Can I have my pacemaker removed?

Hello all,
I'm 28 and had my pacemaker inserted three weeks ago. The first week was very difficult. I felt extremely sore and began to get very depressed.
When the dressing came off I cried as it made me realise that this is part of me for the rest of my life. I was very positive about it before the operation as the doctor and other people with pacemakers said it would change my life, give me more energy, stop the dizziness and fainting.
However, I still feel dizzy all the time, my blood pressure is generally 80/40 - 100/60 max! And I can always feel the pacemaker when it "kicks in"
I went back to work last week for one day, it was very stressful and i am very restricted. I just feel no one understands as all my friends do not have a pacemaker.
Is there any way I can have this removed? Apartently I am pacing 11% I have no idea what this means. I just feel that not much has been explained to me.
I'm sorry to vent, but I'm just so confused, scared and alone in this. My family are supportive but they do not understand what it feels like.
Thank you for taking the time to read this!

9 Comments

Hello Amanda

by IAN MC - 2012-11-17 03:11:29

Yes you could have your PM removed but that would mean that you would go back to the way you were. I remember in your last post you said that you were collapsing and your heart was stopping; so that is exactly how it would be again ! That would seem to me not to be a wise move.

You are only 3 weeks into your new bionic life and you sound really fed up. No, you shouldn't be feeling dizzy and no you shouldn't feel the pacemaker kicking in . So you should see your Dr again as soon as possible and calmly spell out everything that you have told us. You may need adjustments to the PM settings, you may need take drugs to stop the dizziness.

It is early days yet and some people seem to need a few weeks before seeing the full benefits of having a PM but, still, if I were you I would go back to the doc.

Your 11% figure, by the way, simply means that 89% of the time your sick sinus node is not sick and is working perfectly, but in the other 11% of time your PM is kicking in and preventing your heart rate from going too low.

Best of luck and I'm sure you'll be running and travelling again when you've sorted out these temporary problems.

Ian

healing

by Tracey_E - 2012-11-17 03:11:34

It takes time to get back to feeling good! A pm can't do anything about blood pressure, so talk to your dr about that. Give your dr a call and see if you can get to the bottom of why you're still dizzy.

As Ian said, if you were to have it removed, 11% of the time your heart would be struggling. That's over 2 hours a day. Yes, it can be done. No, it's not a good idea.

Hi

by 28sedan - 2012-11-17 03:11:54

I had my PM installed 20 months ago. I went through a lot of what you are going through. dizzy weak scared why me and no one else I know. Major depression my whole world was turned upside down.I found out 3 days befor mine was installed. One day at a time and you will do fine. 28 years old is an awesome age to be and in time you can look back on this and smile.
My heart goes out to you so talk to lots of people come back here and read more stuff. i am alive today because of the PM and so are you hello nice meeting you.
Vent away its a miracle drug.

Pacemaker Blues !!

by donb - 2012-11-17 04:11:50

Hi Amanda, Seems like you're also very normal with the post pacemaker blues. I started with your same symtoms at bout your age. It wasn't till many years later that I was blessed with my 1st PM. At age 60 my PM turned my life back being my usual very active like age 28.
At age 76 I had to have my PM removed because it eroded and didn't like it''s home. So Drs. decided I didn't need a replacement. 2 months later without my PM my SSS returned & also my quality of life. I'm on my 4th PM & it just recently decided it doesn't love me anymore as It moved, swollen up site.
So, my Dr has me set up for this coming Tuesday & I'm sure it'll be relocated & tied down. You see, I'm age 80 & my mind & body still thinks I'm 28.as physically I do way too much bull work. I know I abused my Titanic buddy with tugging, reaching & lifting, also I'm not afraid of t he upcoming surgery as it will be #15 in my short 80 yearsof life.
Enough !! Amanda, believe you will be very happy with your PM as it will support you for miles & miles of travel in the future.
Donb

vent all you like!

by ohiolaura - 2012-11-17 09:11:15

I agree,talking here to those you have something in common with is a good thing,even if you feel you have to unload a bunch of feelings,not all good ones, here.
It helped me so much,advice and support I got here has and is helping me,not to feel alone in this new part of my life.Stay here,read,post,ask questions and whine or complain if you need to,its all good.
I dont know about a removal of the pacer,sounds like that would be a great option.Your area thats comprimised now,from surgery and the new addition,will improve.I hated looking at mine,just pissed me off,that I had no say basically in it,all I know is one day I was good,and not long after I was waiting in a hospital room for surgery,I didnt even ask what it was going to look or feel like,guess it wasnt a question that came to mind.All I knew is that I felt like sh*t and was scared sh*tless,and wanted to go home,grow older with my husband,and watch my girls grow,and get married,and live fabulous lives.
You will get better with it all,trust me,I have.It seriously took me 6 weeks,to the day(maybe a subconcious mental thing?Who knows),but I did turn the corner.
Please be patient,I know your family thinks they understand,but unless theyve gone thru this like you are,I doubt thats possible.
I think thats one of the hardest things to do,feel like youre not alone in this,it was really hard for me,now look at me!Well,listen to me I guess,listen to all the great advice thats here for you.There is so much,be patient.
God bless!
Laura

oops

by ohiolaura - 2012-11-17 09:11:28

Reading what I posted,sorry,meant to type removing doesnt sound like a great option.......dogs on my main typing arm,so typos are more frequent.....sorry!

Not a good idea

by ElectricFrank - 2012-11-18 01:11:38

As others have said it's not a good idea to remove the pacer especially this early in the process.

You might as well get used to having gadgets in your body. With modern medicine you likely to be presented with artificial joints, cardiac stents, digestive pacers, brain pacers and who knows.

I can say that everyone DOES NOT have depression, low energy, feeling bad about themselves, etc. I have had mine since 2004 and felt great since they turned it on in O.R.

frank

Thank you!

by Lilmisstraveller - 2012-11-19 05:11:09

Hello everyone!

Thank you so much for your kind words. I am seeing the doctor tomorrow, so i will ask him lots of questions. Does anyone know if I can ask him to increase the rate of the pacemaker. At the moment my PM is set at 50 and my resting heart rate is 50-55, and at night down to 30.
Would increasing the rate to 60 stop the dizziness?

I spoke to a work mate and suggested talking to someone professional about my feelings as when it first happened it was very traumatic (I woke to a doctor doing CPR as my heart stopped) I was alone when it happened and i just fell so alone now, even though i'm back in my home country. I am doing cardiac rehab and I am the youngest in the group, and I do feel quite strange being there, but i throughly enjoy the exercises and i'm so looking forward to doing 4-5 cycles classes I used to do.
thank you for reading and caring!

What to ask the Cardio

by donr - 2012-11-21 06:11:16

You may ask him to do anything you want! It's YOUR BODY! If you are going to be shy about your part of the treatment, you will get whatever the Dr. wants - not what you want.

Let's understand one thing here - the mental feelings you have right now are very common - note that I did NOT say normal! You have come to the right place to ask the questions. There are many folks who have experienced your symptoms & can help you out.

You must prioritize what you do for your recovery - starting w/ the easy part - getting over the PHYSICAL effects. Face it, you just lost a knife fight & got sliced pretty deeply. You are GOING TO HURT to some extent; you are going to be sore, stiff, uncomfortable, etc., for a while. You have movement restrictions on the PM side arm for a while. Oh, forgot - you will have some swelling & redness & a scar. All that will pass w/ time & patience on your part.

Now for the hard part - You suffered extra trauma when you awoke in the middle of CPR - my guess is that was REALLY scary! Ever heard of a malady called PTSD (Post Traumatic Stress Disorder)? Normally happens to combat soldiers. Also jumps up & bites cops, firefighters, victims of violent crime, sexual assault, and, oh, yes, people who awaken in the middle of a CPR session on the victim end. Yes, you should seek professional help for that. Caught early & seen by a pro can make reasonably short work of getting you in a position to cope w/ it.

Further - you are correct about people who have never gone through having a PM installed just not understanding exactly what it is all about. That, unfortunately, is life! And we have to play the hand we are dealt.

You do not sound like a shrinking violet, so I'll tell you right now, you have to confront your family & tell them exactly what you went through & what you need from them. Do not assume that they should know - they don't & can't. They will not till YOU tell them. Take them one at a time & sit down where they cannot escape and have a very serious (Call that "Heart to heart") talk w/ them & do not let them go till they understand your needs.

Your family's problem is ignorance (in the dictionary meaning of the word) and they just don't know how to treat you. Had you had a real heart attack with clogged coronary arteries & all that goes w' it, they'd know - heart attacks have been around since Cain slew Abel. PM's OTOH, are rather new, being less than 50 yrs old. So you are an oddity. They need education.

Friends & co-workers fall into the same category, but you cannot treat them quite as hard as you must treat family members. But if YOU shrink from your condition & act ashamed, they will sense it & treat you like an outcast. Right now they don't know HOW to treat you & will not know till you tell them. It's in the same category as being a cancer survivor - people just plain don't know how to treat you or what to say. You have to educate them.

As to scar - tough one for a woman, goes w/o saying! However, give it time & it will become less noticeable. USUALLY. There are exceptions. There are two choices for you - 1) wear it as a badge of courage & flaunt it. 2) hide it w/ clothing. Choice #2 is kInda tough if you go to the beach & run around half naked.

The best medicine to aid your recovery is not found in a pharmacy. It's called "Tincture of time" & is available free to all of us.

The best to you!

Don

You know you're wired when...

You have a 25 year mortgage on your device.

Member Quotes

At age 20, I will be getting a pacemaker in few weeks along with an SA node ablation. This opportunity may change a five year prognosis into a normal life span! I look forward to being a little old lady with a wicked cane!