Here is what you will find on this page:
The Pump Chronicles, my experiences with the cortisol pump.
WHAT YOU WILL NOT FIND: Medical Advice. Speak with your doctor about any concerns you might have, or changes you want to make with your treatment, but remember at the end of the day YOU are your own best advocate, the doctor is your partner.
The pump is an intimidating idea at first. It might seem scary the thought of being “stuck” with a needle, or daunting trying to push for this treatment with your medical team. It may take some time to wrap your head around it and embrace the idea.
First I think it helps to read about it. I have some research about the cortisol pump. Successful studies, basic pump overview, management of the pump. These are good documents to share with your doctor if you decide to pursue this treatment. BE ADVISED if your doctor ISN’T on board, s/he is going to have some excuses to throw at you. Ex- “Your insurance wont cover this, it’s not FDA approved, blah blah.” You can counter these by being prepared and knowing your insurance coverage (the doctor doesn’t actually know for sure,) and knowing that that the “non FDA approved” part DOES NOT mean the pump is unsuccessful or dangerous, rather, the issue is the manufactures not seeing a profit in having their insulin pumps approved specifically for cortisol. There’s just not enough market to make this worth while to them. That doesn’t mean you cannot benefit from this treatment. If this is something you’re interested in you are really going to have to advocate for it. You might get brushed off at first, and you might have to try more than one doctor before you find one that is genuinely supportive. Beware of the “I’ll look into it” line. When this happens, ask what steps they will take, as in “What’s next? When can I expect to hear back from you?” If you don’t already, ask for a direct way to communicate with the doctor between appointments, such as direct phone number or email address.
Next you’ll want to familiarise yourself with insulin pumps. This is like a whole new world for someone without diabetes, but jump in, because type 1 diabetics have the scoop on insulin pumps. Their knowledge and experience is going to be a huge help. Start with some insulin pump reviews, learn about the different brand manufactures and models of pumps diabetics are currently using. Each brand/model has different features and its own pros and cons. Does your pump need to be waterproof? How big of a reservoir/cartridge do you need? Batteries or rechargeable? Leur lock compatibility? Maybe the size of the pump is important to you? Cost is of course a big consideration. Keep in mind many features insulin pumps boast like carb correction, bolusing by grams of carbs, CGM compatibility, etc… those don’t have much use for us non-diabetics, and shouldn’t influence your decision.
From there I took to YouTube. This is a great way to familiarise yourself with the pump. Insulin pumpers have an array of reviews and tutorials that are just as applicable to cortisol pumpers and VERY helpful.
Pinterest was another is another helpful resource that can help you connect with informative blogs and articles about the pump. You can learn proactively from other’s experience, gather helpful tips, save some funny memes, and find helpful products all in one place.
So how much is this going to cost? That’s really dependent on 1. Your insurance coverage and your doctor’s willingness to advocate for it. 2. The pump you choose. 3. The amount of Solu-Cortef and supplies you will need. It’s not cheap, but if you’re poorly managed on oral meds, this could potentially cut down on your medical bills. It is most definitely a case by case situation.
The cortisol pump can be a game changer for managing adrenal insufficiency. It takes more effort to manage an infusion pump than taking oral meds, but if you can handle the med mixing, site changes, and rate adjustments there is a bigger quality of life pay out than with pills.