Mark, I'm sorry you had to go through a crisis and met with some obstacles to getting care.

I hope you don't mind if I make a few suggestions.

First, the next time you believe you are having a crisis, dial 911. Do not have someone drive you in. Minutes can make the difference between life or death at that point.

I think you should be evaluated by a cardiologist. Yes, BP can go up higher during a crisis, but don't assume that. A high BP over a long period of time can lower kidney function.

You might want "I CAN'T TALK RIGHT NOW" in caps!! I can't believe that nurse thought you were yelling at her.

I would make the description of MG very simple. MG makes skeletal muscles weak and can cause me to not swallow, move, or breathe well or at all.

You might also want to retype the list with other basics, such as them needing to do O2 saturation, arterial blood gas, breathing tests (if able), etc., and leave a copy of that list in your chart at the hospital.

It's great that you got care, but take it easy now! It can take a long time to recover from a crisis and the drugs may deceptively make you think that you are stronger than you really are.

Anyone else have any other suggestions?


Annie