Today is the one year anniversary of Alex's BLA. We have no regrets, but it has been a very slow recovery. All things considered she is so much healthier now than she has been in years.
Current meds are:
Hydro~ 11.25mg @ 7:00am and 3.75mg @1:00pm
Fludro~ 1 pill @ 7:00am 1/2 at 1:00pm and 1/2 @ 5:00pm
Thermotabs~ 2 pills daily (to replace sodium in the heat)
Vyvance~ 30mg daily (for ADHD)
Levoxyl~ 75mcg daily
Nexium~ 40mg daily
Vitamin D~ once weekly
Adding the Vyvance and the Levoxyl have made an incredible difference. Alex's energy level is so much better now. She is up at 8:00am nearly every day. It may not sound like much but she now does her hair and makeup daily, wears clothes (not jammies) daily and leaves the house to do stuff every day. She is able to do several things in a single day, and she doesn't need a full day to recover if she leaves the house.
She has come so far. It used to be that she spent most days in bed. I had to force her to shower. She was in pain and crying several times a week. She told me several times that she just wanted to die. I would check on her when she was sleeping to see if she was still alive. We had to plan everything around her health.
The stretch marks are gone, the hump is nearly gone, the acne is gone. The headaches are infrequent, the GERD is still a problem but Nexium works, the other GI stuff is under control. She is no longer insulin resistant and her cholesterol is in normal range without meds. The Levoxyl has nearly normalized her periods; we are no longer considering uterine ablation. Weight loss has been slow, 35 pounds to date, but it does seem to be coming off again.
The most remarkable thing is that we are now leading a pretty normal life. It isn't just focused on Cushing's. I still foresee continued improvement. It doesn't seem to have stalled out. If this were "it" it would have still have been worth it without regrets. But, I think the future holds more positve changes to come.