I happened to stop by my forums on T1D that I go to here and there..they are awesome for issues...turns out that the pump issue I wrote about before? It was never the pdm device that failed but the actual strips are giving a false low. So if you have an insulin pump that uses these strips or this meter please go to their site for more information!
https://www.abbottdiabetescare.com/press-room/2013/2013-g.html
Fee
11.21.2013
We will, we will ROCK you
We had our 5 month checkup at Dr. Kassar's office. Dr. K is Katie's rockstar endocrinologist. We were so lucky to get him. He's the best there is and he's booked solid. But our family doctor got us in to see him and we are so happy we did. He's very pro pump and pro cgm. Very. Says it's the key to a successful journey with this disease.
We had an a1c done when we were first diagnosed. It was 12.1%. A normal test level is 4.5-6%. That is our target. Her blood sugars on average for those months then was 298. Which matches her fasting blood sugar test. But keep in mind that was fasting. The doctor thinks her blood sugars were really in the 400s for a long time before we realized how sick our daughter was!
From the Mayo Clinic website:
Fast forward to today- they pricked her finger. Katie and I and AnnaGrace waited and worried a bit I think. Katie finally said..I will be happy if it's down 1% to 12. I reply: Hon that's .1% not 1%. We laugh to break the tension. She says ok then if it's 11% I mean. I'm like...I'll be happy if it's down .1%. Everything I read said it takes awhile. The nurse comes in and won't say anything about results. We ask and she says- I'm sorry Dr. Kassar will discuss it with you. I think- oh boy.
Dr. Kassar comes in all smiles...dancing a bit. Says she's a rockstar and the best patient he ever had. He cuts himself off and says..that the change was maybe not the biggest he's seen, maybe there is one other. We have no idea what he is talking about at first. Then he says if her a1c is 10 or 11% they are happy..very very happy. And he says guess what yours was. I'm like 8. He says no I'm sorry you are wrong. I'm like..that's ok..is it 9? he says no- 7.5%.
7.5%!!!!!!!! This is astounding. He's not sure other than one other patient one he has seen that has done as well getting their blood sugars under control so quick. I start tearing up and say it's obvious she has an awesome team who has been instrumental as well as the Dexcom and the pump. But that the true warrior is Katie because she did this. She took it seriously and took her shots and cried through a lot but came out stronger and HEALTHIER. It's obvious. She is tired and exhausted as she finished a straight A semester of HONORS college and working full time but she's not wiped out from the diabetes!
I was telling Kev later and he said...honey she only got the pump in October it obviously was the dexcom. And he's right. That continuous glucose monitor. As bad as the customer service/billing can be and as clunky as it is to insert (not automatic and people hate it because it's painful) it works. It's working and is why she has such tight control now. Does she have highs and lows? yes here and there but overall on average her blood glucose levels are so much better!!!!
Best news ever and reason why we are giving thanks!
We had an a1c done when we were first diagnosed. It was 12.1%. A normal test level is 4.5-6%. That is our target. Her blood sugars on average for those months then was 298. Which matches her fasting blood sugar test. But keep in mind that was fasting. The doctor thinks her blood sugars were really in the 400s for a long time before we realized how sick our daughter was!
From the Mayo Clinic website:
The A1C test is a common blood test used to diagnose type 1 and type 2 diabetes and then to gauge how well you're managing your diabetes. The A1C test goes by many other names, including glycated hemoglobin, glycosylated hemoglobin, hemoglobin A1C and HbA1c.
The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.
We had an a1c done when we were first diagnosed. So why do this test? Because it looks at your blood sugars for the past few months rather than just at a series of daily blood sugar levels. It's a great test to see how well your diabetes plan is working or not working. For type 1 diabetics - she will be tested about 4x a year. Type 2 diabetics should be tested about 1-2 times a year. I remember posting the image of the thermometer of the % of a1c level and Katie's was off the top of the thermometer at 12.1%. It was scary and a good picture that she was seriously ill.....Fast forward to today- they pricked her finger. Katie and I and AnnaGrace waited and worried a bit I think. Katie finally said..I will be happy if it's down 1% to 12. I reply: Hon that's .1% not 1%. We laugh to break the tension. She says ok then if it's 11% I mean. I'm like...I'll be happy if it's down .1%. Everything I read said it takes awhile. The nurse comes in and won't say anything about results. We ask and she says- I'm sorry Dr. Kassar will discuss it with you. I think- oh boy.
Dr. Kassar comes in all smiles...dancing a bit. Says she's a rockstar and the best patient he ever had. He cuts himself off and says..that the change was maybe not the biggest he's seen, maybe there is one other. We have no idea what he is talking about at first. Then he says if her a1c is 10 or 11% they are happy..very very happy. And he says guess what yours was. I'm like 8. He says no I'm sorry you are wrong. I'm like..that's ok..is it 9? he says no- 7.5%.
7.5%!!!!!!!! This is astounding. He's not sure other than one other patient one he has seen that has done as well getting their blood sugars under control so quick. I start tearing up and say it's obvious she has an awesome team who has been instrumental as well as the Dexcom and the pump. But that the true warrior is Katie because she did this. She took it seriously and took her shots and cried through a lot but came out stronger and HEALTHIER. It's obvious. She is tired and exhausted as she finished a straight A semester of HONORS college and working full time but she's not wiped out from the diabetes!
I was telling Kev later and he said...honey she only got the pump in October it obviously was the dexcom. And he's right. That continuous glucose monitor. As bad as the customer service/billing can be and as clunky as it is to insert (not automatic and people hate it because it's painful) it works. It's working and is why she has such tight control now. Does she have highs and lows? yes here and there but overall on average her blood glucose levels are so much better!!!!
Best news ever and reason why we are giving thanks!
Device malfunction
Why do all things like malfunctions on durable medical equipment (CGM and pump) seem to happen when you are far from home..on a weekend morning when maybe their is no support staff to help? Katie realized when we were visiting our friends in Elkhorn that her dexcom and pump were not in sync blood sugar-wise. Her dexcom was saying high but her pump was saying low...everytime Katie tested her blood it was coming up LOW so she was eating and eating in the morning. It was weird because she was getting loopier and loopier too.
Understand- the Omnipod pump has it's own built in blood glucose monitor. So she's able to put a test strip into the pdm and then test her blood and bolus (give instant insulin via a pump pod she wears) or adjust her basal (continuous stream of insulin through the same pod) as needed. So her pdm was telling us low. I asked her where the control fluid was. Omnipod also provides a separate blood glucose monitor because let's face it..if what happened -happens to Katie's monitor you need to have backup. Not to mention that just because she has this pump means nothing less for carrying items. She still carries needles now in addition to her humalog so she can instantly inject insulin if needed.
So she couldn't find her control fluid..didn't know if she had it. Didn't have her spare glucose monitor (Really?! I asked only 20 times if she had everything she needed..I think I'll give her a note with everything listed next time!) And we are in the country on a farm. I could have driven into town and BOUGHT a new monitor but that was annoying me. So even though she was annoyed (high blood sugar which we didn't know at this point) at having to dump her purse..I made her do it and lo and behold there is a control bottle.
The control fluid is red and is dropped onto a strip and then you can make sure your meter is reading correctly. Based on my limited research the meters are allowed by the FDA? to have a certain % of error..not really cool and the range is wide. So it's imperative to test to the control about 1x a month on all devices. The Dexcom (continuous glucose monitor) that Katie wears like an insulin pod (a 2nd pod) tests her blood every 5 min but she can calibrate it whenever needed and it MUST be calibrated every 12 hours. It beeps and is annoying until she does.
Anyway the pdm was tested and it was reading LOW this whole time and when the pump reads low -you guessed it- it stops pumping insulin into her system. But she was really high and getting dangerously so! There was NO way to reset the pump to read properly and so we knew we'd have to swap it out. Stupidly the OmniPod does not allow you to adjust your Blood glucose levels..but that would be a great option to have..even if it's something built in but locked and only can be done when you call in or something. I get why it's a safeguard but she basically had to go back to injections and they replaced the OmniPod..they overnighted it to her no problem.
The Dexcom people were more obnoxious. Right after we got home from Elkhorn her Dexcom was reading way off (usually happens towards the tail end of a week- I don't understand how people get up to 12 days off one sensor..it's so far off the actual numbers it's useless usually by day 6). And then just refused to boot up. She called them and they wanted her to reset it (which she had already tried) while she was at work. She was crabby so I called the guy back after she waited over an hour for a reboot that never happened. And the guy starts telling me if there is water damage they won't cover the replacement and will charge me. I told him he could try but that I would just return the device then. First- it doesn't have water damage. 2nd...it should be sturdy and be waterproof...3rd he was trying to tell me that the port door breaking off damaged the inside and caused it to not work. HA. and so on. But we finally got it replaced too and so far- no bill......
Understand- the Omnipod pump has it's own built in blood glucose monitor. So she's able to put a test strip into the pdm and then test her blood and bolus (give instant insulin via a pump pod she wears) or adjust her basal (continuous stream of insulin through the same pod) as needed. So her pdm was telling us low. I asked her where the control fluid was. Omnipod also provides a separate blood glucose monitor because let's face it..if what happened -happens to Katie's monitor you need to have backup. Not to mention that just because she has this pump means nothing less for carrying items. She still carries needles now in addition to her humalog so she can instantly inject insulin if needed.
So she couldn't find her control fluid..didn't know if she had it. Didn't have her spare glucose monitor (Really?! I asked only 20 times if she had everything she needed..I think I'll give her a note with everything listed next time!) And we are in the country on a farm. I could have driven into town and BOUGHT a new monitor but that was annoying me. So even though she was annoyed (high blood sugar which we didn't know at this point) at having to dump her purse..I made her do it and lo and behold there is a control bottle.
The control fluid is red and is dropped onto a strip and then you can make sure your meter is reading correctly. Based on my limited research the meters are allowed by the FDA? to have a certain % of error..not really cool and the range is wide. So it's imperative to test to the control about 1x a month on all devices. The Dexcom (continuous glucose monitor) that Katie wears like an insulin pod (a 2nd pod) tests her blood every 5 min but she can calibrate it whenever needed and it MUST be calibrated every 12 hours. It beeps and is annoying until she does.
Anyway the pdm was tested and it was reading LOW this whole time and when the pump reads low -you guessed it- it stops pumping insulin into her system. But she was really high and getting dangerously so! There was NO way to reset the pump to read properly and so we knew we'd have to swap it out. Stupidly the OmniPod does not allow you to adjust your Blood glucose levels..but that would be a great option to have..even if it's something built in but locked and only can be done when you call in or something. I get why it's a safeguard but she basically had to go back to injections and they replaced the OmniPod..they overnighted it to her no problem.
The Dexcom people were more obnoxious. Right after we got home from Elkhorn her Dexcom was reading way off (usually happens towards the tail end of a week- I don't understand how people get up to 12 days off one sensor..it's so far off the actual numbers it's useless usually by day 6). And then just refused to boot up. She called them and they wanted her to reset it (which she had already tried) while she was at work. She was crabby so I called the guy back after she waited over an hour for a reboot that never happened. And the guy starts telling me if there is water damage they won't cover the replacement and will charge me. I told him he could try but that I would just return the device then. First- it doesn't have water damage. 2nd...it should be sturdy and be waterproof...3rd he was trying to tell me that the port door breaking off damaged the inside and caused it to not work. HA. and so on. But we finally got it replaced too and so far- no bill......
Xmas Photo Shoot 2013
Mike is always so serious. Sigh. I just take what I can and hope we get a good image of him. I think he is so like his dad..get this over with...he tolerates the picture and would wear whatever was on his body. Such a boy! He's a sophomore this year and 15 now. Amazing to think he has his permit and can get his license in June next year!
Kev is always lurking around trying to get the kids to laugh. I think he succeeded a bit too much :)
She was not feeling 100% here but she tried for me. This disease causes her weight to go from extreme to gaining some (still thin as hell though ya know?) but she thought she lost all that weight before from dieting and exercise. Poor kid....I'm like..nah this is healthier and she's glad to have her curves back but this day was an outfit she wasn't wanting to wear and all her other clothes were either falling off her or too small (we went shopping to get some things that did fit and a new photo shoot has to happen soon!)
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