Diabetes 1 Now Study

Last week was completely mental for me. Definitely not the life of a stay at home parent and way too  exciting. Wednesday, a bunch of us diabetes advocates went to Leinster House to meet with our TD’s and Senators. This is the equivalent of meeting with congress in the US, kindof. I won’t go into detail here but if you're interested in what happened I posted about it here on Thriveabetes last Tuesday.

Thursday was the complete opposite, live moving from a developing country to a developed one. One day, I was asking government to approve the funding needed to improve our diabetes services, the next, I was in the world of research and science. Not a world I’m very comfortable in but I learned a lot about peer support and specifically this research project that Prof Sean Dinneen is leading on how to create a programme for young adults living with type 1 diabetes called D1 Now Study.

“This event was to provide a forum, lead by a diverse group of keynote speakers including Young Adult with T1D, for sharing experiences and developing ideas around the management of t1d during the challenging years of young adulthood.”

It was a jam-packed day with lots of international studies talked about from around the world about type 1 diabetes and their findings.

From The Role of Family in Supporting the Young Adult with Diabetes by Clea DeBrun Johansen from Denmark Diabetes Academy.

Among this study’s findings were that “The influence of the family continues to be very prominent during emerging adulthood, especially the college years.” Her study also concluded that; - Parents play an important, yet complex, role for emerging adults with type 1 diabetes. - Parents can contribute positively to diabetes self-care and psychological well being. - Parents can also negatively influence life with diabetes for emerging adults (absence, disinterest in diabetes, acting in a controlling manner). Emerging adults do not want to be too dependent on their parents - they want parents to be available when needed.

Clea ended with this quote but I would argue that you can do diabetes alone but nobody wants to.

Next up was Barbara Johnson who discussed WICKED, a new diabetes education programme in Sheffield. This has to be the coolest name for diabetes education. EVER!

Workin with Insulin, Carbs, Ketones and Exercise to manage Diabetes.

Prior to developing WICKED, Sheffield realised that young adults were taking responsibility for their diabetes often when changes are happening - starting work, moving away to uni, drinking alcohol, having sex and that they may not have received education targeted at them before. They asked for education that was relevant to them.

Will Hadfield from King's College Hospital, London, told us about their Transition Clinics for adolescents with diabetes.

His description sounded very much like an afterschool club with peer activities organised by the patients. He also mentioned that a large number of young adults don’t want to received anything diabetes related in their social media feeds. I can understand that they want to keep at least one zone or area of their lives free of diabetes. I have some of those too.

Sarah Simkin from Jigsaw Galway gave a very enlightening talk about how their

A Service Designed by Service Users.

From the design and layout of the building to how the service would be delivered. They really adopted the “Nothing about us, without us” motto that has been circulating for a couple of years and they owned it.

Young Adults with Diabetes Panel (YAP)

Then we heard from the first of two young adults with diabetes who are involved in the D1 Now study. Monica Mullins, a student in Galway, told of how she became a member of the Young Adult Panel (YAP) and the training they received to become researchers. There was a lot of training and it does make them more effective in the research but now I feel that they have altered their typical YA with diabetes demographic, making them not so typical now. Maybe an an additional YAP is needed so that they research team learn to communicate with them.

Our second voice of diabetes, Liam McMorrow designed a survey on “Understanding Young Adults preferences for Diabetes Clinic care”. It was really interesting and I had a couple of questions about his fantastic questionnaire but there wasn’t enough time to answer many questions.

CHOICE

Last but not least was David Chaney who is the National Director of Diabetes UK Northern Ireland and the only other Irish person I met at the Friend for Life Diabetes Conference in America last summer. David, with diabetes teams across Northern Ireland, developed CHOICE, (carbohydrate and insulin collaborative education). CHOICE is a structured education programme for children and young people with diabetes (aged 0-19 years) and their parents / carers.

I don’t think there is a parent of a child with diabetes in Ireland who does not know about CHOICE. David took us on the journey of how CHOICE came to be and how it has developed and adapted to meet the needs of children and young people with diabetes.

He told us that when a child is diagnosed with diabetes all the education is directed towards the parents, so when a child transitions into the adolescent and young adult service we expect them to have absorbed all that information by osmosis. Barbara Johnson earlier reinforced this point. David believes, as many of us do, that diabetes education is the cornerstone to good diabetes management.

We are kind of putting our young adults with diabetes into the driving seat of their diabetes without giving them a few lessons and a bit of theory. But, you wouldn’t put a person in the driving seat without giving them a few lessons and a bit of theory first. Then as their confidence grows the diabetes team backs away but if there whenever they are needed. CHOICE is teaching adolescents and young adults to drive their own diabetes. David also provide The Best Slide of the conference in my opinion. “If HCPs don’t provide diabetes education, others will” 

I did get a little frustrated and “irked” about half way through the conference because it was starting to feel like I was being talked about while in the room but not being included in the conversation. Maybe I needed some YAP training to fully participate? Again, it’s not a world I’m very familiar with so maybe that was it? I also wasn't able to attend the Hackathon that followed the Conference. And I am looking forward to seeing where the research goes and how it develops.

On a personal note the stress of travelling across the country, plus trying to find "volunteers" to look after my children had left the building, along with the high blood glucose numbers:-)

Things I've Learned about My Diabetes with a CGM

I have been using a Continuous Glucose Monitoring device (CGM) for six months and I feel that I have enough information now to share what I have learned about my diabetes management in those short months. A couple of weeks ago I shared how I came to get my hands on this little golden nugget and you can read about that here.

So here it goes, in no particular order, what I have learned.

Rapid acting insulin is not that rapid at all!

If my blood sugar levels dare to go ⇑ and beyond, it could take up to 4 - 6 hours for the insulin to bring them back to normal. It is a major exercise in patience!!! And can lead to rage bolusing (i.e. getting extremely frustrated and bolusing more that reason dictates).

Before CGM, I would take a correction dose of insulin, go to bed, only to wake up in the morning to realise that it hadn’t lowered my levels as much as I had hoped and I had spent at least 8 hours with elevated blood glucoses levels.

Hypo treatments don’t work fast either.

Glucose, even in its purest, most rapid form doesn't work fast enough. This can lead to over treating but thankfully the CGM can help curb the overtreatment.

Angle of Arrow Interpretation ⇑⇒⇓⇖⇗⇘⇙

Interpreting what the angle of the arrow next to my blood glucose reading, means in terms of where my blood sugar levels are heading is not that easy but after a bit of trial and error can be achieved.

The alarms can be annoying.

The alarms! The alarms, in the beginning, were, can be annoying and did interrupt many nights of sleep. But they are there for a reason. And very good reasons at that.

The alarms are very useful learning tools.

I tried not to get frustrated with the alarms, especially the low glucose one, which I have set at 4.4mmols. This give me enough time to prevent an actual hypo and I’m still rational enough to decide how to deal with the impending train wreck.

Mostly I use the alarm as learning tool on how to adjust my insulin dose to avoid them. And it’s worked. Six months ago my high blood glucose alarm was set at 16.6 and now I’ve gradually brought that down to 13.3, it only very occasionally goes off (touch wood). They are especially helpful for dealing with days out of my routine and for food that I don’t have very often.

I’m self conscious about my gadgets and gizmos.

Since the weather warmed up I’ve been wearing short sleeves and my sensor, which is placed on my upper arm, attracts a bit of attention. This does make me think about wardrobe choices a bit more and if I really want to talk diabetes.

I sleep less.

This is both good and bad. Bad because I might be woken several times a night because of the alarms and good because I know that I will never have a hypo again without being aware of it. Sleeping through hypos was a huge concern of mine and the reassurance that my CGM gives me is invaluable.

Sometimes my CGM is not reliable.

Just like any other piece of technology I have noticed that there are times where I should double check my CGM reading with a finger prick check. The times this most often happens is usually the first day of a new sensor and when my blood glucose levels are rising quickly or falling quickly. So I still do 7 finger prick tests a day.

My blood glucose levels are within their targets 65% of the time.

Finger prick blood glucose tests give you a snapshot of where your levels are at that point. The CGM tells you where your blood glucose levels are ALL of the time. It’s the difference between having a photo or seeing the whole movie/book. Now that I have a starting point I can try to increase that percentage and spend more time within a healthier blood glucose range. I also appreciate knowing that number is over 50%.

My CGM does influence my behaviour.

That little graph display does influence my behaviour around food and it also helps me stem the spike in my post meal blood glucose levels. It influences decisions about my treats, such as helping me determine should I choose a full bar of chocolate, just 2 squares of the good dark stuff or on warm sunny days the ice cream. My cgm really helps me spend more time within my blood glucose target range.

It has helped reduce my HbA1c!!!

Yes! I had my lab work done at the end of May and I have had the lowest HbA1c that I have had in four years and the time before that I maintained close to this level while I was pregnant with my first child 12 years ago. I have not been able to stabilize this level at any other time. I have been using an insulin pump for 6 years and hadn’t achieved a lower number. Insulin pumps should be available to those who want them and it should be very much about a personal choice. But CGM’s, in my opinion, are way more valuable a tool for managing diabetes and should be strongly encouraged. Even if it’s just for a couple of months. I know they are expensive but in the long run they would reduce the number of hospital admissions for both hyper and hypoglycemia.

All in all, I am never giving this device up! Knowing where my blood sugars are at any given time has been so reassuring and relieved so much anxiety.

On a promotional note, I attended a presentation by Thriveabetes 2016 keynote speaker, Gary Scheiner on "Making the Most of Your CGM" where I learned lots of useful information and he has published a book on it, "Practical CGM". You can register for Thriveabetes 2016 here.

Diabetes Summit Review

I had so much to write about from the Future Health Summit on Friday 27th May last that I had to divide it into two post.

Disclaimer: The organisers of this conference reimbursed me for my travel expenses to attend as a patient speaker. But all opinions are my own.

Here is my review of the Diabetes Summit Event which was chaired by Dr. Ronan Canavan, co-chaired by Anna Clarke from Diabetes Ireland with our panel being chaired by Dr. Eva Orsmond. This was the event that I spoke at. I was last up on the agenda. I have to tell ye, I think I have the bug. Even though, I seriously thought I would need medical assistance because my heart was pounding so hard while I was waiting to go up, once I got up there – I had a ball!

The summit began with Dr. Ronan Canavan, outgoing Clinical lead of the National Clinical Programme for Diabetes and Consultant Endocrinologist, and an overview of what the Diabetes National Clinical Programme has accomplished under his leadership. This included the National Diabetes Podiatry Programme, the establishment of The Diabetic Retina Screening Service, the Type 2 Diabetes Cycle of Care, which we are seeing happening now, the publication of the Paediatric Model of Care for all Children with diabetes and the forthcoming Model of Care document for Adults with diabetes.

Professor Gerald Tomkin gave a wonderful presentation about something very medical but did not fail to be extremely amusing. Actually I giggled a lot! I should add that this conference was primarily attended by healthcare professionals and patients were in the minority.

Dr Neil Black, talked about the reforms that his team have made in Diabetes West, which is not Ireland West but Northern Ireland west.  They have made some very seemingly small but significant changes. They're approach is to identify the problems in the diabetes service from the patient's perspective. Some changes were easy, such as changing the name of the diabetes clinic to diabetes support service - it sounds so much more caring. They have also streamlined the pathway to receiving care so that the people who need more support have more access and the people who are in a good place can step back until they need a check in.

Prof Philip Home-Professor of Diabetes Medicine, Newcastle University. Former Chairman of the International Diabetes Federation (Europe). In 2009 he was Programme Chair for the IDF World Diabetes Congress in Montreal spoke about medications for lowering blood glucose. Again, another well seasoned presenter and charming gentleman but well above my head. 

Dr Richard Lee Kin-Specialist Periodontist and founder of the Mint Clinic in Adelaide Rd., Dublin 2, pointed out why dental hygiene is so important for people with diabetes. He also inform us that people with diabetes can get two dental exams for free every year. I'm hoping to have more information on this about where you can download the form to apply in advance, if you are a PAYE contributor. It's more straightforward if you have a medical card, see more information from Citizen's Information.

Then there was me and my scenic journey to becoming an empowered patient, or as I would rather put it "my own best advocate".

Once everyone has presented, we concluded the summit with a panel discussion where Dr. Eva Orsmond and members of the audience had to opportunity to question us. Things got a little tense for a moment or two during this questioning, but thanks to Anna Clarke the tension was alleviated.

All in all it was not your average day in the office. It was lively, informative and I'm very glad I had the opportunity to participate and attend.

How I got a CGM

The end of May marked six months since I got CGM'd. WOW! It just flew by. 

After two years of persistence, I finally got my CGM on November 27th 2015. When I announced this on social media I has a number of queries about how I managed to get approved and how difficult others were finding their quest.

As always, the one thing that the diabetes community is brilliant at, is sharing knowledge through our personal experiences for the benefit of others. So, here is the story of how I came to have a CGM.

How did this quest begin? Well, it began with an insulin pump (and that was another long drawn out "quest") in June 2010. I wrote about that journey here on 29th March 2011.

I use the Animas Insulin Pump and as soon as Animas announced that they were rolling out the Animas Vibe with CGM integration in the UK and Ireland, I was on it like sticky on a toddler.

My pump was due for an upgrade in 2014 as the warranty runs out at 4 years and because the pump software would not continue past January 2016. I called my Animas rep to find out how, or if there was a chance that I would get a Vibe as part of this upgrade and she said yes! Great! But wait!

Hiccup no. 1. However, between hearing this information and my next appointment at my endo's office, my Animas rep, the only Animas employee in Ireland at that time,  took a 12 month sabbatical. That combined with having only 3 visits per year to my endo doesn’t give me much of a chance to get things done. I did get my Vibe in June 2014 and immediately started chasing down how to get the CGM component.

Hiccup no. 2. My Animas rep returned from her sabbatical the following August BUT then my fabulous endocrinologist left her position at the hospital I attend! I decided to use this opportunity to migrate back into public health care for my diabetes. My children were both in primary school and it was doable to fit clinic visits during school hours. I had also heard of a clinic that was only a one hour drive away that had an insulin pump clinic and DAFNE. 

Hiccup no. 3. Fifteen month waiting list!!!!!!!!!!!!!!!! Not kidding! By the time I got my referral sorted out to my new clinic and waited I had been without medical care for 11 months. I was doing fine but I was starting to get a wee bit unsettled. Thankfully, when I called to chase up my referral they squeezed me into the Type 2 diabetes clinic in April 2015 but at least I was in and on the books.

June 2015 - I set up a trial before purchase with a Dexcom CGM for two weeks and I was hooked. And now I had data, with the help of my mathematical husband, to strengthen my case for getting one permanently.

October 2015 - I presented my case and there were a couple of breakdowns in communication but the paperwork was put through to apply for funding approval from the HSE and on the 27th November I was live on a CGM permanently.

It took 17 months to complete this quest, that in the end when I had convinced my diabetes team why I wanted one took 6 weeks. Unlike an insulin pump, the training and education required before a patient goes live on a CGM is minimum. 

In February 2016, an additional piece of this quest was completed and that was the reimbursement of the monthly supply of sensors which comes not from the Core List F of diabetes supplies and medications included in the Long Term Illness Scheme but on the Special Product List. See here for more information.

And that is the complicated story of how I got a CGM. My next post will focus on what I have learn about managing my diabetes by using it and how I will be taking it to the grave with me.

If you want to find out more about what is a CGM (Continuous Glucose Monitoring) device is, watch here. There are two available in Ireland at the moment; the aforementioned Dexcom (with or without the Vibe insulin pump) and the Medtronic RealTime Guardian CGM. The newer Medtronic pumps all come with CGM compatibility but you can get the CGM component without getting an insulin pump.

Future Health Summit Review

I have so much to share from the Future Health Summit last Friday I really don’t know where to start. So. Much. To. Write. It was very much an honour to have the opportunity to attend and to get a glimpse into the health care professionals' world and to have access to a diverse range of AM-azing speakers from all areas of health. Friday morning, I arrived in, what I thought, was plenty of time to browse the exhibits but due to a minor mix up in the timetable I lost forty five minutes of that time. I met some really interesting people though, who do some very important work and some very interesting delegates.

The first part of my day was spent attending the Diabetes Ireland workshop, which was consolidated with the ARCH workshop.

I have to say that I feel a new & engaging phase of diabetes patient conferences evolving. The diabetes conferences that I had been going to in Ireland were stale for me. They were very much medically driven and about getting to know the basics. They were not at all engaging, or very seldom and I wasn’t learning anything new at them so I stopped going.

In 2014, I had my first experience of what a patient conference could be when I went to my first diabetes conference where the speakers really, I mean really, engaged with their audience. It was almost like we were at a Baptist church service and I just wanted to stand up and sing “Halleluia”! I called these guys and gals Diabetes Rock Stars. And these guys blog, have websites, run organisations and are well known in the diabetes world. You know who I’m talking about because we are bringing a small number of them to Thriveabetes.

But in recent months, as I do more and more blogging and advocating and learning and meeting new diabetes people I’m beginning to realise that we are growing our own crop of Diabetes Rock Stars right here in Ireland. I can see it happening and it’s so exciting. The two I will mention today are Diabetes Ireland's very own, Anna Clarke and Kate Gajewska (no she's not Irish born but we are keeping her:-)

Kate's "Top 10 Tips for living with Diabetes"

Kate presented her "Top 10 Tips for living with Diabetes". But they weren’t what you might have assumed they were. She told us not to forget to live and play, that diabetes is part of our lives - don't let it become our whole lives. Become an expert in diabetes - find out what it is, how insulin works, how carbohydrate is absorbed - there is nothing as empowering as knowledge. They are just a couple of the gems she shared. And she told us her diabetes story of growing up in Poland and how her parents bought her first blood glucose meter when they first came out and then they bought her first pump. How expensive they were but that her parents know how much a difference they would make in her life. I hope to have more information about Kate in the coming months on the Thriveabetes blog.

Anna's " What to expect from you annual diabetes clinic appointment"

Anna Clarke gave us her version of what to expect from you annual diabetes clinic appointment. It was clear that Anna knew most of the people with diabetes in the room had type 1 and I think she also knew some of us personally. She delivered a talk that was specific to us. Us, who have been around the diabetes block for a while and do our homework for our appointments. So, she told us that we should not be afraid to speak up at our appointments, especially if we don’t feel listened to. That, even if our doctors and nurses don’t see us as equals, we should still see them as ours. And to focus on getting more time with our Diabetes Nurse Specialists rather than our Endocrinologists.

Shane O'Donnell & The ARCH Workshop

Next up was the ARCH workshop which was extremely interesting and gave me a little introductions to sociology presented by Dr. Shane O'Donnell was presenting it with his colleague, Dr Maria Quinlan.

ARCH is the Applied Research for Connected Health, and "is at the centre of an unparalleled connected health education and research infrastructure that spans a range of activities from gathering, analysing and interpreting data, through the development of new knowledge and care models to implementing and evaluating change."

Shane, you might remember from a previous post, is Ireland's representative on the International Diabetes Federation’s Young Leader in Diabetes Programme. And even though he had written a piece for Thriveabetes, which you can have a read of here - we had yet to meet. Cool Bananas! Box ticked!

I know that I’ve come across a couple more Irish people in diabetes who qualify as "Rock Stars" - but I thought I would just give you a little flava.

We had a quick break for lunch. And then my afternoon was spent attending the Diabetes Summit, where I was presenting. I have to tell ye, I think I have the bug. TBC This post is long enough:-)

Apologies for the lack of photo, I really need to upgrade my phone:-(

The Blood Sugar Train Wreck

This train wreck started with a decision to skip the spud at dinner, in my opinion. We were having Chicken Maryland and so there was enough carb on the breading to double my usual dinner carb count and I decided to forego the mash potato. This middle/2nd dip below the blue line in my photo opposite shows the low blood sugar after dinner.

I, mostly, eat low to moderate carbs to help maintain good blood glucose management. It’s a decision that I made for myself and I would never try to make it for anyone else.

Having said that, the real, real reason I skipped the spud was to have an ice cream. :-S It was a Saturday and I like to have a special treat on the weekends. Being a stay at home mum, it kind of lets me know there is something different between weekdays and the weekends.

I feel like I’m digging a bigger hole for myself here!

Anyway, here comes the second questionable decision. My blood sugars plummeted after dinner and I was so SICK TO DEATH of eating glucose tablets that I opted for chocolate and jellies instead. I know! I know! Not the smartest idea. (Another big hole) I can’t even use the fact that my hypo was affecting rational decision making because it didn’t.

Lots of jellies!

Ok, now the predictable happen. ↑↑ Yep, blood sugars doing the opposite of plummeting, which eventually lead to rage bolusing because insulin does NOT work as fast as I would like it too.

Next up, the rocket train down again. At this point, I took 5 glucose tablets, I usually only take 2-3, to make sure it was well and truly taken care of and that I would not wake up again before I was suppose to.

There is no lesson in this post. I'm just frustrated!!!

But I survived! I learned! And I shall not beat myself up over it:-)