Skip to main content

2 Week Update

I had my post op appointment with my endocrinologist today.  We pretty much got no news.  My 8am cortisol levels for the first 4 days after surgery were a little bit higher than she'd like to see them, but then I had two 24 hr urine tests later in the week that had low cortisol levels.  I had low levels after the first surgery too, so we're going to do some more tests and wait and see.  We discussed what my options were if this surgery turns out to not be a cure for me.  They're a little bit better than I had originally thought, but not ideal.  I would rather not rely on medication and wait for radiation to work or have an adrenalectomy and also be dependent on medication forever.

As far as how I'm feeling, I feel pretty good.  I'm not sleeping well, which could be due to the medication I'm on or because of the Cushing's, it's hard to tell.  I never felt the immediate weight off my shoulders like I did with the last surgery.  I felt so different even a few hours after surgery, it's hard to explain.  This time I did not feel that.  I am also not seeing the results like I did last time.  I lost a ton of water weight the week after the last surgery, and this time I haven't noticed a big change from before surgery.  None of these things are real indicators of anything, which is what's so frustrating.  I wish I could tell whether or not the surgery worked, but it is too soon to tell.  I go back on the 29th, and before that appointment they'll test the rest of my pituitary function to see what we're dealing with there.  There is a possibility I lost some hormone function after they removed more than half of the gland.

4 more weeks of waiting!  Hopefully things will start to look up soon!

Comments

  1. Danielle,

    Just wanted to let you know that I am hoping and praying like crazy that this is a cure for you!

    Sarah

    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

10 days at MGH

It's been 10 days, and I am still in the hospital.  I walk two or three (very short) laps around this floor and my heart rate is upwards of 130, my lips, fingers, and toes are increasingly blue-tinged.  My oxygen saturation levels are even lower now, after sitting here for over a week.  So what have we accomplished so far?  Let me tell you. I had the arterial blood gas sampling done on Sunday.  It took a couple more tries but success!  It was of course, painful but nothing that I couldn't handle, especially if it meant an answer and an easy fix.  My arterial blood looked very dark as she was drawing it out, not the bright red oxygenated blood you usually see from arteries.  The doctor commented on this, and said that it was very interesting. Unfortunately, I did not have an abnormal level of methemoglobin.  So that ruled out methemoglobinemia .  The plan was to have an echocardiogram on Monday.  After waiting most of the day, I got pushed to the next day's schedule

MGH Round 2

Hi all, I've been pretty absent from blogging/life activities over the last month or two because my whole life seems to be consumed again by illness and complications from Adrenal Insufficiency.  Right now, I'm typing from my private room at Mass General, where I have been since Saturday.  Before that, I was at a local hospital for a few nights. After being discharged with no answers for my shortness of breath in January, and then refusing further treatment for Lupus related hemolytic anemia, I went back to work and tried to continue on as normal.  This worked for a while, but then enlarged lymph nodes started popping up all over my neck.  I was seen a few times at my PCP's office, and at first thought it might be the start of a virus, but when they didn't disappear after a few weeks, I had an ultrasound to see if we could find a cause.  It turns out, aside from multiple slightly enlarged lymph nodes, I had one whopper lymph node on the left side of my neck, which w