New To Club

Hi everyone -
My name is Amy and I recently had a PM inserted on an ER basis due to Heart Block. I am 40 years old and not feeling really good about it. I am having a hard time trying to feel "NORMAL" again. Comments from others about me being to young for a PM does not help. It almost makes me feel like they feel that I must have done something wrong for this to happen to me at such a young age. I was just wondering if anyone else can give advice on how long it will take to adjust (mentally and physically)? Its been 2 months for me and although I am very thankful to be alive and not passing out anymore, I would like to feel normal. Mostly, I have problems sleeping. The PM seems to feel differently when I am lying down. Almost like my skin in stretched too far. Thanks for listening.

11 Comments

Welcome

by RosyEatWorld - 2013-08-14 10:08:16

Hi,
I am 29 and just got a PM almost 2 weeks ago. I knew I would need one when my 1st degree heart block progressed. I was also rushed to the ER to find I had progressed to complete heart block about a year after I was checked and told my 1st degree heart block was fine. I felt so much better immediately. I was having dizzy spells, shortness of breath, severe fatigue and other symptoms for weeks that I ignored. Age and lifestyle have nothing to do with heart block or getting a pacemaker. I also get the "you're too young" when people realize my situation. I'm not sure about the skin stretching part since mine was implanted almost under my arm. I take melatonin to sleep since it's natural and non habit forming. It works on most occasions. Mentally I had a couple of good cries and got over it. I know my life will be better and I am looking forward to doing things I was never able to do before I had my PM like 5k runs and maybe one day a marathon. It is what you make of it, stay positive and know that this is a good thing that should improve your quality of life. Good Luck!

Hi Amy,

by Duke999 - 2013-08-14 10:08:27

I know exactly how you feel. I'm also in the 40's and I had my PM for 5 months now and I'm still dealing with it mentally and physically. I tell you, this whole ordeal is a mental game. Some days I feel OK and some days I feel sad, some days I feel angry, bitter, etc. It's a emotional roller coaster for me. None of my friends have PM, so it makes me feel odd and ashamed for some reason. There are times I asked why me, what did I do to deserve this, etc., but at the end, no one is going to feel sorry for you. Like I said, it's a mental game and you must pick up the pieces and go on. I know it's tough. You will find some people on this site are incredible because they too went through or are going through the same as we are. They are quite supportive and knowledgeable. We share what we know on this site and we support each other emotionally.
FYI, once the PM is implanted, it's not over, you can actually have your PM tech and EP make adjustments (software tuning) to make you feel better. The original settings of your PM may not make you feel well. I didn't know about this and I was so mad at my PM tech and EP for not letting me know about this. I had to find out about this on this site. Anyway, you might have to keep going back to your EP multiple times for them to make adjustments because each day you will experience different kind of problems, you have to write down and then tell them what the problems are. The settings adjustments is a whole new ball game by itself and you have to navigate through this process to find the right adjustments for your own case. This whole experience is not easy for my. It teaches us patience.
I wish well on this new journey. You're not alone Amy.
Anytime you have questions or something you want to discuss, just post a message on this site and there are quite a few wonderful people who can answer or share their experience with you. Take care and please hang in there.

hey

by alicia6650 - 2013-08-14 10:08:39

I am 29 now and got my first device in 2011, preceded by emergency open heart surgery when I was 22 in 2006 after a car accident...So, I hear you on the too young comments!!

It takes sometime to feel normal. But, it will come.

I think my biggest thing to tell you is that allowing yourself to feel like you must have done something to "deserve this' in that negative way is crazy. Maybe the idea that 'everything happens for a reason' makes things seem easier to deal with...but I don't believe that. If you read my first post, you can see what I have been through. and it would be completely cliche for me to say that everything happens for a reason, because I have and am still having a really rocky heart-health road but I am very able to find the positive in things. But I think the truth is that sometimes, things just happen. For no reason, and without explanation. It is our choice to give things a reason. I think things are placed in our path, and then it is up to us to take it and make it a positive line in the sand of our lives.

That's not to say that makes any of this easier. It is tough. But we can't change that this has come into our laps. All we can do is decide what we do after it lands there.

In terms of sleeping..it will get more comfortable. Both your body AND your mind need to get used to the device. Both will take time, and both will be hard. But you will get there.

And lastly...the normal you will eventually feel is going to come, but be prepared- your normal will be different. And it should be. This should change you mentally, it sure as hell changes you physically!! You will be a different kind of normal..a special kind of normal that can only come from a person who is faced with a challenge that not everyone is, and handles it with strength and grace.

I hope it get easier for you soon....=)

Welcome Amy

by Reboot1212 - 2013-08-14 10:08:41

By your positive attitude, I'm sure you will adjust quickly - but, like all of us, in your own time. I was also an ER 'surprise' situation for 3rd degree heart block. Even at 58, considered 'young' for a PM. More importantly, Doc said -though unusual, not unheard of, by any stretch. Also made it clear nothing we do or don't do causes this. But the cure is sure - and all things considered, pretty easy to 'live with". Don't get hung up on what others say - for those close to you, it came as a surprise as well. Give yourself and them some room to get your head around it - in the meantime enjoy the benefits, and welcome to the club! I find that holding a small pillow - sometimes under my arm, sometimes over my PM helps with sleep with the added support. Physical healing comes quickly - especially with the improved circulation. Keep us informed of your progress!

Welcome to the club

by Grateful Heart - 2013-08-14 10:08:53

Glad you found us!

First, you can tell your friends there are members on this site that have had a PM since infancy, so you are not too young. If you need one, your age doesn't matter.

You have done nothing to cause this, it is an electrical problem with your heart. I use to feel the same way until I learned about my condition and the reasons for a PM/ ICD.

Learn all you can about your device and condition and understanding helps with the acceptance of it all.

For sleeping, I still sleep with a pillow under my PM arm. It helps so that your arm/ skin will not feel stretched. My device sticks out and it's just uncomfortable trying to sleep.

We talk about this a lot, but you may want to try Cardiac Rehab. It helps you adjust physically and mentally to the "New Norm" of life. There is a whole discussion on the subject a few threads down from here.

If you have any questions, feel free to ask, many here are willing to help. You can also private message me on this site if you would like.

It will get better, it just takes some time.

Grateful Heart

Hi

by rnff2 - 2013-08-14 11:08:22

I had my PM placed about 3 months ago and I was 40 at the time. It is a very hard thing to convince yourself that "this" is really ok, I'm not so sure if I'm even convinced yet. I had to wait a week for mine to be placed while sitting at home, symptomatic in heart block. My husband rented some movies, one of which was "This is 40" it's a comedy about turning 40...now I'm usually not a fan of stupid comedy...but it made me feel a lot better, maybe it was just the laughter, but it sure put 40 into humurous perspective...LOL. As for sleeping, I have a pillow on each side of me and I tend to lean on them instead of totally being on my stomach with one arm over my head the way I used too. I had my PM placed under my muscle, lower and farther to the left to "hide" it a little. I had alot of anxiety about it being visible and the scar showing so because of the placement I have a little tightness over mine at times too. You can always talk to your doctor about your sleep issues and they may provide you with some over the counter suggestions or prescription medication if necessary.

I wish you the best, and just take it day by day...so far that seems to work best for me.

Welcome Amy

by dad4dds - 2013-08-15 02:08:38

I was 49 when I recieved my first pacer and 52 when I had to have a bi-ventricular ICD/Pacer put in. When it happend I was uneasy. Then I realized this is keeping me alive. I am doing good now. I do almost everything I did before. It took me about a month or so to get back completely normal medically and physically. You do alot more thinking when you are trying to sleep. Give it time it will work out. We are here for you.

Good Luck

Brian

Hi Amy

by depreal30 - 2013-08-15 03:08:01

I am only 33 and had my PM a little over 2 weeks and still find myself in crying stages. I just need to remember that this will benefit myself in the end and evenutally it will get better. Keep your friends and family and positive people close to you. WE are all in this together:)

Hi Amy

by Acin - 2013-08-15 09:08:25

Sounds like you have received great feedback. Folks of all ages have pacemakers/ICD's. I'm not as young as you - I'm 50 yrs old and when I received my ICD, one of the healthcare folks helping prep me for surgery said "what are you doing here?" "Your are too young for this!" So, I know the feeling! It takes time to feel "normal" again. I just got mine July of this year. I feel better but I often worry about my health. It took a long time for me to accept my heart problem. BUT I am so grateful to have my ICD. I feel blessed and although I still get down sometimes, I try to think positive. This site and the members are great and they have encouraged me through this journey. I hope you find these folks helpful and encouraging. Just like they say in AA "Keep coming back!"

all sound advice

by ohiolaura - 2013-08-15 10:08:48

I don't have anything profound to ad,as you've received so much good advice and encouragement,I will leave it where it is.
In a nutshell, I was 49,and from first off moment to PM being put in was less than 3 weeks.I felt like you have described,and as others have.I think we all have so much in common,we are normal,considering what weve gone thru.
Sucks I agree,and feeling betrayed by your body I have to say is how I felt,and sometimes still do feel.
I thought I was too young too,sorry guys,only old people have pacemakers, o crap,now Im in that group!
Fight,and be angry sometimes,its ok to be mad!
Just remember,were the lucky ones.
So much for no words o wisdom from me,sorry!
Laura

What is Normal? Too young?

by donr - 2013-08-15 12:08:37

Amy: Both questions have fuzzy answers. Mainly because they are relative.

Answers in reverse: There are members in here who have had PM's essentially since birth. So you are not TOO YOUNG! 'nuff said about relative age. Other than that we have people of every age up into their 90's getting first time PM/ICD's.

Second, & a bonus answer for a question you did NOT ask. There are exceedingly few outside events that can cause an electrical malfunction in a heart. What happened to you is just like your TV set (or anything electrical) going belly up - it JUST happens, no reason ever found. Pfffffft & it's croaked. Ever bring home a new electronic gizmo & it was dead right out of the box? Go look at the returns at Best Buy - they get them all the time.

Back to "Normal." Normal is a relative term. Normal may be different for you now w/ the PM. It most likely will not, but may be. Let me give you an example. I would NOT recommend that you get a job operating a jackhammer breaking up old roadway concrete. Your PM/ICD might not like 8 hrs a day of the vibration. Besides, you probably don't smoke smelly cigars or have a big belly to hang out over the Jackhammer handle.

Most of us lead pretty normal lives, however, w/ very few limitations as to what we can do.

Sometimes you have to learn to accept things that cannot be changed - f'rinstance - now you have a small computer embedded in your upper chest. You, & only you, have to adapt to its existence. But give healing a chance. It is normal to hurt & feel funny/uncomfortable immediately. After all, you've been cut open & it has to heal. What's NOT normal is to have that condition continue for months. We all vary in our physical recovery time.

Ah, but how we feel as far as our heart functioning is concerned. That can take some time, varying from a couple days to months (as you can attest). You are still you; Same personality, different physical capabilities - but the physical has been restored. Perhaps it will take a few tries to get all your PM parameters correctly adjusted to suit you - but it can be done.

You will have to learn how to ignore the socially inept cretins out there who have no concept of what hosting a PM is all about. Dismiss them - they are insignificant.

The people that count are family & you..

You have come to the right place for the answers to this type question.

Good luck.

Don

You know you're wired when...

You fondly named your implanted buddy.

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