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

Interview Series - A Mother's Perspective

My gorgeous Mother and I in 2015

I  interviewed my lovely Mother about what it is like to have your child diagnosed with Type One Diabetes at the age of 4. We talked diagnosis, coping mechanisms, self-care, third-parties and advice. I hope you enjoy seeing a Mother's perspective of Diabetes.

Question 1. What was the most difficult part of Amber's diagnosis?

In some ways the diagnosis was a relief, because I knew Amber was ill and something was seriously wrong, my mind as a parent went into overdrive. I had some knowledge about what diabetes was, and there was some comforting element in knowing that diabetes can be managed..that was my first reaction. After that it was '..Oh she's only four years old, how are we going to do this?'. I'd say that was my immediate reaction, we simply didn't know what was going on.

Question 2. How did you tell Amber about her diabetes?

Amber was only four so the word 'diabetes' and trying to explain what that is was just not possible. So we said something along the lines of 'The doctors had found out why you feel poorly and you've got to have medicine every day in the form of an injection to make you feel better' (Amber started on twice daily injections).

Question 3. How did Amber take the news?

At the time of diagnosis Amber was 4, so when we first broke the news she didn't understand.. it was no big revelation to her. When it came to do the injections we just kept repeating "The doctors and nurses have said you need to have your injection to make you feel better". We would use a teddy to inject and then we would inject Amber, she would talk to Ruby (the teddy) and support her. Amber cried and yes that was difficult but knowing that Amber had to have it kept me calm but assertive to ensure that Amber knew that she had to have it. To not give her injections was simply not an option.

Question 4. Whilst Amber was growing up, how did you cope with the high and low blood sugars?

We used to test her blood glucose levels for her and that was always tough because she only had little hands. Quite often we would know by Amber's behaviour if she was low or high, particularly if she was low she usually cried and went pale and quiet. Amber wouldn't recognise her own symptoms she would just cry, we tried to teach Amber to be self aware. Sometimes we'd see her hands shake and ask 'Do you feel shaky?'. Hypo was known as 'shaky' for a long time. If Amber was high she would be very angry, shout, drink a lot, her eyes would even go black. She would turn into a completely different person and would always apologise once she felt better. We would try to get Amber to realise that being angry when she was high was not her fault, but she needed to test her bloods and inject so she would feel better.

Question 5. Is there any moments in particular that you remember being upsetting or challenging?

I think the challenging part of T1 Diabetes is that you can do everything by the book but yet sometimes their blood sugar levels are still not right. That was really hard to tell a child who is feeling really crap, as a parent we did everything we could to ensure Amber felt alright, and when she didn't that was tough. Her Dad and I chose for him not to return to work so he was there to take Amber to school, be there after school, and their in the half-terms and holidays. He came to Amber's school to do her lunchtime injection and went on school trips with her to make sure we could give her the most support and the best care. He was here all the time for Amber until she could start to take on that support herself.

This quote makes me think of you Mum.

Question 6. You mentioned earlier about Amber being self aware. At what point did Amber take on that roll of self care?

She began doing her own blood glucose tests at the age of 9 which is absolutely amazing and not long after that she moved to a basal/bolus regime which is when she learnt to inject herself. Amber did her bolus and we would inject her basal for her in her back. She then started to calculate her own carbs and carry her diabetes supplies around with her instead of us taking them. She took on responsibility for her own diabetes treatment with the support of mum and dad but she was making decisions about injecting, when to inject and ensuring she had hypo treatment. So from that side of things Amber was more mature as a 10 year old.

Question 7. How did you explain to third parties about Amber's diabetes?

We had an information sheet in Amber's bag with emergency contact numbers and what to do in an emergency. If she went for a sleepover we would have to talk to their parents to make sure they were happy and also that we were by our phones if Amber needed us. We never met a parent that wasn't happy. When Amber reached an age where she could explain herself then we would encourage Amber to tell her friends parents so they were aware. In terms of teachers we would go in and speak to the school nurse and make teachers aware, especially of hypos. We applied for extra time in her exams to allow for low and high blood sugars. All things that we didn't really know about and found out as we went on. We also kept an eye on our other children and family members for any possible signs of T1D, we would test their blood glucose at the slightest symptom.

Question 8. What advice would you give to parents of newly diagnosed children?

Words we live by..

I think it would be that your child is still your child, she/he has diabetes but first of all, and always first they are your child. There is a danger of seeing the diabetes first. I can remember once Amber came back from a party and we jumped on Amber and said 'What did you eat?' and 'What are your BG levels like?' and then asked 'Did you have a nice time?', I felt quite sad about that because it should have been the other way round. Just don't let it take over your life. While is has to be managed every single day of your son or daughters life, they are more than their highs or lows.
On a positive note, I think it's engendered a very close relationship between Amber and I, it has allowed us to raise money for diabetes charities and taught us not to sweat the small stuff. I also have an auto-immune condition and can tell you that life is worth the living. For Amber it has given her a very different view of life that others may not have and it's made her the person she is today, she's social media-ing, helping others and raising awareness.