I apologize for the gap in my blog posts here. I did not take my computer to Bethesda. But never fear - I made it there and back without any problems. Given the weather around the country these days, that's quite a feat.
I got to the NIH Clinical Center on Tuesday afternoon. I'm starting to learn the routine now and breezed through admissions then went up to the 5th floor north west - my home away from home. Alot of the nurses remembered me and we caught up with my condition. They commented on how much different I looked from the last time I was there. I had lost 17 pounds in the time that I was away, but I can't tell much of a difference when I look in the mirror. My favorite nurse Casey got me checked in and all set up. We did vitals and went over the jammed packed schedule for my next two days.
On Wednesday AM I was greeted at 5:30 by a phlebotomist and her cart of supplies ready to separate me from about a gallon of my blood. What a way to start the day, huh? Then we started my 24 hour "pee in a jug" test at 6, sparing a little pee for other tests down in the lab. Later in the morning I took the test to see if I was still technically a diabetic. You have to draw a blood sample, then drink this glucose liquid (I chose orange flavored this time. Cola flavored isn't very good and those are the only two choices.). Additional blood samples are taken at 60, 90 and 120 minutes after. Then they compare all the samples to the baseline to see how well you metabolize the glucose. I am pleased to report that I no longer fall under the diabetic range! How awesome is that?
The best part of the morning was meeting with my gaggle. My biggest complaint since being on Muffy is my utter and complete loss of appetite, and being physically exhausted all the time. Of course not eating doesn't help my energy level either. Dr. Nieman, the head Cushings doctor-hoo-ha, noted almost immediately that it was probably the early onset of adrenal insufficiency. Muffy was doing too good a job and blocking too much of the cortisol. So we decided to cut back my dose a bit to see if that helps me feel human again. I really hope so. Having an upset stomach 24/7 is not fun. Not fun at all. Especially for an eater like me!
After meeting with my gaggle, I was off to the radiology department for a trans-vaginal ultra sound (enough said) and an EKG. All went relatively smoothly and by mid-afternoon, the hard stuff was done for the day. Of course I was still peeing in my jug. That goes without saying.
Thursday morning began with a visit from the phlebotomist, and the end to my jug-peeing thank goodness. We started a glycemic profile test that would run all day. They take blood right before meals, and then 1 1/2 hours after. Then one sample at bedtime just for good measure. I also had a full body DEXA scan and a long meeting with my doctor, Dr.Neary, to complete a bunch of study requirements and go over the schedule for the coming months. I also met with a dietitian, to help me work out how to get the nutrition I need when I don't want to eat anything, and my physical therapist. He showed me a few exercises to do while I get my physical therapy here (remember that nutty back surgery in October? I never got around to getting the p/t lined up after it) scheduled. They will also help with the leg weakness from the Cushings.
Friday morning after a trip to the pharmacy to pick up a huge bag of Muffy and two other prescriptions, I was ready to be discharged. So what did we learn over these fun filled 2 days? Well, in general I'm doing great. Off all but one blood pressure medication, and that one we cut in half. Not diabetic anymore, and cholesterol down. My body is still tolerating Muffy just fine. We did uncover a little thyroid problem, so I'm taking a bit of medication for that. In the big scheme of things, the doctors were not very concerned about it. I am losing weight too fast. Averaging 2 lbs a week. They'd rather see 1 lb a week. But that's going to be hard if I don't want to eat. Hopefully things will come together here in the next few weeks.
So there you have it. A travelogue from my journey to NIH. I'm sure you are all wishing you could share the fun, but I'm saving it all for myself!
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