Scared and need advice

[Stefany75]

I am 35.  On July 9 of this year, I was implanted with a pacemaker and now am a card carrying member of the Pacemaker club.  The reason, complete or phase 4 heart block with bradycardia.  Before the implantation, I was monitoring my blood pressure on my own with a home monitor.  I am also a trained nurse.  I noticed that I was having palpitations, quite regularly, and my blood pressure was averaging 160/100 where it used to be 112/80.  My heart rate, resting, was averaging 100 bpm.  Here is my concern, bradycardia is too slow a heart rate (100 bpm is 30 bpm higher than it should be) and heart block means the heart stops.  Mine did, while being monitored for 30 days with holter, for 5.6 seconds.  I can say that I never felt it when it stopped.  
For two or three weeks after surgery, I felt great, now, back to high blood pressure, faster than normal heart rate and no heart block per pacemaker check.  I am worried that I am now stuck with a dual lead Biotronik pacemaker for no reason and that there has been a terrible mistake made.  The electrophysicist who implanted the pacemaker is now in California, I am in Arizona and the Cardiologist says that I am fine and that he is done with me.  
I have fought for 6 years to find out what is wrong with me, knowing that I am dying, being right, and still having no answers.  Does anyone else feel the same way or been through the same thing?  I feel like a "Mystery Diagnosis" show in the making.  I am in constant pain from my severely enlarged liver, have chronic migraines, chronic full body pain and dizzy spells that literally knock me out and cause excruciating pain in my neck.
Any ideas??

[Stefany75]

You are wrong.  You have helped me immensely and for that, I am so grateful.   One question, what do you mean by the pacemaker has to be removed at death?? Why??

I am going to take your advice and seek the advice of another cardiologist.  

Again, thank you for taking the time to respond to my post.  Have a wonderful Holiday.

[gmachris518]

Welcome to the club, I carry 3 cards, wear an ID bracelet, and live in constant fear that my defib/pacemaker is going to shock me for no reason at all.  I also don't like the idea that the defib/pacemaker has to be removed upon my death, since they never mentioned it prior to the surgery.

The defib/pacemaker is supposed to hold the BP at a constant, instead of allowing it to go up or down, yet my BP is all over the board.  I go from 79/47 to 190/102, and there is never an apparent reason for it.  I complained to my doctor and he took me off of one of my BP meds, which really confuses me, and it hasn't made a difference.

My doctors just smile and tell me to go live me life, but like you, I'm afraid to.  My defib/pacemaker is the size of a cell phone, and is located just under the skin, over my heart, which is uncomfortable, and now that the swelling has gone down, I can actually see the wires under the skin, because they stick up above the skin level.  I complained about the wires and the doctor just said that it was because I'm so thin, and not to worry about it.  It's hard not to worry when you have a constant reminder sticking up just under your skin.

In any event, I do understand how you feel, and I know that doesn't help you one tiny little bit.  However, if I were you, I would be seeking out a different cardiologist, and getting a second opinion.  I have the opinion of approximately 8 doctors and they all tell me to relax and go live my life.  I honestly think they have done what they know to do, and now they are leaving it up to God.

I hope the best for you.  I know I haven't been any help, but I hope it makes you feel a little better knowing you're not alone.