Thursday, February 22, 2018

Coaching in Type 1 Diabetes: A Patient's Perspective

One of my "Twitter Buddies" is a Certified Diabetes Educator who is working on an advanced degree. On Twitter she asked the question, "Okay, working on a school discussion. No better people to ask them those with DM themselves: What's your favorite coaching strategy from your HCP to help you prevent complications? #DSMA" Since my answer would run longer than 280 characters, here goes.

I essentially have two distinct health care teams. My primary care provider is a GP who treats veterans in the Veterans Affairs healthcare system. That patient population likely has fewer people with Type 1 Diabetes than a more diverse population than those seen by a GP in private practice. He generally helps me with regular health concerns. When it comes to Diabetes, he generally defers to my Endocrinologist while at the same time helping me get care for some of the Diabetes-related issues.

The other part of my team is led by my Endocrinologist who divides her time between the VA and work in a teaching hospital. This gives her intimate familiarity and experience at helping me manage the nuances of Type 1 Diabetes.

When I first met my PCP several years ago, he reviewed my electronic health record and said, "You need to get your A1C down." This is something I already knew going back to 1994 when I was diagnosed and shortly after the Diabetes Control and Complications Trial was published. That trial basically said there is a definitive scientific basis for the notion than lower blood glucose levels result in a lower incidence of common complications arising from Diabetes. What my PCP was saying was something I already knew, was something I was working hard to accomplish on a daily basis, but because of challenges from other complication it was something I was unable to do.

I told him something along the lines of "I've read the DCCT, I know what it says, and my Endocrinologist and I are working real hard at optimizing my A1C. However, between gastroparesis, hypoglycemia unawareness, impaired kidney function impacts on insulin efficacy and despite frequent blood glucose monitoring, use of a Continuous Glucose Monitor and the most advanced insulin pump available to me, this is (for now) as good as it gets." What I was communicating was that I am aware of the importance of lowering my A1C, but am also knowledgeable about my illness and the various factors in my particular situation that make this goal challenging. I also said, "What I need help with from you is in managing these variables." I was asking for his expertise and experience and showing him that I was going to be cooperative and willing to do my part with helpful guidance from him. Just saying "You need to lower your A1C" was simple but not helpful - what I was looking for was concrete, actionable and realistic tools and tips to meet that objective. So far, with that common outlook in place, this relationship has worked out pretty well.

With my Endocrinologist, the coaching relationship is a bit different. I am fortunate that our relationship is (as I see it) a fully collaborative partnership. As we discuss my case, we take into account clinical best practices and work them into realistic lifestyle choices that will most safely lead to optimal glycemic control. She is in close contact with my gastroenterologist, nephrologist and cardiologist as well as my PCP - the idea being that she stays informed about the other issues having a bearing on my Diabetes management.

While my healthcare team helps "Coach" me to be as healthy and happy as I can be with all of these challenging conditions, I believe that just like an athlete, coaching can only do so much - the actual performance is up to me.

Sunday, June 11, 2017

Following #2017ADA Online? Fuhgeddaboutit!

Using my own "Tips on Following the 2017 American Diabetes Association Scientific Sessions Online" turned out to be an exercise in frustration and futility. If it were because that resource were useless, that'd be OK. I'd learn from it and move on. But somehow the #2017ADA managed to snatch defeat from the jaws of victory for those of us following online.

Censorship - ADA style (and a great response)

Friday, June 9, 2017

Tips on following the 2017 American Diabetes Association Scientific Sessions Online

One of the biggest events of the year for people with diabetes is the American Diabetes Association Scientific Sessions. If you want to know the latest research discoveries, what new developments are coming that will make life easier for people with diabetes - this is where those things are revealed and discussed. It is the Super Bowl and Academy Awards of diabetes all rolled into one.

Held this year in San Diego, attending in person is not a cheap undertaking. Hotel rooms run $200-400 per night (count on 4 nights for the whole event). Next, registration is $595.00 if you are a "professional" member while non-members pay $915.00. If that is too steep, you can buy a one day registration for $320.00 and $410.00 respectively. Add a couple Big Macs and you're looking at two grand, airfare not included. If you are lucky, you can write it off as a business expense, or your employer will pick up the tab to send you to sunny San Diego. For most people with diabetes, that isn't going to happen and the cost is too steep to satisfy some idle curiosity.

But you can (in a fashion) follow what is going on without leaving the comfort of home.

If you were thinking that in the connected, internet world of the 21st Century you could follow the presentations that interest you online, the answer is "NO." You CAN see some of the 'theme areas' here and if you click on one of them you will get some details of what the program looks like.

But where the "bread and butter"is can found if you search the abstracts. For example, I have diabetic gastroparesis - a complication that prevents my stomach from working properly. I went to the "Abstracts Search" page and entered "Gastroparesis." Among the three studies, I learned that in one researchers discovered that people with diabetic Gastroparesis have lower quality of life scores than cancer patients. I could have saved them some time and effort.

Another way to go is to use the "Itinerary Planner." Simply create an account and you can surf through some thumbnails of the presentations that are on the program. It offers a little more information than the Abstract Search in many cases, but it isn't like you are in the audience.

In fact, that is where things can get sticky. Filming, photography and audio recording is prohibited. Their guidelines remind me of the information security warnings in the Pentagon. The chances of somebody streaming a presentation that you actually want to see are somewhere between slim and none.

The next best thing (and it has tons of drawbacks) is to use Twitter and follow the latest entries with the hashtag #2017ADA to see what is happening. It is great if structure, continuity and full information isn't what you are after. Already the annoying ads are flying and the 'fanboys' for various products or fringe ideas are at busy.

Having tried pass along what I saw at various conferences to folks at home following on TWITTER, I learned a few things. One, it is hard to follow a presentation, think about what is being said, then distilling it into 140 characters. Doing it on a smartphone you thought was big, and in a semi-darkened room to boot adds to the joy. If there are questions coming in, it gets even harder to keep up. For folks at ADA who are trying to tweet out information, you have my admiration and a large dose of sympathy.

Finally, you might prefer to read all about it later. Some online sites that specialize in the world of diabetes are sure to hit the highlights. The ADA will also publish some of the content online as well.

In short, staying home means saving money but missing a lot of really great information. This is the fourth year I've tried following the ADA Scientific Sessions online, and while I might check twitter more often, I've learned that trying to follow in real time is a time wasting exercise in frustration.

I think I will wait for the movie.

Thursday, May 18, 2017

Mindfulness Can Help To Keep Diabetes From Bringing You Down.

Last Tuesday, the theme of #DBlogWeek was "The Cost of a Chronic Illness." Many of the 77 Diabetes bloggers focused on the economic impacts. The theme for today is "What Brings Me Down."

After trial and error, lots of reading and countless conversations, I have settled on using a focused, forgiving outlook to cope with Diabetes. I try not to preoccupy myself on failures or their consequences. For the most part this individualized form of 'mindfulness' Ive' built for myself works pretty well.

Living with Diabetes (of any type) means we are united by the intensely personal struggles of heart, mind and soul that begin when you are first told you have an illness that will never go away. Many of our struggles are lonely - despite the support of loved ones, friends and others who share our journey. While that support helps us make this bumpy road smoother, over time (often through trial and error) we learn to cope. When coping is hard, we endure.

In the 23 years of my Type 1 journey, I thought I had all of this down pat. Don't dwell on yesterday's shortcomings. Avoid setting unrealistic expectations for tomorrow. The easiest way for me to confront the potentially overwhelming challenges of diabetes is to focus on right now. Get the carb count right, dose appropriately, guesstimate how long to run the bolus (to accommodate gastroparesis) and check my BG in a couple of hours. That is my routine - a never ending series of critical calculations with little margin of error. Our tools for measuring success (or failure) may be in error by as much as 10%. For good or ill, this is our world, we do the best we can and try to make the best of the life we are given. It isn't perfect, the results rarely are, but it is our world and I do my best. It works.

Then I had a heart attack.

Looking back I recall that in the midst of my heart attack I was working my Diabetes exactly as before. As they were preparing me for the operation that would remove the blockages, I was briefing  the surgical team about my BG, insulin pump settings and convincing them to leave it alone. Together we devised a plan so that it wouldn't interfere with the procedure. Just as they were about to begin, a nurse asked suddenly if I was an organ donor. An hour later I was in CCU having dinner. As always, checked my BG, counted the carbs, ran the bolus wizard and reveled in that delicious hospital fare. Even in the middle of a heart attack, surgery and recovery, Diabetes is always there.

One thing I continue to learn 3 months after that scary time is that the same approach I use to live with Diabetes works for other things, like recovering from a heart attack. Learn from yesterday but don't dwell on it. Don't worry too much about tomorrow. Rather, do your best today, be honest in your effort and embrace the challenge. Don't sweat the ignorant comments, unsolicited advice or stereotypes. If Diabetes was as easy as they think it is, they could handle it. Rather, embrace it by knowing that you are on a road that few can really understand. Smile in the mirror knowing that if others knew what you do, they'd be in awe.

It is hard. Much of the time we manage to get by. Other times we need to lean on those who care for us. There also come times when we need more assistance. Get it. It helps, and chances are as your road gets smoother and not as steep, you'll wonder why you waited so long.

Wednesday, May 17, 2017

Diabetes Blame Game? I Don't Have Time For That

Within days of when I was  told I had Type 1 Diabetes over 23 years ago, I took a "Diabetes Risk Test." I scored a big fat 0. I learned that genetics could be a factor, and being an amateur genealogist, I looked at my family tree for clues. Going back 4 generations (as far as 1808) not one blood relative had Type 1 or Type 2 Diabetes. So who or what could I blame? Nobody and nothing could account for it, chances are I'll never no, so I gave up on "The Blame Game" and moved on. I don't have time for that.

Over the years, I have been told "you don't look like you have Diabetes." Maybe they were confusing me with their stereotype of what Diabetes should look like. Did they picture someone who is old, overweight or sedentary? I'm middle aged, 5'10" and weigh 145. That isn't exactly me. Indirectly (applying that stereotype) they were trying to blame my Diabetes on an unhealthy lifestyle. Sorry, but lifestyle has nothing to do with getting Type 1 Diabetes. I dismiss those comments and move on. I don't have time for that.

Then at various times my Diabetes has been categorized as "Poorly Controlled." With Type 1, gastroparesis and a host of other complications that make tight control within ADA standards impossible from a safety standpoint, my instructions have always been, "Do the best you can." Even with the finest professionals helping me, the latest tools and diligent attention to detail, I cannot get the kind of A1C that many take for granted. In other words, for those who don't understand the intricacies of my particular brand of Diabetes, I am to blame. My response (most often inside my head) is unprintable. Once again, I was getting blamed for something beyond my control. I don't have time for that.

Similarly, one time when I was in an Intensive Care Unit recovering from a near fatal episode of diabetic ketoacidosis, my endocrinologist let slip that she catches some blame from colleagues when one of her patients has an episode like mine. I should have been upset by what I was going through, but I was furious at what she was going through. Now the blame game was out of control. I tried to reassure her, and I hope it helped.

We also get blamed when our blood glucose gets too high or too low. As I am fond of saying, we are trying to mechanically replicate a complex biochemical process with numerous variables we cannot completely control using tools that are barely adequate for the job. To the layman, I say "here, you try it." In fact, I once had an endocrinologist try for 3 days to manage my diabetes while I was in the hospital. She couldn't do any better than I could. As traumatic as that period was, I was strangely elated that they learned that with all their professional training that they could not do any better than I. The blame game lost, which is why I don't have time for that.

So if doctors, family, friends or strangers try to play the "Diabetes Blame Game" with you, take a page out of my playbook. Tell them you don't have time for that.

Monday, May 15, 2017

Adapting to a New Normal: Diabetes and the Unexpected

One morning when I was a little boy, I noticed my Mom taking a pill. I don't remember the details (it was  during the Nixon administration) but some things stuck. She said it was a pill for her Thyroid. "Thyroid" didn't mean much to a second grader. What did is when she said she would have to take it every day for the rest of her life.

I couldn't imagine such a thing. My version of long term then was when summer vacation would start. When the number of years you have under your belt are still in the single digits, "the rest of your life" was incomprehensible. I was simultaneously amazed, overwhelmed and intimidated.

Fast forward to when I turned 30 and was told I had Type 1 Diabetes. I was diagnosed in the morning, saw a doctor after lunch, got a 3 hour "How to Live with Type 1 Diabetes" class and was home for dinner. The changes my life had just taken started to sink in.

I would have to draw blood out  of my finger at least 6 times a day.
I would have to give myself shots several times a day.
I would have to compute the nutritional content of everything I put in my mouth.
I would have to compute the proper dose of insulin to inject to keep my blood glucose at acceptable levels.
I would have to compute how much insulin to inject for the nutritional content of every meal.

I would have to do this several times a day. Every day. For the rest of my life.
My military career was over.

Once again, I was amazed, overwhelmed and intimidated.

But there was one hidden blessing. My new endocrinologist, Dr. Maureen Koops told me not to dwell on yesterday, or to worry about tomorrow as far as my Type 1 Diabetes was concerned. Pay attention to "right now," do your best every time and things will work out. I couldn't help but think of the thousands of finger sticks and insulin shots that were going to stretch out for (hopefully) many years. I even calculated the shots, finger sticks, etc. on my 22nd 'diaversary.' It was impressive.

Getting Type 1 Diabetes was unexpected. I was 'too old' (30 when diagnosed). Nobody in my family had diabetes of any kind. I was in exceptional physical condition. But I got it anyway.

My life changed. Things I took for granted - eating, enjoying basic life experiences without thinking of short or long term health impacts - those days over. But I learned how adaptable I really am. I could mechanically control complex biochemical processes using mediocre tools and (for the most part) live a relatively normal life. Not 'normal' as before (carefree) but a new, more careful 'normal.'

I'll take it.

Sunday, May 14, 2017

Affordable Insulin: More Thinking Outside the Box (Vial Exchange)

Fact: Insulin is too damn expensive for many people.
Fact: Corporations hate paying taxes.
Fact: They also like the public to applaud their good works.

Advocates for affordable insulin have been doing outstanding work at defining the problem. The costs (and impact) of unaffordable insulin have been well publicized in TV news, major publications and across social media. Manufacturers are starting to feel the heat, and elected officials are hearing about it. What is lacking is that policy makers, manufacturers and payers are silent when it comes to solutions. Instead of waiting for them to figure it out, I'll toss this idea out there.

Working poor who have the fewest dollars to go around are hurt most by high insulin costs. Many of them receive SNAP benefits (in the form of a government issued debit card) to help them buy food.  That SNAP card could serve as their entry into a charitable way for insulin manufacturers to help those most vulnerable to escalating insulin prices.

Here is how it would work:
The program would be limited to those with a prescription for insulin and who receive SNAP benefits. When they needed to buy insulin, they could take their empty vial (or package of empty pens) to their local pharmacy. After demonstrating eligibility by showing their SNAP benefits card, they can exchange those for a full insulin vial (or package of insulin pens). The cost to them: nothing. The pharmacy would be reimbursed by the manufacturer at the rate they would normally receive. The manufacturer could deduct that payment from their taxes as a charitable contribution. Of course, the manufacturer and pharmacy would publicize how they are helping people, giving back to the community, etc.

Would it work? I don't know. There could be rules to prevent manufacturers from dealing directly with pharmacies. They may have contracts with insurers or pharmacy benefits managers (PBMs) that prevent such transactions. PBMs might throw up roadblocks to something that would deny them their share of the pie. There may be rules preventing use of a SNAP benefit card in this manner.

Otherwise it is simple, straightforward and needed. It'll probably never happen.