A1c: Working 9 to 5
I remember the first time that I was able to make Arden's A1c decrease on purpose.
I don't remember what her level was or where it moved to but I remember making an adjustment to her regiment that worked as I anticipated and the moment that her Nurse Practitioner walked up to me to share the good news.
The decrease was minimal and Arden's A1c was still much higher (in the 9s) than where we hoped for it to be, but still I broke down and cried in the waiting area when the NP told me the news. I must have been quite the site because after a moment I felt the NP put her arms around me and she hugged me tightly without saying a word.
That moment in our lives occurred many years ago. On that day I believed that I was crying because Arden's A1c was lower, but today I think that the relief I was feeling stemmed from success – effort was finally turning into results. Moving that number however how slightly, was the result of hard work, hours of contemplation and months of trial and error. The tears that I shed had accumulated from all of the moments that I wanted to cry but didn't and it felt right to release them in celebration, I could sense that the tide was turning.
In the years that followed more adjustments were made. We added the OmniPod insulin pump, a decision that led to a large decrease in A1c. We also changed how we thought about many foods but the final piece of the puzzle was adding a Dexcom CGM which gave me the confidence to use insulin more boldly. We now had the tools that I felt I needed and the path to travel was clearly in front. We just needed to learn how to walk. Each step was a learning process that led to incremental improvements for Arden but we were finally moving forward with purpose and that seemed like a huge leap.
I love to tell these stories because even though it doesn't feel like it today, you won't be reading this blog for much longer, at least not for the same reasons as when you began. Arden's Day readers are mostly made up of the parents of newly or newer diagnosed children and folks who are still finding their way with type 1 diabetes. One day, much sooner than you think, you will have the accumulated knowledge, courage, and hope that you will need to make Arden's stories your own. Then you can get back to using the Internet for good stuff like reposting photoshopped pictures of Kim Kardashian's shiny ass, taunting your friends on Facebook when their sports teams lose and 'liking' pictures on Instagram.
Here in present time... it was Endo day. I tried to give Arden my obligatory speech about A1c levels and ready her for an unexpected increase that will likely happen at some point. I want to prepare her because we have been on some kind of a crazy run over the past two years and my hope is to limit her disappointment, should things go the other way. Arden stopped me before I could finish and said, "I know, I know, you tell me every time - I won't be disappointed if it goes up". Seems that my sly parenting skills aren't so sly anymore...
When we arrived the nurse recorded Arden's weight, height and BP and then we made our way to the little room where the blood stuff happens. The A1c machine began it's test as we were being ushered into an exam room. Not long after we sat down, the NP brought Arden's A1c results to us. When she spoke the number out loud there were no tears of joy, no relief, no sense that we had been working hard for what was achieved and deserved this. Arden's A1c had reached a new level, one that I certainly didn't expect we would arrive at for maybe another year. Hearing the number only caused me to feel calm. "I knew this was going to happen if we just kept at it", I thought to myself.
I put my hand on Arden's back and congratulated her and then texted my wife Kelly with only this image, her response was...
"Shut up!!"
This post is for everyone who is at the point where 5.9 feels unobtainable. I am here to promise you that it is within your reach. Each of you can do this with time and patience. It hasn't been easy. We've added technology, switched insulin, adjusted diets, sacrificed sleep and persevered countless setbacks, some of which I thought could break my spirit. Yet here we are at 5.9.
I don't know how long we can hang on to this number. Maybe this is our new normal, maybe it's a fleeting moment and puberty will come and knock us into oblivion, who knows. None of that matters because I know and believe that we can find our way back here again; this time with purpose.
A1c Countdown: It's Endo Time
Endo time...
Only 24 hours before the American Diabetes Association announced their new A1c guidelines for children 19 years old and under, Arden was in her Endocrinologist office for her quarterly appointment. We missed her previously scheduled appointment in April because of an illness. At that time the Doc told us, "Arden's A1cs have been good for the last year and a half... let's just get back together in June".
Skipping a quarterly appointment made me feel strange but the three months seemed to fly by and before I could wonder what happened to the time, it was June and I was signing Arden out of school just like we have every three months for the past 8 years. It was Endo time. I found myself thinking about those numbers as I drove to the office.
"Diagnosed in August of 2006... first Endo appointment was in early September..."
Then I counted off the months. "October, November, December... December of 2006 was her second visit. Then four in 2007, 2008, 2009, 2010, 2011, 2012, 2013 - we just skipped April of 2014, so this is maybe, Arden's 32nd visit to her Endocrinologist.
This thought made my heart heavy until I remembered my recent trip to the Dominican Republic, and I was quickly reminded that there is an entire planet full of people living with diabetes and most of them can only wish that they were able to visit a doctor. I adjusted my thinking and instead of the number 32 feeling like an albatross, it started to feel like a life preserver.
I walked into Arden's 32nd Endo appointment with a fresh set of eyes. Arden however, was not in the same mindset - she was preoccupied, unusually nervous and she seemed just a bit unsettled. When I asked her why she said, "I think I get a blood draw today... I really don't want to do that". A few minutes after we got into the waiting room a nurse called our name and we were off. These visits have their own pattern. Height, weight, blood pressure and other vitals happen in a room thats no bigger than a walk in closet, then we head down the hall for a hemoglobin A1c test and blood draw when necessary. The nurse started with Arden's A1c, loaded the sample into the machine and then ushered us to an exam room, "No orders for a blood draw in the computer", she said. Arden was relieved but confused, "I always get a blood test in the summer", she told me as the nurse left the exam room. Then she smiled as if she had gotten away with something big. About a month ago Arden experienced serious and sudden needle anxiety while at a dentist appointment, this was new for her, and I never imagined that it would translate to her Endo appointments because while she doesn't enjoy the blood draws, she has never resisted them or been afraid.
After the nurse left the exam room we chatted about softball for a minute (Arden's 9 year old All Star team had just won their tournament the day before) and then I snuck back to the phlebotomists room to get an early peek at her A1c result.
Arden's A1c has been steadily improving for the past two years but this was our first experience with skipping a quarterly appointment and I was irrationally concerned that would mean an increase from Arden's last result of 6.7. When I arrived in the room, it was empty and there was about one minute left in the process... just enough time to get my phone out of my pocket.
Watch the ten second video before you read on - trust me.
My heart did a backflip when "6.2" appeared on the screen, a back flip. In July of 2009 Arden's A1c went from 8.5 to 8 when we switched from shots to the OmniPod insulin pump. In October of 2012 I blogged about the factors that I believed helped get us to her new best of 7.5. I remember just hoping for 7.4 in June of 2013 when Arden's A1c made a serious leap to 6.5. We stayed steady for some time around 6.7, and to be honest, staying steady felt like a bigger accomplishment than achieving a decrease. The decreases come as you make adjustments but who knows if they are anomalous... steady is, well, steady... it's balance, it's relief. I love steady!
That said, I'd be lying if I told you that 6.2 didn't make me wonder what a number that began with five would feel like...
Oh, and we did need to get blood drawn on this day, but that's a whole other story...
Arden does not experience significant or frequent lows. Achieving a desirable A1c under those conditions is not healthy nor an indication of health. Steady is much better than fluctuations that "trick" you into feeling good at A1c time. Please remember to read my discloser, it will remind you that I have no medical training and this site is not meant to replace your doctor because my words are not meant to be advice. Arden's Day is just a blog.
A1c Three-peat
One year ago, Arden sat in my car after her endocrinologist appointment and asked me what she could do to lower her A1c. At that moment, her A1c was 7.4 - it had been a full point higher just one year prior. Three months later, we returned to see if the adjustments that we made had any effect and that's the day we saw the first result under 7.
Three months after that, Arden's A1c was 6.7, and then yesterday... it was 6.7 again.
That's three consecutive A1c results under 7 - I'm calling that a three-peat.
There are many ways to celebrate an A1c while you wait for you NP to come into the room, on this day Arden and I choose VolleyGlove. Even though we haven't played in quite some time, you will see in this video that our skills remain intact. #sochi?
I'm always looking for ways to make Endo day less of a drag. VolleyGlove is a time-honored favorite.
Holy @#%&*$% A1C
Seven years in dog years is what, 49? Well in A1C years, it's 28. Arden has had twenty-eight A1c tests since she was diagnosed and most of them didn't go too well. As I've shared in the past, Arden's A1c began it's journey above nine and drifted lower over the years as I learned how to better manage diabetes. It wasn't until recently that we've made real strides in decreasing that elusive number.
From the American Diabetes Association's explantation of Estimated Average Glucose (eAG) - check it out!
August is rapidly approaching which can only mean two things around here. The seven year anniversary of Arden's diagnosis, and the sixth anniversary of this blog are both coming soon.
Seven years in dog years is what, 49? Well in A1C years, it's 28. Arden has had twenty-eight A1c tests since she was diagnosed and most of them didn't go too well. As I've shared in the past, Arden's A1c began it's journey above nine and drifted lower over the years as I learned how to better manage diabetes. It wasn't until recently that we've made real strides in decreasing that elusive number.
I spoke in the past about the things that I attribute to helping Arden's A1c to fall. Things like finding the correct insulin for Arden, and technology like her DexCom G4 and OmniPod insulin pump. I recently wrote about Arden's decision to stop eating Fruit Loops and I think that may have put us over the top in this battle against "the number".
One year ago Arden's A1c was 8.1. Nine months ago we made real progress, 7.5 and back in January it was 7.4. I loved that 7.4 because it showed that the reduction wasn't a fluke, we were on to something! Today when we went to her Endo appointment I was certain that we would see another incremental reduction, and I was secretly hoping for 7.1. As I watched the timer count down on the testing equipment, my heart sped up just a bit. The last 10 seconds ticked away slowly, as I hoped to see that 7.1.
I'm not sure how I kept the words in my head when I saw the number, but somehow I didn't say, "Holy F*ck" outloud when the machine displayed Arden's latest A1C.
It was 6.5.
Six point five.
Six and a half.
Arden's A1c had dropped .09 in five months. I must of read that wrong I thought, so I stood up and looked closer and there it was just as clear as day, 6.5. I turned to Arden and said, "We did it Arden!". Then, without missing a beat, Arden warned the nurse that I was going to cry - but I never did. I wanted to cry, I wanted to scream into the air but I just sat back down, smiled, and told the nurse how Arden decided all on her own after our last visit to stop eating cereal for breakfast. "This was all her", I told the phlebotomist, "Arden asked after her last A1C what she could do to help it to go lower and I told her... she did the rest".
Back in February when Arden's A1C was 7.5 I listed a few simple reason that I thought helped the most to decrease her average daily blood glucose. I'm going to post them again here and then add two new ones.
Support - Love and support from family, friends and teachers is huge.
Insulin Pump - Being able to give insulin quickly and unobtrusively for meals, snacks and high BGs.
CGM - Arden's DexCom is a window to the past, present and future of her BGs and I couldn't make the pinpoint adjustments that helped us get to this new level without it. It's sad to me each day that the FDA doesn't approve it's use for young people.
Over night monitoring - Arden is sleeping almost half of each day, if you can control the night then a few bumps during the day don't hit the A1c average so hard.
Apidra - Arden's BGs are move stable on Apidra then they ever were with the other insulin she was using in the past. Make sure you are using the insulin that works best for you... not just the one some sales person gave your doc.
D.O.C. - You all give me strength to do these things when I otherwise feel like I can't. It's knowing that one of you is awake, sad, crying, happy or running around out of your mind like me that makes me realize that I'm doing okay.
new
Aggressively dealing with BG spikes - You know the ones, after a site change or miscalculated meal. In the past I preferred smaller boluses in the attempt to avoid a low but now I lean on the CGM and smack a high number in the face, preferring to catch it with carbs if I've administered too much insulin. The other way always left me bolusing and rebolusing for hours on end. The only thing I was accomplishing was taking five hours to guide Arden's BG back into place. Now, insulin, watch, catch the fall - done.
The new way that we manage BGs during the school day - Arden has four more days of school left this year and she has NEVER been to the nurse for a diabetes related reason, never. Arden and I text and speak by cell phone to manage her moment to moment type I needs. This new plan is one of the keys to her A1C reduction. In the past, I would make insulin and carb decisions only when Arden was with the nurse. This schedule left large gaps of time when high BGs, miscalculated carbs and the other diabetes anomalies would be left unaddressed. Now, Arden can text me if her BG is slightly elevated after lunch and we make small adjustments as we would if she was home with me. Lows are handle in kind, no more big carb intakes because I won't be in contact with Arden for many hours. We bump borderline lows and readdress if that bump didn't do the trick. No longer is the school day an eight hour crap shoot, Arden's diabetes is being dealt with immediately when in acts up. I plan on speaking more about this at length in the coming months.
This seems like a good time to remind you that I am not a doctor and that there is a clear message at the bottom of this page that insists that you never take anything that I say as medical advice because I do not mean these words to be such. I would however suggest talking about these easy adjustments with your doctor...
Update
on 2013-06-11 19:02 by Scott Benner
I originally posted an image with this piece that had some bad information on it. Thank you to Sara (@saraknic on Twitter) for pointing it out and leading me to the new graphic from The American Diabetes Association. Please check out their page about Estimated Average Glucose (eAG) and howitrelatestoA1C. Very cool stuff!
I'll have Two Eggs Poached, Toast and a Scoop of Maturity
How do habits start? Sometimes it's difficult to remember how you got where you are and with each passing day it becomes harder to imagine a life that is different. That sentiment can be applied to so many aspects of of our days, but today it will help me tell a story about breakfast.
Arden was two when she was diagnosed, that was a long time ago. Those beginning years were well before I knew about the glycemic index, before I understood that all carbs weren't created equally. Today I know better but that knowledge still wasn't helping me to break Arden's cereal habit. That girl enjoys a Fruit Loop.
It's strange to some degree because Arden isn't a junk eater, doesn't like candy and other sweets. She's the kid that goes trick-or-treating to dress up and run around, not for the candy. Yet every morning she has one cup of Fruit Loops with fat free milk - and her BG's take a hit because of that choice. It's a choice that I sanctioned many years ago, and one that I regret now but all of the talking in the world wasn't getting Arden any closer to eating something different. At some point I gave up on trying to get her to change and set out to try and defeat her spikes as best as I could. I did that with a combination of pre-bolusing, temp basals and shear will. I learned how to defend against spikes and create boluses that didn't cause a low, all because of my battle with Toucan Sam. I guess that I should be grateful for that lesson, and I am. None of that however could make me feel any less like a drug dealer when I handed Arden her cereal in the morning.
But then something wonderful happened...
Arden got tired of the spikes. She began to pay attention to her health in a way that I found astonishing, I did not expect her to make this leap so soon and it all started at her Endo appointment. Arden's A1c experienced a significant decrease about six months ago. Her NP made such a great celebration of her achievement and gave Arden a huge hug as she told her how happy she was for her. As much as I believe that her encouragement got the ball rolling for us... it wasn't until Arden's next Endo appointment that she decided to take her fate into her own hands. Three month later Arden's A1c decreased again by .01, an accomplishment for sure, but it apparently didn't hold a candle to the previous decrease, at least in Arden's mind.
As we were driving home Arden asked me how she could get her A1c to go even lower, I could see that she was feeling competitive with that number and also beginning to think about her health in a different, perhaps more mature way. I didn't want to make too big of a deal about our conversation and so I offered a few small suggestions. We spoke about being a bit more patient before eating an unscheduled snack to give a bolus more time to work, (we pre-bolus meals but small unexpected snacks not so much). I suggested that we could exchange a grain for another vegetable at dinner and then I slipped in that making different breakfast choices would definitely help. The conversation turned to her CGM graph and I explained about how the prolonged spikes from the cereal raised her A1c. It all may sound like too much as I explain it here, but this was an easy and quick conversation in our car, nothing heavy.
One week later Arden approached me about finding new options for breakfast and she hasn't had a bowl of Fruit Loops since. She is growing up, understanding more, and I am proud to be able to say that I can see her wanting good things for herself.
I don't remember thinking even once about my health when I was eight.