Jeff,

I'm glad that you''re doing well after the surgery. I totally understand your feeling that you had to be your own advocate in your care. I don't know what I would have done without my husband being my advocate and at times "getting in the face" of doctors and nurses simply because they want to "pigeon hole" you into their way of treating a procedure or illness. We have special "rare" illnesses and don't fit into their pigeon holes!

My surgery had to be through my breastbone because the thymoma was very large and attached to my lung sack and heart sack. I was placed on a morphine pump which monitors the amount of morphine you can use. Boy, every time I woke up I'd push that button because the pain was unbearable. The nurses finally said that I was using too much morphine (how can you do that?) so they took the pump away and must have placed me on a painkiller drip. I thought "you have your breastbone cracked open and see how you feel?).

Anyway as far as a patient advocate, after recovering from the surgery the neurologist wanted to send me to physical therapy. I don't think the doctor that performed the surgery wanted me sent to rehab that quickly but let the neuro make the decision. The neuro had diagonised me with MG and off I went. It didn't take a week before the SEVERE spasms of SPS started at which time the physical therapy doctor immediately diagnosed that I had SPS, they sent me back to the hospital for mestinon treatment. Thank heavens my husband spent the night in my room because he believes that they did not perform the proper procedure to do the treatment where you are suppose to get the mestinon at small dosages to see what your reaction will be, they just started giving it to me. It wasn't long before my lungs started to shut down and I was drowning in my own saliva and couldn't breathe. My lips were turning blue and my husband had them rush me to ICU where he was helping me to sit up and was using the equipment to suction my lungs all the while the neurologists were standing around wondering what to do. He eventually yelled at them to do something because his wife was dieing. If he had not been there I probably would have. I'm sorry but I'm sure I've told this story before, please bare with me my one brain cell only works parttime!

Again don't push your recovery. I believe that the easier you start the process the more successful you will be, but I'm not a doctor just a survivor. At least the surgery is over with!!!

Best of luck (as always),

Becky
Southern Bell