I am so glad to have found this club!

I have had my pacemaker for 22 years. I always thought that this was something I would just have to deal with on my own. I never dreamed there would be forums for those of us who have pacemakers.
I was diagnosed with a second degree heart block when I was 15. Being so young I was confused, scared and didn't understand much of what was going on.
The doctors told me nothing and it was hard for my parents to explain things to me. I'm not even sure how well things were explained to them, and at the time I was at the top cardiac hospital around.
Everyone in the cardiac wing made me feel kind of like a bug under glass...I was the youngest patient they had seen.
Up until 8 years ago I still never really understood what had happened and why. No one ever took the time to explain it to me. I then met the cardiologist of my dreams! He took the time to explain what happened to my heart and why I had to have the pm. He was the first to ever do that for me. The day he retired I cried....I will never have another doctor like him!
Anyway, I feel blessed to have found this site. I wish the internet had been around many years ago! I only happened to stumble onto this site because I am having some other health issues and had questions about what proceedures I could and could not have done.
Now that I have found so many other people who have gone through some of the same experiences that I have I no longer feel alone and I will visit often to see how everyone else is doing.

7 Comments

welcome!

by Tracey_E - 2009-01-11 02:01:54

I've been the youngest person in my cardiologists office for 30 yrs now, and the only person I know under age 80 who has one, so I was very excited when I found this site also! I'm perfectly normal here, lol, and by far not the youngest.

A good doctor makes all the difference, huh? I was diagnosed when I was 5 and I didn't really understand what was wrong until my teens when I took physiology in high school. They explained it to me the the top and bottom of my heart don't beat together, that's it. I feel very fortunate to have a wonderful doctor now who explains things to me. My St Judes reps are awesome as well. I can accept just about anything if I understand it! I wish the internet had been around when I got my first pm.

Advice for Jeepers!

by CarolL814 - 2009-01-11 07:01:31

The first question that I would ask is weather his heart block is 2nd or 3rd degree. There is a a definite difference. With my 2nd degree, type 2 block the top (atrial) and bottom (ventrical) of my heart do not beat in sync. The top beats faster than the bottom as well for me. A 3rd degree block is a complete block where the electrical signals are not sent from the top to the bottom.
My symptoms also came on very suddenly, but because of my age doctors didn't want to do the surgery.
I have a question for you...did your husbands mother have lupus by any chance? That could also be a link to his condition.
No one has ever been able to give me a reason for my heart condition. I don't know that I will ever get one.
I have never really had any strange side effects with my pm. There is some discomfort at times...exercising especially if I am putting a lot of pressure on my chest, or if I lay too long on my left side it will bother me. Other than that my life has been pretty normal all things considered :-)
The only problem I have ever really had that was somewhat serious what that one of my leads cracked about 4 months after my first surgery. It was simply a matter of going back in and putting new leads in.
I wish the best to you and your husband. You will both be fine!! Now that his heart is working properly he is going to have a much better quality of life. He will probably even notice more ability to do things that he didn't realize were not quite right before the surgery.
I hope all goes well when you go to see the specialist!

Carol

A big welcome..

by Suze - 2009-01-11 11:01:22


Yes, a big welcome. Glad you found us. I'll bet there WASN'T a forum for very many things 22 years ago! Isn't technology wonderful. (That includes technology for pacemakers, also).

You will like this site, I promise.

Take care,
Suze

Glad you found us....

by maryanne - 2009-01-11 11:01:43

Although I wasn't as young as you when I got my PM....I too felt like I was under a microscope....I was actually questioned by nurses many times when I was on the ward waiting to go for my implant if I was sure I needed one. I was amazed and shocked at the questions....I didn't know I could only go by what the doctor told me and what my symptoms where....it was he who felt I needed a PM.

Again, I too wish there had been internet access back then I would have done a lot of investigation.....Instead I put a lot of faith in the doctor and hoped everything would turn out.

Welcome to the club and I am sure you are going to find that there is a wealth of information out here....

cheers, Mary Anne

Welcome

by chip - 2009-01-11 11:01:55

Welcome!

This site has been a blessing to me also.

There is a wealth of wisdom and information here.

question!

by jeepers - 2009-01-11 12:01:40

i am glad you found this site! It has been so helpful for my husband I look on it and relate it onto him! Hes had his pacer for 6 months and we really dont understand it all . We are going to see a top ep specialist on the 22 Jan) we are still wondering if this heart block was genetic or if it was a virus we have 3 kids (he just turned 38) its still a constant worry. he has 2 or 3rd degree heart block, we heard both in the hospital? and collapsed out of no where? no signs no symptoms before ? we were wondering if you have any questions you would suggest usasking the specialist? I was also wondering do you have any heart damage? his ejection fraction had 3 diff readings from 3 different test 50/55 ,40,and the last 36% It is reassuring to know someone has had a pacer 22 years and is around his age? have you ever had any unusual side effects? Thanks if you have any info.

Carol

by jeepers - 2009-01-12 08:01:14

no she has never has lupus. I have read a lot about that too, I guess we are really confused that they may not ever know why this happened I guess we are concerned that there is something still going on. Now that we are 6 months out and he feels worse than he did before. The doctors seem confused when he says he dont feel better that he felt fine before this? When he was in the hospital last week they came in and did a pacemaker check and she said it wasnt beating on its own the lower she took it? he went from using it 3% to 100% ? Still no answers they seem to say it dont matter because he has a pacemaker? Now I think hes suffering with anxiety/depression wich he just started taking med 2 days ago? hopefully the specialist will be able to give us some answers or atleast a little reassurance. Thank you for your response!

You know you're wired when...

Your heart beats like a teenager in love.

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I had a pacemaker since 2002 and ever since then my life has been a total blessing.