Continual Glucose Monitoring - Things be changing? Well a little anyway

Currently in the world of Type 1 Diabetes there are 2 paths that can be taken -

• Old School Path - This is the majority of people. This is anywhere between 5 to 10 manual finger blood tests every day. This means that in between tests all you have is your own  understanding of the way you feel to know if your blood sugar is at the right place or not. This also means usually multiple daily injections which will change in dose depending on you blood sugar level and what your going to eat. This path also sees no protection or awareness overnight which sees parents and people with T1D worry and loose countless nights of sleep.

• New School Path - This path sees people and currently especially kids on a insulin infusion pump and instead of having gaps in understanding what your blood sugar is doing people have the ability to move to a continual blood glucose monitor which tracks and monitors blood glucose every 5 minutes and puts it into a real time graph to ensure the right decisions can be made at the right time. Medtronic have also taken it one step further and introduced SmartGuard which has automation that will shut down the pump prior to a low from happening which will lessen the curve of the low and possibly save lives.

• Middle Road Path - This is a mix of both. Either Multiple Daily injections and a CGM or the Insulin Infusion pump with standard testing.

Yes I know I have been through this before in a number of my blogs however one thing that has kept people from making the jump from old to new is the price. The cost of living in general in Australia continues to increase and this is a preasure in itself however living with or someone with the cost of T1D is another burden.

Saying this there is word in the T1 world that our government has just made the announcement that there will be limited subsidy for CGM. This is great news. 

This announcement and funding will be open to kids with T1D but unfortunately it will not be open to adults. This is a good step in the right direction and there is mixed feelings from my perspective as I see it from both having a child with T1D who will be eligible and me who will not be.

So firstly as a parent of a child that is too young to manage her own T1D and the pressure and worry that it puts onto the entire family this is a much welcomed decision. This allows for ease of worry and concern not only at home but at school, with extended family, at the park, at the pool and in fact in every part of life. As she learns more and more about her Diabetes she has a real time view into what is happening at any given time and when needed it is there to back her up with the predictability that we all hope for.

I jump back quickly to school because having a CGM on gives teachers the ability to have a small piece of mind also. It doesn't take away from the tough task it is that we ask of them in looking after our kids but it gives them an idea as to what and how to do what is needed.

Sleeping through the night is also a massive benefit as instead of having to wake multiple times a night to manually test the CGM alerts and alarms only when necessary. If everything is fine then parents and kids will have the somewhat unknown feeling of getting a good nights sleep.

Now onto the perspective of being an adult with T1D and not being eligible for funding to get access to a CGM. This is tough, and don't get me wrong I do believe that from and over the whole world perspective we have the ability and access to the drugs and equipment that we fundamentally need for a price that is maintainable however I also believe that having a chronic disease should be prioritized over other conditions that ultimately have the lions share of attention due to the ability to possibly cure rather than funneling funds into allowing people to better the lives they live and ultimately saving money for the health system by allowing people to take more control through technology and better management processes.

We push to do the best we can and sometimes it is good enough and others it is just enough to get up to have access to what we need to live a better life is both the responsibility of the person and also the government to help provide all that can help.

When the Invisible becomes Visible

For those that read this that live each and every day with a chronic disease that on the whole has invisible symptoms or invisible management techniques you'll know the frustration that it can bring. Not that it should ever need to be an excuse but the times where

• You have a hypo and you have no choice but to not go to work due to the toll that is has taken on your body.
• You have a hypo at work and people 1 don't understand what is happening or even why
• Where eating something isn't as simple as just picking it up and keep going but it means constant calculations while predicting the future as best you can
• Where falling so tired in the afternoon knowing that MS is taking hold and you have no option other than to stop and sit and simplify your thinking.
• and the reasons just keep adding up.......

People living like this are some of the strongest people out there as we all have to live with every day pressures as well as everything else on top of our heads.

One of the biggest steps I have had to come to terms with is that with living with an invisible disease for 27 years my MS has now proven to make the invisible visible. To now have people notice that there is a difference by just looking at me is confronting. I am not saying that the change is huge but it is noticeable. The left hand eye droops, my right hand shakes and I have just realized I walk with a slight limp for some reason. I am assuming that something has been effected with the signals getting down to my legs. All things that are manageable however now things have changed that I can't hide what is happening which also means I have to ask for help.

For a person who has strong beliefs and pride in what I do for my family you can imagine how difficult this may be.

• No longer can I push through and deal with everything without someone asking if I'm ok.
• No longer can I expect to do everything without asking for help. 
• No longer can I not think of the long term future as everything has limits.  

Being a single dad to 3 girls with 2 of them full time this doesn't mean that I don't still have my pride and determination to do everything I can but it does mean that at times the pride needs to be swallowed.

It has also taught me that even if everything was still invisible those that love and care and even the people around each and every person around us needs to understand what we all do each and every day to survive. Education and Information is key to ongoing success in what ever we do.

Alt, Ctrl, Delete

I write this post after what I see as a defining time in my already multi-dimensional life. If you have read some of my posts you will know that I have had T1D for now 27 years however 3.5 years ago I was also diagnosed with another Chronic Auto Immune Disease - Multiple Sclerosis. Over the 3.5 years I had tried around the same amount of treatments. Now when I say treatments there is no cure and the use of the treatment is to slow down the time in between attacks. It was estimated that each of the treatments should take the attacks from happening every 6 months to 3 - 4 years apart. Unfortunately they only broadened the attacks to  happen every 12 months or so. Even though this was lengthening the time it still wasn't enough and the disease continued to be active with new lesions being picked up on the MRI's. Altered sensations also broadened from the left hand side of my face to the full left hand side of my body and a slight limp so with all these changes some tough decisions needed to be made.

The neurologist talked to me about a drug called Lemtrada and as usual knowing that they are the specialist I was open to thinking this was the next step that could work. I asked the questions like I usually do,
1- Will it have an effect on my T1D? The answer - It shouldn't but we haven't had anyone that has had both before. This was a shock to me and something that would play on my mind even up to this day.
2- What are the side effects? The answer was going to be long enough so they handed me the long list that I swear just had to cover all bases as I flicked through quickly and they ranged from a rash and fever all the way through to death and also everything in between.

They mentioned that there had been some good results in this drug with people with MS as the initial group had now been relapse free for 8-10 years and they have actually had their symptoms become better. Basically when caught early and treated with this drug (oh and minimizing contributing factors in life) the disease could almost me put to sleep. Basically there still is no cure however this was sounding good. As mine is still active there wasn't a second thought it had to be done.

So Lemtrada itself is an immune suppressant but what I didn't know is that it is actually a Chemo Therapy drug that is designed to target the immune system and kill off the white blood cells including the mutated cells that have been changed due to the MS. So as the title says it is like when you press Alt, Ctrl, Delete on your computer to give it a restart and reboot this is what I have done to my auto-immune system. This is a 2 year treatment but on the whole it could be a lot longer as I will be having monthly blood tests put in place to make sure we can watch for any possible side effects including kidney damage/disease. thyroid problems and a number of others that could come apparent any time after the initial dose.

I was told that the initial treatment will happen over a 5 day period where I will need to be given 3 days of IV steroids (Methylpred) and 5 days of the Lemtrada drug. This would be done as an outpatient in the Cancer Care Center. I specifically mention the Methylpred because this is the item that will have the biggest impact on my existing T1D. Steroids stop insulin from working within the body which means while on the steroids and for days to weeks after it is going to be a major roller-coaster trying to make sure my blood sugars are as they should be. What I wasn't prepard for was the fact that this steroid compared to Prednesalone activates almost instantly where as Preds ramps up at a slower rate so its not as much as a shock to the blood sugar. The first day of the infusions (which happened to be on my birthday) started with me making sure I drank a liter of water prior to the start. This helps with plump veins and also helps move the drug through the body. Anyway the steroids were started and within 20 minutes the roller-coaster had started with me watching the CGM show that I was rising and rising quickly; I increased my basal rate to 200% and through out the day had to give manual boluses to just try and keep it at an OK level. Unfortunately but understandable my levels stayed in the teens for the next 8 hours.

So from a T1D perspective the steroids were the only immediate effect however as this is a long term treatment fingers crossed it will stay that way.

The days continued with the same cocktail of drugs and I actually found it quite funny how when ever the nurses were dealing with the Chemo drug they needed to wear basically a hazard chemical suit and we sit there and pump that same drug directly through our body.

As the week continues tiredness takes hold, some heart burn, aches and pains, headaches, fevers and a rash begins. All treatable with antihistamine, panadol and some other minor drugs. This is actually a good thing as thankfully I was not allergic and also maintained drinking and resting as much as I could. This is no where near finished it is only the beginning however like pressing Alt, Ctrl, Delete you hope that when you restart the problem you were having is at least gone long enough to make a difference. I will continue to update how things move as it is interesting to get an understanding as to all effects.

The Next Chapter and Challenge with SmartGuard

It has been a while since I have done a blog but as it happens it doesn't mean that life with T1D has become any less important and in fact it has become more important as I have kicked over 27 years living with this disease and my daughter has now been living for over 3 years from diagnosis.

I am going to focus on a process that we have been going through with my daughter because this year she has started school. An exciting and nervous time for all parents as it signifies their little baby taking the first step of independence.

The usual start would see uniforms being bought, school bag being packed, lunches being made, hair being perfectly brushed and shoes being polished. On the day the nerves for both parent and child are high but for completely different reasons. Children are excited but nervous as they don't know what is to come and parents are nervous as there now not the ultimate dependency.

So you would agree that it is a big milestone but now with all of this add the worry of leaving your baby at school with people who have never heard about Type 1 Diabetes and having the responsibility of teaching the teachers how to keep your child alive. I can tell you that this is a daunting task.

Our process started last year in speaking to schools about there awareness of Type 1 and also to find a school that was comfortable in taking the responsibility for managing this chronic disease during the busy school hours.

We ended up settling on a small school with an awareness but in no way clear processes around managing T1D. The school had a grade 6 student with T1D however at 11 years old the child was capable of managing their own diabetes including blood glucose tests and injections. So the understanding on the actual day to day management had to be taught. We began, with the help of the class teacher and the principle, with an overall information session for all teachers that will have responsibility of care throughout the year. This session saw just how much the general population have been skewed towards the majority in Type 2 Diabetes as the understanding that T1D is a chronic disease was not evident.

So the first day of school arrives and along with the uniform, school bag, lunch, hair and shoes the survival bag was created and carbohydrate amounts were written down on each item in the lunch box. The survival bag consists of blood tester, ketone tester, hypo treatment foods, Glucogon pen and a spare set change and sensor change.

Having the Medtronic 640g pump with SmartGuard would become our godsend because instead of having to teach the teachers how to measure and give manual insulin injections they just had to learn the management of the carbs, activity and blood glucose levels. Even this is a big ask for any teacher. It was decided early on that no day would start without the CGM sensor in place with Smartguard being active. This would give both ourselves and the teachers peace of mind that there is safety in place when BGL lowers of increases. It gives teachers a direct view on what is happening at any given time.

The school days through out the first term is all about on the job training and we are seeing that the physical processes are just a small part of the puzzle. Teachers have to learn about activity, trends and the effects that different carbs will bring. As we live with Shiloh we know that certain circumstances will mean she needs carbs or insulin above or beyond the standard process. Trying to get the teachers to understand this is something that will come in time, well we hope anyway.

Another aspect we are tackling is trying to see if there is the ability to have a full time Teachers aid appointed to help as at the minute my daughters mother has to stay at school to help teach and monitor but without her there it is a very large responsibility for the one teacher. Discussions with the teacher and the Principle have everyone in agreed that an aide is required however the initial response form the state government authority says that as T1D isn't a life threatening disease then it doesn't warrant the help.......... I know I can hear you all now as I had the same reaction.......... After hearing this I set to work taking a look at what the departments actually deems as a condition that requires help. Taking a look through the detail on the departments website I found that in black and white it is written that  T1D can be life threatening and that aids are available for children are too young to manage everything themselves responsibly. Unfortunately it is still a process to have a case raised with the department of education and have obtained letters of recommendation from all of our doctors and past kinder teachers  to prove what it is actually like to manage a 5 y/o that has hypo unawareness and  how much constant attention is needed to ensure maximum learning can be obtained while managing all aspects of T1D.

My opinion so far is that it takes time and effort both physically and mentally to be able to make sure life as we know it continues and at every stage in life it will take someone who cares above and beyond to help. We have found a school that is doing everything we can and will continue to push to make sure there is help along the way.