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January 6, 2010 - First appointment at heart failure clinic

Good Morning Everyone!

Your prayers were once again MASSIVELY answered by God... he and Elise had an incredibly wonderful experience at the heart failure/ transplant clinic. They said that every single person - from the receptionist, to the nurses, the case coordinators, to the doctors could not have been more kind or caring. He said that he has never been in any health care setting where he felt more attention or more confident in the knowledge and abilities of the personnel. It was hugely comforting to them both!

The bottom line is that his heart muscle biopsy showed that the heart is good and they are not considering a transplant at this time. Instead, they will move forward with stripping the sac around the heart off (i.e. pericardectomy). Before that, they might do a procedure called a mediastinoscopy, which is minimally invasive and would allow them to do a biopsy of the sac itself before removing it. From Elise's visit notes (which were AWESOME!), it seems that they would do that to get a definite reason for the cause of this so that they'd understand his overall condition better. Although this condition could have been caused by a virus that attacked his heart, or could have been caused by procedures done in the past, the doctor feels that's unlikely and wants to pursue some autoimmune causes. There was no mention of this procedure aggravating his rhythm problems as I had feared! Greg said it was very comforting because for the first time, he had a doctor sit for almost two hours and discuss his whole, overall situation and they are trying to put the pieces together. Unfortunately, the doctor said that he has more than the usual number of problems, so they're not sure that they'll be able to put an accurate label on the whole thing, but at least they're trying!

Dr. May will consult with one of the cardiothoracic surgeons of the group, and they will come back with a "next step plan" soon. He does have an appointment in this clinic in two weeks, but will likely hear from the surgeon before that. Surgery (either the mediastinoscopy or the big open heart) will be planned some time in the near future. In the meantime, they've put him on a fluid restriction in an effort to see if they can get him off some of the diuretics he's now taking.

Thank you for your prayers and encouragement! Greg said that he feels hopeful for the first time in a while and was laughing on the phone, which was music to my ears. Elise was getting ready to paint with her new watercolor set! Life sounded normal and good! Praise God!!!

We'll let you know when there are any updates! Again, thank you!


Greg's mom

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