Thursday, January 28, 2010

A Recovery Update

I thought maybe I should post a 6 month post-op blog update so that when I look back I can see where we were at this point. Alex's current dose of hydro is 13.75mg at 7:00 am and 2.5 mg at 2:00 pm. She's taking 2.5 tabs of Florinef daily and 25 mg. of DHEA. She is still on several other meds, but those are the adrenal replacements.

The good: Total weight loss to date, 18 pounds. It comes off in fits and starts, it makes no sense, but anything is better than nothing! The acne is almost completely gone. The stretch marks are gone except a few high on her abdomen. The hump is still there, but smaller. Her face shape has changed, she is smaller around the rib cage and her shoulders are shrinking. She goes to bed around midnight, instead of 4:00am. As far as anxiety, the Rx for Xanax says it was filled in August, and it's still 3/4 full.

The less than good: The weight isn't coming off fast enough :-), she is tired, really, really, tired, all of the time. She has a headache much of the time (not the killer bad ones from before). Her GI stuff is still not great; it comes and goes (pun intended). She still needs Nexium to control the reflux. She still doesn't feel "well enough" to do a full load of school work. Her memory is poor, and so is her ability to focus/concentrate.

I think that about covers it.

Tuesday, January 26, 2010

San Francisco

Alex and I are going to S.F. on Thursday night so that we can meet two future BLAer's. Michelle will be flying in from LA for her pre op (surgery in early Feb.) and Lisa will be flying in from Washington for her first meeting with Dr. Duh. I'm excited that we have helped (re)introduce a great surgeon for those on the West Coast in need of adrenal surgery. We are all getting together for breakfast on Friday morning before their appointments; it should be fun!

Monday, January 25, 2010


Alex did the first months cycle of progesterone. Nothing changed. Using the progesterone for 14 days did seem to mess with the balance of her hydro/fludro, which was not the least bit helpful. Her period was supposed to start within a few days of stopping the progesterone; it didn't start till 10 days later. Her pain and flow were supposed to be lessened: they were the same. The doctor says try another one month cycle and see how it works before we change things up again. So, we are back to trying to be patient.

The pediatrician changed the ADHD med from Ritalin to Vyvance. I'm picking up the script today and Alex will be giving it a try. I'm crossing my fingers.

Saturday, January 9, 2010

MRI Results

The results are in from the MRI last month, and the comments are less than interesting.

Dr. K's office called and said "He says there is no obvious tumor or disease". That was it. I had requested the MRI on disk and written copies of the radiology report and surgeon's report. I explained to the person on the phone that I hadn't received these things, and when pressured she agreed to fax me the two written items. The fax came through and sure enough that was the entirety of Dr. K's comments. The radiology report basically said the same thing, with a nice note saying that they had forgotten to use the dynamic protocol and would suggest they do use it next time. For the record? They "forgot" last year as well and made the same recommendation then. Jeez.

Oh, well, I think we are just not going to worry about it. Obviously there is no target worth going after at this point as far as Dr. K is concerned. Once I get the disk I'm sure Dr. McC would read it for me, but I don't think there's much point. Until next year this is going on the back burner.