Staying Healthy

Sometimes this whole pacemaker thing is weird for me. I've had mine for 16 years, but it was implanted when I was just 11 and so often I feel like Im learning things about it for the first time, things that if I had been implanted as an adult I would probably already be aware of. Sometimes thats a good thing and sometimes thats a bad thing.

I had a sucessful ablation done when I was 18 (I'm 28 now) so for all of my adult life I've really been able to ignore my heart condition for the most part. Well I started having some issues recently and have been doing some research so I can be more informed if I need to make decsions, a task that was formerly up to my parents.

So anyway in my search I've come to realize that I am one really lucky person. I have sick sinus syndrome, which I'm learning is less common then I thought, and I had the more complicated form of it. It has got me thinking that I really need to take better care of myself. Not that I abuse my body, because I certainly don't. But I should really exercise more and watch my food intake as well. I'm just wondering if anyone out there has any tips. I've lost weight in the past with weight watchers, and I know quite a bit about health and nutrition, but I guess Im just looking for some ways to stick with it, and be an over all healthier person!

Thanks for reading! -Patti

10 Comments

Good for you, if....

by Terry - 2008-10-12 02:10:28

As long as you are not paced often in the venticle, because most ventricular pacing these days bypasses the heart's conducton system (look up "cardiac conduction system") because the recent literature suggests that pacing cardiac muscle causes heart failure and even stroke. "8% of children paced for 7 years experienced heart failure," according to a paper publishen last January.

Terry

Staying Healthy

by Pookie - 2008-10-12 03:10:00

I think you're on the right track! Everyone (if able) should be exercising more and eating right. Bravo for you. Sticking with it is easier said than done, just take each day at a time. If you fall off your routine, there's always the next day to get back on. Don't be too hard on yourself.

I have a question: you said that you've learned that SSS is less common...hmmm. less common than what? I guess I'm interested because I was also diagnosed with that and know very very little. AND there are different forms of SSS??? please explain or could you point me to a good website? Gee, our hearts are complicated, aren't they!

thanks
Pookie

Thanks

by PattiAnn237 - 2008-10-12 06:10:23

Thanks for the encouragement Pookie!

Well I learned SSS is less common then I had thought. Spending quite a bit of thime in children's hospital's cardia wing, I kind of had a skewed view of how many people have heart problems!

What I found from research is that it is a rare condition, and most likely occurs in people over the age of 60. I was 9 when diagnosed. Also, I found that it is less common in people without defects of the heart. And I have no defects in my heart.

Finally, I also found that in some people SSS presents no symptoms, in others its just low rates or irregular or fast. I had all three.

I found a lot of information from searching on-line, but I've also been hounding my doc lately. I have noticed that a lot of the docs at the hospital I go to (Children's Hospital of Philadelphia) are researching the effects of ablations on people with SSS, so I'm hoping that as time goes on I'll know ever more.

Thank YOU!

by Pookie - 2008-10-12 06:10:25

thanks for the info PattiAnn.

Pookie

Thank You

by PattiAnn237 - 2008-10-13 03:10:04

Thank you all for the advice! It helps to hear other stories of what people have and are going through!

Maryanne, I'm glad you mentioned your pregnancies, it is something I have worried about as I would like to have children in the future, my doc always says she doesn't forsee any problems, but I still have been concerned. It helps to know things went well with your pregnancies.

As for the response Terry gave I appriciate those of you who responded. I initially ignored the post because I couldn't believe someone could respond that coldly. I understand that they're are long term issues with having a pm, but I see a doc regularly, and did not post in reference to that.

Terry, I hope you realize how scary it cam be for someone to read what you wrote. I know that my heart is very healthy, and I currently am not dependent on my pm at all, however, if I was that statistic may have really bothered me and was unrelated to what I had asked.

But thanks again to all of you, you have been such a great support!

pregnancy

by Tracey_E - 2008-10-13 04:10:11

Patti, I had two babies with a pm. I was not even considered high risk once the cardiologist told the ob that the pm fixes my problem. The hospital put me on a heart monitor when I delivered and they put antibiotics in the iv, other than that I was no different from all the other moms-to-be! There are a few others here who had uncomplicated pregnancies after getting a pm.

Thanks

by LouLou21 - 2008-10-13 08:10:20

Thank you TracyE and Wingart (chrissie)
Thankyou for posting your comments cuz after just reading that previous one from Terry I went into slight panic, I have had my pm for 6months and while I have learned so much from this site I do count myself as quite new to this game. I am paced in the ventricle and although I've been told i'm not 100% dependant on it, I'm sure that one day when I get older (i tuned 30 in march and got my pm april)things may be different and worsen for me. I actually got scared as to what my future held.

Take care all.
Louise.x

Terry

by Tracey_E - 2008-10-13 08:10:46

What paper is that? I'd be interested in reading it. I would be very surprised if that many fatalities were caused by a reaction to being paced. It's more likely that it's from the underlying heart condition that weakened the heart and produced the need for the pm in the first place. I've been nearly 100% ventricular paced for 15 years now and my EF is the same as it was the first day. There are many cases of patients who have been paced ventricular for 30+ years, a few of them members here, who are also doing just fine.

As Chrissie said, please think before posting statistics like that. There are a lot of us here who have complete blocks and are therefore paced ventricular all of the time. Many are kids and teens, or parents of babies and young children. They don't need to see numbers like that taken out of context, and studies are constantly being released that contradict each other so you can't depend on just one.

Life with a PM

by maryanne - 2008-10-13 08:10:46

Welcome PattiAnne....

Good for you for being proactive about your health. You are so very right for taking charge and investigating your reasons for having the PM and for wanting to make healthy life choices.

People regardless of having a PM should attempt to make good healthy life choices. But we are all human and well have a right to make "choices" .

I have always led an active life, I have had my PM since I was 23 and managed to go through 3 healthy pregnancies with a PM. Staying healthy is a way of life. It's making good food choices and being active. It's not about denial. Heck if you want that piece of cake have it for goodness sake..but tell yourself that if I do I will walk a couple of extra blocks or I will take the stairs instead of the elevator, I will park my car on the other side of the parking lot when I go to the mall. There are a lot of ways to increase ones activity level without having to be fanatical about it.

I run.....some days I don't feel up to it...so I go on my stepper instead.....I love to walk and walk everywhere....I am one of those people that takes the stairs instead of the elevator....I started bellydancing...love it and it's a great work out.

It's all about finding balance....don't scold yourself...we all mess up sometimes...recognize that you haven't been as active and then move on and do something.

I got my PM for the same reason you got yours...over the years my symptoms have progressed to where my heart would go into complete heart block( 3 degree block) but through adjustments to my PM I am still alive and kicking.

In response to Chrissie and Terry.....Of course it is ideal if you don't have to be ventricularly paced. And yes Terry you are right continual pacing in the ventrical can put people into heart failure and make them even more dependent on their PM. Hence there is also research out there that supports trying AAIR<=>DDDR pacing which is a setting used to help extend the life of the PM as well as minimizing the effects on the ventricles. I have had this setting but for me it wasn't working. Chrissie I don't think Terry was trying to scare anyone. Having a PM although it keeps us ticking has it's down sides and well like anything if you are continually using it, it can eventually wear out. it only makes sense...look at it this way....you have a rubber band....you are continually stretching it and putting force on it....that rubber band will eventually start to lose it's elasticity...our hearts work in similar fashion.
Regardless of whether we had a PM or not...the heart is a muscle....muscle wears out ....assuming all things are equal and for argument sake a 90 year old heart is bound to be less effective than a 40 year old heart...that's just nature.

Terry you would be a little erronious to say not to excercise if you were ventricular paced...I have been for most of my life...I run, I cycle, I hike, I sky dive, I ski....the purpose of my PM was to enable me to live an active life...and that is exactly what I am doing.

Patti

by Tracey_E - 2008-10-13 09:10:39

I know what you mean about taking over making the decisions and learning about your condition from the point of view of an adult. I was diagnosed when I was 5 and understood that "the top and bottom of my heart don't beat together, my heart's too big and it has a hole". Over the years I figured out what all that meant!

I've always been good about diet and exercise also. I'm not fanatic about it and I like my junk food, but I stay active and try to eat high fiber, low fat and limit salt most of the time. It's all about finding a balance. When you do it long enough, you feel bleh when you don't exercise or when you eat a heavy meal. Weight Watchers is a great way to learn healthy habits, how to enjoy good food and learn to find healthier substitutions for bad foods we all love.

To be blunt, all I have to do to stay motivated is look around me when I go to the cardiologist. The waiting room is full of people who are clearly not well and don't have a good quality of life, and part of their problems are caused directly or indirectly by a lifetime of not taking care of themselves. I'm not judging them, but I don't want to become one of them. I was born with a screwy heart, that's out of my control. How I take care of my heart and my body is within my control. I figure it would be the height of stupidity to let myself become overweight and out of shape, to live on fast food and clog my arteries, to poison my lungs with smoke. Life is full of choices, I choose to do what I can to not make my heart worse.

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