Skip to main content

2 Weeks Post BLA

It's OVER!  My surgery went great - my surgery was on Thursday and I got to come home on Saturday like I wanted to.  I've been home for about 10 days now and I'm starting to get bored.  I've lost 10.5 lbs in 13 days though!  So that's encouraging that I'm losing weight that fast while I spend my day in bed or on the couch.  

I have found it really hard to wake up in the mornings, I have been falling asleep around 1 or 2am and waking up around 8 or 9, when I take my medication and watch TV for a while, but the last few days I've been falling back asleep until 12 or 1 in the afternoon.  I am getting really exhausted after doing small things, like going to the hospital across the street for lab work or going to the store just to get out of the house with my mom.  I am VERY achy like I have the flu but that's all normal, even good signs that everything worked and my body is not making any cortisol.

I go for my first post-op appointment with the surgeon Friday, where he'll check all 7 of my incisions (2 of the 7 are very tiny, the rest vary from 1 inch to the biggest one which is 3 inches) and we'll found out any pathology results.  He said everything looked pretty normal so we're not expecting anything abnormal from those results.

It's such a relief to have the actual surgery behind me, knowing it was a sure thing.  I'm still on a relatively high dose of hydrocortisone so in a few weeks I'll start to wean down on that (which won't be fun from what I hear).  Thank you for all the cards, phone calls, texts, emails, facebook messages, visits, EVERYTHING. It means so much to have friends and family that care and are supporting me through this tough but exciting time!

Comments

  1. SaberloweSeptember 16, 2010 at 3:18 AM

    I'm so happy that your surgery went so well, Danielle. And you've already lost 10lbs... whoah, awesome!

    ReplyDelete

Post a Comment

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood. Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post. To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer. In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after re
Post a Comment
Read more

Cushing's Awareness Challenge - Day 23 - The Diagnosis and Treatment Process of Cushing's Disease

For many people with Cushing's it takes months, years, or even decades before finally getting a diagnosis and help.  For me, it was 5 years from when I thought I had Cushing's until my endocrinologist told me I did indeed, have Cushing's Disease. Once you read about Cushing's and think it sounds just like you, here's what you will have to do to get rid of the excess ACTH or Cortisol source 1. Find a reputable endocrinologist that other people with Cushing's have had good luck with.  You can find a list on Cushing's Help  HERE .  You can also ask someone that has been diagnosed on the Cushing's Help boards or on the Facebook group which doctors they see. 2. Make and appointment, and be patient!  Sometimes the endocrinologist has to do multiple tests over a period of time, and those results can take a while to come back.  Some tests to expect are 24 hr urine free cortisol tests, midnight salivary tests, dexamethasone suppression tests, or random/midn
1 comment
Read more

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland. I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's ha
5 comments
Read more