Not Cushing's

The second test for Cushing's just came back negative. Also, the stress echo showed nothing other than he can't go very long without getting out of breath; blood pressure and heart rate were not elevated before he was too short of breath to continue the test.

A little over a week till his stay in the hospital, hopefully they'll be able to observe a spell there and find some other clues...

More tests ongoing

Blood tests from last week showed very slightly high value for Shawn's liver ALT, but just barely over the reference range.

Today he's having a stress echocardiogram to see how his heartrate and blood pressure respond to exercise. Next Tuesday he goes back to the cardiologist to go over the results. The cardiologist is also concerned about Cushing's and we'll be repeating the test for that.

He's switching to yet another bp medication. Also he went off the cyproheptadine and ranatadine and back on the special diet. He just stopped these meds Monday night and already the wheezy cough, belly ache, and muscle spasms are back, shortness of breath and flushing also worse.

On June 9, he'll be back in the hospital for an overnight EEG. The plan is to try to provoke a spell with alcohol and see what happens, also draw blood during the spell. Checking in to the hospital for happy hour... that should be fun! (But somehow I doubt they'll have drinks for Dave and I as well, maybe we should bring our own?)

All of these are ways of finding more evidence of a carcinoid and/or another explanation for the symptoms before contemplating the more risky surgery to take another look at the thymus.

Next Steps

The cardiologist wants to do two tests - a stress echo next Wednesday, and an EEG (not yet scheduled). Possibly we'll also be trying to provoke a spell (with alcohol) before the EEG to see what happens during the spell.

The endocrinologist fears that Shawn's liver is enlarged, he took some blood so hopefully will know more about that soon.

More shuffling around of medications, also about to go back on the low tryptophan diet.

Both doctors seem concerned about the severity of marks on Shawn's hips and legs - look like stretch marks but have gotten MUCH more pronounced then they used to be. The cardiologist said his initial impression was that it looks like Cushing's. I believe the endocrinologist at the Mayo said so as well but then followed that with "the test for that was negative so I wouldn't worry about it."

We'll be talking more with Shawn's doctor in the next few days, most likely once he gets the blood results back.

Doctor appointments tomorrow

I haven't posted much here for awhile, both because I've been insanely busy at work and because there's really nothing new to report yet. Hopefully we'll have a better idea of what happens next after tomorrow's doctor appointments. He'll be seeing both his endocrinologist and a cardiologist tomorrow. So stay tuned...

Springtime

The weather today is overcast and cool, but one look at my backyard
and you can see that spring is now in full bloom. This crabapple tree
only gets its chance to shine for a few short days, a week if we're
lucky, before the pink petals rain all over the backyard. In fact, they have already started...

Shawn's Back Home!

... and of course, so is his 'stuff'. But actually, he left lots in
storage at IU.
I expect I'll start seeing music instruments and guitar picks everywhere I look. And you know what - that's just fine with me - I'm so glad to have him home!