Introducing Phillip! My New Cortisol Pump

I’m excited to announce that after 3 years of trying, I’m one exhausted but proud mother-pumper. On 27th March 2019, I was hand delivered a Medtronic Mini-Med 670G (a medical device that’s marketed for diabetics but I’m using to treat Addison’s Disease by pumping the steroid hydrocortisone). I know, I know, it’s been two months already and you’ve been dying to see the little guy: I present to you…Phillip the pump!

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Thank-you for your well wishes and curiosity about Phillip. I’m going to do my best to answer all of your questions. However, I am keen to balance out the “mother-pumping is all rainbows and lollypops” image that’s so often projected on social media with the reality of living with a baby brick leashed to your body 24 hours a day.

What’s he like?

I couldn’t resist another photo. At least I left out the rainbows, lollypops and little sign saying “mummy’s favourite boy”. What a lovely little…um…brick Phillip is. I was told by the pump company to expect that Phillip would be the size of a pager. To this description I asked “wot dis?” The closest I’ve ever come to a pager was watching the ’00s TV medical-comedy Scrubs.

I added the identification label to Phillip that reads “solucortef pump…etc”. He comes nude, no bow tie.

In reality, Phillip is better described as a short fat mobile phone – he takes after his mother-pumper in that regard. He needs to be chunky in order to carry a small bottle (reservoir) in one side and a AA battery in the other.

How’s he behaving?

Most people assume that Phillip is smart enough to sense what level of medication I need during the day. Alas nope, he’s not that advanced yet. Look, I’m sure that the engineers that designed him would excitedly tell you that Phillip contains a piston that allows the continuous and precise delivery of itsy bitsy tiny weeny amounts of liquid medication. However, the clue is in his name; Phillip the Pump just pumps.

It’s up to me to tell Phillip how much to pump and when. Luckily he’s very obedient; I just need to know how to push his buttons.

I’ve set Phillip to work 24 hours a day, at 7 different rates depending on time of the day. At the push of a button, I can alter his routine daily work rates (basal pattern), switch to a different daily work routine (e.g. sick rates), set him to work harder for a few hours (temporary basal pattern), or give myself an immediate shot of medication (a bolus). It’s pretty cool.

How’s he feeding?

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The process of making up Phillip’s medication is fiddly. It involves mixing what looks like powdered milk into water, injecting extra water (sterile water) into the vial because it comes in the awkward ratio of 2ml water to 250mg medicine, and drawing up the liquid medication into a scary stabby thing (needle and syringe).

At my current daily usage of medication (solu-cortef), I fill up and switch in a new bottle (reservoir see picture above) every 5 days. That intimidating looking blue plastic lid allows a diabetic to simply stab a vial of insulin on the top and the insulin magically flows into the bottle.

Since my medication comes in a different style of vial (an act-o-vial), I remove the blue cap thingy and inject the medication straight into the top of Phillip’s bottle with the scary stabby things.

As a new mother-pumper, I have made many glorious mistakes attempting to fill-up Phillip’s bottle (squirting solu-cortef around the room was a highlight). But once the bottle is filled and inserted, Phillip feeds me without any fuss.

How attached are you to Phillip?

I’m pretty sure that the pump’s design engineers put most of their efforts into making Phillip himself wonderful. The question of how to attach Phillip to an actual living human was perhaps secondary because their MacGyver-style solution involves a plastic tube, sticky tape and a length of hose.

This tiny plastic feeding tube (cannula) sits underneath my skin. How does it get underneath my skin?

It involves a sharp pointy thing (introducer needle) and a device (the pink and white plastic thing above; automatic inserter) that whacks the feeding tube, needle and tape (infusion set) against/into my skin.

Yes, whacking stings. No, I usually can’t feel the feeding tube post-whacking unless I hit a blood vessel or I agitate the plastic dooby that sits on top of the tube (no idea what this is officially called). Turns out that I’m skilled at hitting blood vessels and agitating the plastic dooby.

The plastic feeding tube is held in place on my skin with sticky tape (adhesive). My skin hates this sticky tape as much as it hates all sticky tapes – with an angry rashy passion. I get to enrage my skin every 3 days by ripping off the sticky tape, and whacking in a new feeding tube. I have a trail of angry red circles across my stomach.

The feeding tube is connected to Phillip’s bottle via a length of baby-sized hose (line). Though I can unclip the hose from my stomach for short periods, I receive no medication during this time. I’m practically leashed from my stomach to a baby brick 24 hours a day. It’s only mildly less annoying than it sounds and it’s definitely not kinky (the hose has magical non-kinking powers).

How are you going carrying him?

In the initial design meeting for Phillip, I think someone would have asked the engineers – “this might be a silly question, but how might a patient go about carrying a pump all day and all night?”

My guess is they responded: “easy, stick it in your pocket”.

The only woman in the room burst out laughing: “Ha! Pockets? Women’s clothing doesn’t have pockets and if it does, they are fake pockets that don’t support the weight nor thickness of a baby brick.”

There was a brief pause, then “no problem”, said another engineer, “we can give you a belt-clip”. And that’s how Phillip was delivered to me – with a belt-clip (eyeroll). Of course belts and waist bands are almost as elusive or flimsy as pockets in women’s clothing.

Luckily there is a market for pump accessories run mostly by mummys of diabetic child-pumpers. I usually carry Phillip in a stylish lycra band worn high on my waist. It keeps him clear of my clothing waist bands and I avoid smothering Phillip when sleeping.

Working out how to wear Phillip with different clothing (I’ve packed away half my dresses for now) and for different activities (I’m not sure how to swim or run with him yet) is a work in progress.

How are you going? How great are you feeling?

People started asking me just how fantastic I was feeling and when I would be ready to go on the conference circuit singing Phillip’s praises from day 1, hour 1. You can read about my first days with Phillip here.

At even two months into having Phillip, it’s very early days. I’ve had a lot to learn. I am still establishing routines. I am experiencing a *few* teething problems.

Plus we’re trying to get my initial medication levels down (this could takes 1-2 years), and my body is recovering from 7 years of unnatural cortisol levels, disrupted sleep and severely reduced function/activity.

I can tell you that the last couple of months have been the some of the busiest, most active and exhausting times of my life yet I haven’t felt as sick as I did on tablets. When I went out for a walk the other day, for the first time in years I felt the need to take music with me, and I returned home singing and dancing. Sometimes you don’t realise what you got – not until it’s gone, but – until it returns.

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17 thoughts on “Introducing Phillip! My New Cortisol Pump

    1. Thanks for your feedback and wishes Michelle. And thanks for your wonderful, honest writing which has been a vital source of information for me and very helpful in setting realistic expectations for pumping xx.

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  1. Hi Charlie,
    Thanks for the update and photos – giving it the name Phillip makes me think of the pump as a bit like its royal namesake: cantankerous, occasionally stroppy but usually gets the job done!
    Maybe you could ask your doc about using an antihistamine cream on the stomach rashes caused by the tape allergy.
    Hope you keep improving.
    Cheers
    Kathy

    PS: New theme song?: “Pump it Up” – Elvis Costello

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    1. Hey Kathy. You’ve got me imagining Phillip as a bit of a pretentious git – especially for a child! I might use this in my next post when I plan on bringing Phillip to life to voice his discontentment with me.

      Thanks for the suggestion of antihistamine cream – I’ll look into this for regular use. It got so bad a while back that my dr gave me prescription strength steroid cream – steroids on the inside and outside!

      Take care and good health,
      Charlie

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  2. Also, in case it’s relevant, I was able to get rid of MOST stinging (everything except when I’ve truly hit a bad spot) by switching from bacteriostatic saline to bacteriostatic water. (But I don’t mix it as thick on the pulsatile protocol as you guys do on the continuous infusion, so the pH or whatever may differ.)

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  3. Hi, great post. I use the same infusion set as you. Do you know about Smith&Nephew No-Sting Skin Prep pre-wipes? Maybe they’d help with the irritation. Also, after trying many belts (the narrow Terra is my second favorite), my favorite belt is the very low profile SPIbelt Adult Diabetic Belt, No-Bounce Discreet T1D Medical Belt. It’s handy because you can unclip it (although the clip can occasionally be annoying when you lean back against something– you have to swing it around to your side for a bit then). For night-time wear, there’s Stashitware Hide Your Cash Boy Brief, Women’s Underwear Shallow Stash Pocket (both on Amazon in the U.S.).

    For future posts, I’ll be interested to hear more about what rates you settle on and also whether you’ve considered pulsatile pumping (per the Stafford Lightman team’s research coming out of Britain). I’ve gone back to waking + bedtime dexamethasone plus tabs for stress dosing as needed for the time being, as I haven’t yet been able to find a pump dose that doesn’t have me waking up stiff. I’m planning on giving it more tries but nervous to go over 40 mg per day.

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    1. Hey EL. I started using those exact Prep Wipes a few weeks back and they seem to be helping a lot now. My skin also seems to be settling down the longer I’ve been pumping – less bruising and redness.

      I’ll definitely look into some of those pump holding options you’ve suggested – several I hadn’t heard of so much appreciated. I’m particularly keen to look into those undies as a different solution.

      The rate set-up has been tricky and slow going. It’s currently on hold because I’ve I’m sick and having to double-dose (which has been a whole other learning experience – first time with an infection with Addison’s let alone pumping).

      My endo mentioned pulsatile pumping (with meals) at our last appointment. I wasn’t sure if she was on the money with this but sounds like she’s ahead of me which is great. Glad you’re ear-marked the researcher here for me to follow up.

      So you’ve switched back from the pump to dex tablets for now? Or are you juggling a mix of pumping and tablets? How long have you been on the pump for and it sounds like getting the rates worked out has been one of the biggest difficulties?

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      1. Hi Charlie,

        How nice to hear back from you so quickly! I’m not on the Facebook Addison’s group so am probably more starved for people’s experiences than others.

        The pulsatile pumping is a whole official regimen complete with published clinical trials— search for Lightman SL or Russell GM and pulsatile on PubMed. The key paper is a 2014 publication “Subcutaneous pulsatile glucocorticoid replacement therapy.” Their study uses a specially-designed Italian pump, but it could be simulated with any other pump that has at least 8 phases per day. (You’d just set it to do your infusion in its minimum time, 5 minutes or whatever it is, rather than stretched out.) The finding of their research is that though you need at least some cortisol all day, a bit of on-off pattern is necessary for proper functioning of receptors, and also apparently for emotion and cognition/memory (there’s a 2018 paper on this, “Ultradian rhythmicity of plasma cortisol is necessary for normal emotional and cognitive responses in man”).

        Though of course the research team is very busy, they were very helpful in providing information (study protocol/regimen etc.) to my doctor. It sounds like your endo is pretty with-it and so would be interested in looking at this info. That’s an interesting comment about meals— I’ve never heard that done but have often wondered about it as a potentially logical approach.

        I really want to love pumping, especially since I went through such a saga to get set up, but for now, I couldn’t really say whether I feel better on the pump or the best pill regimen I’ve come up with: 0.375 dexamethasone at bedtime (my endocrinologist at UCSF is a dexamethasone fan and has most of his patients apparently successfully taking it only at bedtime— he says it stays active in cells much longer than the blood levels reflect), plus another 0.375 (half tab) dexamethasone upon waking (which presumably kicks in mid-day); plus I just added 5 mg cortisol tab upon waking to help me get going, and I’ll stress dose 2.5 mg for afternoon/evening stressors or for an exercise class. On this regimen, I wake up stiff but not horribly stiff. I do pills sometimes when I’m traveling or when I get tired of punching holes in myself. (I have hypopituitarism with adrenal insufficiency, so I’m not as entirely without adrenal function as someone with Addison’s).

        I got my pump 2 years ago and have been on and off it during that time, the longest time off for 7 months when I moved. Yes, the hardest part has been figuring out rates, with not much to go on other than ankles swell up if on too much, and stiffness and weepiness and fatigue etc. etc. etc. if not enough. Plus the pulsatile regimen gives pulses every 3 hours but there’s an option for every 1.5 hours, and I’ve spent a lot of time fussing with whether that makes a difference (and also what time of early morning to start ramping up). However, one thing that I have to say HAS been super is sickness dosing— I doubled my dose (by doubling the frequency) when I had a cold, and it worked great!

        Here’s an example of a 25-mg pulsatile pump regimen: 4.8 mg at 3 AM, 6 AM, and 9 AM; 3.2 mg at noon, 3, and 6 pm; and 0.5 mg at 9 pm and midnight. The highest regimen (40 mg per day) infuses 6, 5.5, and 0.5 mg respectively at those same times.

        It seems like a lot of pumpers are taking 40+ mg, versus the standard oral recommendation of 20 mg. I’d sure like to see some info on whether there’s different absorption sub-Q, or something to explain that. Maybe I’ve been making things worse by being cheap and sometimes using the same infusion site for 6 days? You’d think the subcutaneous absorption would be BETTER, especially given that many people who don’t do well on pills have gastric/absorption troubles. Also, using the stream versus bucket analogy, that it would take less to succeed with a stream than a bucket. If you’ve run into any info or theories why pump doses might be (counterintuitively) higher than standard oral doses, I’d love to hear.

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      2. Hi EL.

        You caught me with a free pocket of energy last message. This one I’ve been a bit slower to process and get back.

        I’m so very impressed by your knowledge and commitment. Lots for me to research and learn about. I’m grateful to you for sharing and I hope others see this info too. I’m thinking of interviewing experienced pumpers for my blog in the future (when my health settles a bit). Let me know if you might be interested. I think it would be helpful to have a series of interviews with pumpers from around the world with different experiences (good and bad).

        My initial pump rates were calculated by Prof Hindmarsh based on my clearance study results. We’re using 24hr saliva cortisone testing to check and calibrate my levels (based on a small number of studies into this). My body is not responding well to reducing the rates so far. It’s early days though. I think it will be good for me to discuss this whole issue in a futute post.

        Yes, I hear that many pumpers do best at least starting on much higher rates than equivalent to tablets, and then can taper down over months or years. Not sure why. Will keep ears open for theories on this. My endo has likened it to people with Cushingsgold weaning down slowly – I wonder if we are weaning our bodies off the heighest peaks we received from tablets (just wild speculation) and the pump is a more constant flow so we need more all day to cope initially – like trying to get a river to flow up near the peak of a mountain.

        On the set changing, I heard a couple of pumpers say that absorption of solucortef can lessen the longer that the site is in place because the tissue starts to heal around the cannula. One pumpers said they can feel a reduction in absorption after 2 days and so change their site every 2 days.

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      3. Hi- Yeah, I got going there!

        Just a quick reply that in searching last night I did find evidence that both growth hormone replacement and thyroid replacement, which people with hypopituitarism deal with, can interfere with cortisol function (a great review paper is 2009 “GH replacement in adults: interactions with other pituitary hormone deficiencies and replacement therapies”)— and got confirmation from my doctor in San Francisco that the concept that people might need more than 20 mg and that other factors could affect the needed amount is not crazy. (He said “It’s all very interesting. There isn’t really a very good science and good old-fashioned doctoring is sometimes the best way to decide on treatment. You have to listen to the patient. This is always been my feeling and it’s one of the reasons I felt like we could try that cortisol pump.”

        Interviews sounds like a great idea. There is so much experience scattered about the Internet! Dusty Hardman’s blog ( http://addisonssupport.blogspot.com/2015/09/rant-bigger-is-not-always-better.html ) was also very helpful in looking into this concept of why we might need higher rates.

        Thank you for the info on infusion site changes!
        Elaine

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