Hard to accept I need a pacemaker

Hello all, i am new to this forum. 31 years of age,  single mother of 3 daughters. I have been having fainting episodes that started when i was about 12 or 13 and have got them more often since having my first child in 2006. My prior doctor procrastinated on sending me to see a specialist so i thought i was ok. Recently i had another episode where i was able to record myself (family members where with me) and after seeing the video it scared me. I then decided to change doctors and this doctor quickly referred me out to a cardiologist. On august 27th of this year the cardiologist scheduled me for a tilt table test where i was told it would take 30 mins. I didnt think much of it. The nurse put an IV in my arm just in case and i was set. The tilted the bed upright and there i was thinking to myself this is nothing. 20 minutes into it i started to feel hot. Like if the heater was running full blast. And i thought just wait it out you will be fine. But then i started to feel dizzy and lightheaded and told the doctor i was going to pass out. I remember her saying its ok we will take care of you. We are here with you. I woke up to a crowd in the room and automatically started crying trying to catch my breath. The cardiologist told me i flatlined for 2 to 3 mintues and that she almost put a code in to incubate me. She said shes never encountered anyone flatlining during this test and was scared. That alone freaked me out that much more and made me wonder,  has my heart ever stopped during my episodes at home? Comes to find out i have vasovagal syncope/ bradycardia and need a pacemaker. Im still trying to grasp the idea of needing a pacemaker and dont want to accept the fact and am procrastinating. I made an appt for a second opinion but am scared to wait too long. Tomorrow is not promised and these episodes i get have been while im asleep and wake up to this feeling of heat in my body and lightheaded. All in all i know i need it and trust my cardiologist and am comfortable with her decision for me but im just scared and hoping that on a second opinion i will hear this was an error. Im confused on what to do. Any opinions or advice are highly appreciated.


8 Comments

just do it

by Tracey_E - 2018-09-05 10:29:56

You know what's scarier than getting a pacemaker? Flatlining. Passing out when you're driving your kids. Passing out when you're home alone with your kids and freaking them out.  Your kids unable to wake you up in the morning. There's a long list of things that are worse. 

What else is there to get an opinion on?? Your heart stopped, don't need a medical degree to interpret those tilt table results. Your test isn't borderline. Your symptoms aren't mild. No drugs are going to fix this. It's not going to go away on its own. I'm not trying to scare you and I apologize for being too blunt, but this isn't a really good time to go into denial. You've had a problem for years that's getting worse. You have kids who depend on you now so more is at stake. You have a diagnosis and the good news is there is a fix. Yes, that's good news. You could be without a diagnosis, you could have something you'd have to live with because there's no fix. Just do it. 

No one wants a pacer, but many of us have much better lives because of it. I found the reality of it was nothing close to how I'd built it up in my head. I thought it would be the end of life as I knew it, I'd forever be an invalid, that girl with the heart condition always at the doctor. Turns out I rarely give it a thought. I have a home monitor that auotmatically reports in every 3 months, I go in for a check up once a year. I got my first one at 27, so younger than you. I'm turning 52 this month, my kids are now in college. I'm healthy and active and no one looks at me and sees a heart patient. I was at Crossfit this morning then came home and ran some more because I'm training for a race. There's nothing I want to do that I cannot, the pacer makes sure my heart keeps up. It's just a tool to give us our lives back, a little computer that is more dependable than our wonky wiring system. Don't give it more power than that. 

Thank you

by Janet C - 2018-09-05 10:47:19

Robin1 and TraceyE thank you both for your advice and opinions. Theyre much appreciated. I will definitely take the advice and make a phone call to schedule my surgery. Knowing that theres others out there that i can lean on for advice and opinions makes me feel at ease and i know i am not alone. My girls need me for i am their only parent and i dont want to let them down with procrastinating this. I know i need it and TraceyE you are right theres many other factors that are scarier than a pacemaker. Again thank you both so much for giving me a piece of mind that i will be better with a pacemaker.🙏

you got this

by Tracey_E - 2018-09-05 13:57:19

If you have questions or just want to chat with someone who's been there, feel free to message me. You are not alone. For me, the worst part was the anticipation. The surgery was easier than I expected, afterward I felt better than I ever imagined I could. Focus on the positive and stay strong for your kids. The worst time is now, it's all uphill from here. 

btw, with the kids, don't let them see your doubts and fears. They can know you take it seriously but they will follow your lead. For that matter, most friends and family will follow our lead too. They see us thriving and not worrying (even if we're just faking it at first!) and they will eventually stop trying to smother us in bubble wrap. Believe it or not, some of them will even forget about it eventually. When I get a replacement, it always amuses me how many people say "oh, I forgot about that!"

Understandable

by pacemaker20 - 2018-09-06 00:47:53

I found out at 23 that I needed a pacemaker. I'm now 28, so 5 years in. Being scared is completely normal and understandable. However, it seems to be your best option. The procedure and recovery isn't really as bad as it seems. I know it's overwhelming but if it betters your everyday life it's definitely worth it.

Seriously, you've got this

by Gotrhythm - 2018-09-07 15:00:22

My friend, like you, flatlined when she fainted. I was in the hospital room at the time and saw it happen on the monitor. The day before, she had fainted while home alone, felll, hit her head, and broke her wrist. The reason they kept her in the hospital overnight though was that hitting her head caused a brain bleed. And that's why she was hooked to a heart monitor when she flatlined for 16 seconds.

She didn't want a pacemaker any more than you do. But she got one. Recovering from the broken wrist and concussion took far longer than recovery from the pacemaker surgery. Since, like you, she has no rhythm problems, no heart issues of any kind, having a pacemaker doesn't impact the qualtiy of her life in any way. She's as healthy, vital, and active as she ever was. Four years later, except for her once a year appointment with the EP, she forgets she has it.

Honestly, I don't think she's even particularly grateful she has a pacemaker. But those of us who love her, are.

Everyonr wants to run from something scary. Don't blame yourself for wanting to put it off. Just remember, the pacemaker is not the problem. Flatlining is the problem. Get the pacemaker and you will be able to put of flatlining indefinately. :-) 

Since you could still have syncopal spells, you might not feel any different after you get a pacemaker. But trust me, your little girls will.

so glad

by dwelch - 2018-09-11 01:39:47

I firmly believe I wouldnt be here without these devices.  I got my first one at 19 over 30 years ago.  I am on number 5.  For pretty much everything else I have reached that "just get used to it" age.  But at the cardiologists office, oh your so young...Nurses talking, hes so young I dont think we need to do that...

Just because you might be your docs youngest patient doesnt make you abnormal.  I think when I first found this site around pacer number four (my first pacer pre-dates the world wide web much less sites like this) there was someone here that started at 8 years old.  There are many of us that start this journey younger than others.  I have retired at least one doc, if the damn insurance companies get along, no doubt I will retire my current doc and will have to find another (unless the insurance companies force me to do that sooner).  But hey thats part of it. find a doc you trust and then trust the doc. 

Anyway there are a lot of us out here that started this journey young.  So long as the internet stays up there will be a community of others you can rely on.  My folks and I didnt have anyone other than the one doc to talk to, but in hind sight we made the right decision.   

I have chosen not to have the bedside thing for now.  So I think I am supposed to go in twice a year.  Normally after the first year its once a year as far as my experience goes.  As you get within the last few years (the printout is pretty much bogus, they cant predict the life of the battery sometimes a brand new one will say 5 years and last 10) say after 5 or 6 years after being put in maybe 7 or 8 depending, then they will want to monitor you more often, but that depends on insurance.  The old days we had these phone boxes with wrist straps and you put the phone on it physically and it made modem sounds if you know what a modem sounds like.  Put the magnet on, take the magnet off, they call back in a few months.  two visits a year and anywhere from two phone checks to a handful a year depending on the doc and insurance.  Nothing to be worried about!  They just want to catch the device as the battery gets low, you have LOTS of time to catch it and replace it.  No worries.  

You WILL be a pro at this, no worries.  And can walk and talk and live without worrying that you will faint at any moment. 

Same experience

by dtp2183 - 2018-09-23 12:33:03

My experience is the same as your's. I was passing out, had the tilt table test, no heart beat for 18 seconds, woke up to CODE blue activity and nurses giving me the devil for scaring them. At first I was on medication which seemed to stop the passing out, then my cardioligist recommeneded the pace maker after consulting with his colleagues in Japan. I was 46 when I had it implanted. I have had one change out for the battery after 14 years. I am 67 now. I have never had another episode since the meds and PM implanted. I do the 3 month check via the phone and see the doctor once a year. Even though they tell me mine does not activate that much I am glad I have it as a back up.

I have had no retrictions to my life style what so ever. I mostley forget I even have it. .

You should go through with this. It could save your life for sure. I hope my comments make your decision a little easier.

Life saving

by helen1973 - 2018-10-03 19:22:18

I was doing the same thing. Several emergency room visits. On the last one, the nurse noticed a glitch with my ekg. This then alerted the entire staff. The head doc did some evaluations on the door, and admitted me immediately to the cicu, with emergency surgery the next morning. Sauer all was said and done, i was told that i have a third degree cardiac block, meaning the bottom part of my heart doesn't beat the way it's supposed to. While i was in cicu before surgery, they had me on constant monitoring, and iI passed out very briefly, and the doc said my heart stopped being for 27 seconds. I didn't have a choice with mine, or any warning that it was coming, but, was very glad that iI have it!

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I have an ICD which is both a pacer/defib. I have no problems with mine and it has saved my life.