Thursday, October 1, 2015

Follow Up Appointment

Today I had my follow up appointment at MGH after my 2 weeks in house for IV antibiotics.  Today's appointment was actually my 3 month from last appointment but I squeezed in a sick visit and hospital stay lol.

All looked good.  My FEV1 was up to 1.09L 37% so back to baseline.  My weight was down another few pounds but I lost 3 pounds in the hospital and 2 pounds visiting my family which will all come back on once I get back into my routine here at home.

I got to meet with the endo and I LOVE HER.  So much better than the one at Children's who was a bitch to me.  She was super sweet and sat with me for close to an hour going over things.  I had a 3 month log for her to review and she said right now I don't need insulin but to keep an eye on highs.  We may throw a short acting one in before certain meals if I know it will cause me to spike and crash.  She also wants me to get a dexascan (bone density) done before my next appointment.  I swore I had one 6 months after my hysterectomy but it is only showing one right before.  And at that time I was slightly below normal for my density.  So she is also having me start on an estrogen patch to help with some issues and to be sure that my bones don't get too weak.

I am scheduled to start Orkambi on October 13th and I am scared!  Check out my guest post on the CFF blog to see why!  That and the side effects can be brutal the first few weeks.  I am not looking forward to them and hoping I don't get them.  But the side effects are shortness of breath and chest tightness which is my thing.

I got my flu shot today as well.  Hello sore arm for a week lol!

I was also told that my sputum culture showed MAC (Mycobacterium avium complex).  Right now I am not worried.  One positive does not mean I have MAC in there.  Especially since I feel good and I responded to the IV antibiotics, which would have done nothing for a MAC flare up.  So I gave another culture today and we will see what it grows.  Most likely it is a false positive which is very common for it.  But if I grow it again then we will have to reexamine what to do.  Since I feel good it could just be a monitoring thing.  Which would be way better than 12+ months of IV antibiotics!!!

Other than that things are going well.  I see transplant clinic tomorrow and they can tell me to come back in 6 months again.  I may see if I can do yearly.  Seems silly when I feel good to be there twice a year.  But who knows.....

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