I had a sick visit clinic appointment today. Recently I have been more short of breath and have been having some lung pain. And since I am supposed to be starting the new drug Orkambi soon, I wanted to be sure I was in tip top shape. The first few weeks on it people can be more short of breath and tight and since that is normal for me, I don't want to make it any worse.
So Wednesday I will be going inpatient at MGH for the first time, for two weeks. Then when I get out I can start Orkambi and see if it works on me!
Also, I did a 24 hour urine collection last month to see how my kidneys are functioning. Well the place we used screwed everything up so I need to do it again. Clinic tried so hard to understand the results with no luck. And for some reason the place put down I only had 500 mLs of urine which is nothing when I know I had at least 2100 mLs since I looked before I dropped it off. So I get to do that again tomorrow so I can bring it with me when I am admitted and then MGH can handle it. He also mentioned that I might need to see a renal doctor after we get the results. But we are going to give Tobra another try which I like because my lungs always respond very well to it.