Hello

Hi to everyone in the pacemaker club!! I am a new member but have been pouring over the great information I came across on this site for a couple weeks now. I do not have a pacemaker, yet, but Cardio Dr. said that is the next step. Like with any unknown - I'm really nervous about this. This is a forever step - no going back. I will tell you why I have ended up with this stage of my life and I will try to make it short...
I have 'bouts of A-Fib since the early 1980's - told I had Mitral Valve Prolapse and the Syndrome accompanying it.
Also stricken with panic attacks and Tachycardia from 1998 to 2005. There was nothing that would help. I tried it all - but came across a medical procedure in 2005 called the Cox Maze. At this point I was willing to try it - quality of life at that time was very bad. The procedure worked! No more Tachycardia!! It was truly a life saver! Also during these years I was also dealing with breast cancer, chemo, and radiation. I am grateful to say I will be a 15 year survivor in April!! YEAH!!
But I still deal with A-Fib and now have been told that Mitral Valve Prolapse had been "mis-diagnosed" in the '80's due to the technology used at that time. Ok...now what!!! All these years I blamed A-Fib on my "mitral valve!" NOW I have been told that I have Sick Sinus Syndrome with atrial A-Fib and Bradycardia. I guess that is why I feel so tired and winded all the time! I did get a second opinion and the diagnosis was the same. Ablation can not be done so I am on Flecainide. Which is the only medicine they could give me since I have a low heart rate (40's - 60) and Cardio Dr. put me on a very low dose of a beta-blocker.
I had an appointment to talk to Cardio about pacemaker and canceled it - then made another one in April. I am just scared of the unknown. I hear all the good pro's from all you great people which helps - but just don't know how this will feel in me. I HATE electrical shocks (you know the kind you get in the Winter) and I would like some feedback on - do you feel these mini shocks in your chest or heart???? Also have a 17 day Transatlantic cruise we schedule starting end of Sept 2013. I know I could get help in port if needed but 10 days of the 17 is actually out to sea! I don't know how soon the Cardio Dr. can even put in a pacemaker so I won't know how I will feel if it is 4 months out. Plus we have really long air flights. I know people have issues with the settings and I would not want to be on ship if settings could go haywire.
Anyway - thanks for reading this long message and again - you all are fantastic! I am so thankful I came across this site!! I appreciate any input.
I will leave you with a thought for today:
"Scars remind us where we have been - they don't have to dictate where we go." (heard this on TV.)
Thanks,
juju

4 Comments

Hi there

by Selwyn - 2013-03-19 07:03:25

Welcome, juju.
There is safety in numbers! So many club members. So many are active and leading healthy lives
.
The vast majority of pacemaker insertions are straight forward, in and out of hospital in less than 24 hours. I was riding my bicycle within 48 hours, a good 10 miles.I do remember having to stay overnight in hospital, and getting up next day, having a walk round the hospital to buy a newspaper, as the main problem is boredom!

You certainly cannot feel the pacing taking place under normal circumstances, otherwise we would all be twitching!

Yesterday, I swam 90 lengths. My Flecainide dose is 200mg daily, to help stop my AF. The club is full of active people ( try following some of the discussion on exercise). It is not about what you cannot do, rather what you can do.

If you have sick sinus syndrome and sufficient slowing of your heart for concern, or symptoms, then the quality and longevity of your life will improve with a PM.

I've been all over the world with my PM, on long haul flights - it is always nice to know you are going to wake up ! A cruise will always have medical facilities on board. Do make sure your medical insurance is undated though. A cruise- should be 'water off a ducks back', if you see what I mean?

Similar

by Shepheart - 2013-03-19 07:03:45

Hi juju,

I was diagnosed with tachybrady, fast/slow, also called sick sinus syndrome. I have Afib that comes and goes (paroxysmal) I got my pacemaker about 5 months ago. I had a few issues at first but now I am doing fairly well. I am in my late 50's and have a physically demanding job. Right now I am taking 2.5 mg of bisoprolol per day and warfarin. In the last 3 months the % of Afib has dropped from 11 to 4. So I am pleased with the progress. Once you have a few months of the pm you should not have to worry about travel. My pm is pacing my atrium about 90% of the time and it feel normal, no shocking sensation. Hope this helps.

Support

by juju - 2013-03-19 08:03:58

Thank you for the great support Selwyn! Good to not feel the pacing - I definately would not want to "twitch!" ha
Thank you also for the insurance update. I will definately do that.
Hopefully with a PM, my Flecainide dose can be raised which may help control the A-Fib more. I am only on 50 MG.
Thanks again!

Hi Juju

by Jax - 2013-03-20 01:03:56

I have had a pm for a yr now. You don't even know its there. It's like wearing a hat. Some people have problems with settings -- I did not. I don't think the pm causes shocks -- I believe that's a CRT that can cause shocks -- I'm told most people don't have a problem.
So relax--- you can cruise , fly -- I find few limitations.
Only in the very beginning you'll have to be careful -- after that piece of cake.

You know you're wired when...

You have an excuse for gaining an extra ounce or two.

Member Quotes

Today I explained everything to my doctor, he set my lower rate back to 80 and I felt an immediate improvement.