2-4 weeks away

Hello,
I found this site about 2 weeks ago and have logged on just about every day. I can't believe all the helpful people on this site, you are all amazing and I appreciate all your feedback (and I haven't even posted yet!!!).
My father was diagnosed with a LBBB about 4 years ago. I was of course, hyper-sensitive about anything regarding my heart. . .so I decided to have an ECG about 3 years ago. Well, it turns out I also have the LBBB and a cardiomyopothy to go with it. I know I have had this most of my life, but undiagnosed. I have always known about a heart murmur, but the doctors always said "I would grow out of it". Well, I am happy to say that my dad has responded the the medication (Coreg and Ramipril) and he managed to get his Ejection Fraction under control (over 40% now).
I was not so lucky. In fact, mine got worse - currently 20%.
This is amazing considering I was 38, a 2nd degree blackbelt in Tae Kwon Do, play drums, ice hockey and am about as physical as one can be. I had ZERO symptoms. Doc says that I've done all of this with the risk of sudden death just a breath away. The doc looked at my test results, and then looked at me and would swear it was not the same person. I was not on any meds, not even asprin. Dont take vitamins either. Crazy.
I met with the Electrophysiologist on Monday, who basically answered all my questions about my Bi Venricular Pacemaker operation. I was very well informed thanks to all of you!! Although this is not an ideal situation, the ICD has an 80% chance of getting my heart beating normally again. I was introduced to the term CRT Cardiac Resyncronization Therapy for the first time. Scary stuff, but I guess it could help me prolong my life; hopefully for a LONG time (I have 2 young daughters 4 and 2 yrs).
Which brings me to my post.
The doctor who performs the operation is on vacation for 2 weeks. . . so I wont even know when he can schedule me for the operation until he returns. The waiting is the hardest part for sure, and now I am scared stiff of every blip, flutter and shortness of breath. I travel for my job, and I am scared to even go out of town right now. I go to sleep at night wondering if I am going to wake up.
Just wonderig if anyone else out there felt the same way prior to the procedure? If so, if you could tell me how you got through it that would help a great deal. If you could also tell me how you felt after the procedure, that would also be great. Given the situation, I am looking for any positives to get me through this.
Also, if there is anybody out there with my similar condition LBBB/Cardiomyopothy who is looking at (or has) a biventricular pacemaker drop me a line. I get the feeling that this condition is quite unique, so I feel pretty alone out here.

Thanks again to all of you, and I wish all you the best of luck.

2 Comments

good perspective, thanks

by drpod89 - 2009-07-09 09:07:36

Thanks Angelie and Patch for the quick posts. I can see what you mean, perhaps I am lucky to have time to prepare for this.
Patch, yes. . I have been seeing a Cardiologist for about 2 years now. Even got a second opinion before I went to see the Electro Physiologist. Both state that my BP is already so low (usually 92/67) that I dont have any room to move up my dosages to see if it will help me (like it helped my dad). Both recommend the Biventricular PM. You are also correct- they state that I am not at the immediate risk, and can wait 2-4 weeks for the procedure.
However, that was before I had the realization of "this is going to happen" which has triggered some lack of sleep and panic attacks (at night) and a perpetual fear that walks beside me with every step. I am trying to cope (and this website really helps) but I am guessing I am not much fun to be around right now.
I guess I am also worrying about telling my employer and "letting the cat out of the bag" to my co workers and 50+ employees who work for me. . was hard enough telling my wife and family. . . I can't imagine all the attention I might draw if I tell my company.

Patch, maybe I just need to read into your archive of jokes. . . I have to try to remember keep it light and not dwell on what I cannot control.

You're not alone

by Angelie - 2009-07-09 10:07:56

chances are someone in this club has exactly what you have. If they don't have your exact condition, I know for sure that people here have Bi-vent pacers with CRT therapy for other reasons.

doctors lingered the pacer option in front of me for about a year before my actual implant. As my other options quickly dwindled and the pacer seemed to become more and more real, I got on the internet and learned everything I could about them. I luckily found this site, which has been a God-send.

By the time my pacer was implanted, I knew fully what to expect and actually welcomed the procedure with a gracious heart. This place sure did play it's role in my easement of the transition before, AND afterwards.

It's normal to be antsy, and nervous about every little heart beat. I know you're not alone there either, because many of us here felt that way before our implants, and sometimes still do for some time afterwards. It takes a while for your body to adjust to the pacer/ICD. The whole ordeal is a learning process, and will be for quite some time.

I know you're anxious not knowing when your implant day will be, but consider it a blessing for some people here get emergent pacer/ICD implants which leaves them NO time to process it or prepare.

Just go into this thing knowing that you already have a bit of advantage, and a "one up" on those who got blindsighted with their pacers/ICD's. I know I'm so very thankful that I had a chance to "get ready".

Welcome, and keep up informed of your status,
Angelie

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