If only you knew

Hello

by HONEYBEEBUM - 2018-08-23 01:31:35

I had my pace maker in an emergency situation. I would have asked it to be place in an area that would be easier to have MRI s ,as it is implanted too high.

Melissa

I would,.........

by Ding - 2018-08-23 04:49:29

I deliberately did not sleep much the night before and went to bed at 4:00am so I would be sleepy for the procedureprocedure, that worked well as i had local anisphetic (can never spell that) and drifted off on the sedative they gave me. I would expect that terrible bleakness I experienced after, so that I didn't freak  me out so much as it did. I would loose a bit of weight to prep for the inactivity that followed for a few weeks. I would try and milk it after, in stead of trying so hard to pop back to normal again. I maybe sho uld have researched harder just in Case there had been an alternative option for me, but that would have just added reassurance cos there wasn't any optionoption, but now I keep wondering if I could have improved my electrics in some way. Mainly i would have expected it to be the big invasive impact it was, rather than just thinking it was  a quick little procedure. I should have been more realistic.

Emergency?

by AgentX86 - 2018-08-23 09:05:22

In an emergency, I'd just want them to save my life. I'll worry about understanding what happened later. Then research,  research, research. Web searches are very useful, in this case. Even Wikipedia is useful.

In my case, I'd known a pacemaker was in my future for at least a year but not for the reasons it happened. An episode of near syncope,  then a call from a heart monitoring center at 3:00AM telling me to get to an ER now, changed priorities,  quickly.

What I Wish I'd Known

by IAN MC - 2018-08-23 09:53:53

I don't  believe that the average EP has much knowledge of the differences in the features of various makes of pacemaker.     I don't believe that the lifestyle of the patient is sufficiently taken into account before deciding which PM to implant.

Although life is pretty good I do wish that I had known what I know now ( but when you are delivered to a hospital in an ambulance with a blue flashing light you don't have much time to do your research ! )

Ian

What I would do differently

by Saocalla - 2018-08-23 13:14:51

The main thing that I would have done different pre pacemaker is be a stronger advocate for my health. I grew up constantly being told by cardiologists that heart surgery is essential for me to live then that I'm completely fine and they don't know why we were ever concerned. I had gone into cardiac arrest at 8, recieved no treatment past resuscitation. I collapsed when 12 while running which they then gave me the diagnosis of CPVT a form of SADS insisting I would soon need an ICD. To later again be told there's nothing wrong with me. I constantly got presyncope from 14 till the day I recieved my pacemaker (23). Which I recieved as an emergency dual chamber pacemaker due to high vagal tone. My presyncope the entire time was my heart going into asystole. Multiple holter monitors showing a second degree heart block which then was insisted to just be an artifact on the monitors. 

I knew something wasn't right constantly having presyncope daily sometimes 20+ times a day. When you're younger and all the cardiologists you see become convinced you need immediate intervention to they changed their minds there's nothing wrong it's confusing / frustrating to say the least. Especially when they are limiting all your physical activity which was a huge part of my life. 

If I could do anything differently it would have been finding a cardiologist who believed my symptoms and cared about my quality of life sooner. Being so young I was just continuously told I'm just sensitive to fainting I'll grow out of it when the entire time my heart was stopping and limiting my quality of life. I'd suggest to anyone if you know or feel like something isn't right with your health / body and doctors are brushing you off to be an advocate for yourself and keep looking till you find the one who genuinely cares. As soon as I found that cardiologist everything changed and I haven't had any presyncope since my pacemaker. The difference I feel physically is amazing since I had just lived with it for so long I didn't know how much my body was compensating for my heart.

Hmmm I wonder..

by IAN MC - 2018-08-23 14:44:11

Welcome to the PM club Rosie.  I see that you are from the UK too.

I am sorry to read of the psychological and emotional traumas which you experienced but I really think that you are not typical.

I simply cannot identify with your last sentence though because  I am so glad that I WASN'T  aware of the PM club before my implant. I firmly believe that , although it can happen, the vast majority of PM  recipients sail through the whole process without any of the traumas which you experienced.   This site really is skewed towards people with problems I.M.H.O.

I do think that if I had read many of the posts on here first then it would have created a level of anxiety which the implant procedure doesn't deserve.

So if you are waiting for a PM ... don't worry, it really is a piece of cake for most people. I genuinely did find it to be a quick and simple procedure and no worse than going to the dentist and I was indeed full of energy after a few days.

Ian

I wish I'd known

by Tracey_E - 2018-08-23 15:57:40

Just how good I'd feel with it! I procrastinated until it was an emergency. In hindsight, I wish I'd just done it sooner, that my doctor had not waited for me to say I was ready. I slept away two years that I could have been feeling good. I thought it was some horrible thing that would ruin my life. It's a minor thing that doesn't affect my day to day life other than keeping me feeling good. 

To summarize...

by BOBTHOM - 2018-08-24 20:00:15

Seems from all the posts the three most important things are:

1)  Make sure your EP understands your lifestyle, how you exercise (what type and how much), your plans for children, and your overall activity level.  This will help him choose the right device and settings for you.

2) Have faith.  Most people don't have issues or there would be alot more members and posts out here.  When there are issues there are people on this forum who will galdly share their experiences so that you can get the proper care.

3) Give yourself the time to heal right after the surgery.  It can be 6 weeks or more but most are alot shorter, just no driving or heavy lifting for about 2 weeks.

Good luck with it.

to Summarize

by AgentX86 - 2018-08-25 20:36:18

Replacement #3: Listen to your EP. (You do have an EP, right?)

if I only knew

by dwelch - 2018-08-28 00:52:03

If I only knew how easy it is to live with a pacer....

If I only knew

by Mad heart - 2019-03-07 15:41:22

If I had Known how deceitful the cardiologist and the ep were