I had CF clinic today to follow up from when I was on IVs. My lung functions were up a little to 30% / .87L FEV1. We talked about this range being my new normal (baseline) for lung functions. Thanks virus, thanks a lot. I shared with him what was done at Barnes for my transplant appointment, some of which he already knew. I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri. They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. (more…)
CF Happens
Sometimes in life CF (Cystic Fibrosis) happens…pun intended
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Now that I am actually getting to the point of listing it is sinking in how sick I really am. I am sleeping about 12-15 hours a day and even more if I take a nap. You may say how is that possible or wonder why I am sleeping so much. My body is very worn out just from working to breathe and then there is the coughing on top of that. My body is sore from all the coughing I do. (more…)
CF Happens 