Starting my life at 21!

cnsky54RRT

New member
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.
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<br />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.
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<br />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.
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<br />John
 
Thank you for your input. It really is helping to ease my mind on things. To tell you the truth I'm just ready to get my new lungs. I've gotten to the point where I can't enjoy the little things in life because I'm to sick. I just hope that I get my new lungs, so it's not to late. I'm hoping to get presented to the board after talking to a social worker tomorrow at the Cleveland Clinic. I just hope once I get my tx that I start gaining weight. I already have g-tube and I'm still having a tough time gaining. Does weight come on fairly easy after surgery? And will my skin color turn back normal pinkish instead or a purple-ish grey-ish color? Besides being able to breathe, what are the biggest changes I will notice?
 
Thank you for your input. It really is helping to ease my mind on things. To tell you the truth I'm just ready to get my new lungs. I've gotten to the point where I can't enjoy the little things in life because I'm to sick. I just hope that I get my new lungs, so it's not to late. I'm hoping to get presented to the board after talking to a social worker tomorrow at the Cleveland Clinic. I just hope once I get my tx that I start gaining weight. I already have g-tube and I'm still having a tough time gaining. Does weight come on fairly easy after surgery? And will my skin color turn back normal pinkish instead or a purple-ish grey-ish color? Besides being able to breathe, what are the biggest changes I will notice?
 
Thank you for your input. It really is helping to ease my mind on things. To tell you the truth I'm just ready to get my new lungs. I've gotten to the point where I can't enjoy the little things in life because I'm to sick. I just hope that I get my new lungs, so it's not to late. I'm hoping to get presented to the board after talking to a social worker tomorrow at the Cleveland Clinic. I just hope once I get my tx that I start gaining weight. I already have g-tube and I'm still having a tough time gaining. Does weight come on fairly easy after surgery? And will my skin color turn back normal pinkish instead or a purple-ish grey-ish color? Besides being able to breathe, what are the biggest changes I will notice?
 

cnsky54RRT

New member
From what I have seen this month in my friend who received her new lungs, there is an immediate change in skin colour. Heather used to have a slightly gray tinge to her, and is now pink-cheeked and normal looking. The change was huge and sudden. Gaining weight is another thing. You may and you may not. It depends on the amount that your particular expression of CF has affected your digestion. If you have trouble absorbing food like some CFers, well, that will still be there post-transplant. However, with an air supply that you do not have to fight for you can now begin to exercise and be more physically active, and you can build body muscle up. You may never be a Schwartzenegger, but you could run a marathon like Lex did, ride a bicycle, go to the gym. Your horizon will suddenly be a lot broader! And on the other hand, when you stop burning so many calories with each breath, it may well translate into some more pounds on your frame. Whichever, your life will be turned around completely. Good luck in Cleveland!
 

cnsky54RRT

New member
From what I have seen this month in my friend who received her new lungs, there is an immediate change in skin colour. Heather used to have a slightly gray tinge to her, and is now pink-cheeked and normal looking. The change was huge and sudden. Gaining weight is another thing. You may and you may not. It depends on the amount that your particular expression of CF has affected your digestion. If you have trouble absorbing food like some CFers, well, that will still be there post-transplant. However, with an air supply that you do not have to fight for you can now begin to exercise and be more physically active, and you can build body muscle up. You may never be a Schwartzenegger, but you could run a marathon like Lex did, ride a bicycle, go to the gym. Your horizon will suddenly be a lot broader! And on the other hand, when you stop burning so many calories with each breath, it may well translate into some more pounds on your frame. Whichever, your life will be turned around completely. Good luck in Cleveland!
 

cnsky54RRT

New member
From what I have seen this month in my friend who received her new lungs, there is an immediate change in skin colour. Heather used to have a slightly gray tinge to her, and is now pink-cheeked and normal looking. The change was huge and sudden. Gaining weight is another thing. You may and you may not. It depends on the amount that your particular expression of CF has affected your digestion. If you have trouble absorbing food like some CFers, well, that will still be there post-transplant. However, with an air supply that you do not have to fight for you can now begin to exercise and be more physically active, and you can build body muscle up. You may never be a Schwartzenegger, but you could run a marathon like Lex did, ride a bicycle, go to the gym. Your horizon will suddenly be a lot broader! And on the other hand, when you stop burning so many calories with each breath, it may well translate into some more pounds on your frame. Whichever, your life will be turned around completely. Good luck in Cleveland!
 

mackenziesmom

New member
Jordan,
My son is 21-years-old and just received a double lung transplant. He is doing well and was on the vent for about 24 hours--that's all. He was not in the hospital when he got the call. In fact, he's only been hospitalized 3 times. From what I've seen so far, the operation is worth it. If you have any more questions, just send me a message.
joan
 

mackenziesmom

New member
Jordan,
My son is 21-years-old and just received a double lung transplant. He is doing well and was on the vent for about 24 hours--that's all. He was not in the hospital when he got the call. In fact, he's only been hospitalized 3 times. From what I've seen so far, the operation is worth it. If you have any more questions, just send me a message.
joan
 

mackenziesmom

New member
Jordan,
<br />My son is 21-years-old and just received a double lung transplant. He is doing well and was on the vent for about 24 hours--that's all. He was not in the hospital when he got the call. In fact, he's only been hospitalized 3 times. From what I've seen so far, the operation is worth it. If you have any more questions, just send me a message.
<br />joan
 

cnsky54RRT

New member
This is really great news! I'm glad it came about so quickly! Please keep us updated as he progresses, as we are all pulling for him...
 

cnsky54RRT

New member
This is really great news! I'm glad it came about so quickly! Please keep us updated as he progresses, as we are all pulling for him...
 

cnsky54RRT

New member
This is really great news! I'm glad it came about so quickly! Please keep us updated as he progresses, as we are all pulling for him...
 
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