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Tuesday, March 19, 2013

LGS and the Future

I know. I know. It's been aaaaaagggggeeesss since I blogged. School and life took over while I focused on other things in my life but now I am back :) 

For people new to the Diabetes lingo
CGM = Continuous Glucose Monitor
LGS = Low Glucose Suspend
AP = Artificial Pancreas 

D = Diabetes

As many people are aware, us Australian's are lucky to have two of the most advanced pumps available - Medtronic Veo and the Animas Vibe. There is one thing that sets the Veo and Vibe apart is one thing and that's Low Glucose Suspend. I may not have the most positive experiences with Medtronic (here , here and here ) but I do know that I trust my pump enough to handle my life. And I am glad I did at those times.

Since taking Medtronic up on their offer of a very cheap CGM starter kit and using CGM, It's caught many of my lows in the night that I don't usually wake up to! And the good thing is they never made me high the next morning. Always woke up around 8 mmol/L (144 mg/dL) after a LGS event. I'm happy with that considering what the alternative was! I would go as far to say that it's an early version of the AP. After all it does take over control just like the AP is designed to operate. Medtronic's new Veo successor is meant to have Low Prediction Suspend which suspends, you guessed it, when a low is predicted. I know I am not scared of this but I know many people are about a pump taking over even more function of D care. I see it as taking a small but crucial "break" from D management which takes some of the burden off. By no means is LGS supposed to constantly catch lows but its there for those moments when things do down hill and you least expect it. Think of it like a security blanket. You hope you never have to use it but it's there. I'm excited to see what the future brings and I sure hope it's not a Medtronic patent like LGS is! But of coarse money is always an issue. Take Australia for an example. Not a single private health insurer will cover CGM technology and our government and associated agencies see CGM technology as a luxury rather than a tool. An AP system will be useless if no one can access it. Just sit on that thought. 


For me the closed loop is achieved. It's somewhere where I never thought would of been possible. What ever happens from here on is a bonus. I can't wait for the AP though!

Saturday, September 17, 2011

30 Things About My Invisible Illness

Since this week is Invisible Illness Week, I decided to join in with everyone else doing the "30 Things about my invisible illness". I'm not a shy person when it comes to D. I proudly wear Junior on the outside of my pockets, on my waist or when I feel lazy I'll have Junior just chilling somewhere on my shirt clipped upside down. Also, I am not afraid to test in public. In fact, I actually like people coming up to me asking what I am doing so I have a chance to advocate instead of them stare like tiger that has found a rabbit. 

1. The illness I live with is:
 Type 1 Diabetes
2. I was diagnosed with it in the year: 7th August 1997
3. But I had symptoms since: one month before
4. The biggest adjustment I’ve had to make is: none really. I was only 18 months old when I was diagnosed. 
5. Most people assume: that I got it from my Mum pouring sugar down my throat as a baby. 
6. The hardest part about mornings are: waking up and dreading the first BG check of the day. 
7. My favorite medical TV show is: RPA hands down. If you know me, I love Biology. I like to know how the human body works and this is what the show is all about. People getting ankle reconstructed to transplants to beads stuck in peoples noses. 
8. A gadget I couldn’t live without is: my meter. You have to have a starting point to know what to do. 
9. The hardest part about nights are: fears of going low during the night and not feeling it.  
10. Each day I take __ pill & ___ vitamins: I take none. I have insulin 24/7
11. Regarding alternative treatments I: There is not alternative treatments to Type 1. We need insulin to survive and will die without it. Full stop. 
12. If I had to choose between an invisible illness or visible I would choose: This could swing both ways. While I like to show off my pump to let people know I am not afraid to show who I am, I like having the option of being discreet about it and making it invisible would mean people wouldn't judge you or worry about you. They wouldn't have a clue something is wrong. 
13. Regarding working and career: I want to become a CDE (Certified Diabetes Educator). I want to help people like me. I guess what would be different from most CDE's would be that I understand everything we go through. I know what the high, low and the down right scary moments are. 
14. People would be surprised to know: that even though I have a pump, nothing is ever perfect with D.  
15. The hardest thing to accept about my new reality has been: not drinking regular soft drink. Type 1's can eat/drink ANYTHING we want. We just need insulin to cover the carbs. Some of us just don't touch it because it can do wicked things to our BG's.  
16. Something I never thought I could do with my illness that I did was: I actually have done everything regardless of D. I won't let it slow me down or stop me from doing something. 
17. The commercials about my illness: are non-existent in Australia. Though 99.9% of print media advertising about D is Type 2. 
18. Something I really miss doing since I was diagnosed is: being normal. 
19. It was really hard to have to give up: pancakes. They just demolish my BG like there is no tomorrow. Not even worth the troubles any more. 
20. A new hobby I have taken up since my diagnosis is: blogging. Something I wouldn't of done if I didn't have D.  
21. If I could have one day of feeling normal again I would: appreciate it. 
22. My illness has taught me: carb counting. You name a food and I will know/guess the carbs in it. 
23. Want to know a secret? One thing people say that gets under my skin is: "Oh you have you got the good or bad kind of diabetes?" or the ever so classic "Oh my [insert name of old relative] has that. She had his/her [insert body part] cut off because of it". Yeah big difference. Many if not all of them would be Type 2's. 
24. But I love it when people: ask me questions about it, retain the information and accept me as having Type 1 and not insisting I have Type 2. 
25. My favorite motto, scripture, quote that gets me through tough times is: "A little bit longer and I'll be fine". 
26. When someone is diagnosed I’d like to tell them: that they are not alone. There are thousands of people that are experiencing the same thing. I would also inform them of the AMAZING DOC. 
27. Something that has surprised me about living with an illness is: how it has effected my family. We can't just walk out of the house on a moments notice. It takes careful planning by checking if I have my meter, if my pump has enough insulin, if I have a spare infusion set etc. 
28. The nicest thing someone did for me when I wasn't feeling well was: spend there free day taking care of me making sure I was ok. I really appreciated it :)
29. I’m involved with Invisible Illness Week because: Reyna did it. Kerri did it and Emma did it. But also if we didn't tell the world about Type 1, it would remain invisible. No one would know about it.
30. The fact that you read this list makes me feel: appreciated because you took time to see a tiny tiny glimpse into our lives. 

Friday, July 15, 2011

D and Its Expenses




This blog post is a part of a series of posts, that will be giving an in-depth look into the life of living with Type 1. A non-D friend has asked me to write these posts as an education tool that is not just for them but for everyone. Hope you all enjoy them :)

Along with dealing with such a tiresome annoying disease, there is cost to manage Type 1 Diabetes to purchase needed supplies and also the cost of time. D can take away heaps of time. Sleep is a major one. I'll go in more detail.

I will start with the physical money side of living with Type 1 Diabetes. This is very complex because it really depends on if you have a Health Care Card. A Health Care Card is given to you via Centrelink if you do the necessary paper work for a allowance called Carers Allowance. You get money to help pay for supplies etc and the Health Care Card for children 12 and under. As soon as you turn 12, the government sends you re-assessment papers but 99% of the time after sending the forms back, your stripped of the allowance and left with just a Health Care Card. When you turn sixteen, your striped of your Health Care Card. If you are still a full-time student, you can then apply for the Ex-Carers Allowance Health Care Card. The Health Care Card gives us access to cheaper prescriptions from the chemist and blood glucose test strips via the National Diabetes Services Scheme. We require a lot of things to manage Type 1. We need testing strips, we need insulin, we need needles for the insulin, we need so many other things but I can't think at this point. 

Blood glucose meter (left) Testing Strips (right)


Test strips are $1.20 for 50 with the Health Care Card, $8 without. Testing strips work with a glucose meter and tell us how much glucose is in our blood. I use 50 strips in 5 days. Sometime even more if I am exercising, sick or have abnormal blood glucose tests.







Insulin (NovoRapid)


Insulin such as NovoRapid, Humalog and Apidra (Fast acting) are used for when your eating carbohydrates or for insulin pumps and Lantus, Levimer, Protophane, NPH (long acting) work as a background insulin. We require both of these types of insulins to help manage D. 25 pre-filled pens of insulin are $5 with HCC and something like $30 without. Lucky for us Australian's, between funding from the NDSS and the Australian government, needles needed to inject the insulin are completely free.


Insulin Pump
Here comes the complex part. If your on a pump (like me), then there are even more cost's . 
We have to first purchase our pumps either via Private Health Insurance or self funding. Self funding is $9500 for most pumps. Of coarse going the private health insurance route requires cover but anyone with even the most basic full non-restricted cover can get an insulin pump funded with only having to pay the excess of your policy. 







Infusion set
We then need to purchase consumables for our pump to make it useful. As long as you have a NDSS card, you have access to cheap pump supplies regardless of having a HCC or not. A box of the tubing with the cannula that goes into your skin called an infusion set, costs approx $14 a box. They generally last a month if you don't make mistakes putting one in or some failing - this will happen. 








Reservoirs 


To hold the insulin in the pump you need what is called a cartridge or reservoir to hold the insulin. These cost approx $10 for 10. They last depending on how fast you use the insulin in them. For me 1 reservoir lasts me 3 days so I use 10 a month.


I could go into more but this is the bare basics for a person that doesn't know D too well. 

Tuesday, June 14, 2011

Really? Why Me!

Looks like you guys are in for a treat. This is my 3rd blog post for a month. I usually don't have time to always write but today I made time :) Though this is a vent post - You have been warned. 

So Junior spat out a "Motor Error" alarm again on Friday night during the rewind part. I instantly panicked. I eventually calmed down and called Medtronic. Got the usual questions such as name, pump serial number etc. We then proceed to do some checks on the pump. Just things like doing another rewind and faking a fill tubing and a Self-test. Nothing showed up and that was that. They just told me to watch out for weird behaviour. Umm no. I clearly have lost all trust in this pump after getting this alarm for the second time. "We replace them if this happens more then once in a 30 day period" , the man on the phone said. I pretty much told him that I have no trust in it and planned not to use it. I then had a new pump shipped to me. But hold on a minute. It's Friday and a long weekend. (Remember this for later. It will come in handy). New pump won't be there until Wednesday. Great.

I finally get off the phone with Medtronic and then called the hospital that my endo is based from. They have a copy of my records that I have at the Health Precinct. Apparently I had a record of my backup plan there (or so I thought). "Sorry Brent. We have no copy of it here. Let me get someone to help". I ended up getting transferred to the doctor on call in the pediatric department who just so happens to work with my endo. Ended up convincing me to use the pump again but help me work out some Levimer doses if it stopped working over the weekend. Ok. Fair enough. Put pump back on and go back to sleep with 2 hourly checks. All was fine over the night.

(Did I mention we were going way for the long weekend too? No? Maybe I should of mentioned it) Got up on Saturday morning and a little high, correct, eat and just go on with my day. I get in the car. About 45 mins in the trip, I test my blood sugar. 16 mmol/L (288 mg/dL) flashes in my face. Another correction and increased basal. Still wouldn't move. My whole Saturday was pretty much like that. The only way I would go down is correction by pen. I decide to change the site. Still the same thing happening. It was about 9pm Saturday night when I remember the Motor Error. Could it be that? I assumed (and was correct) that is was the pump failing. That alarm was right. I personally think the motor got damaged and only delivered some insulin  Enough to keep ketones away, but not enough to cause the constant highs.  So by the time it was 11pm, I made the decision to go back to MDI. It had to be done but I didn't want to do it.

So now for the past 2 days, I have been riding that glucocoaster with a fast pass all day. Seeing highs that are as high as 20 mmol/L (360 mg/dL) alarmed me because while on the pump, those types of numbers rarely were seen. I brings back thoughts of when I was back on MDI about this time last year. I was spiraling down hill because no matter what I did,  MDI wasn't working. I love my pump to bits. It lets me live a near normal life. No more fast pass glucocoaster all day everyday. And these past 2 days show how much I rely on it and need it. Junior's replacement (Junior 2 as in Junior Squared, for people that might wan't to know) is due to arrive tomorrow morning. 

I had to pull his battery out on Saturday otherwise it would still have recorded basal. I had to end up putting his battery back in for one last download to get the most up-to-date basal's and Bolus Wizard settings.  He will end up being repaired and being given to another family that needs a replacement.
Only 4 months old. 

Friday, June 3, 2011

Dear Prime Minister, Julia Gillard

Dear Prime Minister Julia Gillard,

If you want a "Healthier Queensland" as the ad says, then how about funding 100% of the cost of an insulin pump. I know you offer part of the cost to purchase an insulin pump (which is very small considering the cost of the device) through a scheme, but honestly, it is still out of reach for an everyday Australian let alone Queenslanders. Also needed would be reimbursement via insurance companies AND NDSS for Continuous Glucose Monitor sensors. These are quite expensive for ANYONE living with Type 1. In a year, these roughly cost you $4500 to purchase. Thats IF they last the 6 days advertised AND if you don't make mistakes with putting one in or having one fail - which will happen. Insurance companies see these as a luxury and will not fund them. An insulin pump and Continuous Glucose Monitor can and will greatly reduce the amount of hospital beds taken up by many people with Type 1 Diabetes by giving sufferers greater control of their disease, as well as alerting the user to rapidly rising or falling blood glucose levels before it can become a medical emergency. There is one pump in particular that works as a insulin pump and Continuous Glucose Monitor receiver which has the ability to shut the users insulin pump off in a hypoglycemia situation where the person may be unconscious and can not respond, which has the effect of hopefully bringing the patient back to consciousness. This will put at ease the minds of thousands of insulin pump users and their carers. My family have had the Carer's Allowance, which is to help me and my condition, taken away from us since I am expected to take care of myself. I can't. I need help from a CARER when I have low and high blood sugar levels. I need a CARER to make sure I count my carbohydrates in my food. I need a CARER to get the supplies I need. I could continue creating a long list but I won't. Taking away this allowance stops people accessing better treatment, as that is what the allowance is for. I, as a Type 1 Diabetic, already have to live with this disease, and I believe we should all have equal access to supplies that could help us manage our disease a whole lot better. It would help someone like me, a person living with Type 1 Diabetes, grow up to be the future generation of our country.

This is an extended version of what I posted earlier on my personal Facebook and I actually think I want to send this to our Prime Minister (Obviously with a bit more tweaking.)


(For my lovely overseas readers, Julia Gillard is Australia's current Prime Minister. She has done nothing to help anyone with Type 1 Diabetes since in power. The "Healthier Queensland" ad I talk about is an ad running in Queensland about the health of people in QLD with such ads
containing healthy eating etc.)

Monday, May 30, 2011

I Hate D So Much Right Now

It's now 10:30pm, late on a school night. Why am I up you ask? I changed my infusion site after I got home from school.  Well I was really high after dinner, 25.5 mmol/L (459 mg/dL) and I took my site out because I know the calculated carbs weren't wrong. This is what I was greeted with. 


Yeah not fun. My tummy was hurting a little so I thought I better check my ketones (remember I missed 2-3 hours basal AND had dinner ) BAM! This popped up. 
URGH! No wonder why I felt like I was going to vomit. It was around 8pm when I noticed feeling sick. So off I go to change the site and calculate a  BG correction+ketone bolus. I used my pump since it was a new site. Terrible mistake! Its now 2 hours after that bolus to reduce ketones and my BG has only lowered by 2 mmol/L ( 32 mg/dL) and ketones still remain at 0.7. I ended up doing another BG correction+ketones bolus but this time with a trusty syringe. I have a feeling this is going to be a long night. If the ketones don't reduce in 2 hours, well I think its time to call the on call endocrinologist at the local hospital.
F.U.D

Thursday, March 31, 2011

Lack of Support

Now this post is about my D team. They have done some pretty dodgy stuff and let's not forget that no pump stunt.


Its 2 months tomorrow that I have been on my insulin pump. For the first 4 weeks we went in every week to make adjustments and all that jazz. After the last appointment, the support has been non exsistent. No phone call or email to see if I am going ok or need help. Starting a pump is daunting and requires lots of work. I am not confident enough to make changes on my own yet. I would of thought they were willing to help me.


I am beginning to think this D team is not for me and is time to move on and find a new one. There is just a part of me that does not want to move since I know this team well. I don't know what to do.

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