Tuesday, 31 January 2017

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!)

Related image
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

1 comment:

  1. Good luck with your pump start day. Always here if you need advice or a listening get ear Type1Bri x