I'm worse than I was before I even had a pacemaker

I had a blackout on October 28th 2015, my 23rd birthday and the worst birthday ever!! I have only ever fainted twice in my entire life. Once two years ago when they discovered I had an irregular ECG and the second on my birthday. Other than on these two occasions I felt perfectly fine and had no health problems what so ever, growing up I had a good immune system too. Following my second blackout that I've ever had I was admitted to hospital due to having a very low heart rate and low Bp.. Little did I know that I was going to be told I couldn't leave the hospital without a pacemaker! This was the ultimate shock of a lifetime for me, you never think it's going to be you but when it is you want the floor to swallow you up and never bring you back. I was very reluctant to the pacemaker surgery and refused initially but I was told it had to be done and my family thought it was for the best.. After spending two weeks being monitored in hospital I was sick of it and just wanted to go home so I agreed to the surgery, grudging it.. Despite being told the procedure would take no longer than 30 minutes I was not only undergoing surgery 2.5 hours later but crying the entire time because I could feel everything apart from the cutting open of my skin where the local anaesthetic was injected. I could smell my skin burning with the incision at the start of the procedure when I was allegedly "sedated" the sedation DID NOT WORK ON ME, and I could feel it all inside me right through to where the pacemaker was being forced on to my chest, it was agonising and I was screeching but they continued on as if they didn't even care while I was crying for 2.5 hours throughout the whole procedure. After all that I feel 10 times worse, I have Afib which I had never even experienced before the surgery and have a big nasty keloid scar to go with the shooting pains where the pacemaker was inserted. I still can't sleep properly and the Meds they've tried on me don't even work. I feel so helpless and have no clue what to do because even the consultants don't understand why I have this rare case let alone myself. The healing time I was told would be 4 weeks and here I am 12 weeks later feeling worse than I did 4 weeks after the op when I couldn't even move my left arm when I was supposed to be fully recovered. I honestly don't think anybody should go for this surgery unless they're on their death bed or are a lot elderly in age and seriously require the pacemaker! BIGGEST REGRET OF MY LIFE 😫

2 Comments

random thoughts

by Tracey_E - 2016-02-04 08:02:04

First of all, I'm sorry you've had such a rough time of it. It's likely little comfort, but your experience is NOT normal.

The dr should be shot for not doing anything about the sedation.

Something serious must have been going on if they kept you in the hospital for two weeks, more than just passing out once. They don't keep us in the hospital for nothing, and there are requirements before insurance will cover a pacemaker. How low was your rate? Do you know if it's sinus dysfunction or av block?

There are treatments for keloid, ask about it. They may not get rid of it but they can lessen it. Also, scars tend to improve over time. It's taken mine up to a year to get white and flatten out, but they eventually do.

Are the meds for afib? Beta blockers can take a min of 4-6 weeks to start to work, longer than that to stop feeling the side effects. It can also take a few tries to find the right mix. The first one I was on didn't work for me but the second did, then it took a few months to get the dosage right. Long process,but it worked in the end. They can ablate afib if the meds don't work, or if you don't tolerate the meds.

See if there's any chance the atrial lead is causing the afib. Probably not,but it's worth investigating.

Let me preface my last thought by saying I got my first one at 27, so I've been in your shoes. It's ok to be angry. It's ok to resent needing the pacer at a young age. It's ok to mourn when our peers are healthy and active and we've stuck on the cardiac floor with people 3x and 4x our age. However, there comes a time we have to suck it up, accept it, and move on. A pity party never solved anything, and attitude has a LOT to do with how quickly we recover. That's a proven fact. Anger and resentment and negativity make us sicker. Focus that energy on healing.

Be proactive. Learn as much as you can about your condition. Write down your questions when you see your doctors. Take someone with you for back up and a second set of ears to hear what they tell you. Don't be shy about pushing when what they are trying doesn't work. If you aren't getting results from one doctor, find another one. If office staff gives you the runaround and brushes you off, push to talk to the doctor. Don't accept not feeling your best, and don't let resentment get the best of you. I know it sounds trite, but there are blessings in everything and we need to look on the bright side. One day you will look back and this will be a mere bump in the road. It is that way for me. It seemed awful at the time but looking back, it was just a few bad months followed by a lot of great years. I got my 5th pacer this week. I'm healthy and active, no one looks at me and sees a heart patient. You'll get there too.

Ditto

by Sue H. - 2016-02-05 03:02:33

Agree with Tracey's comments 100%. If your present Dr and their office gives you no satisfaction, time for a change!!

All your feelings are normal but don't let them run your life. You were given a second chance with a pacemaker and there will be a time when you look at it as the real life saver it really is.

It is your internal guardian angel watching your heart so you don't have to........believe me when I say there will come a day when you forget you have it.

Best wishes to you and hopefully you'll feel better soon.

You know you're wired when...

Bad hair days can be blamed on your device shorting out.

Member Quotes

I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.