I injured my shoulder badly enough that I needed surgery. I am hesitant to post anything about this because I am NOT looking for sympathy in the slightest. I DO want to post about my surgery because it's the first time I've been under General Anesthesia since being diagnosed and I think it will help others to know how I handled it.
I have to apologize to others on my forum and in the past for acting like, "Well, just print everything out and tell them how it is!" That was not how it worked for me (although close) and I can see how things could have gone very differently.
First, I printed out two of the below documents. I am at a loss as to how to link the documents here. My brain is not working
Surgery Guidelines
NADF Guidelines
When I met with the surgeon about the surgery, I gave him the Surgery Guidelines with my procedure requirements circled and he immediately called the anesthesiologist. The anesthesiologist insisted on testing my sodium the day prior to surgery (fine but, in my opinion unnecessary). I did not meet with the anesthesiologist until just prior to surgery. I did not end up handing him any of the guidelines.
Here was our discussion.
Me, "I have adrenal insufficiency and need 100 mg Solu-Cortef prior to surgery."
Him, "OK, that's what I usually do, sounds great."
Me, "I present differently than many people with AI when I go into crisis, my BP goes high."
Him, "Yes, that's different, most of the time it goes low, right?"
Me, "Yes. Would you mind giving me 50 mg Solu-Cortef through the IV after surgery so I don't have to worry about trying to take it orally?"
Him, "Do you want Solu-Medrol or Dexamethasone?"
Me, "No, I need the mineralocorticoid and fast acting Solu-Cortef."
Him, "No problem, you've got it. I'll let them know in post op."
I have to say. there was more and I felt very comfortable with his knowledge and that of his coworkers as far as AI goes. Perhaps this is how people get in trouble? Regardless, everything went fine.
Here was my protocol on the day of surgery:
10/10/10 HC in the morning before surgery (no food or water after midnight)
2 hour surgery at 2 pm with 100 mg Solu-Cortef
50 mg Solu-Cortef post surgery
2 hour car ride home
Results:
Day of surgery (Wednesday)
For the first time in my life after surgery, I was NOT nauseous. I asked for a hamburger and fries as I was waking up. I ate the whole way home in the car and had meatballs when I got home. I actually did not feel terrible. The amount of HC I got for surgery might have been slightly too much for a 1-2 hour procedure BUT I am glad that is what I got.
Day 1 post surgery (Thursday)
Took HC (65 mg or so? My usual is about 35) and pain killers as needed. Felt better than I should because of the block on my arm. No nausea.
Day 2 (Friday)
HC about 55 mg and painkillers at the end of the day. No nausea.
Day 3 (Saturday)
Forgot 10 mg of HC in the morning that I should have taken and got nauseous. Pain killers after noon.
50 mg HC.
Day 4 (Sunday)
I will have taken 50 mg HC by the end of the day and pain killers before bed.
Struggles:
Apparently, with shoulder surgery and rotator cuff injuries, sleep is a big issue. The last 6 weeks have been tough sleeping. Since surgery, sleep is about two hours at a time for about 6 hours. Good thing I can function OK on very little sleep. Pain is not terrible considering the damage was extensive, they did extra procedures and put in extra hardware.
If you have any questions, please let me know in the comments.
Dusty,
ReplyDeleteSo happy this surgery is behind you and all went well. Two hours is a long time!!!! Hope you plan to continue the increased HC to aid healing.
Big hugs and best wishes for a complete and speedy recovery!
Wanda
I'm glad it went well and that the doctors were all 'in the know'. I may have a surgery coming in the future and it makes me a bit nervous.
ReplyDeleteI did undergo a procedure once where extra solu cortef was recommended but the doctor ignored and said it wasn't necessary. It turned out OK but one never knows.
Glad your surgery went well. Thanks for the details with the HC and the drs. I hope recovery goes fast!
ReplyDeleteBridgette
Dusty,
ReplyDeleteSo glad your surgery went well for you.
I have found printing out papers and telling doctors how to treat me to be difficult. I appreciate your posting this.
I think being prepared and having the knowledge that you do about how to be treated in an emergency or surgery situation very helpful. We should act with some authority when it comes to having surgery and not having to worry about going into a crisis.
I have learned a lot from your post's. Appreciate the links.
Wishing you a speedy recovery.
God Bless,
Jona
dusty- i recently had to have my adrenals removed due to cushings disease, so i now have addisons from not having adrenals. prior to surgery i travelled the world as an international flight attendant. i am having a rough go getting the meds balanced (fainting a lot, low bp etc) and i am so scared i won't be able to be a flight attendant again. you inspire me. do you have any issues flying? is the hope for me to be a fight attendant again? i am very scared for my future. thanks for the inspiration- i really needed it tonight
ReplyDeleteCaroline,
ReplyDeletePlease join the forum at www.addisonssupport.com. We have lots of healthy Addisonian's and lots of advice.
Dusty
Wanda, Holly, Bridgette and Jona,
ReplyDeleteThank you!
Dusty
Hope you are doing better and getting some sleep, Dusty!!
ReplyDeleteChad
dusty thank you!! do you mind sharing the link for the addisons forum? i tried to find it but couldn't. thanks so much!!
ReplyDeleteWanda, thank you for your years of support, friendship, cheerleading and mentoring!
ReplyDeleteHolly, I handed documents to the doctors and discussed everything. Everything was in writing. I didn't leave anything to chance. I'm not sure they were in the know but they pretended they were after I educated them! Good luck with your procedure!
Thank you Bridgette!
Jona, I'm glad I could help :)
Caroline, the forum is www.addisonssupport.com we have a couple of former Cushies there. Come join us! I have no issues flying if I make adjustments in my steroids. I have traveled internationally without issue as well.
Chad, I just started getting some sleep. 2 nights in a row. Woo Hoo!