Monday, August 24, 2015

Hospital Time!

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.

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