Friday, February 21, 2014

7 week post op update

A family member, 2nd cousin, asked how I was doing. I decided to share it here for all to see. 

"Thank you for asking! I'm seven weeks post op.  I'm doing better. The surgical sites on my waistline on my back are finally healed up. The surgeon only made six small incisions to remove the adrenal glands. That part is really great. I'm happy about the surgery.

The challenge comes in finding a balance in all of the hormones produced by the pituitary gland (8 of them directly and 4-6 more indirectly through other organs) plus the 5-6 produced by the adrenal glands (cortisol, aldosterone, renin, Dheas). So I'm experimenting with medicine increases and decreases based on symptoms that prompt me to go get lab results. I'm tired with a headache across my eyebrows. Is that low thyroid? High thyroid? Low growth hormone measured through the liver in IGF-1? Maybe it's the renin. What's renin? I just got it straight last week! It's high so that means add more, not less!  I just have to laugh about it. It's a funny little science project game I get to play. I'm scientist, doctor, pharmacist, and patient, all at the same time. It can be a long process -- many months --and overwhelming but I'm managing and hopeful now. Before the adrenals were removed, my body and mind were in constant battle; without it, I finally feel at peace. I can come up for air and return to doing things I really enjoy, like genealogy and learning about our family past and present.

So, to answer your original question, I'm doing quite well."

What Happens after Diagnosis

I wanted to share something I recently wrote to a mom asking questions about her 20-year-old son's future as an undiagnosed
Cushie. She said she has an appt to see the endo, but wanted to ask a group and me what we thought.

"I smiled when you said we know more than the docs. It's true. You'd never get 6 docs to respond in three short hours.

After seven active years of online searching and bonding, I've watched a lot of Cushies' journey. I met many in person, spoken to many on the phone, and corresponded with even more online. There is no board game that some follow here and some do this. Every Cushie has different symptoms, different presentation, different surgeries, reaction to meds, etc. Some are cured with one pit surgery; some five. Some pit tumors are inoperable so people try medication that rarely works. Many end up with a BLA like me and do very well. Sometimes these pesky tumors that have been hiding show up finally to wave hi. You will not know your son's until it happens, just like life :)."