Saturday, February 16, 2008

Here we go again

I'm off to Texas this coming week for a second surgery. This surgeon is more "aggressive" than the first one and I expect that he'll remove half of my pituitary gland. I'm a bit nervous, but like most things medical I try to keep myself from thinking about it until it comes time.

My specialist prescribed Ketoconazole to halt my overworking adrenal glands, I flunked the growth hormone stimulation test, and I have cataracts on both eyes. I'll be happy to be off of the Ketoconazole and replacement steroids. Thyroid tests showed that T4 to T3 conversion isn't working, so there are two meds for thyroid replacement now. I'm a bit insulted that my thyroid has decided to gang up on me, on top of the panhypopituitarism.

Pfizer is working to get the growth hormone meds approved and I can't wait to start on it. So far the diabetes insipidus symptoms are somewhat manageable without medication, and I hopeit stays that way. I'm realllly sick of the constant pee breaks. If you have to think of where the bathrooms are before you make a trip to buy groceries or take your kids to the park, and you aren't pregnant, you have problems. Walking is difficult and I always wonder if I'll get shot looks for being lazy if I were to grab a motorized chair in the stores. I haven't done it yet. I'm too chicken. Instead I plod along and sweat through my clothes, my hair soaked. I don't know why I care more about what people think than how I feel.

Regarding surgery: If the tumor wasn't right up against the ICA and showing on my field vision tests, then I'd prefer a good ol' Bilateral Adrenalectomy. *sigh* Maybe radiation and a BLA are in my future, but not just yet.



Maria said...

Hi Lisa.

I have just read through your whole blog from day one. I was so pleased to get to the post-op positive outlook and then really sad to reach this point. My prayers are with you. I on a similar journey to you (tho thankfully no headaches!) and I'm about to start a blog about my journey too. I'll put a link to your blog.

I will come back soon to find out how you got on...


Anonymous said...

Hi my name is breanne and I have cushings syndrome/diease I say it like that because after have my adreanl gland and tumor removed 2 years ago 4/8/07 I am still showing symptoms of putitory being the source. Cushings sucks it robs you of your life and traps you in yourbody. My prays go out to you if you want contact me at I would love to hear from you.