Sarah

Age at interview: 36

Age at diagnosis: 7

Brief Outline:

Since diagnosis and until she was sixteen years old, she was on a two daily injections of insulin. Until her early teens, she had well-control diabetes, but then it began to slip. She found her insulin regimen oppressive and limiting, so when it was changed to short-acting and long-acting analogue insulin she had a sense of freedom that she had never experienced before in relation to food and mealtimes. The problem was that around the same time she started to be concerned about her weight and decided to go on a diet. That was the start of her eating disorder that was to last for several years. She realised that she needed help and talked to her GP, whom she trusted. Eventually she was able to find a psychologist that worked with her and helped her overcome her eating disorder. Unfortunately, she developed diabetes-related complications which affected her eyesight. She was registered blind at the age of 23. She currently uses an insulin pump and her control is very good. This is a follow-on interview with Sarah. We first interviewed Sarah at the age of 27 (Interview 32).

Background:

Performing artist. Shares a house with a friend. Her advice to other young people who are not doing their insulin injections is to find the courage and to seek help as soon as possible.

More about me...

This is a follow-on interview with Sarah. We first interviewed Sarah at the age of 27 (Interview 32).

Sarah’s life style as a performing artist involved lots of travelling and an inadequate diet that was making it difficult for her to control her diabetes. Her nurse advised her to consider using an insulin pump to improve diabetes management. Sarah agreed and obtained funding without much delay. She is registered blind. 
  
The first year when Sarah started using the insulin pump was a period of trial and error. She found that there was a lot to learn and that first year on the insulin pump was hard. She had to do hourly blood tests for several months. These blood tests helped the diabetes team to programme the insulin pump to drip feed the amount of insulin Sarah needed for every hour, taking into account what her blood sugar levels and her hormonal activity were doing at any particular hour. Every time she ate, she had to give herself extra fast acting insulin to account for the food eaten. If there was one unit extra or one unit less, it affected her blood sugars a couple of hours later. During that year, Sarah also had to fast on a few occasions, skipping breakfast or lunch or dinner for two days and doing hourly blood test for a couple of days to know what her morning and lunchtime and dinner blood sugars were doing, and to programme the insulin pump accordingly. So, it took a long time to get everything working well and to learn all she needed to know to feel confident about using an insulin pump. It also involved changing her hectic life style for a more slow-paced one.

Throughout, Sarah has felt very well supported and reassured by her diabetes team. She had her nurse’s personal contact details in case something went wrong or if she needed advice outside working hours. Once, Sarah ended up in hospital with diabetes ketoacidosis (DKA) due to a needle blockage. Later, the diabetes care team explained why it had happened and showed her what to do if it happened again. On another occasion, Sarah by mistake used Lantus (slow acting insulin) cartridge in her insulin pump instead of the fast acting one; Humalog so her blood sugar level went very high. Sarah found the episode embarrassing, but it got quickly sorted by her diabetes nurse who put in the correct insulin cartridge.  

Sarah finds the insulin pump ‘brilliant’ because it can be programmed for both inactive and active periods of the day. For instance if she is ill she programmes it to give her extra insulin and if she does exercise she reduces the insulin an hour before. So in both situations her blood sugars are kept at a good level. Sarah stresses that insulin pump therapy requires commitment and knowledge on the part of the user. 

Sarah feels that her insulin pump, her diet and exercise regimen and the use of herbal therapy are all helping to maintained good control. She says that the ‘downfall’ of the insulin pump is the need for more blood tests but that the bonus is that it helps her keep a good HbA1C level. Since she went onto the insulin pump, she has kept her HbA1C below eight.

Sarah uses the D-Tron Plus insulin pump that she learnt to use it by touch and counting clicks, but as it was being discontinued, she is currently training on a new model. Because of her poor eyesight, she finds the training for the new pump trickier – she has to go through more manoeuvres before she gets to the same place on her D-Tron Plus. She has been training for several months and her diabetes team have told her they won’t transfer her until she feels completely up to speed with the new one.

Sarah feels that the insulin pump therapy gives her the diabetes control she needs to carry on doing what she enjoys most, namely acting and singing.

Sarah talks about the type of pump she is using at the moment and the training she has been getting in preparation for its replacement.

The type of pump I use at the minute is a D-Tron Plus, apparently I’m one of two people in Europe that is left on this pump [laughter] apparently it’s a dinosaur but that’s because [laugher] with my sight problems I’ve learnt how to use it just by feel just by counting clicks and all this all this sort of kind of thing so I’ve, I’ve not really wanted to move pumps but of course it’s being discontinued so I’m actually training on another pump at the minute to transfer in September.

Which type of pump?

It’s an Animas pump the new pumps an Animas - I think. It’s one of these new fancy blue tooth ones that plays tunes and things [laughter].

How are you finding the training for this one?

I’m finding the training it was a bit tricky at first because there are more manoeuvres on the pump to get to the same place and it’s a bit tricky with sight issues but I’m finding it a lot easier now that I’ve learnt, I've been training on it for a few months now so and they’re not going to transfer me until I'm completely up to speed with it all so yeah it’s taken a while but I’ve got there I think.

Sarah’s new pump has big letters that she can read more easily and can alert her of any problems with the pump such as air bubbles in the cartridge.

Do you have a voice reminding you or a kind of text?

No its text, I’m hoping somebody will invent a voice, a voice pump quite soon.

Yeah I mean with instructions

So I felt a lot more confident migrating because I was really nervous at first that’s why I’ve, I‘ve been prolonging it but it’s got to the point where you know, the technology moves on so I have to move on and it’s not been as terrifying as I thought it would be actually especially with the representative helping me out step by step by step. And I’ve also got my diabetes nurse as well who’s supporting me and she’s, in fact I had to have a check in with her a couple of days ago and she had to observe me doing all these new manoeuvres on the new pump so that she was confident that I knew what I was doing and they weren’t going to let me loose onto something that was going to put me in hospital, so.

So the training for the new pump has involved me working with one of the Reps for the pump company and she’s been actually coming out to my house every week and showing me new things on the pump and so she’ll show me something and then we’ll go over it and go over it and go over it and then we’ll go over it again the next week and then once I've learnt that manoeuvre she’ll move onto the next thing that I need to know. So it’s been it’s been, it’s taken a while cos I’m not a technical person and it, it has been, when I’ve, when you’ve been used to something that’s quite simple in comparison it’s a bit tricky to then go to something that’s slightly more complicated. But as far as the screen for the new pump is concerned they have made the text a lot bigger so I can actually use my magnifier with the text and see the text on it. Which is a good thing 

I think I have definitely enough support my, my team are fantastic I couldn’t wish for anymore. Information about it I haven’t had lots of information about it but then I've not really felt the need I guess, for me it’s about how the pump works and is it functional, you know, can I handle the functions on it and can I see well and the other, I suppose the other things is as well is this pump that I’ve chosen the cartridge, it’s a cartridge change whereas the other pumps you had to fill the cartridges up with a syringe so with regards to air bubbles and things like that I wouldn’t have seen them so, you know, this was another factor about the, about this particular pump that was attractive that you could just stick a cartridge into it and that was it done.

Sarah says that the first year was a difficult one because it required her to do lots of blood tests and skipping meals to adjust the insulin dose to meet her needs.

So the first year of going onto the pump was, there was a lot of difficulties because it takes a while to stabilise everything because there’s no background insulin and you're just on a fast acting insulin which is drip fed into you every hour you have to know what your blood sugars are doing every single hour of the day so that you can adjust the pump accordingly because it will drip feed what you need for that hour as a background insulin and then obviously when you eat your bolus you give yourself extra insulin for the extra food. And if there’s one unit out somewhere it can obviously affect the blood sugars a couple of hours later, so there was a lot of trial and error a couple of hospital trips having to log everything down constantly and do blood tests every single hour probably for the first several months sporadically. 

So when you first go onto it you have to check the blood sugars every single hour so that you know, what’s happening and the diabetes team can adjust it accordingly. You also have to fast so you can’t have; say you want to get your morning blood sugar right you need to know what’s happening with your blood sugars anyway with no food in your body so that the pump can be programmed. So I’d have to skip breakfast for a couple of days and do blood tests all through the morning to check what was going on and to check that the, the insulin level was right for those hours in the morning and then when that was sorted out you would have to skip lunch for a couple of days so you knew what was going on at lunchtime and then obviously after that same with tea so it took a long, long time to get everything stabilised and I’d say really probably the best part of a year to be honest.

Sarah feels that she can control her highs much better on insulin pump therapy but warns that it is essential to learn to use it correctly because it only uses short-acting insulin.

The brilliant thing about the pump is if you’re ill you can programme it to give you extra insulin and it will keep your sugar level or if you do lots of exercise you can reduce the insulin pump an hour before and it will keep your blood sugars level. It’s great for that but you have to know what you’re doing with it because it’s very dangerous if anything goes wrong your blood sugar can rise really, really quickly obviously because it’s a fast acting insulin and it goes out of the body. So because I was so active there was a lot of factors that had to deal with and get used to [laughter] you know, things like changing the cartridges and needles and tubes and all the rest of it there was a lot to learn but it, if you can stick through it it’s absolutely, well it’s really worked for me, you know, with my lifestyle because sometimes I’d come off stage and I'd have a, my blood sugar would be through the roof because of adrenalin and I couldn’t really cope with that very well with injections. But with the insulin pump if I can feel my adrenalin level rising I’d give myself a couple of extra units before doing something and then it counteracts the adrenalin and then my blood sugars perfectly level afterwards, it’s fantastic.