One heck of a vacation.

Now, let’s see… where was I?

That’s right… I was supposed to go on vacation, a total of ten days off of work, and a chance to spend time away with The Great Spousal Unit for the first time since last November.

By now, you may have heard that I had surgery on Friday, September 8th. An emergency appendectomy. Here’s what happened:

Wednesday, I felt a little discomfort in my midsection. By Thursday night, it had intensified, and I decided that if I felt the same way Friday morning (my first day of vacation), I would try to get in to see the doctor. As luck would have it, my doctor was out sick Friday, so I went to a doc-in-the-box. They were swamped with patients, so I decided to go to the emergency room. I was convinced that because the pain I felt included significant pain in my lower back, it was a kidney infection.

So I spent some time being checked out in the ER, including a contrast test (too long to explain), after which, to my great surprise, I was told that I had acute appendicitis and I needed surgery right away. Maureen hadn’t even finished work yet.

She did make it though, about half an hour later, and boy, was I messed up. In fact, the surgeon told me at my post-op follow-up visit that the appendix was in bad shape, distended, and the moment he went to grab it, it burst. It’s a small organ, but what was inside, all of the bacteria, spilled into my gut, and there was really no way at that point to get it back.

Sorry to be so gross. I’m writing this in part so I don’t have to remember it later. And the worst part didn’t even happen yet.

One of the anaesthesia drugs I was given is supposed to relax my muscles. Instead, my muscles tensed up, and my body temperature went through the roof. The surgical team had trouble waking me.

It turns out I experienced something that only one out of every 20,000 patients experience. Officially, it’s called Malignant Hyperthermia. It’s caused by an allergy to a drug that was in my anaesthesia cocktail. We’re not sure which drug yet, but I hope to be tested soon, in part because it’s hereditary, so the fact that I have this problem indicates that my siblings and one or both of my parents might also.

I’m convinced that the hospital’s Chief Anaesthesiologist saved my life. The surgeon told me he was astonished that as soon as she went to work, my temperature went from 39.9 Celsius (103.82 Fahrenheit) to 39.2 (102.56) to something around 37.2 (99). I sure am glad she wasn’t on vacation.

To put it mildly, I had been through an ordeal already. I awoke to an operating room in mild chaos. It seemed everyone, about a dozen people, were all talking. There were five people surrounding me, and three of them were asking questions, all at the same time. I was still intubated, and they weren’t asking Yes or No questions.

I didn’t know I was intubated at first… it just felt like I had something stuck in my throat (which I did). I coughed hard, and it came partially out, and then I reached up and pulled it out the rest of the way. Those things come out pretty easily, it turns out. But I still freaked out those asking the questions. I reached out and grabbed one of the doctors, who, it turns out, is a great guy, and said “Stop calling me Boss, goddamn it!”. I guess that’s the funniest part of the story.

Then, a night in the Intensive Care Unit. Then, two more nights of hell where I couldn’t keep food down, and ate nearly nothing. By Monday morning, I was wondering what it would take to feel better, because every day since Friday had seemed to be worse than the day before.

But Monday came, and I felt much better, and I was able to stand up for more than a few seconds at a time. I got a chance to walk a little. Was I getting better?

Tuesday lunch, they finally switched me off of the dreaded clear liquid diet (think broth and jello for every meal), and I ate solid food for the first time in four days. By late Wednesday afternoon, I was finally released from the hospital.

I’m sure I left out a lot of the story, but that’s most of it anyway. Now, a few random thoughts now that I’m about ten days after surgery.

– Diabetes… that’s right, this is a diabetes blog! I managed as best I could. I talked it over with the attending physician the day after surgery. I was adamant about keeping my pump on, and managing diabetes myself. He suggested that I run a little high until I could get my diet and movement more normal, so we could avoid any late-night lows when my energy level was already low to begin with. I thought that was a good idea, and that’s what I did.

– The hospital used a non-reusable lancet when performing glucose checks. I would have preferred to just use my own meter and lancets, but the first few days, there’s no way I could have handled that. I was too weak. I know they’re supposed to use non-reusable lancets, but it’s nice to know they’re doing it.

– My appetite hasn’t completely returned, but I’m not nearly as active, so I’m okay with that. I’m basically eating about half of what I normally do. Don’t expect to see me and see a significant reduction in weight, though I really wish that would be the case.

– The surgeon is telling me to take one more week off of work. In addition, I can’t lift anything over ten pounds for four weeks. So much for autumn yard work.

– Some things taste different. It’s really strange. For instance, coffee doesn’t taste anything nearly like what it tasted like before the surgery. I don’t think this is necessarily bad. Mostly, I’m curious to know what causes this. I think it’s interesting.

– I received exceptional care from the nursing staff at the hospital. I was cared for by white, African-American, Hispanic, and middle eastern Muslim nurses and technicians, and they were all great. Spectacular, even. I will be forever grateful.

One final thing: I’ve read about many experiences like mine over the years, where people are brought back from the brink of death, and they are convinced that now their lives are destined for some “higher purpose”. The first part of that is true… I could have died on the table in the operating room.

But I already believe I had a purpose before this episode. I still have a purpose, and that’s great. I want to be the best person, the most helpful person I can be. I want to do the most I can for those living with and affected by diabetes. That was true yesterday, it’s true today, and it will be true tomorrow. Why do we need a near-catastrophe to convince us that we are here for a higher purpose?

Our purpose is before us already. Seek it. Live your purpose.

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I’m ready to go off the clock.

I had one of those mornings last week.

Actually, it was more like one of those weeks last week.

Every time I came to work, it seemed like things were happening all around me, and my input or assistance was needed at every turn. Deadlines got tighter, and new requests made beating those deadlines harder than ever.

Then, on my way to work Friday, the subway broke down one stop from where I get off downtown. Convinced it was a fluke, and knowing I could do the extra walk (and I can use some extra walking, believe me), I decided against waiting for the next train.

I wound up walking an extra mile or so to get to the office. Of course, I never would have guessed that this would happen when I bolused for the breakfast I ate earlier. But it did, and understandably, my blood sugar tanked shortly after I arrived.

No worries… I always have juice and candy in my desk, so I was able to move on with my day. But, I started getting e-mails and phone calls and before I knew it, I was still at my desk working hard well after my usual lunch time.

Can you guess what happened next? Yes, my BG dropped again. I had to cut off a phone call early so I could walk away from my desk and get something to eat.

Many have said it… our lives with diabetes are great as long as nothing unexpected happens. But something unexpected always happens. Often, at the most inopportune time.

After all this time (26 years) living with diabetes, it’s easy to just shrug my shoulders at a day like this. But this is far more than a shruggable(?) circumstance. While experience is worth a lot on days like this, it’s easy to let experience tell us this is no big deal.

But it is a big deal. Or, perhaps, the fact that we make it look like it’s not a big deal is the big deal. I try not to remember what I’ve lost in time and effort in moments like these. However, it’s easy to tell myself that it’s time and effort I won’t get back anyway, so why bother worrying about it?

And that’s the point. So often, we make it look easy. We give the impression that it’s not hard to figure out, that everything just runs like clockwork.

It runs like clockwork because our lives, present and absent from diabetes, depend on the clockwork.

I don’t know about you, but I’m ready to go off the clock from my diabetes.

Diabetes By The Numbers: Clinical Trials and an invitation.

Clinical trials come and go, and often they may seem like the same thing is just being tested over and over again. But it’s really not like that at all.

Case in point is the clinical trial beginning at the University of Virginia Center for Diabetes Technology. Jess Robic and Jennifer Pinnata from the CDT are here to talk about this trial specifically, and to answer a few questions surrounding clinical trial participation in general.

This trial is specifically recruiting MDI (multiple daily injections) users, but it’s using algorithms developed for use in artificial pancreas systems. There are many super interesting aspects to this study.

The best part is all the diabetes stuff you get as part of participation in the trial. It includes:

– Insulin for the length of the trial
– Use of an innovative insulin “smart” pen
– Use of a Dexcom G5 continuous glucose monitor
– Test strips for the length of the trial
– A stipend, dependent on the number of in-person study visits you complete before the end of your participation.

Seriously, if I was an MDI user, I would sign up for this trial yesterday.

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A quick note: this interview was conducted two days before the unrest in Charlottesville, Virginia on August 12. If you’re wondering why we’re so cheery in the interview, and why we’re not even acknowledging anything about the racial discord of that weekend, or the fact that someone lost their life, it’s because it hadn’t happened yet.

In the aftermath of that sickening weekend, all of us decided to wait a bit before airing the episode. If you qualify, I hope you will consider signing up for this study… I believe it will help lead to something truly unique in insulin delivery for people living with diabetes.
DBTN

Reference Material – Click below for more information on this topic

Jess and Jennifer talk about CDT’s Recruitment Database… to join the pool of potential clinical trial participants, CLICK HERE.

To see the clinical trials currently recruiting and taking place at the University of Virginia, CLICK HERE.

Diabetes By The Numbers: Mindy Bartleson.

Mindy Bartleson is accomplished. I don’t think that’s overstating it. What’s really amazing is how accomplished she is at only 24 years of age.

Mindy lives with a number of chronic conditions, diabetes being one of them, and we talk about them here. Many people remember her from her previous work at College Diabetes Network. She has a really super blog. Her writing has been featured on numerous websites.

And now, she’s written a book.

We talk about the book, about what it’s like to live with so many things and go to college and write a blog and write a book too.

This interview is being aired in conjunction with the kickstarter campaign designed to help Mindy get her book published. CLICK HERE to contribute… the end result will be well worth it.

Here’s a pretty revealing look at one of nicest people you’ll ever get to know.

DBTN

Reference Material – Click below for more information on this topic

Help Mindy publish her book! To donate to Mindy’s Kickstarter campaign,
CLICK HERE.

Mindy’s blog is titled There’s More To The Story, and you can find it here:
blogMoreToTheStory.com

Conversations.

“Are you a brittle diabetic?”

Wow. Two things I don’t like to hear in one sentence. But… if you live with diabetes long enough, you’re going to hear questions like that.

I actually had a great conversation with the person who asked that a couple of weeks ago. Once I explained about how “brittle” is not actually a medical term, we got down to the science of diabetes and what it’s really like to live with this condition every day for the rest of my life.

They shared that their spouse is living with diabetes, and the three of us spoke for a while. We talked about what hypoglycemia feels like, and how our spouses reacted. They were concerned that low blood sugar meant failure. I explained that the better you manage your diabetes, the closer you are to hypoglycemia all the time. I think it was an A-Ha moment.

“Is that a pager?”

“No, it’s my insulin pump. You know, you’re only the second person to ask me that!”

I don’t know why, but whenever I use that second sentence in response to that question, it seems to put people at ease. Once I rolled that out, I was able to downshift into why I wear a pump (it’s my choice for my diabetes), and my CGM (I didn’t like it at first, but I’m getting used to it).

I was able to talk about interacting with others online, and how that eventually led to things like a blog and a podcast, and diabetes conferences and FDA workshops and clinical trials, and the importance of all of those.

“Why did your blood sugar go so low?”

This is a question I get when there’s a low that happens more than once, at the same time of day, in front of the same person. It’s a well-meaning question… someone sees something that concerns them, and they want to help me avoid repeating the scenario.

The problem is, there could be a hundred answers to that question. Either I’ve gone low because diabetes just doesn’t react the same way every day, or because I’m trying something new with diet or exercise and I haven’t figured out the perfect routine yet. Or, this just isn’t my diabetes week… it happens. Or, maybe I just made a mistake and I feel bad enough already and I don’t want to admit it.

There are a number of conversations that happen due to my diabetes. Sometimes short, sometimes detailed, sometimes tinged with self-assurance or regret. I don’t know about you… but what I know about myself is that I need to keep engaging in these conversations. It’s not always about feeling great. It is always about enlightenment and being more comfortable being myself, and being myself with my diabetes.

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