Besides eating as much as possible, and lots of paper and pens, if possible, take a small recorder with you and tape what is said to you about everything. It's easy to forget as when they talk, your mind is travling around wondering about this crappy disease. Then when you are home away from the prssure of treatments, you can replay the tape and even then maybe write some of the info on paper. You will be drinking a lot of water too, which we all do, so stock upon a few cases unless your tap water is good ithout some of the chlorine and others tastes in it.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here