Need some advice!

• by cottontop
• 2008-07-03 10:07:41
• General Posting
• 1120 views
• 8 comments

Hi, haven't logged in a couple of months. So I would like to say Hi to all of you! Hope Jesse, Smitty ,Pacergirl, Peter Nash and many more are still here. I need some advice. I have been having some more problems. For some time I haven't been able to walk to one roon to the other or even carry my laptop without getting chest pressure and then pain and feeling like someone has there hand around my throat. Been back for several test. Haven't found anything new. I already have Idoopathic Restrictive Cardiomyapathy, Conjestive heart failure, a bad mitral value with +2 regurations,now a leaking tricuspid valve( think from the lead wire ) they took out my pericaridal sac because of the fluid build up. Then I got the pacemaker for Sick Sinus Syndrone and one time to ER and Medtronic's Rep said that I was in the wrong mode. That I had developed heart block in the ventricle and changed the mode to DDDR ( what ever that means). Was doing better then this started about the last 3 or 4 months. Both my cardilogists didn't really find anything they already know .Then for a last resort did a holter moniter for 24 hours. It said that all heart rate was pacemaker oriented. Needless to say I had the report faxed to me in 2 days and never heard from a doctor till I called to make an appt.a couple of weeks later. He said yes you were very symptomatic. I could have told him that. But didn't see anything different. Great! Getting really fed up at this point. So we talked about getting a second opinion maybe Cleveland or Mayo. Then we talked about cardiac rehab for the 3rd time. Even thought I couldn't walk even to the bathroom without getting so much pressure and if I tryed to stay up chest pain so bad I would take a nitro, I am thinking I give up I will try it before I go elsewhere. Have been in rehab for 1 month. It has made a huge difference. I only can do the sit down Nu-Step but slowly I am reaping the benfits. Ok, now that you have the pifcture. My big thing is I just had a pacemaker check and ask the rep can you tell me how much I am pacing? She said all the time! What ? I only was pacing 42 in the atrial and 53 in the ventricle last check up. Ok I ask later on the same question. Got the same answer. Shocked and didn't like a dumb dumb ask any more questions. So went to rehab two days later and ask one of the nurses there and she looked at my records and and said yea that everytime I had been there I was pacing about 90 to 95 % each time. I don't understand why I wasn't told this and even more why am I using the pacer so much? When I did see my cardio he didn't say anything that I was. So now I am wanting answers and I thought you were the best group of people to get it from. Why would I be pacing so much when I year June 20,2007 I got the PM for heartrate dropping and pausing 4 seconds at a time? I hope someone can help me and do I need to see am EP and if so what do they do? Also my blood pressure has been dropping so low I was almost passing out when getting up so they took me off of my ACE inhibitor to see if that helped. Then the next week the arrythmia med. Ethmozine I have been taking for 18 yrs, they are not going to make it anymore. So I had to just stop it cold turkey after only having enough for 2 more days when the pharmacy called my doctor. This all just happened about 2 weeks ago. Now I am have SVC which I had before but where under control. They said that the pacemaker would take care of anything that changes from going off the medicine. My heart beats so heard most of the time and it feels like at times it is sucking in when it beats and really feels strange. Just episodes though. Then feels normal whatever that is. Please help!

Thank so much!

Amy