know Cathryn, an active member, while socializing on the site. For those of you have not, we interviewed her to help you get to know her, learn from her wisdom and be modivated by her spirit for life. 

Please share a little about yourself.

I’m married to Bob, my best friend. He was extremely supportive and helpful during the lead-up to my surgery and helped me work through the complications that followed by going to appointments with me, asking lots of questions, and helping me talk through the issues and options. We have 3 children – Ryan (28), Mackenzie (21) and Adrienne (18). The older two live near us, and the youngest is in college out of state.

When was your pacemaker implanted?

I got my pacemaker in January 2007 at 50 years of age after fainting at work twice in one day and undergoing medical tests to determine the cause. I have bradycardia and sinus bradycardia. I have a Medtronic ADDRL1, a dual-lead pacemaker.

Please decribe the complications that followed your implant surgery.
 

I had complications after the implant and was able to get them solved over time. I developed a keloid, which is a painful, very itchy overgrowth of scar tissue. Kenalog injections into the scar tissue solved both the discomfort and appearance of the scar.

I also have very thin skin near my collarbone where my device was implanted. It was painful and my doctor became concerned about the possibility of skin erosion. Six months after the original implant, I had my pacemaker re-positioned to a location lower on my chest, behind my breast but still on top of the muscle. It is completely comfortable in the new location. My electrophysiologist and his cardiac nurse were wonderful about answering my questions and listening to my concerns, but I had to push a bit to get these problems resolved, and ultimately was referred to other doctors to treat them – a General Surgeon to do the re-positioning, and a plastic surgeon for the Kenalog injections.

So, are you feeling fine now?

Yes. I’m a very active person, and when I found out I needed a pacemaker one of my big concerns was whether I would be able to continue with my outdoor activities. I was able to walk several miles a day beginning 3 days after the implant, and then my activity level in other sports varied over the months it took to resolve my complications. Now I can do everything I did before the pacemaker. I’m running 4 miles several times a week, downhill snow-skiing, bicycling, kayaking, hiking, mountain climbing, and will go on my first scuba dive next month.

What advice would you give a new recipient?

Almost all of us are shocked when we find out we need a device, and it’s a big physical, emotional and psychological adjustment for many people. I recommend new recipients follow all their doctor’s orders regarding the post-op period, especially not raising your arm above shoulder level until the electrical leads are well secured in your heart muscle. I think other helpful things include asking lots of questions of your doctor, seeking support from family, friends and especially on a website like the Pacemaker Club where other people who have been through what you’re going through can provide support and answers. Drink lots of water, get plenty of sleep including naps, take as much time off work as you can, and know that over time your device will become your “friend”, one you’ll trust and be glad is there for you.

If you encounter a complication, be persistent in seeking answers and solutions. It’s sometimes very difficult to keep pushing medical people to help solve problems, but it’s important to understand that a really good doctor will be willing to admit he/she doesn’t know the solution to your problem, but will help you find someone who does, as my doctor did. Persistence pays off.

Does your device slow you down?

No, my device has not slowed me down since I got the complications resolved. Unless people have underlying heart disease or other medical issues, there’s no reason for a pacemaker to slow us down. Our pacemakers solve certain kinds of arrhythmia problems, improve the blood flow throughout our bodies, and ensure our vital organs are getting the oxygen they need. So we can have more energy, stamina and strength than we had before we got the pacemaker. I think of my device as giving me a renewed lease on life, and I can engage in all the activities I want, knowing my pacemaker will keep me from fainting or having dizzy spells, and to top it all off my hands and feet are warm since I got my device, which even Bob appreciates! Getting a pacemaker gives us the chance to set and achieve new goals.
 

How often do you visit the Pacemaker Club site?

Except when I’m traveling, I log onto Pacemaker Club almost daily to read the latest postings. I’ve made friends with several people on the site through private messages, and eventually personal email, phone calls, and in one case, I met a fellow member, Dominique (Stepford_Wife) last February when I was traveling through her home state. My friendships on this site are very special to me.

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The HeartLibrary is a website, sponsored by St. Jude Medical, which hosts an interactive heart video library for patients.  Videos are presented by doctors in terms patients can easily understand.  A number of videos are now available on conditions such as atrial fibrillation, tachycardia, sick sinus syndrome, bradycardia and sudden cardiac arrest.

New videos are added regularly and all patients are encouraged to share their success stories.  So to learn more about the heart, arrhythmias and heart conditions, visit www.heartlibrary.com.

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Does your bra strap cause irritation and discomfort?

If you’re like many female recipients, your bra strap causes irritation and discomfort over your implant site.  Pacemaker Club is pleased to recommend the comfortHer bra strap pad to improve your comfort.

 

Made of a silky-soft, washable tricot nylon fabric with triple-padding and unique internal stiffeners, the comfortHer pad gently protects the post-surgical area from the constant rubbing of your bra strap during everyday activities.

Easily adjusted to fit any bra, the comfortHer pad’s low profile enables it to be worn under most any of your clothing without being seen.

Learn more and order a comfortHer at www.aboutsofttouch.com   

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Do members wear a medic alert bracelet?

According to a recent poll, 45% of members wear a medic alert bracelet or pendant.  This means 55% do not!  Many medical professionals and device manufacturers recommend that recipients wear a medic alert bracelet or pendant.  So if you do not wear medic alert jewlery, you may wish to discuss the need to with your doctor.  

There are many options available.  We have found that popular providers of medic alert jewlery include MedicAler, Medic ID International and SOS Alert Products. 

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Club News 

Did you know?

    • The club has over 7,700 registered members
    • Members are from around the world, including the United States, Europe, Canada and Australia 
    • You can search for recipients in your city in the ’Member List’ after you login
    • Messages posted within the last seven days are displayed under ’Recent Postings’ in the left menu 
    • You can search old postings by clicking ’Search’ on the top right of this page
    • The club donates a portion of all sales to Heartbeat International, a non-profit charity dedicated to making "poor" hearts beat better
    • The spirit of the club is active caring members
       

Future Plans

We plan to make improvements to our website’s functionality later this year. Based on your feedback, we plan to improve the photo gallery, private messages and chat room.  We also plan to expand our FAQ section and add a list of terms for members.    

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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.




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