St. Jude Medical Pacemakers & ICDs

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The Pulse - Fall 2008

October 31, 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:  Peter.Nash

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

Where do you live?

I live in a small quiet seaside village in Norfolk along the east coast of the United Kingdom (UK). The seafront is no more than a good stone’s throw from my front door.

Are you married and do you have children?

Yes. I am married to Nina ...”’poor girl”. I don’t know how she puts up with me at times, but she does. Just as well because I would never manage without her, so I will definitely buy her an orange for Christmas although it will turn into a diamond no doubt!

We have been together since 1985. We have a daughter Hollie she was born in 1989 so she is almost 20 going on 40! I am sure you mum’s and dad’s know what I mean. Nina and I got married in 1993, with Hollie as bridesmaid so that was a lovely day.

I also have three grown children, Paul my eldest son at 43, is a senior contracts officer in the off shore gas industry. Also I have two girls, Justine, 41, who works for the police department and Kelly, 39, who is in Saudi with her husband.

When I crossed paths with Susan queen_beez on this site, we have sort of adopted each other as Dad and daughter. It works very well for both of us. Our big hope is to meet up one day as soon as we can work something out.

What is your hobby?

Building and flying model aircraft is my main passion. I love the construction, and being a bit of a messy worker I love seeing a beautiful aircraft rising out of the tools, shavings and glue.

Contrary to popular belief these are not toys. They can cost from a couple of hundred pounds up to thousands. Also, they are as equally as difficult to fly as a full size aircraft if not more so, and require the same skills to fly them safely. In the hands of an untrained pilot, they can be lethal weapons.

With that said, there is no better feeling than taxing out to the runway with a new model you have just lovingly built, easing the power on and praying it is going to fly, sadly not always the case, but that’s why black plastic bags were invented. 

Do you have a pacemaker or ICD?

I have an ICD, Medtronic Marquis 7230, just for shock therapy only except it will make four attempts to pace me out of VT. I have severe dilated cardiomyopathy, hence the arrhythmia problems and the need for an ICD.

I had my device implanted at the Papworth Hospital here in the UK in February 2003 ...so far so good.  It is the only device I have had and still seems to be working fine. At the time of the implant, my battery life was expected to be around 7 years.

I don’t worry about battery life. Otherwise, you could drive yourself mad. If someone asks me about how long will it last, I generally smile and say “it will see me out”.  I see it as a bonus if you live long enough to need it changed!

Why do you need your device?

I guess to give you a straight answer, I need the device to stay alive. With the arrhythmia problems I have, I am at risk of sudden death without it.

Has your device improved your quality of life?


Simple answer here, no. Saved my life? Yes on four occasions. It has no effect on my quality of life, but I am absolutely sure without it I would not be here now. As I said earlier I don’t worry about battery life, but when the time comes for it to be changed it will be sad to have to have to lose it as it has become part of who I am.


I know you have met a number of fellow members. Can you say who and share a little about your meetings?

Yes, my favorite subject! I have actually met three club members and would like to say what a pleasure it was and how exciting also it was working on the plans to make it all a reality. I would recommend the experience to all members.

Firstly, I met Susie (Pacergirl) last year in May. She and her hubby Tim flew all the way to the UK from Kansas to visit me for a week. Meeting Susie at the airport was such a buzz, after we planned it for months. We had a lovely week, even the awful British weather was kind to us. The four of us dined out most nights. We never got around the country too much, but went to a few local places and managed an afternoon flying a model aircraft.

Time ran out so fast well at least for Susie and me, I am not so sure about our other halves! I think they were glad it was all over, I am sure we talked too much!

Earlier this year after talking to Chrissie (Wingart) on the site, we discovered that we only live less than two hours apart. Her hubby Steve was also a model aircraft enthusiast. So Nina and I drove down to meet them and we had a great day.  Chrissie has also since come to my home for a day. Nina and I plan to drive down again see her again.

Just a couple of months ago, Angelique (Bunnykin) and I were swapping private mail messages as we both seem to have much the same arrhythmia problems.  Angelique, her hubby Paul and daughter Lisa were coming in to London from halfway round the world for a few days, so we arranged to meet. Nina and I went down to London on the train. Angelique and Paul had invited us to dinner at a restaurant. We had a great time chatting like we had known each other forever. It really was a lovely day, but with a train to catch the day ended far too quickly.

It is quite amazing meeting people you have never seen. As with Susie, Chrissie and Angelique, well what can I say, just beautiful people. 

How do you stay positive?

For me this is the hardest question, and I really find it difficult to give you a meaningful/honest answer.

I am not the most positive person in the world, but neither am I a pessimist. I am not one to take things at face value I have to know the ins and outs of everything the whys and wherefores. I have found that this can be misconstrued as being negative, but that is who I am it can’t be changed and neither would I want it to.

But we all know you have to remain pretty positive with our outlook on life when it comes to our heart problems. It is most important for our wellbeing. This is why being a member of the Pacemaker Club for me is important. I
n lots of respects, we are all in the same boat. So we understand our health situations and we can talk and comment amongst ourselves and learn so much.. I enjoy talking and mailing people and that helps me stay positive.

Nowadays with my health, a walk is the most challenging thing I can hope for, but there is silver lining to that. I have more time to enjoy the finer things of life such as smell the flowers, looking at the wonder in a butterfly’s wing and listening to some beautiful lyrics of a song. Look and listen carefully and there is so much to enjoy.


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 AIGISRxTM Anti-bacterial Envelope

Surgical Site Infections “pocket infections” associated with implanted pacemakers and cardioverter defibrillators are estimated to cost over $1 billion annually. Approximately 500,000 pacemakers and defibrillators are implanted annually in the United States with estimates as high as 7% being explanted due to infection. Not only are the pacemakers and defibrillators removed, the entire system is normally removed, including leads (wires connecting the device to the heart). “Pocket infections” are not only costly but are debilitating to patients and are causes of pain and loss of productivity.  A recent article appearing in the Heart Rhythm Journal, April 2008, states, “indications (for extractions) were infection (60.3%), mechanical lead failure (29.3%) and upgrade of device system (8.8%)”. “Pocket infections” may occur days, weeks and months after the device has been implanted.  Although antibiotics are administered in conjunction with these implant procedures - “pocket infections” can occur. 
In January 2008, the FDA cleared the AIGISRxTM   Anti-bacterial Envelope for United States market release. AIGISRxTM has been shown to reduce infection by 100% in an in-vivo (animal model) bacterial challenge associated with implanted pacemakers and cardioverter defibrillators. AIGISRxTM is a polypropylene mesh (similar to a hernia mesh) coated with a fully resorbable polymer which carries two antibiotics – minocycline and rifampin. At time of implant the physician inserts the pacemaker or defibrillator into the AIGISRxTM mesh and then places both the device and AIGISRxTM into the surgically created pocket of the patient. The antibiotics provide localized antimicrobial activity within the surgically created pocket. 

AIGISRxTM has been implanted by some of the top teaching hospitals in the United States.

Before your next pacemaker or defibrillator implant, you may want to ask your doctor about the possibility of infection and if the AIGISRxTM mesh envelope is an option for you. 
To learn more, visit www.TYRX.com    
   
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Attitude Counts 
(submitted by TraceyE)

Finding out you need a pacemaker or ICD can be a rude shock. Being diagnosed with a heart problem affects your mind as much as your body. How you approach your diagnosis and recovery mentally will always have an impact on your physical recovery. A positive attitude will get you back on your feet faster.

We can learn a lot from Lance Armstrong’s Live Strong Foundation. Their motto is unity is strength, knowledge is power and attitude is everything. This isn’t just talk; there is scientific evidence behind it. Carol Ryff, a psychology professor at University of Wisconsin-Madison, says "There is a science that is emerging that says a positive attitude isn’t just a state of mind. It also has linkages to what’s going on in the brain and in the body."(1) While your body may or may not get back to 100%, a fighting, positive attitude will get you back there mentally.

Acceptance
Some patients fully recover and their symptoms go away with a pacemaker implant. Others are only able to manage the problem, not cure it, and never get back to their old level of activity. Most fall somewhere in between. Whatever your post-implant level of activity and well-being, all recipients have one thing in common- their hearts depend on an electronic device.

Acceptance is crucial to recovery. As long as you see your pacemaker as a bad thing, feeling resentment and viewing it as an invasion and an inconvenience, you are delaying your recovery.

Fight, fight and then fight some more
When a football team is getting ready for the season, do they go in thinking they don’t have a chance of winning? Of course not! The worst team in the NFL still starts the season with visions of going to the Super Bowl.

Dealing with health issues is the same. It’s important to see it as a battle that you will fight and win. Ignore the odds. They may not be in your favor, but are you going to give in without a fight? You can see problems as obstacles and let it get you down, or choose to view it as a challenge you can and will overcome. You may not win the battle for perfect health, but not letting it take over your life is a victory you can achieve.

Live with it.
What are your choices when you have an implantable device? You can’t give it back and you can’t turn back time and get back the healthy heart you had. That leaves being miserable about it or accepting it and moving on. Even better, see it as a blessing and be grateful to have it. You’re probably saying, easier said than done! Whether your device is improving your quality of life or keeping you alive, you can be thankful you were born in an age where such incredible technology is readily available. What would your health be like without it? Would you even be here?

So, how can you work on a positive outlook?

1. Get outside and move. Fresh air and sunshine can work wonders for your state of mind.

2. Take care of yourself. A good diet is not only good for your heart, it will give you more energy which in turn will boost your mood.

3. Look around you. Do you know someone battling cancer? How about recovering from a stroke or car accident? Whatever your state of health, there is always someone going through something worse.

4. Give back. Take your focus off your problems by helping someone else.

5. Knowledge is power. The unknown is frightening. Take some time to learn about your condition. Find out about any medications you’re on, what they do and the side effects. Learn about pacemakers or ICDs and how they work, specifically how yours is programmed. Don’t be shy about peppering your doctor or technician with questions. Keep asking until you feel that you understand what has happened to your body.

6. Take it easy on yourself. It takes time both physically and emotionally to recover from an implant. Four to six weeks is the average recovery time from the surgery. Emotional recovery, getting used to having a chunk of titanium in your chest and knowing your heart is depending in part on a computer, can be anywhere from a few weeks to year. Don’t beat yourself up if you aren’t feeling your old self overnight.

7. Get help. Depression is not uncommon among cardiac patients. Taking time to get your equilibrium back after diagnosis is normal and generally something you can work through on your own or with the support of friends and family. If it doesn’t go away or affects your ability to function in day to day tasks, get help. Depression is a disease that needs to be treated by a professional. It won’t just go away and you deserve to have your life back.

Everyone has down days occasionally. When you start to get down, remind yourself that you are alive and every day is a gift. What are you going to do with that gift today? Choose to be happy and live life to the fullest. It will be good for your health!

Sources:
1. http://www.usatoday.com/news/health/2004-10-12-mind-body_x.htm
 

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Message From Blake Hunter
Founder, Pacemaker Club

"Thanks to my pacemaker, I can live a normal life with my family. It is hard for me to imagine that over a million patients around the world need a cardiac device, but can’t afford one because they live in countries where medical insurance does not exist.

Since 2005, I have volunteered on the Board of Heartbeat International, a non-profit charity that not only provides cardiac devices, but ALL of the related medical care at no charge to poor patients in developing countries such as Mexico, India and Trinidad.

Many felllow Club members have suggested that we should champion a worthy cause. It is for this reason, I’m asking for your help to save 20 lives by making a donation to Heartbeat International.  The St. Jude Medical Foundation will generously match our donations so we can save twice as many lives."

This campaign has offically ended.  Members and friends of the Club donated over $7,700.  Thank you to everyone who supported this effort.   

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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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