Another newbie

Hi all!  I came across this forum while Googling for info on Pacemakers. I am tentatively scheduled to get my PM 7/8/16.  While I am nervous about the whole thing, reading the posts on this forum has been reassuring (for the most part!).

Do you all have any advice on things you wish you knew to ask prior to your procedure? 

My story: About 10 months ago it was discovered that several family members (including me) have genetic long QT syndrome.  ECG showed slightly prolonged QT interval and mild bradycardia (resting HR in the mid-high 50's), however stress test showed extreme prolongation and PVC's as heart rate increased.  Was put on beta blockers to keep heart rate in check but it exacerbated the bradycardia situation.  Even on minimal dose of Nadalol resting HR dropped to mid-high 40's.

Then a few weeks ago I had an incident while driving where the right side of my face went slack and the limbs on that side got heavy.  When I tried to speak to my daughter I felt like I was drunk-talking, having to try very hard to find and pronounce my words....very scary.  I pulled over ASAP but the symptoms cleared up within minutes.  During the week following the incident my resting heart rate dropped to the low 40's and I felt extremely fatigued. 

Went to the doctor a few days after the incident and my BP was 90/50 (they actually said they were guessing at the bottom number because they could barely pick it up) and my HR in the office was low 40's.  Sent me home on a 24 Holter.  Results showed HR going into the 30's at some points even during the day while I was at work and moving around.  My GP felt that the symptoms were probably caused by a drop in HR/BP resulting in low blood flow to the brain and it resolved quickly because HR came back up. 

I had a similar incident about 2 years ago with the heaviness/weakness on the right side and ended up in the hospital to be checked for stroke, but they found no issues and called it a TIA at that time. 

So my GP had me contact my Cardiologist who in turn sent me to an EP to be evaluated for a PM.  He "strongly recommends" I get this done.  I was initially resistant to the idea, but the more I read the more I can't seem to justify not taking his advice.  As I was waiting for my appointments I kept worrying that one morning I would just not wake up and my daughter would be the one to find me.  And that is a chance I just can't take. 

As I look back on my life prior to all this testing I realize that I have always had issues with light headedness/dizziness and fatigue and I have experienced weird heart flutters and thumps that I now know were probably PVC's or other arrythmias.  These were just normal to me I guess and I didn't realize that maybe everyone doesn't feel this way....lol. I am 40 years old now and I hope to get quite a bit older, so bring on the pacemaker! 

Thanks for listening,

Sara

 

3 Comments

PM Will Help

by Artist - 2016-06-17 00:33:20

A PM will definitely help your low heart rate.  They gave me what is called a twilight anesthetic and I felt no pain during the procedure.  The most difficult part for me was the requirement to lie flat on my back the entire night following surgery. That meant the dreaded bed pan routine.  I found myself wishing I had a family member bring a soft foam bed insert to take some of the pressjre off my back.  Post op restrictions vary alot between the different doctors.  I was driving in two days, could not lift more than 5lbs. for two weeks, more than 10 lbs for 30 days, or raise the arm on the pm side above shoulder level for 30 days.  Your hospital discharge should include post op instructions, if not, ask for them.  You should feel alot better once your Bradycardia is controlled.  It will take some time for your incision to heal and emotionally adjust to living with a PM.  After awhile you'll forget it is there most of the time.  As a gereral rule, ask for a copy of any reports generated like pacemaker interrogation reports, settings etc. We are fortunate to have this high tech help improving our quality of life.  You'll be fine and have come to the right place to share your story and get support and information.  Best wishes.

LQT and ICD?

by AJ1332 - 2016-06-17 15:57:52

hi Saratoga:

I'm sure your cardio is on top of this, but since you have LQT and symptomatic brady, I'm wondering if you want to check with your docs about their rationale for choosing a PM over an PM/ICD placement. I also have both LQT and symptomatic brady/low BP (with numbers similar to your's). My cardio said an ICD was "overkill" for me (I'm not wild about his choice of words :), but it was good to know his rationale. I didn't want an ICD particularly, but what I did want was peace of mind that he'd at least considered that option for me and had a good reason for choosing a PM instead. He did, so I'm more accepting of the PM. You might want to check that info for you too?

My PM is doing its job well with the rating holding off the brady. I'm feeling better in that regard, so I hope you do too.

Hope the procedure goes well. AJ

thanks for the input!

by SaraToga - 2016-06-18 21:51:34

Artist - Thank you for the tips!  I have never had to do the bed pan before...I'm not looking forward to that!  Hopefully I won't have performance anxiety...lol.  I think the thought of having this extra foreign thing in my body forever is what is kind of hard to come to grips with, but I know I will adjust.

AJ - My EP said basically the same thing about an ICD, though he didn't use that poor choice of words...lol  Basically he said that it was more than what I need because I have so far not had any incidents caused by the long QT and there is no history in my family of sudden cardiac death.  They are really just treating for the brady with the PM and we'll then be able to use the beta blockers again for QT symptom prevention. 

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