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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.




Comments

  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. T.debarros11@gmail.com . I wish you well,

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  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))

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    Replies
    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?

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