It’s now a thing of my past, so I’ll probably have to change the title of my blog someday in the near future. I no longer have that horrid disease that did a pretty bang up job of controlling my life for over 3 years. I’m almost 2 weeks out from having my adrenal glands removed, and I can honestly say that I feel rather decent. The rate at which I’m healing has been speedy, and I have very few complaints thus far.
I last left off in the pre-surgical prep room with a picture of my CC (Cleveland Clinic) swag, including a fancy gown, hair net, non-skid socks, and a swanky zippered tote for my parents to carry the clothing and shoes I wore to the surgery center. I suited up that morning, and of course had time to take one last selfie, as it would be the last picture of me to ever exist while having Cushing’s. I can’t say it’s an attractive picture, but it’s one I’ll hang onto as being my last memory while lucid and having an over production of cortisol in my life:
I came out on the other end and got this sweet water jug thing as a You-lived-to-tell-the-tale type prize. Or maybe they gave it to me because I was incredibly thirsty out of surgery…either way, they mean business up North, and more CC swag for my pile.
In all seriousness, the removal of my glands took roughly 5 hours. I checked in at 5am, was called back around 6am, got dressed, met the surgeon for the first time in person (he was/is legit), then was taken back to the OR around 7am. I chatted and joked with the people who’d be in the room during surgery for a bit before I took my final breaths and drifted into LaLaLand, where I don’t recall a thing! Everything went smoothly in the operating room, and I got to use this fun little tool when I came to, to help with my breathing:
I was told that I chewed on my breathing tube initially (I was intubated and put under general anesthesia), as I was positioned on my stomach, so I had to be turned over and they put some other crap in my mouth so that I wouldn’t chew on it the whole time and would be able to breathe during surgery. The surgeon went in through my back, in a procedure known as a laparoscopic bilateral adrenalectomy via the posterior retroperitoneal approach. This technique isn’t highly used, but it makes much more sense to reach the adrenals through the back, as that’s where they’re located, atop the kidneys. I have 6 small incisions, 3 on each side, with internal dissolving stitches, covered by glue, steri strips, and bandaids.
I spent a few hours in the recovery room, but then was able to go up to a regular floor, where I only had to spend a day. During that day however, I consumed my fair share of beverages, as the IV drip I was on was not satiating my whistle!
I was put back on a regular diet soon after I came to, but I think there was some confusion as to how hungry I actually was:
Roughly 24 hours after I was brought onto the recovery floor, I was told that I was being discharged! All of my doctors and their teams were in agreement that I was doing well enough to leave at that point, also keeping in mind that hospitals are filthy, dirty breeding grounds for diseases and germs. Because I wasn’t sick sick, they didn’t want me staying in the CC and running the risk of catching something. So naturally, I disrobed from my lovely hospital attire and took a “I’m getting out of here selfie”:
We stayed at a hotel nearby the CC, and I was up and about the next day. We had a celebratory dinner of fantastic Indian food, where I was able to eat 1/3 of my favorite meal:
We also explored Cleveland’s Botanical Gardens, where we saw some beautiful flowers and plants:
We had to stick around the area until Friday afternoon, when I had a follow-up with my surgeon and my endocrinologist, who both gave me the go-ahead to get the heck outta there. They said everything looked wonderful and that I should play the part of a hurting patient who just had surgery, so as to gather sympathy from others, ha ha (I ain’t no tease!)!
All in all, I’m super glad I followed through with the BLA – I have no regrets (yet). My adventures in medical land would not have been possible without the help, love, and support of sooooooo many people all along the way, so THANK YOU all, so much, for sticking by my side. I owe a lot to these two, who’ve been super amazing throughout the whole ordeal, and were great to have in the Cleve:
So my dad flew home early Saturday morning, and my mom and I started our road trip home from the Cleve to Tallahassee, with several stops along the way. One of the first:
The second, in Newell, West Virginia – the Fiestaware Factory/Factory Store (I’m a sucker for colorful dishes, what can I say?!):
Next up, 2 nights in Highlands, North Carolina:
And lastly, a passporty photo of myself (so vain) 1 week post-op.
I’m home and things are going smoothly – I’ve lost all the weight I gained in the hospital (they pumped me full of 10 pounds of goodness), plus ~10 lbs, so I think things are working. I’m on a strict dose of 2 meds, 3x a day, and will meet again with my endocrinologist at the SoFlo CC on June 16th. I wear my medical alert bracelet, carry a SoluCortef (extra strength cortisol) injection with me in hopes that I’ll never need to use it, and have alarms set on my phone for my medicine times. I also enjoy low-cal sports drinks, yummmmmmmm. (My electrolytes are now wonky.)
While I don’t know that I’d say being Adrenal Insufficient is enjoyable, it sure is manageable, which I’ll take over Cushing’s any day.
As always, thanks for your love and support – I’m going to be just fine.
With love and no diseased glands in tow,