An August Appendectomy

In August, (one month ago today)I had an appendectomy. There was very little drama involved, the doctors office visit led straight to a same day CT scan and an emergency review with the radiologist who informed me the appendix couldn't be seen but the colon was most definitely inflamed and I should go to the ER if it got worse. To the ER I went that night, to a hospital where the D Care is very good (had that going for it). They admitted me under observation, coursing enough pain medications through me to make me sick for the next 14 hours. The plan was to do another CT the next day. In observation, as I was trying not to move or vomit the admitting nurse asked a zillion questions and many of them were about the pump and the hospital "contract"

 to continue my pump, but use their insulin/check with their meter,tell them all boluses/set changes, etc. It wasn't a big deal to me(indeed, I'd much prefer my pump then going off on something else) so I agreed. When morning came, they sent me off for another CT & the movement from that even in the bed made me sick again. Surgeons and the PA came in again, they still couldn't see my appendix & recommended removal.(well,surgery did. I cried and told them I didn't know so they said they'd come back.) The PA came in and told me not to let surgery talk me into something I didn't want & if I got it, I should know why I was getting it and they were going to try to work on the pain and nausea regardless so protonix and Zofran and Reglan were administered and that made me conk out for over an hour and when I woke up, the nausea was much better. Not so much the pain. I talked to the nurse and the PA again and decided I would go ahead with surgery, it could only help. Surgery came back at 8,& told me they'd do it at 11 the next morning, there were many emergent cases that evening. In the meantime, I could have clear fluids, so I had some watery broth and water. Morphine straight up made me sicker then a dog so I chose the other form of pain control. At 9 pm I had a low and had to have juice,at 12:30 I had another low. (12 was supposed to be NPO) At 8:30 am had another low and my nurse had to ask the doc what to do (ultimately pushing dextrose through my IV, which took me to 200 very fast) There was then another OR delay and I was told it would be 1 pm before it happened. And then I heard people talking to other people and "she's on a pump" being said and magically, it was back to 11 am.(yay for diabetes pushing me back up the list.) They took me to the OR then, and the OR nurse and anesthesiologist popped in to go over anything untoward and confirm pump/CGM placement. My bg was back down to 93 so the anesthesiologist told me to turn my pump off because he was worried about lows.(I didn’t. I put it at 0.0 for two hours, so I wouldn’t go into DKA) Some dextrose (D5) was still running through my IV. They pushed sedating meds through the IV and it’s weird the feeling you get when you’re going under, kind of ditzy and then you are out cold, dreaming weird stuff and just like that you’re awake again in the post-surgical unit, trying to figure out what happened & oh yeah, there are incisions in my abdomen and do I feel sick or in pain as you are coming out of the anesthesia haze. I didn’t. Just tired. The anesthesiologist did a good job of giving adequate amounts of nausea/pain meds, because nausea is a common thing with me after surgery.(I’d told him in advance this was a problem and he said he’d give me extra) Bg was 143 and steady.(kept Dex/PDM with me,sent everything else with security)I was expecting to be discharged after it wore off, instead they took me up to a surgical unit. So then I assumed I’d stay the night. There was a flurry of activity by the nurse and tech after I was wheeled up to the unit, nausea and more pain meds given, and the pillow became my best friend for splinting during coughing. By 8 pm another surgical resident came by and told me I could go home since it was uncomplicated. I told him there was no way I was going home that night, couldn’t eat anything (throw in diabetes and tanking electrolyte levels) & if he looked harder, he could find a reason to keep me admitted. He said he couldn’t force me to leave but the insurance co might not pay. I said I was going to take that chance. I then tried to eat a chicken salad sandwich (on his suggestion) and the pain of the three bites I could get down had me writhing for the next few hours. My throat was dry and my kidneys were on overdrive. Next morning, the PA said I could go home after getting IV magnesium and potassium(right on cue, those levels were dropping low as well). At 4 pm, she came in, asked how I was feeling (great!yay!) and then said I couldn’t go home because my creatinine had jumped 0.5 in a day and I was dehydrated from urinating so much. I had just thought it was par for the course from all those surgery drugs. Insurance company reason for admittance: solved. That required a bunch more IV fluids and drinking a bunch more overnight/morning. 

Next day: all labs back to normal, discharged that evening.

I think that one of the strangest parts of that very strange experience was crossing the "doesn't need to be on blood thinners" to "prescribed blood thinning (heparin) injections" twice daily line..not even during pregnancy was I on blood thinners(granted, I was 30 then, not almost 36.) Nurse # 1 casually dropped that bombshell before surgery and I had to fully process that fact that I was now of the age where this could be a thing. I said no, but I wore the SCD's and TEDS and ambulated because blood clots still needed preventing. By the next day I was post surgery and admitted to the floor and a new nurse came to give me the shot and I agreed because she was just like "you need this" and I was also thinking she was probably right.I was nervous getting it but it did nothing unusual. This nurse also knew that I was a nurse (she must have read the chart,or it was mentioned during report or something) because none of the other floor nurses talked nurse stuff to me as she did. I didn't particularly feel like talking about my career(although the PA and NP kind of drug it out of me), when you don't feel well you just want to stay in bed and not talk. So, after that, I got the prescribed twice a day heparin injections until getting out of the hospital 2 days later. Thinner blood is much preferable to having a clot. Something else I've learned regarding being NPO and my labs, my magnesium will decrease at the rate of 0.1 per day with no oral magnesium intake-and the potassium will likewise be low. Before and after surgery I had to get potassium IV bags. More then anything else, this throws wrenches in the whole discharge thing they do not like when your potassium is going down. Magnesium and potassium going low easily are always going to be an issue for me,& moving forward I need to A.keep my supplements with me and B. take potassium occasionally,along with high potassium foods on a regular basis. Because of Mody magnesium is just as vital as insulin.

The betes was pretty stable, as I had little appetite and nausea came on/off throughout the hospitalization. This hospital is really good about all things diabetes (I had my son there). This was a huge relief, because that's pretty much my #1 fear, but they have their heads screwed on straight and people are educated and even CDE's visit you (2x) to make sure you know what you're doing should you run the "control insulin" part yourself. I guess mostly to check their little boxes. I had all my d-stuff with me (except for my lancing device,& an extra sensor), the only problem was when my sensor pulled out on the night before discharge(no extra) & when I had to do a pod change the insulin hadn’t come up from the pharmacy yet, so I went a little high.(they gave me an entire vial of Novolog)

Overall, everyone was nice and knowledgeable. One of the techs told me she was glad my blood sugars weren’t like the persons down the hall who was always 400 & then proceeded to go on a rant about how they were uncontrolled and deserved missing limbs. I was in shock with what was coming out of her mouth but really didn’t feel like educating anyone or anything just then. (This is a common opinion in health care settings, just most HCP have the tact not to actually say it to your face. I know this, as a student nurse I got to hear several diatribes on diabetics and couldn’t say anything. I actually now would just rather not hear it.Ticks me off so bad.)

After discharge, I had some pain and swelling of the surgical site (& the surgeons office was not available for follow up for three whole weeks). My primary had to get involved,& there was another CT scan and ER visit and drainage of the area before it finally felt like it was healing. (there was no abcess though, so that much is good) Healing from an appendectomy is no where as simple as they make it out to be-& pain meds will block you up for an entire year,feels like.

But I do feel healed now, & I’m trying to find a job & build a closed loop insulin pump system. (DIY Artificial Pancreas. I’m excited that it will soon be available for Omnipod!)

Everything New

 

 This is Fiasp. Fiasp and I will be hanging out for 4,500 units over the course of the number of days it takes to go through that,& maybe more.

 

We went to FFL 2017 and had a good time. My eyes are pristine despite the last horrid a1c and actually better then last year and I got a Dr Ben hug and all is right in the Universe. I finally have the courage to go to JH Wilmer Eye & move on from my joke of an opthamologist. I am good. I am thriving. And I deserve someone who I like, or at least, do not hate. In five years I may be eligible for replacement cataract lens surgeries because new technology will be there,& I wouldn't have to wear glasses at all. It would improve my vision as well and I am still a good candidate at 35-40. That is part of why I love Dr Ben, nobody else is telling me stuff like this. Nobody else gives out hope and hugs.

I graduated nursing school & have spent many hours trying to get accommodations to take the NCLEX. Literally everyone everywhere will be an RN before me. But hopefully, I should be able to schedule for early August and be officially Nurse Heidi.

I had a stress test & Im assuming it's ok, because I haven't heard about it in 5 weeks..but the results also could have never been sent. Endo appt. on Wed. I will get an "official" a1c for her which will be about 1.0 points lower then the a1c now I did in May. Still higher but I'm working on it, with the help of my new insulin.

2017: On the Brink of Beyond.

2017 feels like December 31 @11:59.59 pm.

We are waiting. Waiting on a new administration, waiting through upheaval in the streets and riots and the perfect fear of the unknown. Waiting on an ACA replacement. Waiting is not easy.

We are waiting on 2018, when actual real live commercial "Artificial Pancreas" systems will hit the shelves and maybe maybe maybe anyone with insurance can get one. Without insurance your options are still non existent. Many,many people need these...they will save lives and improve a1cs and cut complications and make a lot of people functional & "compliant"for the first time ever. While we wait, there is Nightscout and hackers/developers who build their own closed loop rigs and make the rest of us more then a little bit jealous. We needed these systems approved yesterday. From the early days of research (Minimed Guardian RT,anyone?) to

the here and now, AP research has progressed by leaps and bounds.(that's been just 10 years,FTR) After 18 years with the D I'm still not a whiz at this.(as evidenced by the fact that I stay alive but not much else. My Endo has stopped being surprised.) We are waiting to beat that A1c into submission.

We are waiting on May 25,2017...to graduate from nursing school.(Me: RN?!?) It feels like an impossible dream and even more so that I'm one of 4 still in the honors society. You may fully expect me to bawl like a baby if it ever happens. I guess I need to start working on a plan for post graduation.

We are waiting on the 5 year old to start Kindergarten in the fall. Expect me to bawl then as well. I never knew a small human more cute,& more insistent on his own ways & possibly why my own hair will gray prematurily.

It's going to be a difficult year in some ways but I hope that for most of us, it won't feel like the emotional dump that was 2016.

 

Two MODYs walk into a bar...

Recently I had my follow up with the geneticist/Endocrinologist of last August's appointment. I absolutely adore her, because I have her personal email and every question I have is a promptly answered. Learning to live with MODY hasn't been all roses and sunshine, as I've developed a swelling of my left kidney (called hydronephrosis) which I've had an ultrasound and abdominal CT for and am scheduled for a renal perfusion scan in two weeks. It hasn't affected the overall function of said kidneys but it's there,like an albatross, needing attention. There are no kidney stones (#1 cause) and the geneticist feels like it's MODY caused, such as stricture in the ureter causing back flow into the kidney. The renal perfusion scan will tell what's going on. In the meantime, I'm going to work very seriously on my a1c and try to get it down before the school stress starts up again. I'm going to prebolus, low carb it as much as I can, and try to eat more fruits and veggies to take the D out of the picture of kidney stressors. I'm also going to start taking some antioxidants, fish oil, and give glipizide another whirl. We talked a lot about the added risks to the kidneys with this condition (1 report of cancer,& just various kidney issues) and she recommended a yearly ultrasound with that yearly appointment. And we are talked about the genetics of it,& risks/dangers of it being passed down & the no way of knowing how the deletion will express itself in the next generation. It makes me kind of sad because that's not an inheritance anyone needs. The geneticist felt that if that class of drug didn't have results on the D, then other oral meds probably wouldn't either. Also, the exocrine function of the pancreas can be affected in MODY 5 and if that should happen you need (oral pancreatic digesting enzymes. I now need to schedule my sons yearly genetics appt...where we'll have discussions on variations of the above plus developmental issues.It gets heavy, fast. It's pretty certain that he will get diabetes but at what rate,no one knows.


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Blog Week: The Mental Stuff(ing)

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)



I wasn't planning on participating in #Dblog week, due to being fairly busy with the wrap up of Nursing School Year 1, but life had other plans. Tonight, my husband, son and I went out to eat at a local restaurant. The kiddo particularly enjoys flushing the toilet, so we made several trips to the bathroom to establish the fact that that was in fact what was going on. (no, he did not need to use it every five minutes)As I was helping him wash his hands, someone said "excuse me" and then "How do you like your Dexcom?" Well, that got my attention..turned around, and there was a blondish girl with a Johns Hopkins sweatshirt on.(I wear my Dexcom out in a Tallygear case) We had a very nice conversation about diabetes lows and how much the Dexcom was truly worth its weight in gold, and she turned to her friend with an expression of joy on her face and said she wanted to go back on one. And I showed her the transmitter and how much it has evolved, from whatever she had tried in the past. And then she said "You really get me!!!" and danged if that didn't just choke me up to pieces. No one has ever ID'd me as a Dexcom in the wild before. She was most definitely needing a kindred spirit that night, someone who also had diabetes and knew all about it. I didn't really have time to continue the conversation, but in that moment I felt that diabetes wasn't so sucky, if I could be that example that she wasn't alone. Previous experiences with everyone not at FFL, college kids with D generally want to do their own thing and ignore the D. And it isn't that way for everyone. (I needed reminding of that fact) I wish I could have been more informative of good resources, but my kid was pulling me in the other direction.


As for diabetes funks, it is helping me get out of mine. I have been thinking more that it would be a good idea to be a diabetes educator, if its as rewarding as the exchange I just had. Kids with diabetes really need that support. (so do adults) Because you're just mostly living your life in a diabetes-less vacuum until boom, you get a reminder that you are not alone.

Hello April

It's hard to believe that it's the end of March and April will be here by the end of the week. I'm busy (isn't everyone?), but it's Spring Break,so I'm feeling a little less stress. I am deep into the second semester of new nursing school,& that means OBGYN/Medical Surgical 1. As someone who has not closed the door on wanting more babies, being around babies makes you feel like that biological clock just cranked up to 2359.59.(not true,FTR,but those days will come) Babies do things to the sane part of your brain. Anyway,this semester is a whirlwind of tests-clinicals-lectures-skills-care plans. It always seems like I never get truly "organized"(I somewhat envy those students who have everything in lovely organized binders,they have it together.) I'm lucky if I have the essentials. (Given the choice between studying and organizing,I'd rather study. I also don't have as much time as a childless person.) These two classes are being held simultaneously,which means there is always some exam being held days apart for both courses.(It will drive you mad.) But it's almost April..and May heralds in the end of clinicals,whirlwind Exam 3(x2) prep, and HESI's(which are the final exams). Just a little bit longer.

Had to reschedule my Endo appt for June, due to conflicts with clinical. I did my a1c prior,and that actually dropped 0.6 points so I feel good about that. Saw the retinologist and things look good there(pushed out next appt for October). I need to see my primary doc and do some basic blood tests(like iron,thyroid) to see if that's why I'm so tired. I haven't been on thyroid meds in a year and a half because it's going though a "sputtering" phase. That phase doesn't last forever though.

On the blood sugar front,the Glimeperide did whacky things to my blood sugar. I would eat a carbless meal and go up 100 points. And then have to bolus it down. And after a few days of that, it would go into hyperdrive and make me low all day.(to where I couldn't bolus for anything I ate) This was with the lowest dose,once a day. Plus it made me dizzy. It definitely made me produce insulin,but it wasn't consistent. I don't know if taking it longer would have changed that fact or not. It's something I would like to further explore,but not now (I have to be functional for school,& being dizzy is not being functional).

This is pretty much catch up week..studying(exam prep), shopping for odds and ends, flea market selling prep (on Saturday), FAFSA and scholarship filling out. Loving the warm weather. (And looking forward to the Falls Church VA Friends for Life conference in several weeks) Kiddo is doing well, 4 is an age of great insight(& quippy one liners that make me laugh constantly. I love 4. It actually feels like he will be self sufficient one day and not need need his Mama for everything. I would certainly like him to still need his Mama,just not for everything.)


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Year in Review: Diabetes Style

Hi kids! It's the most wonderful time of the year,in which you get updates from your great aunt's uncles friends dog and actually,it's kind of fun. No one ever sends updates on their diabetes though because I guess it crosses up comfort levels in the worst way. No one wants to hear about your betes misadventures. Anyway,2015 was the year that challenged me in ways previously not ever imagined so I'm going to break those social norms and give you a review of how my year went.

February: Child had an MRI. Child had a karotype blood test,to check for chromosome abnormalities.

March: Childs blood test comes back positive for chromosome micro deletion. (With a possibility of MODY diabetes)World ends.(or just feels like it does) DUnConference in Vegas proceeds,

an amazing diabetes experience that 

does much good to a hurting heart.

June: Childs blood work and abdominal ultrasound come back normal.

July: Friends for Life conference in Orlando. Find out about beginning  NPDR complications (both eyes). Cry a lot. Crawl back from emotional hit in heart.

August: Childs first appointment with pediatric endocrinologist. Talk about MODY testing. Current a1c at 5.6 and all blood work good so agree on periodic blood testing and yearly a1c check.

September: Own appointment with geneticist. Send off blood for specific karotype testing.

Karotype test comes back positive for same chromosome abnormality, raising extremely strong possibility of having MODY 5 not type 1 diabetes.

October:

Part 1 Artificial Pancreas study admission. Data collection begins.

Have tear in right eye's virtreous fluid. Stressful stat appointment with Retina dude reveals that it is a common thing with age or with cataract surgeries of which I had 16 years ago. Reassured retina is not detaching but the new floater may be permanent,or it could go away over the months. It is not directly diabetes related.(everything else is stable/good.) Recheck in February.

December: All antibodies other then GAD come back negative.(GAD was very positive) Confirmed by geneticist that it is MODY 5, and not type 1 diabetes. Also not Bartters Syndrome.Endocrinologist gives RX for trial of sulfonurea. 

Part 2: Artificial Pancreas study. Real deal . So,so, so incredible.(#ILike)

In conclusion,everything I thought about my body was essentially proved wrong this year,I got three new diagnoses,and my son can get MODY as well. (Which feels bad but anyone can get type 1 too so I'm not sure why it feels so bad. Every parent with D is afraid their child will also get it.(on the plus side,he's had no elevations in blood sugar and all the labs are good.)  I'm waiting to January to try sulfonureas because it's going to be a very interesting can of worms to open,& my Endo gave me explicit instructions on how to do it all.(the drug causes hypos very readily) It's really unknown as to whether MODY 5 people can use sulfonureas,usually MODY 2's have more luck with them. MODY 5 is super rare and MODY 2 is the most common kind. MODY 5 is generally associated with complete insulin dependence just like type 1. But it's worth a shot.(obviously,it's not a good idea to go off insulin entirely,it would be more of an adjunct therapy) The geneticist informed me that I'm the one and only MODY 5 she's ever seen.(she did see a MODY 2) It still feels surreal,after 17 years of thinking that I'm type 1. Few people have ever heard of it,much less know what it is. It's easier just to say you have type 1,at least as this point. HCP have at least heard of that. I don't even know much about it much less how to explain it to someone else.(there's limited info on the Internet) It's so very similar to type 1(islet destruction) yet it's different too. And I'm going to be spending the rest of my life unpacking this, I guess.