Today I had an appointment with my Transplant Doctor. He is encouraging that my transplant is coming, although as doctors do, it's always tempered with the warnings of "but you never know". I believe him; he has to be right.
He answered all my questions. One lung not two. Left is first choice but they could do the right depending on circumstances. I don't care, just so long as I get one!
After that appointment I had to call my regular Pulmonologist to refill a prescription and I had some questions about oxygen so I asked to speak with his Respiratory Therapist who was kind enough to take the time to talk to me. After answering my questions, he made some very key points I wanted to share.
He explained that it's AIR that is not passing through my lungs properly, making it very difficult for me to breathe. I have been unable to describe what this feels like. He told me to tell people if they want to know what it feels like for me to breathe, try one of the following:
1. Layer 2-3 hand towels and cover your nose and mouth and try breathing for 5 minutes. No, really, try it.
2. Put a close pin on your nose and try to breathe through a straw (no cheating and letting any air in on the sides; tight seal).
3. I am moving air through my lungs at the same capacity as that of a small toddler. I am only using 35% of my capacity.
That really drove it home to me and helped me understand what was going on inside my own body.
That's what it feels like to have Idiopathic Bronchiolitis Obliterans!
He answered all my questions. One lung not two. Left is first choice but they could do the right depending on circumstances. I don't care, just so long as I get one!
After that appointment I had to call my regular Pulmonologist to refill a prescription and I had some questions about oxygen so I asked to speak with his Respiratory Therapist who was kind enough to take the time to talk to me. After answering my questions, he made some very key points I wanted to share.
He explained that it's AIR that is not passing through my lungs properly, making it very difficult for me to breathe. I have been unable to describe what this feels like. He told me to tell people if they want to know what it feels like for me to breathe, try one of the following:
1. Layer 2-3 hand towels and cover your nose and mouth and try breathing for 5 minutes. No, really, try it.
2. Put a close pin on your nose and try to breathe through a straw (no cheating and letting any air in on the sides; tight seal).
3. I am moving air through my lungs at the same capacity as that of a small toddler. I am only using 35% of my capacity.
That really drove it home to me and helped me understand what was going on inside my own body.
That's what it feels like to have Idiopathic Bronchiolitis Obliterans!
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