My Journey To Insulin Pump Therapy

So when I titled this piece 'My Journey', I wasn't just being sensationalist, although there is an element of that let's not lie, but it's taken me a full year to gain access to an insulin pump, so it feels pretty monumental to finally be here. And by here, I mean 1 week until I start using a pump...(eek!)

My chosen insulin pump (Accu Chek Spirit Combo) on the right,
and my blood glucose meter on the left which acts as a
 remote and connects to the pump via Bluetooth

Firstly, for those of you who don't know, an insulin pump is a small, mobile phone sized device that releases insulin throughout the day. The insulin is provided via a flexible tube (cannula) which is inserted under the skin and has to be changed every 2-3 days. Essentially, it's just a different way to administer insulin for those of us with a dodgy pancreas.

Let's take a look at the steps I have taken to get to this point.

28th February 2016 / Decision Time - Shortly after getting involved in the Diabetes Online Community (DOC), I found myself more accepting of the idea of having a pump where I'd previously been psychologically held back by the thought of constant attachment. I researched and decided the next step in my care; I wanted an insulin pump. At this point I was still under the care of my paediatric team,  I was 17, turning 18 and was going to transition to adult services. So I tried to be clever and did my outright best to get a pump from paediatrics, as I'd heard funding was limited in adults, I was told that I was of low priority for a pump; I don't have any complications and my control is neither extremes, amazing or poor so I should wait until I transition. Deep breath, this road was looking to be longer than I'd hoped.

First infusion set (was very exciting at the time)

10th March / Small Steps -  As a compromise and during my last few months with paeds, I was able to try out my first infusion set which was a huge step for me (see photo.) I spent months chasing my DSN and we decided I would transition early in hopes to get an insulin pump. Between March and June I was waiting to move to adult services, not much I could do here to speed up pump process.

6th June / Taking Charge- I referred myself into the adults 'pump clinic' and had my first appointment with my new team, I had now 'transitioned' my care from one team to another, from a set of HCPs who had known me since I was 4 years old. We agreed at this appointment that I would need to attend an education course prior to starting insulin pump therapy (IPT). The ball was finally rolling and I felt pretty awesome, my motivation was at an all time high as I took the reigns of my own healthcare.

June-October / Request For Support - This is where things got a little complicated, to cut a long story short, because I moved to adult services without the transition service, I got lost in the system and fell under the radar of my adult team. I lost contact and spent the best part of 3 months in diabetic burnout. I was desperate for help and watched any glycemic control I thought I had, collapse. I lost a lot of confidence, any support I had was online, where my blog was thriving, but it was all so fake. It felt wrong to advise others, I needed to regain control of my own life. So between moments of motivation, I mustered the energy to compose a few emails to the adult clinic. Throughout this period I received letters to say that there was progress in terms of getting a place on an education course, but nothing seemed to be moving forward. With the support, encouragement and confidence from those closest to me, I got back in contact with the team, and was introduced to the adolescent specialists. I spent a while re-building any trust I once had, and have solidified my faith in their care since.

8th November / Support Provided - Here is where my hard work begins to pay off, I got an email late one Friday evening saying there had been a dropout in the Nov run of the education course, the only hurdle between me and pump therapy. So I jumped at the chance, the next 5 weeks were spent in weekly sessions learning how to adjust my insulin doses. Albeit information I had heard before, but after being diagnosed as a toddler it was refreshing to hear it all first-hand and see how advice has changed since 2002. I cannot fault my time completing the course, the information I learnt is simply invaluable. There is something to be said for peer-support just 5 minutes from home.

Practising with infusion sets ready for pump start

December / Experiments- Now I had completed the course, I knew the next step was to take control and be proactive, so I decided to jump ahead and spent the first half of the month testing out different infusion sets. I did so in the hopes I can reduce my errors once I begin pumping and to get used to the physical attachment of a wire hanging from my body all the time. In these two weeks I changed my cannula every 3 days, like I would have to do if I were pumping insulin. It was fun, shall we say, you can read all about my challenges in a post I wrote here.

Filling out my 'Pump Goals' prior to an appointment

2nd January 2017 / Paperwork - After a delay in appointments and a few emails back and fourth, I had my first 'pump appointment', and established my goals for insulin pump therapy. Since the start of January I have had weekly appointments with a member of the pump team to fine tune my basal/bolus rates so when I start pump we can be fairly confident with the initial settings. I have to keep a diary of food/activity each day, and I will be wearing Freestyle Libre sensors over the next month.

I've fantasised over the idea of an insulin pump since Feb last year, and now it's real, my official pump start day is the 6th February!! It has required a lot of chasing on my part, and a huge element of being a proactive patient, which isn't for everybody, all the time - why do you think I spent 3 months in burnout?! Once I start pump I have a 6 month trial period, which consists of intense appointments. So it's going to be exhausting but absolutely worth it.

It has been a hell of a ride, and at times I've thought that it's not been not worth it, but we got there in the end. To say I am terrified to start IPT would be an understatement, I have been told that starting pump is like being diagnosed all over again, but I feel confident that I have the best support network around me. There's only three words to end this post, bring it on.

Amber xx

Freestyle Libre - 7 Months On

An arty shot, if you will.

If you are new to The Freestyle Libre you can read about my first impressions and discover the initial problems I faced here. With that aside, I am here to share you where I am, 7 months on, the advantages, disadvantages and my tips if you are thinking about investing in this technology. Which for the record, is very expensive.

I would like to point out here that I do not fault the company, or their product in the slightest, in fact it's quite the opposite. I truly believe the Freestyle Libre Flash Glucose Monitor is a game-changer for many people with Diabetes. As always, my mutterings here on Diabetesgeek are purely my experience alone, you may feel different and that's awesome too.

Months 1-1.8 (Yes I did just do that)
I was swept off my feet and very much enchanted with my new found freedom when I first got my hands on my Libre. You can read a poem I wrote  about how I felt about Libs, a friendly nickname I gave to my handset, we were a great pair for a while. On our first day I learnt the importance of pre-blousing.. I now shout about this to all of my new diabuddies! It was something I was always told to do as a kiddiwink but never did, I learnt very quickly with the Freestyle Libre that spikes are hard to ignore (understatement of the century on my part).
You'll have noticed by now that I am writing in past tense, of which I feel bad.. I still love this technology. I just wish my brain wasn't wired into overdrive. I jumped into using the Libre with little idea of how it would affect my mental health, which ended up turning into a big black hole. I hope some of you planning on buying the Freestyle Libre system take my experience on board. I learnt the hard way, and I write in hopes others don't have to. 

Months 2-5
By the end of my second month using the Libre continuously* I began running into a few problems, which I blogged about (linked at the top of this piece.) In short, I was seeing data I didn't like and I wasn't sure how to cope with it, so I did as any other would, I carried on using the Libre and in turn was overwhelmed with data. I was putting in all the effort and not seeing the results I wanted or deserved. This cycle carried on for months which led me to my longest Burnout period to date- a hellish 3 months, from September right through to December. In that time my mental health turned to shit, my blood glucose levels were fluctuating more than I had ever known and I felt awful. At no point did I completely stop testing my bloods or stop taking insulin, thankfully I've not done that since I was about 8.

I didn't help myself either, which is important to point out here, I lost contact with my diabetic team for several reasons, I hope to blog about it one day. I wanted no input from health care professionals.. I was frustrated, in every sense of the word.
Frustrated this expensive technology seemed nothing but a horrible experience, frustrated that I couldn't handle this by myself, frustrated that I had to reach out for help and frustrated with, what felt like, lack of solutions.
A huge lesson I have learnt retrospectively is this, if you are going to invest in this tech, please please please work in partnership with your HCPs. For your safety, to preserve any blood glucose control you think you have and to keep everyone in the loop, use all the resources you have. Whilst in my 3 months of burnout I fell into some pretty bad habits, most of which I don't feel comfortable enough to talk about on here yet, which could have seriously damaged my health, so please, just keep yourself safe. 

*we shall speak more about this later.

Months 6-7
I began to take breaks between sensors, almost giving myself some kind of messed-up respite from what was supposed to be this grand piece of technology. I found returning to finger-pricks made me feel more free than the Libre did, which is the opposite of what you expect when you first research the tech. Finger-pricking broke me from this cycle of what felt like never ending misery and shitty data. Shitty data I didn't know how to handle. It went from finger prick snapshots which were never awful, to 24 hour graphs of my blood glucose, I saw every missed unit of insulin, every messed-up correction dose and every over-treated hypo. It drove me to the point of insanity. I literally felt like I was on the verge of a mental meltdown, which looking back on it now, was exactly where I was at in my 3 month period of burnout. I'm not sure if my blood glucose levels are genuinely better when finger-pricking, or if I just don't test when I know I've only just eaten and my bloods are bound to be higher than I'd like. Whichever it is, either is better than the crap I was seeing on my daily graphs, sometimes ignorance is bliss.

Moreover, *I felt bad each day I didn't wear a Libre sensor, because my parents were forking out such a lot of money for it, I almost felt obliged to wear them. Listen to your body, you know it better than anyone else ever will.

Luckily, in December I had the opportunity to complete a 'carb counting education course' through my hospital, another topic I plan to blog about in the near future, so many topics, so little time! On said course, HCPs advised I seriously re-considered using the Freestyle Libre because of the unhealthy habits I'd adopted. I think that was the point where I realised my eating habits had become, to put it politely, screwed. I learnt so much invaluable information whilst on the course but mainly that a lot of others get overwhelmed by the data that us T1's are so immersed in, especially when you're not sure what to do with the information you've collated. So I took the advice given, and since I have stuck to finger-pricking alone and have never felt better. 

That is not to say I won't ever use the Libre again, I hope be in a place mentally, where I can make the most of this fabulous technology. I didn't use it under the best of circumstances, given I was not in contact with my HCPs which I do not recommend (another understatement). I had issues with my target range, that's another topic for another day as well as trying to change my diet to avoid spikes, all of which I could have resolved if I was in contact with my team at the hospital. Communication is key, especially when it comes to your everyday health.
I still have two sensors to use, but I will be scanning with one eye shut. I still feel so blessed that my parents are in a position to fund this technology for me. When used correctly, and in partnership with your health care professionals, the Freestyle Libre is a game-changer for most. This attitude I still very much believe in.


To summarise, my Top Tips are as follows..


- I mentioned it earlier, but I'm going to say it again.  If you are going to invest in this technology, please please please work in partnership with your HCPs. They can help you, and if they are not familiar with the Freestyle Libre software, teach them or find someone that can.

A note from me, to you. - A

- You don't have to wear the Libre sensors all the time. Don't feel obliged to wear them just because you are fortunate enough that you can afford them. Order the starter kit, use the first two sensors and test the waters, so to speak. Be sensible, you know your body better than anybody else does.

- Take breaks between sensors. If just for a couple of days, let your brain rest from the constant stream of data. Returning to finger-pricks is not all as bad or as hard work as it seems.

- You're doing great.


If you read to the end of this post then have my many congratulations because I've quite literally written an essay, but as always, even if this just helps one person and they find they can relate, then my time spent brain-farting on a keyboard was completely worth it. Thank you for reading!

Amber xx

Twitter: @diabetes_geek