pacemaking, etc. _Joanne

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Joanne: what was the situation that led to a pacemaker for . This has been discussed as a potential intervention for Z - not now but perhaps if things get worse. His HR fluctuates between 65 and 130 at rest. With activity it does not get any higher and in fact often just stays in the 90's - this of course is not perfect that he has no response. There are days when he is very exhausted and those days his HR will jump 30 beats just from laying down to a standing position - without even walking. I am sure this is all just signs of his dysautonomia worsening. That his HR can get that high at rest when he is on a beta blocker continuous infusion (labetalol) is odd in and of itself. I was just shocked that can maintain a heart rate of 12, 20, etc like you described and not need intervention. if I understand correctly her pace maker is not working so does she self correct or what do you do to get her heart rate to go back up. The night Sam died his heart rate dropped - something he had not done since infancy. I have always set our monitor limits very conservatively - 60 for the low HR. So as soon as it alarmed - for a rate of 58 - I actually called the paramedics. I have never called 911 and a HR of 50 is not bad but when I looked at him I just knew something was very wrong. Things went downhill and he had passed away 1 hour and 30 min later. It was too fast. I guess that is why the HRs you mentioned seem so alarming to me - and yet it sounds like the MDs are not sure if it is real? is that what the issue is? I wonder if a pacemaker would have helped Sam. of course we had no idea he would need one - he just never never never had bradycardia. But now i think about Z....I don't think there are good indications of needing to be paced but his variability is beginning to worry me. He has had 48 hour holters done and they show "exaggerated sinus arrhythmia" . I used to find comfort in the sinus rhythm but not sure I do now given Sam had sinus rhythm right before he progressed into asystole. What is this other monitor you talk about....it is worn for 30 days? We need to have a more thorough way to assess Z's cardiac physiology and the annual echoes don't seem to be the way to go. Sam needed 4 cardiac drips - his normal cvp was between 15 and 18 (way too high) and yet his echo showed a "perfect heart". Then why could he not even walk without developing a gallop and why did he need all those meds in order for his heart to compensate? Everyone agreed he had heart failure and it needed to be treated but no one seems to be able to say what was wrong....there must be a better way to assess hearts than this. Anne