This blog was first posted on the Diabetes UK blog site as part of Diabetes Week
It's already well documented that living with diabetes can be a frustrating and challenging experience. I remember thinking when I was diagnosed with Type 1 in 2001 that it was so fundamentally life changing that I wasn't sure I'd ever be able to cope with it.
One of my first thoughts was of a boy who went to my primary school who had diabetes as that was probably my only exposure to someone who lived with the condition. I remembered that had carried a vial of insulin and a large hypodermic needle around with him all the time. That memory convinced me I was doomed, that I'd never be able to manage.
Being here 12 years later to write this blog isn't a tribute to my own incredible ability to overcome the impossible, but a real testament to the power of research into treating diabetes and improving the lives of millions of people.
Recently I became involved in a clinical trial called REPOSE (or The Relative Effectiveness of Pumps over MDI and Structured Education for Type-1 diabetes). The aim of the study is to determine whether an insulin pump provides additional benefit to people with Type 1 diabetes versus Multiple Daily Injections. All participants, regardless of the treatment type they are assigned, also complete a DAFNE course to ensure that structured education is provided.
Whilst a recent report showed that the UK is lagging behind the rest of Europe and the US in terms of insulin pump usage in treating Type 1 diabetes, there have been no trials in adults that compare how well patient fare between MDI and pump therapy when combined with structured education. It's important that research like this is carried out to be able to
Showing posts with label insulin pump. Show all posts
Showing posts with label insulin pump. Show all posts
Friday, 11 October 2013
Tuesday, 30 April 2013
Revisiting REPOSE
This blog first appeared on the Diabetes UK blog site on 30th April 2013
It's been nearly three months since I started using my insulin pump as part of the REPOSE trial I'm taking part in, and I thought it was about time I did a bit of an update on how things are going.
I think the first thing to say is that whilst it's only been three months, it feels like a lifetime - and in a good way too. You might recall that I was somewhat apprehensive about making the switch to a pump, a natural reaction to changing the way I've looked after myself for the last 10 years. I'm happy to say that, at the moment, those fears were misplaced.
That's not to say that the transition was an overnight success, or that I've not had a few wobbles, but overall I feel like I've had a real, noticeable improvement in how I've felt which can't be a bad thing.
It's hard to say what exactly the cause of that is. It would be easy to attribute it to the pump because that's the most obvious change, but there are a lot of other smaller changes I've made since I've been on the study which have probably had an effect.
Obviously I've attended a DAFNE course which, as I mentioned in a previous blog was an incredible experience and allowed me the time and opportunity to learn about some of the key things I'd either never been told, or had long since forgotten. It was also really good to meet other people with type 1 and share some experiences.
I've also been recording my blood glucose levels, carbohydrate portions and insulin doses in a daily diary - something I've not done since I was diagnosed nearly 12 years ago. I think that must be having some kind of effect as it lets me see the patterns over a few days rather than relying on memory which I've always done in the past. A knock-on effect of that is that I'm testing my blood glucose more frequently than I ever have - from the dark days of a couple times a week a few years ago to at least five times a day now. I take my testing kit with me everywhere now and that's certainly something I've never done before.
Having the pump gives me the ability to control my basal insulin more effectively and working through that process has been a real eye opener. I wasn't previously aware of the "dawn phenomenon" (where your blood sugar can rise as you wake up) and going through periods of carb-free eating to understand what my basal levels should be showed me just how differently my body reacts to insulin at different times of the day. Discovering I need to double my basal doses throughout most of the morning, just to stay level was a bit of a shock!
Whilst I do feel very comfortable with the pump (sometimes I genuinely forget I'm wearing it and panic that I've left the house without my insulin), I think it's worth looking at a couple of the 'negative' aspects of it as well.
Being wired up to something 24/7 is a constant reminder that you have type 1 diabetes (I joked recently that I'm effectively battery operated these days). Whilst it's not something that particularly bothers me most of the time, it does make it a little harder to forget on the occasions that you'd like to.
On a daily injection regimen, there was always a small chance that you might inject somewhere that might mean the insulin didn't work as effectively as it should, but it was unlikely that would happen for every injection in a given day. With the pump, as you place the cannula for three days a time, if you hit an ineffective injection site, all your insulin goes through there for a few days (unless of course, you notice, and change the cannula). You also run the risk of the cannula not being inserted properly but that's possibly a story for another time.
The overall aim of the REPOSE study is to determine whether insulin pump therapy is more effective at treating people with type 1 diabetes. Whilst I think it's a quite early to make any definitive statement, I know that so far I feel like it's had a positive effect on me so far and hopefully that will continue into the future.
It's been nearly three months since I started using my insulin pump as part of the REPOSE trial I'm taking part in, and I thought it was about time I did a bit of an update on how things are going.
I think the first thing to say is that whilst it's only been three months, it feels like a lifetime - and in a good way too. You might recall that I was somewhat apprehensive about making the switch to a pump, a natural reaction to changing the way I've looked after myself for the last 10 years. I'm happy to say that, at the moment, those fears were misplaced.
That's not to say that the transition was an overnight success, or that I've not had a few wobbles, but overall I feel like I've had a real, noticeable improvement in how I've felt which can't be a bad thing.
It's hard to say what exactly the cause of that is. It would be easy to attribute it to the pump because that's the most obvious change, but there are a lot of other smaller changes I've made since I've been on the study which have probably had an effect.
Obviously I've attended a DAFNE course which, as I mentioned in a previous blog was an incredible experience and allowed me the time and opportunity to learn about some of the key things I'd either never been told, or had long since forgotten. It was also really good to meet other people with type 1 and share some experiences.
I've also been recording my blood glucose levels, carbohydrate portions and insulin doses in a daily diary - something I've not done since I was diagnosed nearly 12 years ago. I think that must be having some kind of effect as it lets me see the patterns over a few days rather than relying on memory which I've always done in the past. A knock-on effect of that is that I'm testing my blood glucose more frequently than I ever have - from the dark days of a couple times a week a few years ago to at least five times a day now. I take my testing kit with me everywhere now and that's certainly something I've never done before.
Having the pump gives me the ability to control my basal insulin more effectively and working through that process has been a real eye opener. I wasn't previously aware of the "dawn phenomenon" (where your blood sugar can rise as you wake up) and going through periods of carb-free eating to understand what my basal levels should be showed me just how differently my body reacts to insulin at different times of the day. Discovering I need to double my basal doses throughout most of the morning, just to stay level was a bit of a shock!
Whilst I do feel very comfortable with the pump (sometimes I genuinely forget I'm wearing it and panic that I've left the house without my insulin), I think it's worth looking at a couple of the 'negative' aspects of it as well.
Being wired up to something 24/7 is a constant reminder that you have type 1 diabetes (I joked recently that I'm effectively battery operated these days). Whilst it's not something that particularly bothers me most of the time, it does make it a little harder to forget on the occasions that you'd like to.
On a daily injection regimen, there was always a small chance that you might inject somewhere that might mean the insulin didn't work as effectively as it should, but it was unlikely that would happen for every injection in a given day. With the pump, as you place the cannula for three days a time, if you hit an ineffective injection site, all your insulin goes through there for a few days (unless of course, you notice, and change the cannula). You also run the risk of the cannula not being inserted properly but that's possibly a story for another time.
The overall aim of the REPOSE study is to determine whether insulin pump therapy is more effective at treating people with type 1 diabetes. Whilst I think it's a quite early to make any definitive statement, I know that so far I feel like it's had a positive effect on me so far and hopefully that will continue into the future.
Wednesday, 6 February 2013
DAFNE
This blog first appeared on the Diabetes UK blog site on 6th February 2013
As part of the REPOSE trial I talked about last month, I recently attended a DAFNE course. I'll be honest and say that a couple of weeks beforehand I was still pretty skeptical about attending. Not so much because I didn't think I'd get any benefit from it, but more that I'd never been given any information about what DAFNE was beyond "it'll help with your carb counting" and couldn't understand how it was a five day course.
That said, after I'd had the pump on for a few days, I was really eager to get started and by the time the course started I honestly couldn't wait. I didn't feel too apprehensive at the start, as I'd already met half the people on the course when we'd had our pump induction, and I knew that everyone there was in the same position as I was.
I thought the DAFNE course (Dose Adjusted For Normal Eating) itself was very well structured. We followed a daily timetable with 4-5 sessions per day, building on regular daily topics such as insulin dose adjustment and carb counting/nutrition as well as discussing other topics such as alcohol and exercise.
For the afternoon session on the second day, we were invited to bring along a family member to give them the opportunity to see what the course entails, and to speak openly about their experiences of living with someone with diabetes. I think that helped a lot as it allowed us to reflect on what those we love have to deal with, which I would guess is a point of view we don't often stop to consider. I think that afternoon worked really well and having everyone participate in the exercises was great.
What I found surprising (and a tad embarrassing) was the amount of the history/biology about diabetes that I either didn't know or that I'd forgotten. While I suppose it's all a matter of personal preference, I enjoyed the sessions that touched on that information as I felt like it provided a great base for all the other topics we were discussing.
There were, of course, some more difficult sessions, and the one we spent discussing the long term complications of diabetes could have been uncomfortable to talk about. We spent the time in two teams, playing a game of which complications could be specifically diabetes related, how they were caused and what could be done to prevent them. It lightened the mood and allowed us to learn at the same time.
I think as a group we all agreed that being in a safe, open and honest environment with people all in the same situation was one of the best things about the week. As I may have mentioned previously, I've not actually met anyone with Type 1 diabetes before and so to be able to share experiences, tips and frustrations with a group was such a positive thing. I was also relieved to find out I'm not the only one who sometimes forgets to change needles and lancets as often as I should!
As part of the course (and over the next two years as part of the trial) we are all recording our BG readings, carbohydrate portions and insulin doses on a daily basis. We began and ended each day with a review of the numbers. I think that really helped to build a great spirit in the group and allowed us to share advice with each other. It was pretty nerve wracking presenting your numbers back to the group for the first time, but by Friday, it was an experience we'd all got into and were going to miss quite a lot.
Being in that environment gave everyone a lot of confidence to speak up and discuss their own situations without feeling judged or under pressure. That similar feeling when sharing BG levels (some not always the numbers you'd hope for) was valuable in discussing our progress.
It would be remiss of me to talk about the course, the environment and the structure that allowed us all to benefit so much from the week without a mention for our DAFNE Educators. We were lucky to have three Educators supporting our course all week, two diabetes specialist nurses and a dietician. Their enthusiasm and encouragement kept us going for the week and I personally think they did so much to help foster the environment that allowed the course to work so well. Thank you Carolin, Val and Val.
After a full week using the pump with insulin I'm starting to get accustomed to it and DAFNE has put me in an excellent position to feel confident using it and adjusting my doses where necessary. On a personal level, one of the hardest things I've had to do is learn to curb my desire to try and fix everything at once and adopt a more patient and measured approach to fine tuning my regime. I'm not quite there yet, but having the confidence and knowledge to be able to make changes should hopefully mean I'll have all my BG levels within target very soon.
As a final word, I'd encourage anyone to follow this link to the DAFNE User Action Group’s e-petition and sign it to lobby for a centrally funded diabetes education programme. Studies have shown that not only does education help diabetics manage their condition with better glycaemic control and fewer hypos, but that the education will effectively pay for itself within five years. Please take the time to follow the link and encourage as many others as you can to do the same.
As part of the REPOSE trial I talked about last month, I recently attended a DAFNE course. I'll be honest and say that a couple of weeks beforehand I was still pretty skeptical about attending. Not so much because I didn't think I'd get any benefit from it, but more that I'd never been given any information about what DAFNE was beyond "it'll help with your carb counting" and couldn't understand how it was a five day course.
That said, after I'd had the pump on for a few days, I was really eager to get started and by the time the course started I honestly couldn't wait. I didn't feel too apprehensive at the start, as I'd already met half the people on the course when we'd had our pump induction, and I knew that everyone there was in the same position as I was.
I thought the DAFNE course (Dose Adjusted For Normal Eating) itself was very well structured. We followed a daily timetable with 4-5 sessions per day, building on regular daily topics such as insulin dose adjustment and carb counting/nutrition as well as discussing other topics such as alcohol and exercise.
For the afternoon session on the second day, we were invited to bring along a family member to give them the opportunity to see what the course entails, and to speak openly about their experiences of living with someone with diabetes. I think that helped a lot as it allowed us to reflect on what those we love have to deal with, which I would guess is a point of view we don't often stop to consider. I think that afternoon worked really well and having everyone participate in the exercises was great.
What I found surprising (and a tad embarrassing) was the amount of the history/biology about diabetes that I either didn't know or that I'd forgotten. While I suppose it's all a matter of personal preference, I enjoyed the sessions that touched on that information as I felt like it provided a great base for all the other topics we were discussing.
There were, of course, some more difficult sessions, and the one we spent discussing the long term complications of diabetes could have been uncomfortable to talk about. We spent the time in two teams, playing a game of which complications could be specifically diabetes related, how they were caused and what could be done to prevent them. It lightened the mood and allowed us to learn at the same time.
I think as a group we all agreed that being in a safe, open and honest environment with people all in the same situation was one of the best things about the week. As I may have mentioned previously, I've not actually met anyone with Type 1 diabetes before and so to be able to share experiences, tips and frustrations with a group was such a positive thing. I was also relieved to find out I'm not the only one who sometimes forgets to change needles and lancets as often as I should!
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Being in that environment gave everyone a lot of confidence to speak up and discuss their own situations without feeling judged or under pressure. That similar feeling when sharing BG levels (some not always the numbers you'd hope for) was valuable in discussing our progress.
It would be remiss of me to talk about the course, the environment and the structure that allowed us all to benefit so much from the week without a mention for our DAFNE Educators. We were lucky to have three Educators supporting our course all week, two diabetes specialist nurses and a dietician. Their enthusiasm and encouragement kept us going for the week and I personally think they did so much to help foster the environment that allowed the course to work so well. Thank you Carolin, Val and Val.
After a full week using the pump with insulin I'm starting to get accustomed to it and DAFNE has put me in an excellent position to feel confident using it and adjusting my doses where necessary. On a personal level, one of the hardest things I've had to do is learn to curb my desire to try and fix everything at once and adopt a more patient and measured approach to fine tuning my regime. I'm not quite there yet, but having the confidence and knowledge to be able to make changes should hopefully mean I'll have all my BG levels within target very soon.
As a final word, I'd encourage anyone to follow this link to the DAFNE User Action Group’s e-petition and sign it to lobby for a centrally funded diabetes education programme. Studies have shown that not only does education help diabetics manage their condition with better glycaemic control and fewer hypos, but that the education will effectively pay for itself within five years. Please take the time to follow the link and encourage as many others as you can to do the same.
Whilst I may have been skeptical before I started, I'd nopw say I'm a huge DAFNE advocate! I'd be keen to hear on your own experiences of diabetes education courses, DAFNE or others.
Friday, 18 January 2013
The insulin pump
This blog first appeared on the Diabetes UK website on 18th January 2013
As I mentioned in one of my previous blogs, I'm taking part in a clinical trial. It's called the REPOSE (Relative Effectiveness of Pumps over MDI and Structured Education) trial and is basically design to determine whether or not insulin pump therapy is more effective at treating adults with T1 diabetes. The trial splits particpants into two groups, half are randomised to receive an insulin pump and half continue with their daily injection regime. Everyone then attends a DAFNE course. You can read more about the trial on the National Institute for Health Research website.
I've been randomised to the pump half of the group and yesterday I spent the afternoon learning how to load operate, fill and attach the pump. It's currently filled with saline so it gives us chance to get used to wearing the device and having the cannula attached without actually using it to medicate. It's a Medtronic Paradigm Veo pump which you can find out more about on the Medtronic website
My DAFNE course starts at the end of January and I'll switch over to insulin the night before it starts. We'll then go through the DAFNE course getting support for the first week before we're left to fly solo.
I wrote in my own blog before I'd had my hospital visit about how I felt about making the change. I'm going to discuss my first impressions of having the pump and the "induction" process here.
Firstly there's a LOT to take in. To get the pump operational, you need to fill a new reservoir, tell the pump to rewind itself (similar to retracting the plunger on a pen), attach the infusion set (i.e. tubing) to the pump and insert the cannula into your stomach. Of course it's one of those things that will become second nature pretty quickly, but I imagine the first time I try it by myself will take a while.
Secondly, as I alluded to above, there's a lot of stuff needed to make all this work. The picture below shows you the contents of the goody bag I brough home from the hospital
As you can see, there's a lot more consumables required for a pump than for a pen!
Inserting the cannula was a bit daunting. As I think I mentioned before, I'm not actually very good with needles and I had a slight flash of wooziness as I was doing it but thankfully that passed. It's never good to be the one who passes out during the induction!! I remember having the same feeling the first time I used an insulin pen and now I don't think twice about that. I think removing the cannula for the first time is probably my last real challenge but as they stay in for 2-3 days at a time, I've not got that far yet!
I don't really notice the pump during the day which surprised me. I thought I'd be a lot more conscious of the device (currently clipped onto my belt) and the cannula than I actually am. There's a bout 2 feet of tubing which can be a bit tricky to conceal but it's nothing major. It was a bit of a broken night's sleep last night but that was to be expected. I'm going to try running with it tonight and I'm ordering a pouch I can wear to keep it a bit more concealed so I'm less likely to knock it.
Whilst the overall induction process took a lot out of me, I woke up feeling positive about the change. I've definitely got a steep learning curve ahead of me, but I see it as something to embrace rather than be afraid of. I'll write a follow up after DAFNE when I've been using the pump to actually control my diabetes and I'll be able to give an appraisal on how well the first week or so has gone.
As I mentioned in one of my previous blogs, I'm taking part in a clinical trial. It's called the REPOSE (Relative Effectiveness of Pumps over MDI and Structured Education) trial and is basically design to determine whether or not insulin pump therapy is more effective at treating adults with T1 diabetes. The trial splits particpants into two groups, half are randomised to receive an insulin pump and half continue with their daily injection regime. Everyone then attends a DAFNE course. You can read more about the trial on the National Institute for Health Research website.
I've been randomised to the pump half of the group and yesterday I spent the afternoon learning how to load operate, fill and attach the pump. It's currently filled with saline so it gives us chance to get used to wearing the device and having the cannula attached without actually using it to medicate. It's a Medtronic Paradigm Veo pump which you can find out more about on the Medtronic website
My DAFNE course starts at the end of January and I'll switch over to insulin the night before it starts. We'll then go through the DAFNE course getting support for the first week before we're left to fly solo.
I wrote in my own blog before I'd had my hospital visit about how I felt about making the change. I'm going to discuss my first impressions of having the pump and the "induction" process here.
Firstly there's a LOT to take in. To get the pump operational, you need to fill a new reservoir, tell the pump to rewind itself (similar to retracting the plunger on a pen), attach the infusion set (i.e. tubing) to the pump and insert the cannula into your stomach. Of course it's one of those things that will become second nature pretty quickly, but I imagine the first time I try it by myself will take a while.
Secondly, as I alluded to above, there's a lot of stuff needed to make all this work. The picture below shows you the contents of the goody bag I brough home from the hospital
As you can see, there's a lot more consumables required for a pump than for a pen!
Inserting the cannula was a bit daunting. As I think I mentioned before, I'm not actually very good with needles and I had a slight flash of wooziness as I was doing it but thankfully that passed. It's never good to be the one who passes out during the induction!! I remember having the same feeling the first time I used an insulin pen and now I don't think twice about that. I think removing the cannula for the first time is probably my last real challenge but as they stay in for 2-3 days at a time, I've not got that far yet!
I don't really notice the pump during the day which surprised me. I thought I'd be a lot more conscious of the device (currently clipped onto my belt) and the cannula than I actually am. There's a bout 2 feet of tubing which can be a bit tricky to conceal but it's nothing major. It was a bit of a broken night's sleep last night but that was to be expected. I'm going to try running with it tonight and I'm ordering a pouch I can wear to keep it a bit more concealed so I'm less likely to knock it.
Whilst the overall induction process took a lot out of me, I woke up feeling positive about the change. I've definitely got a steep learning curve ahead of me, but I see it as something to embrace rather than be afraid of. I'll write a follow up after DAFNE when I've been using the pump to actually control my diabetes and I'll be able to give an appraisal on how well the first week or so has gone.
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