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Posted by Kristine on July 26, 2002 at 23:42:21:

Hello guys-
First of all you are All the most wonderful group of people, and feel God works in mysterious ways and am so thankful to have found such a great site.
Anyways, I tried to send this last night, but my puter was giving me problems. So, here we go on Thurs. I went in for EPS#5/Ablation#4-#1-was just a study, #2-was Bundle of His ablation, #3-complete a-v nodal removal, so they thought, which put me into full block so my pacer was then placed, #4-complete s-a nodal ablation-you would think further rhythm problems would be impossible, but no-from what I have been told what was done I should be a-v paced 100% of the time, but I still have something that conducts in that region on & off, so on Thurs. my EP, btw-he is the former head of EP and pacing @CC- so I really trust him-although he now leaves all the super ablations to CC. Right before he was getting ready and I was getting all hooked up I told him to make sure his office and notes from the procedure go to Dr. McCarthy, since I was now considering this amazing surgery you have all been blessed to receive.
He stated that this changed everything completely, that we should try to preserve as much of the hart as we can. He also told me that removing the rest of the a-v nodal tissue was strictly palliative care, because yes my rate would be controlled but my rhythm would still be atypical a. flutter, which would still leave me on blood thinners the rest of my life. He aso said usually a.flutter is very easy to tret. but of course my was not at all. He felt if Dr. McCarthy was willing, esp. since I am at the ripe ole age of 28, that the maze would be my best chance of treating my rhythm problems.So, he gave me a script for Lovenex-injectable blood thinner 2x-dayto prvent strokes. Coumadin was out, because I have a severe form of colitis that leaves me nutritionally dependent on IVs which also poses many problems in treating when you don't absorb like you should.
When I got home, CC was on answering machine, And Dr. McCarthy does not want to do the maze because of being high risk with all my other medical problems and recent open heart last Oct. My heart sunk, no pun intended, I called back out of complete desperation. I was then referred to Dr. Natalea(sp?) to see what he thinks. I am NOT ready to accept palliative care as my only choice. I called Dr. Natalea's office toady I was told I could not get into the end of Oct. so I asked to speak to his secretary who said the end of August, but after I told her my whole situation she stated his nurse was off today, but would have her call me first thing Monday to see how we can get this started much sooner, because I am NOT ready to accept palliative care as my only choice. I am praying and hoping and asking for your prayers, that maybe once a doc. sees me-the actual person, instead of just the many charts and records they will figure something out and maybe even recosider doing the maze!!!
I so appreciate all your support & encouragement, because if it wasn't for all of you I would have accepted the palliative treatment and lived with it, but now I can't do that. Thank you-I think I feel a need for a group hug here-(((())))
As Always my Love & Prayers are with you All-
--Kristine

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