Hey Jordan, I think you sound like you are almost there. I run vents for a living, so let me try and reassure you a bit. In a regular non- CF person, your diaphragm and chest muscles use about 5% of the oxygen you take in just in the breathing process. A non-CFer doesn't notice that little bit missing, but with CF every molecule counts, and due to the stiffening and malfunction of the lungs you are using more than the 5% with every breath. More effort to get less air is a double whammy. While on the vent you have to make no effort to breathe, the machine senses that you want to inhale and gives you a breath. I tell family members that the 5% oxygen that was needed to run the diaphragm is now available for healing elsewhere, giving the breathing muscles a rest.
On the endotracheal tube is a small balloon that is inflated to keep you from inhaling your own saliva and at the same time making sure that all the air from the vent stays inside your lungs. When you wake up and the tube is ready to come out, we deflate the balloon and the tube just slides out. If you were to pull the tube out by yourself with an inflated balloon you really bash your vocal cords. Sometimes that damages them to an extent that your voice is raspy for awhile until they heal, which can be quite a while. You are restrained so that you don't try to help us along. We want to make sure that you are breathing well on your own first. If you are still sedated and atop breathing after the tube comes out we have to put in a new one to protect you. You absolutely do NOT want to barf up some bile and inhale it into your new lungs. That makes a whole new set of problems for us in the ICU that we would rather avoid, such as new organisms in fresh lungs with an immune system that is on hold. Trust me, as soon as we can take out the tube safely we will.
You do not have to stay in the hospital to be called in. If you are that sick to be in there, they might hesitate to transplant you. There is a fine balance of being at just the right 'level' of illness to be ready - too healthy and they don't transplant, too sick and they don't do it either. Your described symptoms sound like you are right there and ready. I hope they list you after you trip tomorrow. And do not worry about Mr. Ventilator! It's nothing but a fancy computerized air pump, designed to sense your every breath effort and adjust flow to give you the air you need. Someone like me will be watching you carefully. When you are through this and walking and running and BREATHING with the new lungs, you will look back at your very short time on a breathing machine and wonder what the heck you were so worried about! Good luck in Cleveland! Any more question, just throw them out here today.
John
