I had a CF clinic appointment Wednesday, and it went really well! I blew a 50% which is up from 32 when I was admitted to the hospital at the beginning of March. My oxygen sats are even setting at 95%. The doctor was very excited about my numbers. My lungs have felt a bit tight so the doctor listened and I had a small wheeze. So I am being put on a steroid inhaler to keep my asthma under control and out of my way! I even gained back all the weight I lost when I was real sick. 109 lbs and pretty happy lungs. Now I need to start working out so I can try and get my numbers to the mid 50's where I want them. I'm thinking about doing maybe some pulmonary therapy, but that is a conversation I have yet to have with my doctor. If any has opinion or expericnces about pulmonary therapy please feel free to share!
After that appointment was my ID doctor who had put me on the antibiotics originally. First off let me just say he is not my favorite person and I had only seen him once! My mom and I agree he should retire. The poor guy stresses me out. At teh appointment he forgot what he put me on and that he put me on that ALL together! but he thought I sounded good and so I got the ok to stop the meds. He said he would call critical care and let them know they care dc me. Well guess what?! He never did, critical care has tried contacting him twice and nothing. So I decided to just de-access myself. I had never done it but I had been taught. It feels nice to let my poor skin breathe! At this appointment he also forgot he ordered x-rays. After we reminded him he looked at the report he was given and it said they saw evidence or suspected (I can't remember exactly what it said ) of a pulmonary nodule. Thank goodness for CysticLife cause google scared the crap out of me with what it could be! So far every has said it was an isolated infection that was treatable and gone. So we are picking up the xrays and I am going to try and find a way to get in to see my CF doctor not on a clinic day, the poor man is always so busy and booked, so we can figure out what it is and what we are going to do.
For now I am not going to worry about that. I am going to enjoy life without IV's. Lately it seems to not last long so right now I'm living it up!
After that appointment was my ID doctor who had put me on the antibiotics originally. First off let me just say he is not my favorite person and I had only seen him once! My mom and I agree he should retire. The poor guy stresses me out. At teh appointment he forgot what he put me on and that he put me on that ALL together! but he thought I sounded good and so I got the ok to stop the meds. He said he would call critical care and let them know they care dc me. Well guess what?! He never did, critical care has tried contacting him twice and nothing. So I decided to just de-access myself. I had never done it but I had been taught. It feels nice to let my poor skin breathe! At this appointment he also forgot he ordered x-rays. After we reminded him he looked at the report he was given and it said they saw evidence or suspected (I can't remember exactly what it said ) of a pulmonary nodule. Thank goodness for CysticLife cause google scared the crap out of me with what it could be! So far every has said it was an isolated infection that was treatable and gone. So we are picking up the xrays and I am going to try and find a way to get in to see my CF doctor not on a clinic day, the poor man is always so busy and booked, so we can figure out what it is and what we are going to do.
For now I am not going to worry about that. I am going to enjoy life without IV's. Lately it seems to not last long so right now I'm living it up!
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