Extreme Cortisol Pumping: Pumping During Surgery

A few days ago, I had my 10th surgery. This one was different as opposed to the previous nine. For the first time I was permitted to wear my pump during the procedure.


So how did it go?


This was a fairly quick, laparoscopic abdominal surgery. Patients without comorbidities are usually back home in a few hours. Since I have adrenal insufficiency and some signs of pheochromocytoma, they did keep me a little longer as a precaution. 

Speaking of precautions, if you have adrenal insufficiency you MUST speak to your surgeon, endocrinologist and anesthesiologist about your steroid plan for surgery. Everyone needs to be on the same page. I can’t tell you how many times I’ve heard adrenal insufficient patients say, “oh the anesthesiologist knows what to do” DO NOT EVER MAKE THAT ASSUMPTION! They do tend to keep solu-cortef in the operating room, but that doesn’t mean they will dose it correctly. Some anesthesiologists deviate from the standard of care and come up with their own plan using less steroid. They think they’re doing you a favor, when really they are unknowingly endangering your life and hindering your recovery. DO NOT LEAVE THIS UP TO CHANCE! Make sure you’re on the same page!


As soon as surgery was mentioned, I made my concerns clear. I knew there would need to be special precautions because of the risk of adrenal crisis or hypertensive episodes due to pheo. I spoke to my surgeon and endo about this as well as two anesthesiologists. I had to have more tests than the norm in order to be cleared for surgery. I had to have any possible pheo activity blocked by taking blood pressure medication for a couple months. At this hospital they don’t assign an anesthesiologist until the night before the procedure. This makes communication a challenge, but by the time I actually met her, pretty much everyone including the nurses had already heard about my steroid plan and pheo concerns. When I discussed it with her, she had already heard my plan and was thankfully in agreement. I would receive 100mg of solu-cortef before and after the procedure and keep my pump running.

https://www.addisons.org.uk/files/file/4-adshg-surgical-guidelines/


This is where I made a mistake. I planned on running a straight 10mg/hr during the procedure. However I forgot to program that profile into my pump. I programmed it in pre-op and realized my settings only allowed me to go as high as 8mg/hr. I didn’t want to edit my settings at the last minute, so I programmed 8mg/hr. That would have worked just fine except I FORGOT TO SWITCH OVER TO THAT PROFILE. Yes, it is all well and good to program a profile, but you have to actually “run” said profile for it to work. Oops! So during the procedure I was running my normal every day basal program of 30.2mg/daily. 🤦‍♀️


I woke up being wheeled into recovery. My abdomen hurt so bad. They gave me IV pain medication, but the relief began to fade after a couple minutes. They gave me another dose. Then I watched the nurse give me 100mg of solu-cortef. 15 minutes later I was moved to a regular room. That’s when I realized there was a problem. The IV pain meds had worn off already. My pain was uncontrolled. I felt nauseous, but the nurse would not give me any oral pain medication until I ate something. I had a couple spoonfuls of pudding and felt sick. I was given IV zofran with minimal effect. Still sick. Every IV medication I’d been given seemed to metabolize way too fast. This has always been the case for me, and it’s the main reason I had to switch to the cortisol pump to begin with. 
There’s a familiar and unpleasant feeling I get when my cortisol isn’t sufficient. It’s an uneasy, almost panic feeling where I’m keenly aware that something isn’t right and I’m increasingly desperate to find relief or escape. It’s more like a primal instinct, “Something is wrong, help me!” I’ve unfortunately felt this enough times to realize it was cortisol related. I realized then my pump was still set on the measley 30mg profile. I immediately switched it to the 8mg/hr profile that I had programmed in pre-OP. The problem is it takes a while for pump rates to build your blood cortisol level. For whatever reason my body did not keep those 100mg IV solu-cortef boluses in my system very long. So I had to suffer while my rates caught up. Meanwhile the nurse had given me a couple doses of pain pills, and IV phenergan. Phenergan only helped the nausea for 5 minutes or so, but thankfully it made me extremely sleepy. I was able to sleep through the misery and give my pump some time to do its thing. A few hours later the nurse came in to check on me, by then the pain meds were working and my pump was kicking butt. I was still pretty knocked out from the phenergan, but I felt well enough to get dressed and go home. My nausea was gone and my appetite had returned. Yay for proper steroid dosing!


Friends, I can’t tell you enough how much sufficient steroid dosing will make or break a situation. Especially a high stakes situation like a surgery. It’s amazing how fast I went from utter misery in the hospital, to eating a sandwich at home. Steroids ya’ll! They’re a big deal! I stepped down to my 84mg/daily “sick” basal profile and kept it there until late evening. Note: your ability to lower your stress dose will be a case by case situation and depends on what type of surgery you had, how long it was and how invasive it was. Pain control is a major factor. Stay on top of your pain medication schedule. Do not let your meds lapse or try to suffer through it. This will increase your body’s cortisol need, hinder your ability to taper your steroid dose, and potentially prolong your recovery. You need sufficient steroid dosing to get pain under control and you need your pain meds to keep your cortisol need under control. They go hand in hand, don’t skimp on one or the other. 


Quick PSA: When you’re running high rates. YOU WILL need to change your inset more often. Pumping during surgery and recovery sounds pretty convenient compared to stress dosing with pills, and it was, but what I did not mention is all the stress that kind of volume puts on an infusion site. My site was leaking by bed time, which I totally expected to happen. This is EVEN MORE true if you run 2:1 dilution ratio in your pump because you are pumping twice the volume than those on 1:1 ratio. So yes, stress dosing and sick dosing with the pump is easier and more effective than pills, but DO NOT NEGLECT YOUR SITE! Don’t wait for it to start leaking either! When you’re ill/recovering your body needs cortisol the most, this is not the time to wait around for a site failure! I’ve changed my site DAILY while recovering from this procedure.


I’ve had 2 previous surgeries as a pumper, but the medical teams for those procedures were not familiar  with, or keen on the idea of pumping during surgery, and I didn’t push them for it. After my experience pumping during this latest procedure, I am going to push for my pump every time. Infection risk is minimal, it’s less than that of the actual surgery itself. The continuous delivery of the pump is ideal for recovery and superior to IV bolusing dosing only, especially since hospitals seem to think bolusing once every 8-12 hours is going to work fine. Its miserable. Continuous delivery is where it’s at! One day they’ll get with the times I hope.


At the time of writing it’s been nearly 48 hours since my surgery. I’m back on my normal profile plus a 200% increase (double dosing). My energy is good and my pain is well controlled as long as I keep up the pain medication schedule. My biggest problem at the moment is remembering not to over do it. I’m tempted to clean house, go on a walk, etc, and I dont feel like resting like I should. Steroid dosing makes a world of difference, and the pump makes this a much smoother experience. Just don’t neglect your infusion site or your pain meds! Happy healing friends!

❤Michelle

UPDATE: Please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

Negativity Ends With You

Negativity is like a disease. It’s highly contagious. It wants to spread and grow. It will steal your joy then find a new host to infect. You have the power to stop this epidemic! The negativity can end with you! You are in control!

Lately, when negativity creeps into my life, I take pleasure in squashing it. How do I do that? It’s easier than you think. When you experience life’s minor upsets and inconveniences, resist the urge to complain about them. Do not repeat that negative experience. Protect your happiness and don’t allow negative experiences to take up space in your head or anyone else’s.

  1. DO NOT COMPLAIN.

I honestly did not realize this, and maybe you didn’t either—you do not have to tell anyone about every little thing that happens to you. The driver that cut you off in traffic, the inconsiderate shopper that blocked the grocery aisle, the cashier or receptionist that had a bad attitude—no one needs to hear about these things. It only spreads negativity like an uncovered sneeze. You wouldn’t knowingly give your friends and family a cold, so don’t infect them with negativity either.

This doesn’t mean hide the things that hurt you. Human beings need emotional support for life’s disappointments. If something big has got you discouraged or worried, we are made to help each other. Did those minor inconveniences hurt you? Of course not. Don’t let them steal anymore of your time and energy.

2. FIGHT NEGATIVITY WITH GRATITUDE.

The other day I encountered a rude salesperson, and I complained about her. I actually took the time to call the company and make a complaint about her. After I ended the call, I realized how ridiculous I was being. I let this insignificant interaction steal my joy while I wasted my valuable time finding the phone number, going through the automated menus, sitting on hold, then making my complaint. Did it make me feel better? No, it definitely did not. I was only more annoyed by the end of the call. All that time I spent stewing in negativity I could have spent being happy, but instead I wasted it.

So how does one prevent negativity from taking up mind space? One word—GRATITUDE!

What could I have done differently in that situation? If I had it to do over, first I would have prayed for that salesperson. Then I would have been grateful for the nice sunny weather, my daughter (who I was with at the time). I would have been grateful for my health and the ability to drive (we were on our way to an appointment). Then I would have put on some music and been grateful for some jam time with my kiddo. That would have made me feel much better than complaining.

Maybe you’re reading this and you think it’s a bunch of crap, more “positive thinking” mumbo jumbo. No, what you need to realize is that YOU ARE POWERFUL. You are in control of how you react to a situation, and you always have the option to choose joy. Let the negativity end with you and help create a happier world.

3 Years on the Cortisol Pump

What happens to your body after 3 years on the cortisol pump?

I lost my adrenal glands to cancer and became adrenal insufficient in September 2014. I was told by my endocrinologist at time it was no big deal. Just take two pills a day and you’ll be fine! (She’s not my Endo anymore btw.) I wasn’t fine. I was weak, sick and miserable. I tried 3 different oral steroids, and increasingly complicated dosing schedules attempting to replicate what healthy adrenal glands do. Nothing I tried was quite right. My health was declining. I was catching illness after illness. I spent nearly everyday in bed. I was watching life pass me by. I was 27, and elderly people had better quality of life than I did. This took a heavy physical and emotional toll on me. The most heart breaking part was how it affected my family. My children were very young and they were already getting used to mom not being involved in their lives. I was devastated.

The day I started my pump I was on 188mg of hydrocortisone. I had been sick with respiratory illness for 6 months straight, and could not seem to recover. Any less steroid would leave me unable to breathe and spiraling into adrenal crisis. I was suffering with symptoms of BOTH over and under replacement of cortisol. Something had to change.

This is where I was most of the time before the cortisol pump.

Though most people have a slight increase in their steroid dosage when they initially start the pump, I was able to reduce my dosage from 188mg to 84mg right away. (Side note– that dosage has continued to decrease as I have gotten healthier. I’m at 30.2 daily milligrams as of fall 2019.) My body was responding well to subcutaneous hydrocortisone.

I saw immediately improvement, but didn’t see dramatic results right away. The first day, I was able to get out of bed, do simple things around my house– cook dinner, spend time with my children, clean up the dishes. I felt different though– no more roller coaster of peaks and crashes as each pill kicked in and rapidly wore off.

The pump is not magic. It took tedious adjustment of the delivery rates, which was almost completely trial and error. The pump enabled me to get my tired body up and make myself exercise my atrophied muscles. It took work and determination. In time, I could drive myself, I could walk around the block. It took nearly a year of adjustments before I could sleep like “normal” people do. I still woke up with a pounding headache every morning, but even that was still an improvement.

So where am I now?

You can tell I’m sick in the first image. I was sedentary, had constant respiratory problems, and was about 30lbs heavier.

It’s important to realize that the pump will not cure adrenal insufficiency nor any of your other health conditions. I’m still battling cancer and I still deal with a few other issues, but my life had changed dramatically for the better. With years of hard work, titrating delivery rates, training my body I can now pass as a “normal” person. I can be active all day most days (there are always good days and bad days with any chronic illness). I can drive. I can exercise- I walk, run, bike, do yoga. I have a social life now. I volunteer at my kids’ school a few hours a week, I serve at my church, and we’re active in scouting.

It’s still a fight. The struggle doesn’t end when you switch to the pump. You’ll always have to deal with things like insurance companies and pharmacies fouling things up. I still occasionally see doctors that are completely clueless about this treatment. Most are intrigued, a few are critical of it. I’m happy to educate them! (Side note– they aren’t always happy to be educated, but I’m going to do it anyway! 😉)

I can see why the cortisol pump might not be right for everyone, but I truly feel that everyone with adrenal insufficiency should have this option available. Some of my doctors at both the National Institutes of Health, and at UT Southwestern have mentioned the possibility of opening a new study on the cortisol pump, and while I’m not going to hold my breath, even just the fact that they’re seeing the benefits is a huge step.

If there’s one thing you take away from this it’s that the pump is a tool. More like a musical instrument actually. If you buy a guitar for example, it does no good if you don’t learn how to play it. The more practice you have with your instrument the better it sounds. This concept holds true for the pump as well. It all comes down to how well you program and use it. If your basal rates are junk– you’ll feel like junk. If you refuse to bolus, or bolus too little too late, you’re still going to feel awful. The pump is a tool to help you manage your AI. It doesn’t do it for you.

I am grateful for the cortisol pump every day. It has given me my life back. No longer am I stuck withering away in bed while life passes me by. I’m up and out and making memories.

UPDATE: Please checkout thecortisolpump.com a comprehensive and research based guide to cortisol pumping!