i'm a new pacemaker member!

Hello to all on this fabulous site!
I recieved my pacemaker on the 16th april 08, i'm 30 years of age and after fainting on the 12th april got admitted to hospital, scared out of my wits. Couldn't believe that I was going to be fitted with one, it was a total shock.
My boyfriend found this site for me and I log on to it on a daily basis now and decided to join.
Think I am still in shock from the whole experience of it all.
I feel better than I did a few weeks ago, but still not 100%, I'm not back at work either not until another week, I feel like i still have to build my faith and confidence and i'm frightened to get too excited cuz I feel like my heart races away with me even though the reason I had it fitted was that it was slowing down too much and thats why I fainted. I have something called a.v block.
Did anyone else feel like this?
I must also tell you that I was only out of hospital 4 days and my brother who is 33 had to have major open heart surgery to have his aorta valve replaced. (totally not related to my probs but as you can imagine my recovery time hasn't been totally stress and worry free) He is still in hospital too.
I'd apreciate any good advice, you all seem like really nice people and with lots of experience.
Take care, Louise

10 Comments

Welcome!

by Swedeheart - 2008-05-04 01:05:03

Welcome Louise,

You are very fortunate to have found this site... folks here are awesome! I am on day 70 since receiving my pacemaker. I am twice your age, but went through (and some still...) the same shock and fright that you are experiencing! We all have had to face many fears with our devices.

I have heart block and occasionally my heart drops down to 30 beats per min. I never quite blacked out... but experienced some nasty dizzy and near syncope events. It took me quite a while to begin to feel better. But after 2 months I am beginning to feel like there is real hope in returning to my life and life-style.

I am sorry to hear about your brother and all of it happening at the same time. I am sure it is an added worry that would be much better if you didn't have to deal with it! However, you and your brother can support one another and share your thoughts. It could be a great gift in that respect.

My advice is to take it as easy as you can and ease back into things as you feel like doing them. It will take awhile to gain confidence in your pacemaker. After a couple of check up visits where they *see* what your pacemaker is doing it should really help. In the meantime be sure not to lift your arm above your shoulder and don't lift anything over 4 or 5 pounds with your left arm (I assume your implant is on that side...) this is really important! My doctor told me 4 weeks, but most of the folks here emphasized 6 to 8 weeks for keeping the arm from being strained. This is all so the "leads" will set and work well for years.

I have a Medtronic pacemaker and they have a good website and often answer questions I have when I email them. So you might check out your manufacturer and see about their website. Most of them have good ones.

Good luck with your device and your recovery! Post any and all questions.

Swedeheart

Welcome to the site,,,,

by Suzzy - 2008-05-04 02:05:17

The initiail shock should be over by now, and you should be starting to move on with your everyday life. You need to remove the stressors in your life, and do not worry about your brother. I know that is easier said then done but; part of recovery is having a positive attitude, and being supportive. That in itself says so much towards recovery.

New Pacemaker

by SMITTY - 2008-05-04 03:05:28

Hello Louise,

Welcome to the Pacemaker Club.

Sounds like you are one of us with a pacemaker that suddenly found ourselves with a million questions and few answers. I recognize that symptom because I lived with it too many years, but after 8 years I am totally comfortable with my situation so I'll try to pass along of some of my great wisdom about pacemakers. Please don't be offended by that comment as I am kidding. I don't have great wisdom, but I may be able to shed a little light on some of your concerns.

You got your pacemaker for the same reason many of us get one. Slow heart rate, or bradycardia and I don't pretend to know the exact cause of that. But for some reason somewhere between the point (called sinoatrial node, also called the sinus node) where our heart's natural pacemaker generates the impulse to make the heart chambers contract and the hearts chambers is a glitch. In other words the hearts signal is not strong enough or it is being blocked for some reason and we get pacemakers to do or help what our heart's natural pacemaker is unable to do.

The following is a more educated description, which I got off the Internet, of your problem”A heart block is a disease in the electrical system of the heart. This is opposed to coronary artery disease, which is disease of the blood vessels of the heart. While coronary artery disease can cause angina (chest pain) or myocardial infarction (heart attack), heart block can cause lightheadedness, syncope (fainting), and palpitations. First-degree heart block (also called first-degree AV block). The electrical impulses are slowed as they pass through the conduction system, but all of them successfully reach the ventricles.

You have had your pacemaker for about three weeks now so you are beginning to get over the shock of the experience. While you may be over the initial shock, the thought that your life now depends on some manmade device implanted in your body is still very much with you every day. However, I can honestly say I do not think man has ever made a more dependable device so concern about it failing to do its job should never be a concern for you. That little Timex will sit there and keep your heart thumping away just as surely as the Energizer Bunny keeps going and going and going.

Now there is one down side to all this greatness. What your pacemaker does for you depends on the settings that were programmed into it when it was implanted. Therein is the catch for many of us. Our pacemaker comes with "factory settings" that are altered by our doctor as he deems necessary to fit our needs. Sometimes these settings need to be tweaked a time or two for us to get the optimum results from our pacemaker. For most it takes one or two setting adjustments. Sometimes it takes more, but the best settings for you can be had so never quit asking if you are not satisfied with the way you feel. Once you get the best settings for and after you get over your discomfort from the surgery, you will find yourself living with that pacemaker and very seldom even thinking about it.

A few more words and I'll stop. Your pacemaker is almost indestructible. The electronic circuitry is encased in a titanium case and few people could even survive the impact that it would take to damage that pacemaker. The leads are a little more fragile, especially at the beginning. If your pacemaker is located under your collar bone, those leads got from the PM through a blood vessel into the heart chambers. It takes a few weeks, or maybe months for these leads to become imbedded in tissue that will provide protection them. You will need to ask your doctor for the amount of time you need to restrict your activity. For me it was only a few weeks, but no everyone is so lucky.

You have now started on a journey with a new friend that does not need daily attention. Enjoy that journey. By the way, as I said I got my PM 8 years ago and at age 71. I can assure you I would not be here pecking away at this keyboard had I not gotten it. So, if it can keep an old geezer like me bumping along, just think what it do for you youngsters.

I wish you the best,

Smitty

Hello

by Suze - 2008-05-04 06:05:23

Hi Louise,

I have little to add to everyone's comments and advice since as usual they have said everything very wisely. They all really helped me two years ago when I was newly implanted.

But, I'd like to add my "welcome" to you. You will like it here on this forum, I promise. And don't be shy asking any questions or voicing your concerns. This is a great group.

Suze

can't add much

by mobags - 2008-05-04 11:05:35

to the above comments except to say in time you will be even better then before. I got my pacer in oct last year (single lead....may need to uppgrade to dual due to new conduction delay problems) but I just finished my first 10K last weekend with a time of 57 min 55 sec! I bet you are feeling better already and will find a lot of support and information here.

thinking back

by LouLou21 - 2008-05-05 05:05:48

Hello its louise again,
i have been reading quite a few comments over the past few days and also on medtronic website (thanks swedeheart) about the tiredness factor before being diagnosed. I'd say that before the shocking avent of fainting 3 weeks ago when i got admitted to hospital my energy levels just plummeted. I felt exhausted at times but i just put it down to having just bought my first house and refurbishing it, moving in and settling down plus working full time. Thinking back could it have been the start of my slow heart rate?
Also another question, i used to enjoy the odd glass of wine at the weekend but am totally frightened at the thought of even having a sip at the moment. Obviously i'm aware of it still being early days with me but does anyone or did anyone feel like this and is it something i should ask my doc at my 6 week check?

Thanks for listening to me waffle on.
Louise.x

Thanks

by LouLou21 - 2008-05-05 06:05:57

Thank you so much for all your very helpful comments, i cant believe how much you all go out your way to tell me your stories and great advice!
I felt that i had a really good day yesterday and hardly noticed my pm doing anything.
My brother is doing well too so that always helps i think.

will no doubt be asking some more questions soon,
take care all.
Louise

Thinking Back

by SMITTY - 2008-05-05 07:05:12

Hello Louise,

You are not “waffling on.” You are just like so many of us with a pacemaker, except you were fortunate enough to find this site where other people that have been through your situation will talk to you. For me, it took more than two years, but it was a Godsend when I did. Because we have all been there, we are glad to offer a few words of wisdom and lots of encouragement. I'll bet that in a few weeks you will be a contributor to those that come along after you.

Based on personal experience I have no doubt that your exhaustion was at least partly caused by the slow heart rate. Just think about it, every cell in our body needs a constant supply of oxygenated blood and when the heart rate is slow the amount of blood available may not be enough to keep us from getting extremely tired too fast. Many years ago I had prescribed a medicine whose sole purposed was to slow my heart rate which it did big time. My HR was in the upper 30's to low 40's and I often said I felt as if I was walking through ankle deep mud all the time. I got rid of that doctor and that medicine and in a few weeks I returned to the real world of the living. So I feel sure you will be feeling much better soon.

As for the wine, I've had prescribed by my cardiologist a couple of bourbons and water every day and have been doing that for some 30+ years. I never missed one after I got my PM, so I say have your glass or two of wine. The only precaution I can see is just never overdo enough that you might fall and hurt yourself, which I know would never happen to you. A small amount of alcohol will lower the blood pressure which lightens the load on the heart for a few hours. Again, I say have your wine and it may help relieve some of the stresses you are undergoing right now.

And please stay in touch with us. We are all interested in hearing from our new family member.

Smitty

louise

by jessie - 2008-05-05 10:05:15

welcome to this club. i have had my dual lead pacemaker for 2 years in august and i must say i have felt very good since. was finally diagnosed and it was put in on an emergency basis in our local e.r. thank god a cardiologist happened to be on hand. i did havea few ekg's prior but they were okay so one hot august morning i went for another ekg and my pulse was 28. i was rushed across to e.r. in a w.c. and i was not even upset. i didn't have the enrgy to become upset. soon after a few months i was just great again like new. lol it is a great club with a lot of support and info jess

anxious

by LouLou21 - 2008-05-08 06:05:40

Hi everyone, Hope all is well.
I've had a few odd days that have caused a little anxiety.
On tuesday i was getting dressed and i raised my left arm above shoulder height through the sleeve without even thinking about it, now i'm anxious and probably paranoid that i've pulled a lead out. I'm sure that i feel simular to that saturday i got admitted before my pm got fitted. I've got that feeling of a bit breathless and feel unfit whenever i get up to do anything.
I still dont feel as if i have much energy and get tired out quickly. (i am waiting to ring the hospital to speak to the lady who deals with my pm settings got to ring in a couple of hours)
Am i expecting too much too soon?
take care all
Louise.xx

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