muddybrooks

My experiences post total pancreatectomy.

I think I’m definaitely an IDIOT!! (caps intended!!)

I like to think I’m a reasonably intelligent woman or at least I seem to learn quickly. But either I’m losing IQ points since having turned 50, or I’m just an IDIOT!!!

Now, I’m almost 2 yrs into my T1 dance & as u know, I’ve really tried to do my research to understand my new normal, but I seriously made a HUGE misstep and I did it twice!!

I’ll explain… I’m trying to incorporate a daily after dinner walk in an attempt to control my post-prandial highs. Great in theory!!Usually, when I go for a walk whenever, I check a BG and also, carry my meter and stuff and enough Smarties for at least 2 low treatments. Key word here is usually!! I didn’t check my BG, nor did I carry “my kit” of usual suspects this time!!

Luckily, my new walking pattern is after a meal & I do pretreat my insulin at least 10 mins before my meals. So, my BG was likely higher from the meal but I really had no idea. I’m VERY lucky that I didn’t experience a low but I’m angry w myself for “forgetting” to do the usual precautions I normally take. It was really irresponsible!!!

Now, the reason for the capitalized IDIOT!!! Unbelievably, I DID IT AGAIN!!! And, this time I wasn’t so lucky!!! I had a low that produced the “dumb” symptoms I say that I experience. I was walking w a friend, but I couldn’t verbalize that I was low and without my “kit”. She asked me if I was ok but all I could say was, “yah.” So, we parted ways and I very shakily continued the block to my house.

I’m fine but I guess what I’m trying to say is don’t do what I did, TWICE!!! Please, please, please… Take a minute before u go for ur exercise or just running out the door to do an errand & make sure u have what u need to be safe with u!!!!

We all matter!! & I’m selfish & I want u around to read my silly blog!! Thanks for that by the way!!!

Remember, CHECK!!! Don’t guess!!!

And Happy Thanksgiving to everyone!!!
Try an after meal or between courses walk on turkey day, but please bring ur stuff!! Learn from my mistakes!!! I know!!! I’m an IDIOT!!! Don’t be like me!!

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Type 1 vs Type 2 research

A very close friend recently had a high A1c after a few years of controlling his Type 2 with diet and exercise. At a recent follow up endo appt he was told he needed to go back on to Metformin in an attempt to decrease his A1c. He had gained some weight due to being sedentary over the winter due to illnesses and injury. Needless to say, he was devastated with this news. He felt like a failure after having been successful for many years with diet and exercise. He called me very distraught and devastated about his A1c. I tried to console him and gently told him that for the near future we would be on a fact finding exploration to determine what his BG was doing. Like I try to tell myself, I told him there was no emotional value in BG readings. We are scientists collecting information to make treatment tweaks to his meds and diet & exercise.

Why do we always, at first glance, condemn ourselves when we have an out of range BG reading. I’m working hard at it but it still takes my breath away when I get a wacky reading wondering what I did wrong for my BG to be so out of range. My friend was so dejected and disgusted with himself. He wanted to give up right then and there, telling me, “Why should I bother caring?? It won’t get me any where!” I promised him I would brush up on my T2D knowledge and together we would navigate these new waters. I told him we were in this together & I would do all I could to help him learn to care for his T2D. So, I have been immersed in T2D research and have learned a great deal about the differences between T1D & T2D.

I admit I wasn’t as well versed about T2D as I was T1D but I have done a great deal of reading & learning how to manage this type of D. First off, I asked him if he could commit to testing, for starters, twice a day-a fasting upon awakening and a BG check before bed. He has done an excellent job in taking on these new tasks. I was a little shocked to hear his endo tell him that testing wasn’t that important & to test “whenever”. I told him we needed to see what his baseline BG’s were doing & if the metformin was working or did it need to be tweaked. He has taken these new tasks on , as well as, checking before lunch and postprandially to evaluate his baseline BG’s. Doing so brought some interesting info to light that we wouldn’t have been aware of without him testing as he had. He has a very reactive response to any carbs, so he’s working on cutting portion sizes and making better carb choices. He is going to make an apt to see the Registered Dietician at his doctor’s office soon to help with this.

My friend pointed out that I actually have it easier in dealing with my meals because I can bolus for any amount of carbs I ingest where he doesn’t treat for carbs or correct for a high BG at this time. I agreed with him but I told him to hang in there. We are still in the beginning of his treatment of this beast and needed to continue to collect as much data to further evaluate his BG response to the Metformin and the new exercise plan he has embarked on. This weeks new task is to log the time and BG reading he gets so he can show his endo when he sees him next. This has been a little challenging as we all can relate to how much we hate to keep a log. We’re looking at a few different iPhone apps to help with this, as well as, trying to get a meter that would automatically sinc his BG reading with his iPhone. We’re looking at the Verio Sinc, specifically. It would be great if his insurance covers the strips for the Verio., then he could email his BG results to his doc for any appts he has. Any one have any suggestions as to a meter which would help in his quest to have his BG’s automatically download, taking the hassle out of logging?? Also, are we correct in that the Verio sincs with the iPhone?? He has an iPhone so we’ve been searching and trying out new diabetes apps regularly.

It seems the Metformin is starting to kick in as his BG’s have come down a bit, especially fasting. It’s been very informative in researching T2D to help my friend. I also have another support person in him to help me with my day to day management of my T1D. We have each other’s back in the diabetes war. I’ll keep updating the blog with what I’ve learned through this new chapter in my and my friend’s life as I try to support my good friend.

 

Remember, check! Don’t guess!!

(Now, My friend understands why I say this phrase.)

 

 

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Learned some new cool facts about T1D vs surgical T1D

Happy Saturday!! Hope you are enjoying your weekend!!

At a recent endo apt, I learned an interesting fact about glucagon production in T1D versus surgical T1D. Again, although I’m an RN, for the purpose of this blog I am not a diabetes professional and you should ask your T1D team for further info and confirmation of what is offered here. Now, with that out of the way, let me tell you what I learned…

I asked my doc about glucagon in the diabetes population. I had heard conflicting information regarding the different types of diabetes and the PWD’s ability to produce glucagon. In T2D, the person’s alpha cells that produce glucagon work ok in the beginning of the disease process. But as the disease progresses, her/his ability to produce glucagon is diminished.

In the straight up, immunodeficient T1D, again the alpha cells are able to produce glucagon, but when the beta cells which produce insulin are unable to do so, the alpha cells get confused. Medical science has not come up with the reasoning behind this yet, but we’re hoping they are able to do so at some point in the future! These confused alpha cells, produce some glucagon but are not able to get it where it needs to go in the event of a low.

In surgical T1D, there is no production of glucagon because the alpha cells have been removed along with the beta cells and the rest of the pancreas. I’m hoping to have a discussion with my transplant surgeon soon, so I can ask him if alpha cells are transplanted along with the beta cells during the auto (meaning your own cells so no immunosuppressant drugs are necessary) islet cell transplant that occurs in the type of surgery I had for chronic pancreatitis. I’m not sure if the purification process that currently is available can separate the alpha from the beta or if they just get transplanted together and we all hope for the best. Plus, I’d like to know if the alpha cells are as sturdy as the beta cells and do they survive the purification and transplanting process. I’ll get back to you when I know more on this point.

It’s important, if you are on insulin therapy to ask your doctor for a glucagon prescription and carry it with you at all times. It’s better to have it and not need it, than to need it and to be without. My endo didn’t offer it to me but after reading many articles on the DOC (Diabetes Online Community), I learned that I needed a script. My doc didn’t hesitate to give me one but it confuses me that we have to ask for it when, I believe, it should be offered to anyone on insulin therapy. That’s because, it is more likely to experience a low with insulin than other forms of treatment, so we should be prepared just in case.

There are instructions in the glucagon case on how to use it and there are many youtube.com videos detailing how to use it. as well as, an iPhone free glucagon app that is an excellent resource for friends with an iPhone. I have had glucagon get-togethers with friends and family with the purpose of explaining lows to those who love me and also, explain the glucagon and how it is used. I take expired glucagon kits and let friends and family practice with them. This goes a long way when and if there is ever a low that I can’t reverse by myself. Hopefully soon, as a result of all the closed loop system research going on, that a better form of glucagon than the one currently available will soon be developed and made available.

In my opinion, it doesn’t seem to matter if your T1D or T2D or a surgical T1D. The glucagon whether there or not, is not able to be used in the manner a normal functioning pancreas is able to provide. Therefor, we must supplement the glucagon if the low is incapacitating the PWD or treat the low before it gets that bad with immediate release forms of glucose. I just thought it was interesting to know what is actually happening in the different forms of diabetes, so I’m passing this along to you.

Remember, TEST!! DON’T GUESS!!!

 

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Hospitalization used as an opportunity to complete basal testing.

Every now and then, my “new normal”, the results of having had a total pancreatectomy, rises up and makes themselves the center of my attention. I occasionally experience significant abdominal pain, nausea and vomiting, but after a few days inpatient, my symptoms subside & I can resume my daily life activities in my own home. I also need to use jejunostomy tube feeding (to supplement what I am able to eat by mouth) every night. When I’m having a flare of my worst symptoms, I cannot infuse my tube feeding nor can I eat anything orally. So, this usually requires that I get admitted to my local teaching hospital for what I call a “tune up”. This means I get IV fluids and medications to alleviate my symptoms until they back off and let me resume my life.

As one can imagine, I dislike being in the hospital. The smells, becoming dependent on the nurse of the day for all your care and for her/him to communicate for you to the doctor. And, in today’s medical world, I’m never admitted to my own doctor because they now have what’s called a hospitalist whose job it is to care for folks like me in the hospital. They don’t see people outpatient in an office because their office is the hospital floors. Kind of like the TV character, House, MD. So, not only am I feeling like crap, I then have to relay my story to this new person whom I don’t know and she/he doesn’t know me AT ALL. So that fact lends itself to all kinds of anxiety, like, will she/he really understand what is going on with me. And, usually 9 times out of 10, the hospitalist tries to reinvent the wheel, meaning I have to repeat medications I’ve already tried because this new doctor thinks his way will be more successful than the last doctor’s way. And I have had to repeat diagnostic testing more times than I can count because if you tick off a doctor by telling her/him no, that brings up a whole set of problems I don’t have the time nor the inclination to get into. That’s a whole other topic to post about.  Suffice it to say, I try to play nice with the new hospitalist no matter how much of an a$$ she/he is.

During a recent admission, I had the pleasure of being cared for by my own endo and his nurse practitioner. For some reason, my admission coincided with their on call schedule. I was delighted, to say the least, as I was having a difficult time with (according to my Dexcom Studio software)  spending 75-80% of the day higher than my target range. Which means I was feeling like crap 75-80% of the time.  So, we used this admission as a glorified basal testing grounds. I was taking nothing by mouth and my tube feeding were being held until my symptoms resolved, so I was going to be able to see what my BG’s did all by themselves without the added food.

I kept detailed BG records (what else did I have to do?! Did I mention I don’t enjoy day time television? OK, truth be told, I’m a sucker for “Kelly and Michael” but that’s it I swear!! Oh no, wait! Kind of enjoy “Kathy Lee and Hoda” but nothing else. Hmmmm, seems I forgot to mention the “Chew”. What?? I’m trying to learn how to cook but, this time I pinky swear, nothing else. I was too busy recording blood sugars!! But I digress.) I welcomed a purpose to my admission, especially if it was going to help me on the outside, as well as, help me feel better day to day. My NP, CDE (nurse practitioner and certified diabetic educator) came by usually at the end of the day and we reviewed my logs. We discovered I need to add a second basal at night for both scenarios of when I’m infusing and the nights I don’t. My basal, or continuous insulin needs are different at different times of the day, which is a very common scenario. During the day I need a higher rate than on the nights I don’t infuse (usually because I’m having a problem with abdominal pain, nausea and vomiting) and on the nights I do infuse, I need a higher rate than I even need during the day due to the increased continuous infusion of carbs (carbohydrates). We slowly tweaked the rates increasing from my old settings by 0.025 units of insulin per hour at the different times of each day and finally came up with my new rates.  I’m happy to say that so far, so good!! I know it’s only been a couple of days but already my BG’s are trending within my target range!! Woo Hoo!! Take that, diabetes!!

I have to say that I’ve been able to make such small increments in my insulin doses thanks to one of the triplets of my D technology…my Medtronics 530 G insulin pump, named Daisy ( the other two being my Dexcom and my BG meter). This never would have been possible when I was on MDI (multiple daily injections). So, I’m, as always, grateful to have access to this amazing D technology!!

I’m usually a positive type of person but being admitted to the hospital with pain especially is no fun, so I was happy to be distracted a little from my symptoms by trying to figure out how to decrease these persistent highs I had been having.  Generally, I HATE keeping written logs!! I rely heavily on Carelink & Dexcom Studio to interpret my data and keep me from going nuts trying to record everything while at the same time, trying to live life. This admission gave me the opportunity to keep very a very accurate log and help myself obtain better BG control.

Do you hate to keep logs as much as I do?? Do you regularly use the software for your D technology to keep track of patterns and trends? Any tips on how I could become a better log keeper, especially when it comes to food logs? Along with laundry, they are the bane of my existence!

And, Remember, CHECK…DON’T GUESS!!

 

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