It's been a long while, actually. 25 years to be exact.
I imagined I would spend this day just as I spend it every other year: angry, mostly, with a lot of sadness built in. Boy, was I pleasantly surprised.
I spent the day landscaping the front yard with the Hubs. It was almost 40° out, so a few hours out in the sweltering heat was pretty unpleasant.
The rest of my day was spent hanging out with my little guy. He turned 4 months old today!
I'm learning that it's hard to find time or motivation to be angry about something you can't change when you're at the centre of the world for this tiny, cuddly little boy who loves you so much and lights up every time you walk in the room. In a small(er than before) way I'm still devastated about my initial diagnosis, but today it seems like those feelings pale in comparison to the way I feel when I hang out with Husband and baby and remember that we made this family. I am so, so proud to have made it this far surrounded by so, so much love.
So I have to be honest. I got a few great days, maybe a week, out of my openaps system. Then I broke it.
I was mega-pregnant* and constantly exhausted, so I sort of gave up on it. I never tried to rebuild never tried for an automated system.
I am hooping that sometime over the next 9 months of mat leave, I manage to wrangle up something new. We'll see? I always thought myself capable of more, but apparently motherhood and t1d have, in combination, kicked the crap out of me.
*I was honestly probably only 3 of 4 months preggo, but the nausea felt like it had been going on for years. I threw up everything. sorry for exaggerating?
Happy to announce that my beautiful and very skilled (in yelling) son was born May 3rd. Less-than-happy to announce that diabetes has been a mess since then.
Part of me wants to aim for an a1c of 14 so that I can use the high BGs to burn fat (instead of carbs) and lose this baby weight.
Most of me hates the BG rollercoaster that comes along with breastfeeding.
I'm a part of a weekly therapy group that takes place at a local hospital, but most of the new moms are working on issues with bonding with newborns and working on relationships with their partners. When I described my issues (constant obsession with low bgs like I needed in pregnancy, low bgs after breastfeeding, feeling kind of like I'm dealing with a newborn baby and a newborn (and very , very angry) t1 dx) , the lead therapist suggested that I use the group therapy as a place to vent. This left me feeling like the group wasn't equipped to deal with medial issues :S.
Whether this is true- remains to be seen! I'll report back on whether the group can help me to work on healthcare issues instead of partner communication issues (my partner kicks ass. No problems there.).
My wonderful, adorable (yet constantly angry) baby is great, probably. Now if only by diabetes could let me feed him without napping bc my bgs are in the 2s. Like I said, It's a work in progress.
Aaaaand... part 2!
Dr Jan Dutz (UBC, Professor): stopping beta cell.destruction by dampening or blocking the autoimmune response
Jan Dutz; rheumatologist, dermatologist.
Psoriasis: for years researchers thoug hr this was a skin disease. Turns out it is an autoimmune diseases. Drugs and treatments use antibodies
Drug marketed for psoriasis followed patients treated with ustekinumab. Bc of the narrow therapeutic index , it is very effective at one specific thing. Thses drugs are safer than immunomodulators that used to be commonly used. Instead, these drugs block signals between "intruders" and other cells.
T1D study started about 5 years ago? Found that it was safe, no notable side effects.
Study was not designed to prove that ustekinumab ... was effective ijn t1d tmnt. Only designed to prove it was safe. As this safety study was in progress, the drug was also being studied for use in IBD and Crohn's.
Follow-up study will be starting within 6 months. If used early in disease, can we prevent islet cell loss in patients with T1D?
Dr. James Shapiro: Human islet transplantation to reverse diabetes
Islet transplantation is considered fourth-line therapy bc of need for immuosuppressants.
Barrier to islet transplantation:
Shortage of donors!
Dr Shapiro is an incredible speaker. He packed an overwhelming amount of information into his 15-minute talk, most of which is too complex to summarize!
Dr Tim Kieffir, UBC prof:
Stem cells are amenable to large scale production.
Cured some mice:
Note my skepticism. While mice are an important part of testing any therapy, I can't bring myself to get excited about any researcher's ability to cure a NOD mouse.
Last presenter was Liz Ann Gillham-Eisen, Director, office of policy & Intn'l cooperation, Health Canada
What is regenerative medicine? Medicine to augment, replace, repair, or regenerate.
Latest federal budget had an emphasis on innovation in treatment technologies.
Investment into developing regulations:
Cell therapy meets the definition of a drug and is therefore regulated by health Canada. Most work in the "cell therapy" field is in the Investigational Cells category:
(CTO: Cells, tissues, & Organs)
CTO regulates homologous use, not autologous use (bc of risks associated with donors).
In keeping with true Canadian government standards, we of course have the obligatory translation on the next screen:
Wrapping up with the panel discussion and q&a with the second round of speakers:
Dr Shapiro answering a question on accessibility and affordability:
Cost is a major barrier. Small programs exist in Vancouver, Montreal, & Toronto, but these therapies are not widely available. Dr Shapiro noted that after Alberta Health cut off funding for non-Albertans, the remaining provinces also refused, which led to a reduction in patients accessing the treatments.
Dr Kowalski talked about JDRF International's fight for accessible insulin and tech treatments. JDRF International's focus here has been in the US, but they are branching out to Canada, Australia.
Federal government emphasized their commitment to drug affordability/accessibility. Takeaway from Liz's comment- the government is in the right space for this kind of progress; now it just needs to be brought forward.
Closing remarks came from Dr Nancy Tout, T1 parent and a JDRF Research Information volunteer, and Dr. Kowalski.
Dr Tout- the future is devices, ccell therapies, cure.
Dr Kowalski: outcomes beyond a1c. Time in range, quality of life metrics, etc. The benefits of hybrid closed-loop? Sleep, waking up in range. Huge important advances are coming in quality of life- what about devices that improve that but with no noticeable difference in a1c? Next hurdles would be highlighting the benefits of these systems.
The future is now.
Ok! I am way behind...abut 5 months, I think?
Either way, if you're interested in my interpretation of the conference, part 1 is below:
Dave Prowten, president and CEO of JDRF, gave opening remarks. These included a touching tribute to Dr. Bob Goldstein,
Next up was Dr. Cathy Parker from Health Canada.
- Symposium focus on digital health interventions
- Discussed HC mandates for access and affordability of services and devices
- Use the regulatory system as a facilitatator, not a barrier, to treatments.
Dr. Aaron Kowalski
Chief Mission Officer, JDRF
One part of Dr Kowalski's speech that struck me: "Despite significant advances, there remains an unmet need in T1D". He discussed the JDRF Research pipeline, including technology, the diy/openaps community, glucose-responsive insulin, restorative & immune therapies, beta cell replacement, and other topics that would be covered throughout the day.
Dr. Joseph Cafazzo, Associate prof at U of T: Use of digital health interventions to improve management of T1D
- usability lab, where they test use and uptake of advanced features
- How do you enable closed-loop tech when there are technical and social barriers to their use?
- Advocating for open standards
- Nightscout, openaps LOOP, etc were featured in presentatioon.
- Industry needs to acknowledge that lack of interoperability hinders self-care
Dr. Courtney Lias, Director of of chemistry and toxicology devices, US FDA
Pathway to artificial pancreas:
Medtronic 670g is the only approved Automated Insulin Delivery device.
In the US, there are at least 7 companies developing new (mostly hybrid closed loop) algorithms.
Devices don't currently enable interchangeable use. Cgm developers need to look beyond individual MARD. Mismatch of data between services can lead to problems, including treatment errors. Interoperability is the ability of different components to communicate, exchange data, and use the data that has been exchanged. Intetoperability does not mandate the transmission of proprietary data.
Grant Kealey, Health Canada Scientific Evaluator, Medical Devices Bureau
The road to health Canada approval:
While informative, this segment of the presentation seemed very...govt.
Class 3 (pumps and sensors, BGMs) vs Class 4 medical devices (AEDs, closed-loop pump/cgms). Class 3 and 4 devices undergo rigorous scientific review to confirm device safety.
Artificial Pancreas history in Canada: Minimal 670g, now available in the states, has not applied for a Health Canada license application yet. Medtronic confirmed that they intend to submit in the near future.
Investigational testing in Canada:
Insulin pumps in Canada:
Licensing of pumps does not necessarily need a clinical study. Exceptions include new features, such as novel hypoglycemia reduction features or new cannula systems. Licensing of new sensors does require a clinical study.
Health Canada's talk was very careful to not discuss any openaps projects, even on the slide for innovation in devices:
How is HC positioned to review evolving diabetes devices?
Docs on new regulations for Software as a Medical device are expected to be posted for public consultation this summer.
Part 1 Panel:
*I didn't take notes on every question!
How do HC and FDA work together to approve devices (joint review process)? Short answer- they don't. Alignment of submissions is a
Pat Stewart, Director of medical device something. R2d2 reg approval of devices. Part of that is looking at relshp with foreign reviews. Each govt had their own regulatory framework. Indicated there is some fwd mkovement.
HC approvals for pediatrics: is it always a separate application?
HC would need a liceense amendment to add pediatric to their device usage. HC says it comes down to the availa polity of data to support review in pediatrics. Might lead to small delays in approval, but no significant delays.
Pushback from endos re: safety of data. Dr Joe C noted that most of these digital hjealth apps are fairly passive and are patient centred. Why should endos object to how a patient views their data?
Dr Kowalski took a different view. Looking at studies if the diy community, safety analyses, etc.
HC: Enhanced use of real-world elements. Freestyle libre was one example of a postmarket study. He cautioned that these postmarket coknsumer data studies aren't necessarily providing data that has been vetted (e.g., estimated sensor a1c in a study, vs actual lab a1cs).
What told do you see the regulator playing in Software as a Medical Device?
Most are Class 1, or not considered a Medical device at all. How to protect the public? Google Play and Apple are starting to police these types of apps.
Dr Kowalski : there are people with low IQs walking around dosing insulin daily, and they're not dying. They are not supported by data, but are dosing insulin. There is huge opportunity in data and decision support tools/apps. AK pointed out there is this fear of insulin, regulators are conservative in approvals bc of the danger, but people are using these drugs anyways. PWD seem to show we are being too conservative.
People still get hypos with the status quo. The Status quo is dangerous.
I'm attending a JDRF conference this morning. The focus is on research, whether treatment-based or cure research, for type 1.
I'll update as the morning progresses, but here's a quick snapshot of the first speakers they have lined up:
I've been quiet here for a little while.
A lot of that has to do with Life getting Busy. Very Busy.
I am 6 months pregnant with our first little bundle of joy. It has been an exhausting, exciting, and terrifying couple of months. Baby and I are healthy and doing well, and are being monitored very closely by the endocrinologists and maternal-fetal medicine specialists at my hospital. I'm at the hospital for around 3-6 hours every 2 weeks, and I expect appointments to be more frequent when I hit my 3rd trimester.
Managing diabetes in pregnancy has been exhausting. Regular diabetes already felt like a full-time job; pregnancy diabetes is even more time-intensive (which I thought was impossible, but... I've learned). The mental load of constant monitoring, paired with the constant low-level guilt that comes with every higher-than-desired BG, is leaving me pretty wiped out. I'd love to say I'm this tired at the end of every day, but truthfully it's 9am as I type this and I'm just about ready to cry, then sleep for about 36 hours. Not sure if it's the insulin resistance or my body responding to getting less exercise, but the post-meal spikes are spikier, the lows are rougher and more brutal, and the t1d-management full-time job is feeling more intensive than ever.
We've got a few more months to go. Here's hoping for a healthy mom and baby!
The "Cure Research for t1d" email blast today came with some disheartening news. MK-2640 has been cancelled due to "lack of efficacy."
Not familiar with MK-2640? It
is was Merck's Smart Insulin. It has been going through a (slightly modified) phase-1 trial since early 2015. Not much info seems to be available re: the failure if the drug.
I've been following MK-2640 with a sort of cautious optimism for a few years now. It seemed real and possible and worth investing a bit of hope.
Hope's a bitch sometimes, isn't it?
A few words for my Diabetes.
So, diabetes, there's not much to note this year. It's a Sunday; I spent most of the day cooking and doing laundry. Exciting stuff. You know all about it- you followed me around all day, just as you have for the past few decades.
I started a new sensor but was about to eat dinner, then had just eaten, then ate dessert... so by the time I checked to calibrate, I was running pretty high. Hardly surprising. You remember this, I'm sure. After all, you were there to refuse to take my sensor calibration. "Too high," you told me. "Try again later."
I recently heard some good news about having CGM evaluated for coverage in my province. More on this later, but it could be very exciting. Who knows, diabetes-- maybe more folks in my province could be equipped with the tools and the tech that we need in order to kick you back where you belong??
Diabetes, you might have noticed that I didn't get in fights with anyone today. I didn't get rip-roaring drunk and bawl my eyes out about you, the incessant nuisance that refuses to leave me the fck alone. I didn't cave to the unhealthy habits of back in the day. I was....okay.
Maybe this is growing up? It feels like quiet resignation. A resigned sort of sadness. I might not be ripping into anyone who dares piss me off today, but I'm still feeling that deep grief that can't be paved over no matter how hard you try to ignore it. I guess this is now it is.
Diabetes, it's been 24 years. I don't speak to you directly very often, as I find it hard to stay reasonable in these conversations, but I will say this:
As ever year,
I very sincerely pray that someone; some divine ruler, some masterful scientist, SOME ONE hears these dreams of mine.
I hope only one of us is left this time next year.
I've had a few thoughts and things that keep coming back. In no particular order:
- We moved about a month ago. In the midst of unpacking and tidying, I've had a few lows that have fuelled house-cleaning rampages. These flurries of vacuuming, bleaching, etc are incredibly productive, if not particularly healthy.
- Hoosband was away camping with friends about 3 weeks ago. I fired up the Minimed Connect and added my mom to the list of people to be alerted by text if I went low, since Hoobs wouldn't have any cell service. Night 2 of this camping trip, I had a bad overnight low and I woke up to my dad offering me a glass of juice. I really, truly thought I was in good shape and had a handle on my overnight blood sugars. Guess it just goes to show that things are never certain when it comes to diabetes.
- My mom came grocery shopping with me on my first shopping trip after the move. When I mentioned that I needed dish soap, she pulled me aside and solemnly explained how I should go for the soap with a flip-top instead of a pull-top, as the pull-top bottles tend to get all gummed up with soap. I ended up stifling a laugh as I told her that it is a new house, yes, but this is far from my first time buying dish soap. I know what I'm doing. Sort of.
- I still haven't finished unpacking my pump supplies. I'll get to it... when the current box of infusion sets runs out.
Diabetes has been taking a backseat to the rest of Life lately. That should really change, soon.