Saturday, September 28, 2013

My Pump Start Experience - Part 2

Pre-pump start preparation

Try saying that 3 times quickly. ha.

Following on from my part 1 post, here are a few more things I did to prepare myself for the pump training day and pump start. Here are my recommendations:

  • Do the grocery shopping so you will have enough food for healthy easy-to-cook meals in the house for a week.
  • Have a shower the night before pump start. Take your time, wash your hair. Enjoy your last "free shower" for a while. Recognise that the next time you bathe it will be different.
  • Put all the pump supplies and stuff in a box to take to training. Take more, or ask your nurse if you're not sure what to bring.
  • Because I wasn't given a list of what to bring, I needed a few things extra which I only learned about or guessed because of reading blogs. Take the following:
    • Your pump. Duh. But my trainer said it happens. And in one instance a mother of a diabetic child asked if she had to bring her kid!
    • Infusion sets, cartridges, lines.
    • Your CGM.
    • Sensors and inserter.
    • IV Prep wipes (they have adhesive in them, as well as alcohol)
    • Unisolve wipes (for removing sticky things, you won't need it immediately but it's good to have it handy. A must for getting adhesive residue off)
    • Micropore tape (to tape the line to your skin in a safety loop. My first safety loop saved my pump from the toilet on the very first night!)
    • Opsite Felifix tape. (Use this to hold the Dexcom on for longer)
    • Scissors (for various tapes and packaging)
    • A small bottle of hand-sanitiser (alcohol, I got one that has aloe vera in it)
    • A notebook and pen.
    • Your camera/smartphone to take a pic of your first site insertion!
  • Pack your lunch the night before. Everything needs to be carb counted. I have been weighing things all week, and then looking them up on Calorie King. I also started writing the carb counts of food like muesli bars on the individual wrappers, and on the glad wrap of unpackaged foods.
  • Aim to eat similar meals at similar times of the day for a couple of days prior to the pump start, so you know what those foods should do to your blood sugars.
  • Record your blood sugars in as much detail as possible to get a good "before and after" picture.
  • Preferably earlier than the day before pump start: get your HbA1c, get a general medical check done, go to the dentist for your checkup, take your vitamins (if any), stay away from sick folks as you don't want any unplanned sickness while you are learning the pump.

Pump Start Training

My husband works from home mostly, so he was able to drive me to the pump start day at the hospital. There would be two of us being trained by two different pump reps for both Animas and Medtronic. I also knew my DNE would be there.

Well, there were 9 people in that room when I walked in! Me, the other diabetic woman, our DNE (1), two more DNEs (2 + 3) who wanted to learn more about T1 and pumps, two Animas pump trainers and two Medtronic trainers. Plus our endo popped in at one point. Plus me makes 10. There were a total of four diabetics present. The most I have ever experienced as an adult.

I put my huge box of stuff on the floor and started pulling out my Animas box. I felt rather self-conscious as 9 pairs of eyes watched me, and I must say that the other T1D's face was fixated on my pump box. She had the Minimed Paradigm plus their CGM. I opened my box and showed her my pink pump, and I may have detected a little envy? Maybe a little consternation that she had not been offered this pump choice? Or that she had been counselled away from it? Who knows. I could be reading too much into it. Could have just been nerves.

We started off by going over the rough schedule for the day, and introducing everyone. I introduced myself and explained what I did for a career. Our DNE gave us some initial instruction, and we were given out basal rates, I:C ratios, ISF, and BG targets for the first day.

Then we split up into two camps to complete basic training and installation. I can't speak for what happened in the Medtronic training as I didn't see any of it, but everyone was pretty friendly - and nervous! The anticipation! Wow!

I had my Animas trainer, T, and a new Animas trainer, K, who would be doing his very first training session with me. I felt fully fine with this, as T was obviously going to be helping out and watching closely, and I had so many nurses and diabetics to hand that I knew I would be looked after well. One of the other DNE's also joined us, as she (I think) specialised in T2 and wanted to upskill by learning about the pump.

The Animas-camp moved into a smaller room, and K explained that the first thing we would do was install the infusion set, to "get it out of the way, otherwise you won't be able to concentrate". Very cool! I was given a training manual and then we were into the practical stuff.

Very quickly, I learned that humour and nodding and saying "I understand" would be the quickest way through this. Since I had watched so many videos of people doing site changes, there were few pieces of brand new information to me. I had a good overall idea of what was going to happen, and just made sure to ask questions as they occurred to me. It's just, things seemed to take so long, and even when I nodded that I understood, K would still have to explain things in full to me. I expect that as part of the routine there are various things that have to be explained ad nauseum for legal reasons. But it's a small moan really, as the trainers both said I was doing really well all the time.

Best bits

K had two demo pumps, plus I had my real one. Nurse S was offered one pump to use and K took the other. After putting in the battery I learnt how to set my basal rates into the pump and review them carefully.

We started off with washing hands and talking about keeping surfaces and hands clean. And then it was time to put in my first ever infusion site!!!

Looking ever so slightly green, K announced that he would put in a site on himself which surprised me a bit, I was expecting only to be guided through it. I suggested that instead of him doing the whole thing then asking me to repeat a long bunch of steps that rather we do it together step-by-step. Hey, if it works for my students, it should work for me too! hee! They liked the idea so K took a blue Inset 30 inserter, and I took my pink one.

He showed me how to open the inserter pack, and suggested I hitch my skivvy up under my bra so it wouldn't fall down and contaminate the site. I used the alcohol wipe to clean my skin in a spiral motion. And after watching K carefully as he inserted his blue site, it was my turn. I decided that if I just did it, then it would be done. If I screwed it up, so what? I could just try again elsewhere. So I put the little feet of the inserter on my belly, pushed a little bit so the skin bulged, and then squeezed the release trigger. It shot the needle down into my abdomen at an angle, and I sure did feel it go in. But it wasn't super painful. Nowhere near as bad as getting an intramuscular immunisations shot in the arm, for instance. It was worse than a pen injection due to the speed and force, and I think I was quite tense which made it worse. But it was more the force I felt, not pain. The closest I could explain it is if someone pokes you with a wooden toothpick hard but quickly. Overall I was surprised at how quickly it was over and how very little it hurt. In fact I couldn't feel it at all after about 15 seconds. After about 30 seconds, a wave of a dull ache started at the site, the feeling you get when there is something sharp sticking in you, and if you move too far or too fast, it will really hurt. But I wouldn't classify it as pain. More just a warning of potential pain if I moved. I was also quite tense and since I was unsure about how it should feel, I took great effort not to knock it or move my belly muscles.

But it never did get any worse and before I knew it, it was right on to doing my first cartridge fill with a demo cartridge and... "Pretendy Insulin" so labelled because it is in fact an old Novolog vial filled with tap water! This was T's sense of humour and it takes the prize for the cutest thing of the day! :)

After the demo cartridge, it was time to do my real cartridge, with real insulin. Suddenly I was a lot more concerned about the bubbles! K kept telling me to hold the cartridge upright and flick it around in a swirling motion, but I must have been doing it wrong lol. I just wanted to fix it the way I knew works best, from years and years of MDI with syringes!

I loaded the cartridge and then attached the line. And before I knew it, I was pumping insulin. It was all so delightfully easy and pain-free that I couldn't help smiling a huge smile and taking a photo:
First pic of my first infusion site and pumping insulin for the first time evah! I'm sitting down that's why my tummy looks so odd. lol

Worst bits

[I didn't really want to write this bit, mainly because I know one of the people involved has access to this blog. Isn't that always the way. You find yourself censoring things to protect folks in real life. Well, I figure if this is to be an accurate record then it should be honest. The person involved, I'm sure, would be the first to admit that we both have strong personalities, and that we have all made up and are fine now. It's not identifying. But it did affect me terribly at the time so I have decided to write it down. It it's you, well, um sorry? Hey it happened and it wasn't exactly a private exchange...]

After all of the adrenaline of the morning, and after afternoon tea and a second session of training which covered setting all manner of things on the pump, we gathered together in the big room before lunch. We had covered a lot of stuff including putting on the Dexcom, but not boluses. It was the one thing I was suddenly getting some urgency about because lunch was coming up. Earlier in the morning, DNE 1 had asked when we should break for lunch. She suggested 12.30 or 1pm. I raised my hand and suggested that maybe the diabetics should decide, as I ate at 12noon. Well, lunch was late. I was edgy, and in the pre-lunch gathering DNE growled my trainers for not teaching me boluses yet! However, I knew more about the CGM than the other "team" as it turned out. It started to get quite competitive and I did not find that helpful one little bit.

Lunch was short, because.... um the morning session ran late, but for some unknown reason they couldn't give more than 20 mins for lunch??? Anyway, I texted my Hubby to come and pick me up so I could have lunch at home. He was a the front doors in a flash and once we got home (like a 60 second journey! They wouldn't let me walk home!) I heated my lunch, did tests, and discovered that the Dexcom 2hr warm-up time had just finished. So I got distracted, but in a good way! I tested and was low. 4.3mmol/L. Sh*t. Normally I would eat my lunch and have juice and test again some 15 mins later. But I had to get back to training. And I had to use the pump to deliver my insulin according to it's software and algorithms. So I hoovered up my noodles and kiwifruit, and tested again as late as possible. But not long enough, only 10 mins. I was still low. I decided to work out a dose on my iPhone app and just give that manually.

Well, when I got back to training I was going a bit high. Only 12 or something. Not much. But enough for DNE 1 to scold me out in front of everyone and ask my why I had done things the way I did them. And basically tell me I made the wrong decision not to just trust the pump. I was recovering from a low (which she had been made aware of) and was super stressed and nervous about the whole process of changing to the pump. I started to get emotional and I could feel the frustration and anger and tears welling up. When I go low, I lose my words, and I often have an inability to form my thoughts into coherent sentences which actually mean what I am thinking for up to 15 mins post a low. I get severe lethargy and a semi-wet-concrete brain for up to a couple of hours post a low. I was not in a good place to be called out on something as basic as an insulin dose at that moment. I just told her "I can't take this right now!" Thankfully, one of the Medtronic trainers who also happened to be diabetic piped up and said some soothing comforting things, and smoothed things over. I made sure, once I understood where my feeling came from to tell DNE that I understood what she was trying to say to me. I know she was just trying to look after me, but her manner was rough in that minute.

And what were my feelings, you ask? Well, I had spent so long preparing and thinking about the physical aspect of being attached to the pump, that I hadn't considered quite how dramatically it would affect me emotionally.

Having to give over control, completely, to a machine.

In my 25 years with T1D, most of the time either it's been my parents or myself in the driver's seat. I have been working out the carbs, dosing the insulin, and organising all the appointment and treatment since my teens. Giving even part of that up was hard. Once I had had that shown to me, I could actively manage my emotions and make strategies to deal with the changeover. Such as just treating the new pump as an experiment, one that although not without risks, was done in a semi-controlled environment with lots of people around me to help. I would be ok. Suddenly, it seemed do-able.

Things I didn't expect

  • How NOT painful site and sensor insertions would be. Just do them calmly and quickly so you don't tense up. No big deal.
  • How much I was unprepared for the giving-over of control to the pump.
  • How useful all the video-watching and prep I'd done would be. The training is a blur to me now, but it was helpful to see things in real life and to pull and the bits together.
  • How emotional it could get.
  • That my DNE would expect me to run at 4.5 all day. Both the other trainee and I went "you've got to be kidding!" but she assured me it would be fine. And she was right.
  • To have all those people in the room.
  • How unsupported I could feel at times.
  • How very strange it would be to spend a whole 2 days dedicated to diabetes AND NOTHING ELSE.
  • How weird it would be talking to nearly complete strangers about my most personal and intimate moments and choices with diabetes.

What I wish I knew before hand

  • It's quite possible to wear the pump so no-one knows.
  • It also possible to be so comfortable with the pump and dex that you forget you're wearing them.
  • It's super fantastic to have another method to measure my blood glucose, and the Dex certainly gives the crappy Caresens N-Pop a run for it's money! On the very first day the Dex caught multiple lows that the meter didn't show up and I didn't feel. Being able to take preventative action to both lows and highs is amazing.
    Don't expect to come down from highs really fast. Generally I am finding that if I go high (above about 11) then it takes about an hour before I come down, but the drop is more gradual. IOB is excellent and prevent the never-ending roller-coaster of glucose fluctuations.
  • Taking a shower is different, but not bad. It just takes more planning (taping etc).
  • You will still need to be your own advocate for your health, and to take charge of your diabetes.
  • But... it's important to listen and allow the trainers and DNEs to take care of you.
  • Involve your partner, spouse, family, etc as much as possible, and don't be shy to share what you have learnt with them. They are probably quite affected by the whole process and they may be more scared and nervous than you are. Clear communication is very important!
  • Drink lots of water. You can actually see the action of water as it dilutes your blood sugar on the Dexcom graph!
  • That I would get a 2-day migraine from the sudden drop and stabilisation of my blood sugars. Since panadol (acetaminophen) is out of the question with the Dex (and is useless to boot) I had neurofen (ibuprofen).
  • Just how much it would take over my brain. I can talk of little else, to the point where I can be concentrating on a conversation and then I'll just say something totally out of context like "it's really cool being bionic, here let me know you..."
  • How many different names for pumping there are: robot-parts, android, cyborg, bionic. And people's funny responses to seeing the pump first time: "so, you don't have to inject or test your blood anymore?", "oh that will make things so much simpler for you!", "can you be hacked?", "I'm a tax-payer, and you are now my tax-payer funded android. You are a terrible android since you won't grade all these students' assignments for me!", "I think you will be the first to reach the singularity (where the human mind can be uploaded to the computer. It was followed by raised eye-brows when I informed them how I had been already uploading my data", "ooh! Biometric data!".
  • You can do this!

My thoughts now

At the time of finishing writing this post, I have been wearing the pump and dex for 10 days. I have done 4 site changes and one dex change.

I am now very comfortable wearing both, and I have developed a habit of flashing people my belly to show them my cool new robot parts. I even showed an entire class. It prompted a really good discussion and they were all so curious.

As each day went on, things got easier and more familiar. I was at first very tense, both physically and emotionally about having the devices attached, but as I learned to relax into it, things got easier. I treated each new activity as a challenge: first night with the pump, first day back at work, first bike ride, first unbroken sleep, first pump low alarm, first class taught, first shopping trip for clothing, wearing the pump in as many places as possible, stretching (that took me a while! I thought it would hurt lol).

The Dexcom is AMAZING and if I had to pick just one device, it would be the Dex all the way. The pump is allowing me to achieve flat lines in my blood glucose graphs like I've never seen before in my life. With these two devices I am finally able to spot some trends and patterns. When I start to go low, I know roughly how fast I am dropping and how low I am currently so I can take an appropriate amount of juice - not too much.

I am really loving the stability and control I have gained.

My husband keeps telling me he can't believe how much energy I have now. And my semi-continuous headache has finally lifted (you know, the one you get from bouncing between 2 and 20 in a day?)

My family, friends, colleagues and students have all been loving, supportive, or curious. I have not had anyone be negative about it, and I have been able to talk about T1D a lot in this past week. That has to be positive.

I am downloading all my data nightly and uploading it to Diasend. So far I am averaging about 92% in target range. My target is 8 and that is my average reading both from my CGM and blood glucose meter.

For the future

I really hope that this will mean excellent control as we head into IVF soon. It will only be a couple of weeks away now, and we got some more good news: the AMH test came back at 15.35 mmol which is firmly in the green! I was worried about this, but things are all lining up as best they can.

I am really excited about this huge step in my life. Overall things are going incredibly positively, and the pump and CGM together are like having my eyes opened after being blind for 25 years. It's going well. If you are considering doing this, I would love to hear from you. If you have tips and tricks for me - yes, you should so email me! I need to know all your goodness and pick your brain please?! :D thekaitakeblog @ gmail com


  1. I'm so glad you are all set up and it's going well so far! Is it weird to say it's cool!? Cause it is!

    1. Yes it absolutely IS cool! :) The whole things is mighty weird but I am very pleased it's going so smoothly.