Thursday, December 17, 2009

REOCCURRENCE: Hard to know for sure

I wanted to take a minute to update y'all on my progress post op. There has been so much that happened.

First off, the best thing I can say is that I am happy that I am 6 months post-op. I survived 180 days of uncertainty. Many days, I didn't think I could do it. It PAINED me more than you could ever know for me to move through my days and nights, not knowing what will happen to me (and my family), and not being able to plan. I broke a lot of plans, I missed a few birthdays, and I didn't DO as I normally DO. But I tried. And for 2009, that has to be good enough.

I thank my husband, in-laws, and my mom and dad for helping me with the baby and even taking pretty good care of me.

You always know that I tell patients, regardless of their disease(s) but especially Cushies, to partner with their doctors in their health care. That's good to say and all, but I have an example today, so I wanted to share it with you. Hopefully, it will demonstrate HOW I communicate with my doctors (descriptive, detailed). I have been lucky to surround myself with a knowledgable and responsive and caring team of doctors (and their staff!), and I hope the very same for you.

Here is the email that I sent my endocrinologists in two different towns in an effort to keep them in the loop as far as my testing and planning. It serves as a quick recap.

Dear Drs. XX and XY,

Per our discussions at my appointments earlier this month, I committed myself to testing for Cushing's last week. I tested from Saturday to Sunday, and Monday to Wednesday. Those results should be on the way to your office by now. I ask that you and your staff keep an eye out for these tests results:

* 2 tests: 24-hour urinary free cortisol (UFC)
* 2 tests: 12am cortisol/ACTH at hospital
* 2 tests: 8am cortisol/ACTH
* 1 test: hemoglobin a1c

Would you please email me a copy of the test results after you review them?* I am sure you can understand my anxiety over these pending results... Could I be cured? Am I still suffering from Cushing's? This disease has turned my life upside, and I am hoping that it is finally over, but I am worried.

I know this may sound drastic, but I have been having several symptoms that make me think that my Cushing's may not be cured. Since my Cushing's is cyclical, the above tests may or may not show high results. These are my symptoms in the past three months:

* cortisol serum at 8am of 18 (20 is considered high post op)
* ACTH plasma at 8am of 29 (30 is considered high post op)
* low IGF-1 again (59, 66) after one normal 145 post op
* high blood pressure (140s/100 at several doc appts)
* high blood sugars (consistently 150 for several months, having never experienced high blood sugars before)
* sleep disturbances (difficulty going to sleep, up all night, waking at 4 am)
* inability to lose weight/fast weight gain in October/November
* more energy than most days
* acid reflux
* pain in my buffalo hump

If these test results are high, I want to work with Dr. "neurosurgeon" to schedule another pituitary surgery by the end of the month/insurance year. That will save me over $2000 because I would have to meet my deductible and maximum out of pocket expenses for my insurance.

My hope is that my hormones are still trying to get back in balance, and these symptoms will soon resolve themselves. However, I am a realist and I want to look at the data and make good decisions going forward.

I appreciate your help in battling Cushing's disease. I hope you can accommodate me as I try to work with all of my doctors and keep track of all of the pertinent information regarding my health*. Ugh. That's a hard job.


DOB: 11/--/19--
...-...-.... cell

* Please take this as my consent to release these lab results to me, the patient, via email.