The good news is that I am home enjoying a Diet Coke. The bad news is that the PFT scores were ugly today. I am lucky to be at home. I have had a severe headache the past two nights which I attributed to changing types of inhaled antibiotics. I still don't really know if that was the cause but that should have been a sign to me. We will stop the inhaled antibiotics for now so the number of nebulizers will go down temporarily.
The IVs will also change which means the count starts over. Seven weeks of one drug does not count towards the count of two new drugs. One of them is every eight hours and the other is every twenty four hours. They come already mixed which is nice for me and a little more portable than my mixing station at my dining room table. One of them also comes with potential kidney problems so there will be more blood draws. The nurse will come before the drug and after the drug is administered once a week to ensure the health of my kidneys. The results tell the doctors whether or not to change the dose.
My weight also went down a little which can be accounted to my cooking and being a little more tired. I am going to do another round of Predisone which will likely help both my weight and the inflammation of my lungs. I am supposed to go do PFTs again in two weeks but the appointment was accidently made for next week. We decided to keep that appointment to make sure things are moving in the right direction next week and then go back again too.
A few months ago, I tried to make a list of the people actively "working" on my situation. I gave up when I hit 10 and I have now far surpassed that number. At one point today, five people were standing around us talking to my darling daughter. She was passing out Skittles to them. I am very thankful to my husband who met us to take her to lunch during my doctor visit. I am also very thankful to the kind valet man who found my cell phone.
Blessings,
Cindy
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