Skip to main content

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having them marked out in a bright purple was not so nice.  I had dreamed of losing enough weight to be able to wear a bikini someday, but knowing I would have at least 11 scars on my abdomen alone after these surgeons were done with me I realized that would probably never happen.

I was wheeled into the OR, and positioned on a sort of bean bag on the table, as they would be operating while I was on my side to have the best access to my buried adrenal glands.

When I woke up, I was in the nicer post anesthesia care unit, with dim lights and a private room.  I felt even bigger than before the surgery, my abdomen swollen from the surgery and the extra steroids.

I knew this was the beginning of a second chance at life, the start of a healthier, happier life, but it took a lot longer than I thought it would to feel better.  For the first 2 years, I struggled with not losing weight, infection after infection, and not making a lot of decisions for myself.

This past September, I finally took my health into my own hands and started making decisions based on how I felt.  Now, a year later, I am over a hundred pounds lighter and am still working on the FEELING better part.

Would I make the same decisions now? Absolutely.  I would have taken matters into my own hands far sooner, and not waited so long.  Am I happy now?  Most days, but I would say almost half of the time it's a struggle.  I never have as many spoons as I need or want, and it's still hard to have to choose and prioritize things like resting and sleep.  I hope that things keep getting better and easier, but as I've said before, it's hard to adjust to a new normal, and some days I have to have a pity party and get over it.  It's been a very long, hard road, with countless setbacks.  This month, every free day I have is filled with appointments, it NEVER ends.

Someday, I will find peace that THIS is my life, not just this month or year, but FOREVER.  It's hard to accept that I may never have a month that is free from appointments or a year free of hospital stays or ER visits, but it is better than it ever has been since before middle school.  That says a lot.


  1. Hi Danielle.
    I have recently come across your blog and as a person who has suffered for almost seven years, still pending a diagnosis, I am inspired by all you have shared. I am going for my initial. Results follow-up visit this Thursday at the neuroedocrine clinic at MGH. I am wondering if you wouldn't mind becoming e-pals. After all this time and all the horror stories I'm afraid that I am not going to get the lab results I'm looking for. I think it would really be helpful for me to connect with someone who has already been through all this plus.fee
    Free to email me. . I wish you well,

  2. Danielle -- somehow I was guided to your blog tonight and i'm so glad I was ;) thanks for sharing your BLA surgery story....i'm facing it in 10 days and reading your 'no regrets' helps ease my anxiety ((hugs))

    1. Hi Danielle. My name is Diane. I just had my surgery Nov 7. For the most still have a stuffy nose I guess from prep med. I am having issues with getting tired at about 7. Sleeping till about 2-3 am and then being wide awake until 7 p and start cycle again. I have 6 incisions on my back. All is now and scary. But the surgery was my greatest fear. Now I am waiting to go on 22nd for follow up and testing of tumors. I fear any future adrenal crisis... as well as the unknown. I believe God will watch over me and walk I hope at times run me thru this. Any advice. How are u doing?


Post a Comment

amazon audible

Popular posts from this blog

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…