A terrifying rant, looking for similarities

Type 1 and LADA
1

Sometimes acknowledging the fear we live with every day is terrifying in and of itself let alone facing it.

I was diagnosed with T1 at 25 years old in 2008. It wasn't fun...DKA in the hospital for a while but nothing major. I did loose 30 pounds but other than that pretty run-of-the-mill DX story for a T1.

Fast forward six months. I was really on top of my sugars, feeling good, got on the Animas Ping right away and did pretty well for a few years. Then I went off of it, and then finally a couple months ago I rejoined the pumping community.

Ok, so now that we got the background out of the way here's what's up....

Last week I ended up in the hospital for 3 days DKA. It was Tuesday afternoon. I had been helping more around the house since my wife had come down with the flu and was recovering. Our one-year-old seemed to be getting sick and our 3-legged dog was having issues putting weight on one of his back legs causing us to think we'd have to put him down.

My infusion site was placed a little high on my glute and belt had pulled it out a little bit so I replaced it. I was tired. Really tired. I work from home and was falling behind on work with everything going on, hadn't slept a full night in a week or so. So I replace my infusion site and carry on with my afternoon.

That night we take our son to his very first sick appointment only to find out he was fine, just being a toddler. Come home, put a frozen pizza in the oven because it was getting late and carry on. At some point that night I noticed our dog couldn't sit still. He seemed to not be able to lay down comfortably and I started to get worried. Every 40 seconds or so he'd get up, shift, move around, lay back down and stare at me. Overnight I woke every hour. Not because of my dog, but because I was thirsty and had to pee.

Morning rolls around, I feel terrible. I hadn't slept right, we thought I was getting the flu too. Then I finally checked my sugar. That was Wednesday morning. I hadn't checked my sugar since Tuesday morning. I was too tired, unfocused...I can come up with a million excuses. But I just didn't do the most basic task a diabetic has to do. So Wednesday morning I finally checked my sugar; 490. Then 520. Then 540. Overnight I knew it was high but I just kept bolusing thinking it'd go down. I needed to sleep and the thought of even checking my sugar was too much of an effort. After not seeing it come down I checked my infusion site, felt the dampness and smelled the insulin. I pulled it out and saw the cannula was bent. Never was inserted. I bolused a ton and cranked up my basal rate.

We were ready to take the dog in to the ER vet thinking we'd have to put him down but I couldn't lift my phone. I couldn't find my gloves that were in my jacket pocket...the same jacket I was wearing. And my breathing had become shallow. My wife rushed me to the ER and unlike DKA at DX, this time I couldn't control my breathing.

It was hard and fast. I didn't think my heart would take much more. I heard my blood pressure be read to another nurse, something like 180/150 or some insane number like that. My wife was by my side and all I could think about was she was going to watch me die. Because I just didn't check my sugar once after putting that infusion site in. Had I at least checked before dinner I would have caught it.

They must have stuck my right arm a dozen times trying to get an IV in. The only line they could get in the left was in my bicep. Fast forward to Friday afternoon and I'm walking out of the hospital to the car, then back to the vet. Just to wrap up the thread of the dog...he's fine. :) turns out it's a little arthritis which flared because of the damn Canadian air that swept over us. AND that night when he couldn't get comfortable...my family as well as the vet now think it's because he smelled the acidosis on my breath. He confirmed it that Saturday when I noticed he was acting in a similar manner and I checked my BG. My infusion site was just having some bounce-back and my sugar was climbing. I still had ketones in my system and I'm convinced he knew. Ok....So! phew!

It's a week later....and I feel like ■■■■.

I know DKA gets a lot worse...but all the stories I can bare to lookup are horrific and they talk about recovery in months...

I get dizzy for no apparent reason...I'm breathless getting up off the couch. My left arm, the arm the IV was in my bicep is useless (and I'm left handed). Writing this post is the most focused I'e been all week, I seem to not be able to accomplish even the most meaningless work related task.

I lost 8 pounds in 14 hours and another 4 pounds in the days that followed. I get that it was tough on my body. I went from what I thought was surely the brink of a comma or death to normal blood levels with a closed anion gap by 4pm that day when I was admitted to the ICU. I was admitted to the ER at 11:30am. But I didn't expect recovery to be like this. This sucks. I've never felt so utterly useless. I mentioned that it's terrifying at the start of this post but this has dragged on long enough, I can follow up with that. Basically I've worked really hard to get my numbers on target and it just a huge wake up call that it doesn't matter how good you're doing with your BG goals...one day of carelessness can be the end. That's terrifying. And annoying. Anyways,

For those who went through DKA what was recovery like? How long did it take for you to feel like yourself again? Or did you have to re-define what "feel like yourself" meant?

Sorry for the rant...most of it is related to guilt. Guilt that I was so careless, so lazy that I let this happen.

2

Wow Ryan, that's a frightening story. I don't have anything similar in my experience to relate, but I do know that you have to let go of the guilt. What happened is in the past and you just can't change it, no matter how much you want to, no matter how much you know it was caused by what you call carelessness.

All you can do is learn the lessons so you can apply them to what you do today. Every moment spent beating yourself down prevents you from living today. If you didn't test yesterday, or even today, test now. If you weren't able to accomplish your normal tasks today, accomplish one tomorrow. Allow your body time to heal, if that's what is necessary. Scale back and re-set your expectations. Celebrate what you accomplish each and every day.

3

Sounds awful! And brings back uncomfortable memories.

I had severe DKA before I was diagnosed. I threw up all night, and had to pee endlessly. I felt like I was suffocating and my vision was starting to fail, I think due to almost falling unconscious. At the hospital my BG was 34 mmol/l (612 mg/dl). I had to get 9 liters of water through an IV and had to get 2 liters of potassium IV. This was at age 14.

It literally took years for me to regain my physical strength and full mental faculties. I had pretty severe "brain fog" after, that just wouldn't go away. HOWEVER, I think much of it was due to having to learn to deal with unstable BG, my young age and the stress of changing everything in my life, and maybe some depression as well.
I doubt it would take that long if it happened again to me or to a trained diabetic. Maybe a few months of having stable BG.
I have had high levels of ketones two times since; once when I fell asleep in the bathtub for 4 hours, where I awoke to have to throw up. The other time when my pump became empty at night and I didn't wake up from the alarm, where I then woke up to have to throw up again. That just took 1 to 2 days of recovery.

Hopefully you will feel like yourself again soon! It will happen, don't worry. :)

4

I'm sorry to hear about your completely awful last couple of weeks. We can all share stories about absent-minded stuff we've done, we're all human and life happens. One of my grand screw-ups was while I was hiking in a remote area of Zion National Park. Even though I brought several packets of Skittles with me, I apparently didn't bring enough. Once I was down to my last couple of packets, I realized too late that I'd better head back. I was totally out of packets and still a mile from my campsite, and I could feel myself diving again. Got there just in time to stumble into my tent and wolfed down more Skittles than I could count. Another time I got the flu and was so tired I didn't check my BG for a couple of days, and felt that crazy thirst come on. Finally checked BG and I was 500-something and feeling barfy, so I knew it was DKA and my mom schlepped me into the hospital. Gotta love barfing all over the hospital floor and crying for a cup of ice. Both of these episodes were before I went on a pump. Needless to say, I love my pump. But the responsibility with that is that I know I need to check my BG at least 4-5 times a day, ideally 6-8 times. Do I do that every single day? No. But I do feel like something's missing if I don't. All we can do is move forward and learn from the crazy stuff we have to go through. You very likely will never let yourself be in this situation again, so try to let the guilt go and forgive yourself. It's not your fault your pancreas broke!

5

I just want to echo what has been said - go easy on yourself. You've already been through a terribly horrific experience and piling up self-judgment just isn't fair to yourself! Sometimes the best way to do that is think what you would say to someone else... If you were reading this post here instead of writing it, I bet you'd have more compassion for the writer - see if you can extend that compassion to yourself.

Beyond that, I'm no help at all :) I have been lucky thus to far to not have had a DKA episode of that extremity. I thank you for posting though (see? there's already one way in which you are bringing good from an awful time). Because I have been lucky so far, I've probably also gotten careless at times. Reading about your experience and how it came out of left field is a really important reminder to be to not become ambivalent in my own care.

Take good care and I hope that you start feeling better sooner rather than later.

6

Ryan - Thanks for your detailed account of DKA. I've never experienced it but was very close when I was diagnosed. I'm compulsive about checking my BGs; I rarely let more than a few hours go by without checking. I also use a CGM. Reading an account like yours make my obsessive BG monitoring seem not so obsessive.

Diabetes is a demanding beast we live with. We really can't turn our backs on it. I'm glad you survived to tell the story. I wish you a speedy recovery to full energy and wellness!

7

Thanks for the words of encouragement everyone. I know I'm hard on myself but I'm scared. No other way to put it right now.

When I was DX I was drinking about 3 gallons of water a day, maybe a little more. I was waking up at 4am with the worse leg cramps I have ever experienced to the point where I fell out of bed onto my tile floor in agony. My dad had developed Type 2 years before and I remember him telling me about the thirst. The raging, uncontrollable thirst. When I finally tallied the number of water bottles I was going through it clicked and I went to my doctor. The doc had told me to drink Gatorade for the leg cramps with the caveat it'd raise my blood sugar. Before I had seen my GP I thought the cramps were from the hiking I was doing. Every evening after work I'd hike the hills behind the city. I was pretty active. Single. Living with a roommate I didn't get along with I just figured I needed to eat more bananas. That was until I counted my water bottles. My sugar was in the high 300s. He pegged me as a Type 2 but ordered more tests to confirm. He sent me home with some Metformin.

The next day I got a call in the early evening that my labs came back and I had a very low insulin count. That I needed to go pick up a vial of Lantus and come in the morning and he'd show me how to use it while I wait for an appointment with the Samsung Clinic. This was in Santa Barbara California.

I woke up the following morning vomiting with leg cramps. There wasn't much in my stomach so what came out as abnormal to say the least. I was too tired to think too much about it, figured it was just part of the process. When the nurse from the clinic called me to schedule me for a new patient visit to the clinic I asked her right before she hung up about my pill. "One other thing, I am supposed to take this pill but I've been throwing up all morning. Can I wait a little while to take it?"

Her response will never leave my memory. "You need to go to the ER right now, should I call an ambulance?"

Why I drove myself I'll never know. But I did. And the valet at the hospital probably wasn't too keen on getting into a car where an ashen looking young man stumbled out trying not to vomit. It was early, not busy. I was wisked right in and from there on my life was changed. I don't remember too much more because it wasn't that bad. I felt terrible, but once they got some fluids in me I started to perk up and became more concerned with the increasing B.O. from not showering that morning and noticing and the young attractive ICU nurses (pre-wife obviously :).

That was five days and I was lucky to have a fabulous nurse who made sure I walked out of there with at least enough knowledge to survive the first 48 hours.

That was six years ago. Since then I hadn't had a diabetic related hospital visit.

What scares me about last week the most was that this wasn't on my radar. They tell you in pump training that it can happen, but how many times do you hear about the potential bad complications? Chance of DKA while on the pump faded into the background noise of Nueropathy, Blindness, etc. My concerns regarding my diabetes have focused on my feet, and hypoglycemic episodes. Not DKA.

Last Tuesday night, by the time I was waking, drinking, and peeing it was too late to make the right call. The build-up of ketones happened so quickly that my judgement went out the window probably hours before I went to bed. Then you add the electrolyte imbalance caused by the Thirst and you're essentially drunk off acid...not the fun kind.

When I got into the ER everyone kept talking how they could smell the acidosis on my breath. That wasn't new from DX. The breathing...the rapid, hard, and frightening breathing was new and unexpected. According to my endo and my wife who essentially went home that night and took a crash course in DKA (that's just how we role in crisis) told me that it wasn't quite Kussmaul breathing but was close. I mentioned above I thought my heart would stop and it's true. There came a point where I had absolutely zero control over my body. I couldn't open my eyes, I could hear what was happening around me. I could feel my wifes hand and hear her voice along with the nurse trying to get me to breathe in through my nose and out through my mouth but I couldn't make it happen.

The nurse put a mask on my face to try to avoid hyperventilation but that compounded the anxiety building up and being released almost as fast as the C02. I don't know quite how we go from ketones, to acid, to C02....my endo said I'd need to take a physiology class for that but that's what was happening. Instead of vomitting like when I was DX, my body was trying to expel the C02 out as quickly as possible.

When you breathe that hard, that fast for that long, you start to take oxygen from your extremities. My hands and feet started to feel frigid. I have a one-year-old son. My family including my dog, were on my mind. I tried to cry but didn't have the breath. I was pissed, scared, confused, you name it. All at once. All while trying to tell my heart to slow down a bit.

Once the fluids started to kick in the breathing eventually slowed. I was emotionally, physically, and to some extent spiritually exhausted. So much so that when the respiratory tech came by to punch a needle into my artery I barley noticed. I don't know much abou the anion gap...I just know that by the time I got to the ICU it was closed. Sugar was in the low 200s, I kept hearing nurses and doctors say things like "his body corrected very quickly...well so what do we do? he doesn't fit the DKA protocol..."

An hour after being admitted into the ICU the breathing caught up to me. My lips were splitting before my eyes it seemed they were so dry. My throat was raw. This is the point where Diabetes is just weird. To some extent I was just tired..but felt OK-ish. And I was in the ICU where patients left and right of me were dying or about to die. Its strange how a diabetic can go through this but then walk out of the hospital just fine...in my case in the same clothes. No cast...didn't have chemo or anything, still have my hair. I don't physically look any different but you feel different. I had just been to the edge and back and was wondering whether I'd go to work on Monday or not.

I don't know where I was in the grand scheme of DKA...niether does my endo. There's just too many variables and everyone is different but I do know it wasn't good. Your body doesn't do that to itself for anything minor or moderate.

Part of why I feel crappy now is most likely some depression with a little stress or a lot of stress regarding work. No one understands this disease unless you live with someone who has it or you have it yourself. I can't count the number of times I heard things like "well you just have to watch that cake", "are you sure it's smart to be on the pump?","well why is it so hard to checck your sugar?"...those comments and more in the last week just really make me love this disease...

Many months ago I got some lab work done which showed my A1C at 12. I was shocked. It was a startling slap int he face that I wasn't in any sort of control. I've been to all the classes, met with nutritionalists, worked for a national health magazine which allowed me access to many amazing resources...it wasn't an issue of not knowing how to handle this I just wasn't doing it so I went and saw a behavioralist.

Next A1C was 7.1. Not great but a helluva lot better than 12. Over the next few months I worked even harder at it. I'm on a CGM, the Dexcom G4. What happened last week was the build up of many small coincidences. My CGM transmitter battery died. When I called for a new one they said my insurance will cover a whole new system since mine was out of warranty. It hadn't showed up yet. I was focused on everything and everyone but myself.

It's just maddening as I'm sure you all know. I've been working at it, trying to get better, and then out of nowhere I slack one day and life decides to use that moment as a teachable moment.

I used to agree with people when they'd say "wow diabetes is like another fulltime job". It's not. If it is, then it's a ■■■■ job. You don't get paid vacation. You don't get sick days and you can never clock out or take a break until it's Over with a capitol O. After last week I feel like there's a shadow behind me. Waiting. Waiting for the one day I screw up again. I'm a week from DKA...so I get that I'm more doom and gloom than normally.

But this rocked me. It caused a thought-shift in my marriage as to what our longterm goals were and why we weren't acting on them now. My wife and I learned a lot last week. I only wish the greatest lessons we learn didn't usually coincide with the hardest mistakes we've made.

Thanks again everyone for posting. I will admit just writing it out has helped.

8

Ryan, sorry for the horrible experience you survived, but just wanted to remind you of the gem of a dog you have! Many people spend big bucks to get a DAD, diabetic alert dog and you have one already. Hope you are cultivating his talent, as well as paying better attention to when he alerts. Some times they sense when things are off long before we humans can.

It will get better, hang in there!

9

Thanks for the response. I love my fluffy buddy. He's a gentle giant with my son and everyone he meets. We had to amputate his leg last June because of a bone tumor and he's just inspired everyone he encounters with how well he coped and recovered. If I could get him to recognize lows I'd be set! But we're not pushing anything, he's a good boy as it is :)

10

I'm so sorry you went through this. I know that you must feel terrible right now, not only physically but emotionally. It is clear in your writing. But adversity can be important. It is how we deal with adversity that matters. I urge you to consider this a learning experience. I hope that in months and years from now you can look back on this not as a day that you nearly lost your life but the day you turned it around. You know that your wife and child and dog need you to be around. When you ride in a plane they tell you to take the oxygen mask and breath for yourself before you try and save your child. As you said "I was focused on everything and everyone but myself." You need to make it a priority to take care of yourself first. You said it yourself "life decides to use that moment as a teachable moment." You did nothing wrong, we all mess up stuff and stuff happens. The only thing you can really blame yourself for is that you haven't gotten your priorities straight. But I know you will.

11

Being "out of it" a week after DKA, matches some of my experiences when I was a kid. You will get better and back into sync but yes sometimes it can take a while. I'm not sure about months, but a week is not unreasonable.

Some of your "family/pet overload" on the run-up to DKA, reminds me of the run-up to a bad hypo I had circa 2005, which resulted in my wife calling 911, paramedics giving me glucagon, and then landed me in the emergency room and I was "out of it" for a couple days afterwards.

BTW, one of my favorite movie sequences related to "family and other responsibilities overload" is the "last day as a wise guy" sequence in Goodfellas.“All day long the poor guy has been watching helicopters and tomato sauce.”. Replace the drug deal with me managing my bg's, and that's a good busy day in my life!!! Yes, I watch those helicopters. Why do they keep following me anyway?

12

whoa. long story, i just pray this will never happen to me…
just about the CO2. i am just studying for my physiology semester exams. it is not that hard. your body uses bicarbonate as a cushion to maintain the same pH level. bicarbonate (HCO3-) is an acid, and if your blood becomes to acidic (due to the ketones) your body tries to get rid of the acid by breathing out as much CO2 as possible, which then should lower your pH. but you can only breathe so much :)

13

apologies...i tend to ramble. thanks for the info.

14

I only had DKA at diagnosis (BG almost 600), and it took me about 4 days to feel good enough to go to school. I lost 20 lbs in 3 weeks and put it back on in about 4 days. I still don't remember the 2 months leading up to it, and I had lost a lot of muscle mass so I was weak, but I was 14 years old and somehow jumped right back into sports. I was close enough to fully fine in about 3 weeks, but it took a few months to be truly 100%.

If I'm running over 300 for more than a day, and it doesn't dip at all, I change my pump. No questions asked. I test ~5x per day which prevents DKA and super bad lows, since I'll always notice it. I think the feeling of being useless is all in your head. Physically, you should be pretty much back to normal, maybe a little exhausted from the hospital stay but able to do light housework, cook, etc. It's a teachable moment- you learned that you need to test more than once every other day, and this will probably never happen again. It's pretty hard to die from acute complications of T1D since they're all preventable by testing a few times per day.

15

Thanks for the response Leah. It's amazing how easily the infusion sites can fail. I don't give myself more than 2 hours if I'm running over 300 before I check the infusion site and/or insulin, usually. Clearly by my original posts I can miss one. I think there's a lot in my head right now but I can't shake some of the queezyness yet but it's getting better. Arms are still pretty rough from the IVs. It definitly was a teachable moment that's for sure! I will have to respectfully disagree with your last statement. You're correct in saying it's hard to die from complications if you're testing your sugar. But that's like saying it's hard to die while driving a car if you don't get in an accident. I've been getting my A1C tighter and tighter and my averages have been pretty decent. It was just that day got away from me. I'm probably still a little overly sensitive about it because it was a matter of hours...not weeks where I didn't check my sugar and this happened. Thanks again for the response.

16

I’ve nver been in DKA Ryan but I had a really low low Christmas Day and I think there’s a little post traumatic stress that sneaks up on you after something like that happens. It’s just going to be hard for awhile to get your confidence back, you’ll get there but it may take more time than you’d like!

17

One acronym: CGM.

Glad you made it, and are recovering!

18

Yo hobbit! Are those DAGs in your avatar?

:-)

19

Hi Ryan,

I'm glad you survived this, sounds really horrible. When I was in dka which was 4 days in the icu, and then 5 days in a regular hospital room after I was released with a dvt and then re-admitted, I had a few complications- the dvt being one.

I also lost my ability to focus, both close and far focus, my vision was totally blurry and I could only see with 3 reading glasses and not very well with them. I wasn't able to drive for about 2 months. It took 3-4 months for my vision to improve, I did it by normalizing my bg as much as possible, it has never gone back to what it was before dka. My then eye doctor said he didn't think it would improve as much as it did.

It took me about 3 months to start to feel somewhat normal again- I have been told it takes 6 months to fully recover if you have had severe acidosis. Fortunately I was off for the summer and I was able to take it easy and rest. When I got home I was so wobbly from muscle loss and everything that I was unable to bend down to pick something up from the floor without danger of falling over. I kept doing tons of things, as much as I could, but I think I overdid it a little in the beginning to be honest. I would take it easy, don't stop doing things but don't overdo it either.

I'm really terrified of ever going through that again because I know I'm very lucky to be alive. I test a lot. We all make mistakes, just glad you got through this, Always test a few x per day or monitor your dexcom, especially if you don't feel well.

20

I have been hospitalized for DKA a few times. Anywhere from one day to three days in the hospital and then I'd be weak and not feel too well for another day or two.