Wednesday, June 29, 2016

Remembering Diabetes Advocate Kitty Castellini

To those who knew her best, Kitty Castellini was a lover of bologna, a practical joker and passionate Disney fan -- not to mention a devoted mom and wife who had a quick wit and feisty personality, along with (believe it or not) expertise in explosives and hazardous materials.

She also happened to be a tireless diabetes advocate who inspired countless people across the globe, founding the Diabetes Living Today weekly radio show and website in 2007 that was one of the early online hubs bringing our community together. Through the years, she received Congressional and state government recognition for her advocacy work, and made history as the longest-surviving pancreas transplant recipient who was basically cured of type 1 for several years.

For more than a half-century, Kitty fought the good fight with a sense of humor and pluck that defined her spirit beyond diabetes. But our world lost her light on June 19 after several months of declining health. Our friend from Vineland, NJ, was 55 years old and she had lived with T1D for five decades.

Kitty's death has hit the DOC (Diabetes Online Community) particularly hard. Many have been sharing stories and condolences online, especially those of us who met Kitty in person in those early days of the initial Roche Social Media Summit. Hashtags #WeLoveKitty and #DOC4Kitty have cropped up in her honor, and our DOC has lit a collective blue candle in her memory.

Her daughter Lauren says the DOC meant the world to Kitty.

"She poured her heart and soul into diabetes this and DOC that, and she loved being able to reach out and help anyone she could. It made her so happy. That wasn’t work to her, it was a pleasure for her and very much an honor and privilege to be that voice speaking out to help people. You all meant so much to her, and were another family to her."

Kitty's Diabetes Story

Kitty was diagnosed with T1D as a toddler in 1963, and her older sister too was diagnosed with T1D at a young age. She shared her remarkable D-story many times in different places over the years, and this guest post from a couple years ago recounts her 50-year journey quite well.

Of course, many knew Kitty following the pancreas transplant she received in 2004. A signature photo of her enjoying an ice cream sundae following the procedure at University of Maryland Medical Center appeared in numerous publications, and she was producing her own insulin for nine years up until 2013 when her transplanted pancreas eventually failed from a virus.

That length of time made her the longest-surviving pancreas-alone transplant recipient in the world, and as she was effectively cured she'd often describe herself as a "former diabetic."

"Her advocacy and dedication, that gave her a whole new purpose that she hadn’t realized she was meant to fulfill before the transplant," Kitty's daughter says. "I want everyone to know that she loved her work in the Diabetes Community."

After 2013, she returned to a Medtronic pump (as she'd been on before her transplant) and became a Minimed Ambassador. Her Diabetes Living Today was a nationally syndicated weekly radio program on 92.1 WVLT. It was entirely her creation and she handled everything herself -- from selecting guests and topics, to sharing news tidbits, to designing and maintaining the show's website, and even securing the legal trademark protections. For a while, she co-hosted the show with Dr. Joseph Fallon, and after they parted ways professionally he remained her endocrinologist. Among her many D-related achievements were recognition from the U.S. Congress and New Jersey Senate in 2007 for her diabetes advocacy work, and in 2011 she was recognized as a Roche Diabetes Care Hero and Torchbearer.

Thanks to her own experiences, Kitty had a huge place in her heart for cure research and fundraising, and she'd become a strong advocate for the Diabetes Research Institute (DRI) in Miami, FL.

Remembering Kitty

D-Dad Tom Karlya who works for the DRI wrote a beautiful personal blog post about Kitty and offered us this statement:

"The Diabetes Research Institute and Foundation, as well as our entire community, lost a dear friend and powerhouse in advocacy with the death of Kitty Castellini. Having T1D herself, she would often remind us that she was a 'Union Gal' and participated years ago in our Dollars Against Diabetes (DADs) Event each Father’s Day. Her passing on Father’s Day, I believe in Kitty’s style, will serve as a reminder for many years to come that she will be with us. As an organization, we are sad, but were so fortunate to have had Kitty in our corner. She believed in our work. She fought right until the end… and we will continue in that spirit in Kitty’s memory. Our prayers, condolences, and thanks to her family for sharing such a wonderful woman with us, as well as the entire diabetes community."

Kelly Kunik at diabetesaliciousness, a fellow Jersey gal who first connected with Kitty after reading a 2008 local newspaper story on her, cherished their friendship and regular phone conversations -- which were never short, Kelly points out.

"Kitty was a DOC original with an incredible spirit and kind heart, a tremendous will to live and succeed no matter what was thrown at her in life," Kelly said. "She picked herself up and made adjustments without dwelling on it, and when life threw her lemons she threw 'em back."

Diabetes advocate and longtime type 1 Gina Capone also met Kitty at the first Roche Diabetes Summit in 2009, bonding over a mozzarella and tomato appetizer and becoming instant friends. Over the years they became close and Gina considers Kitty a mentor, close friend and surrogate mother.

"She always called me her ‘Gangsta girl,' and when she was pissed about something she'd say, 'they can kiss my country-styled white ass.' That always made me crack up!" Gina recalls. “I'll never forget her funny sayings, how she was always so smart and right about things, her feistiness and how she loved people. Kitty was always so compassionate and caring about things she really believed in -- especially diabetes advocacy.”

Career as an Explosives Expert

Of course, Kitty's story is much more than just diabetes. As her daughter and friends remind us, Kitty had an indomitable spirit and fiery personality packed with unabashed kindness and compassion. She could be "loud in your face" and humble at the same time, in just that Kitty kind of way.

As Kelly puts it, "Kitty was good at calming waves but rocking the waters when needed. She wasn't shy about telling you how she felt."

Diabetes was really a second calling in life for her, so to speak. Kitty had retired in 2000 after two decades for the Laborers International Union of North America. She was a confined space entry specialist with a license as a first responder in hazardous chemicals and explosives. Throughout her career, she never missed a day of work and worked her way up the ranks from flagger to foreman, working on many Superfund construction sites with the Army Corps of Engineers.

"She was really committed to her career, in the same way that she became committed to diabetes advocacy," Lauren says. "She knew she had a lot to lose, and she wasn't going to let anything stand in her way. That meant being a single mom, working a man's job, sending me to private school, and becoming such a voice in the diabetes community. She was a woman on a mission, in every aspect of her life."

Food Lover and 'Disney Freak’

Anyone who knew Kitty can also smile at her other big passions in life: food and everything-Disney.

Kunik, for example, remembers meeting up with Kitty at the airport and seeing her eating a bologna and cheese sandwich, a favorite as she loved that. Food became a big thing in her life after the pancreas transplant because she loved being able to eat without worrying about her diabetes, Kelly says. In another life, Kitty could have been a food writer... or a Disney advocate, based on that fandom.

Often before and after diabetes events, Kunik remembers how Kitty would set aside from to travel to DisneyWorld to visit the park. She would sometimes call ahead to order Disney items ahead of time, and would bring an extra bag or suitcase to cart her collectibles home. Never enough time thanks to the events to go to Disney, or if the weather was too hot or cold? Nonsense, Kitty would insist the trip be made. And she was always punctual, especially when Disney was in play.

The first time I personally met Kitty in real life, we sat together at the Roche Social Media Summit in 2010 (ironically, in Orlando). We shared our diabetes stories, but it was our mutual love for Disney that made us instant friends – as she was a self-described “Disney freak” and my wife and I had honeymooned there. Turns out Kitty and her husband Gary took their marriage vows at DisneyWorld, and the park was a fixture in Kitty’s life.

Almost every year for 25+ years, Kitty and Lauren would travel to Disney together as a mom-daughter tradition, and Kitty had a famed Disney collection, with countless collectibles all throughout their house.

“Everything is Disney, I’m not kidding – from the spoon holders, salt & pepper shakers and teapots, to the very nice curio cabinets for all of her collectibles to go in,” Lauren says. “The whole house, it’s nuts. She was so passionate, and I have videos of her down in Disney when you could hear her at shows shouting and cheering for Mickey over crowds. She just loved it.”

Their last visit was in October 2015, the first time they’d been to Disney during that month that happened to fall on Lauren’s birthday. Kitty insisted on going even though she was visibly weaker at that point. Lauren feels her mom may have unconsciously known it would be her last trip – at least for a while.

Lauren plans to continue the Disney tradition, and will travel there later this year in honor of her mom.

One story that stands out about her mom, Lauren recalls, was during her first of college around Thanksgiving time, when the local ABC affiliate in New Jersey was giving away a trip to DisneyWorld. Her mom would go to the nearby Boscov's department store every day to enter the giveaway, calling Lauren with daily updates on her entries.

Lauren recalls just sitting down for lunch with friends in the college cafeteria when Kitty called and told her she’d won the Disney trip! She didn’t believe it.

“She’s a practical joker, and loves to joke and prank people. So I didn’t believe her, and said ‘No you didn’t!’ and hung up on her,” Lauren recalls. “She called back and said ‘I’m serious.’ It was for her and 7 people, and we went down for about five days and they put us up in a deluxe resort. It was amazing.”

That Disney trip came before Kitty's pancreas transplant in 2004, and Lauren said her mom was still using her insulin pump at the time. She remembers Kitty doing a rose ceremony at the Magic Kingdom, tossing in a coin and making a wish at Cinderella's Wishing Well near the castle inside the Magic Kingdom.

“She made her wish for a new pancreas, and vowed that if she could get it, then she’d use her voice to help other people,” Lauren said. “Her wish came true.”

A Lasting Spirit

Since her mom passed away, Lauren says she, Gary and the rest of the family been touched by the outpouring of support from the Diabetes Community. She also has to laugh at how she feels her mom's spirit is still around, having fun. Her step-dad bought a nice suit for the funeral services and as he went to put on his dress shoes, the heels broke. So he opted to wear a comfortable pair of black shoes instead.

"I'm not one to believe in ghosts, but I do believe in spirits... and we were laughing that it was a practical joke from mom. Or that she wanted to make sure he was wearing comfortable shoes," Lauren said. "She’s sending some kind of message.”

We can't help but tear up when thinking about Kitty, especially when scrolling through her tribute page and photos online. We're so very sad to lose her, but it does bring a smile thinking she may be having blast with Mr. Walt Disney himself... and probably playing practical jokes on him, too!

Kitty lives on in our hearts and continues inspiring us throughout the DOC. Thanks for everything you gave us, Kitty, and no doubt you'll continue making a difference in this world.

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This post by Michael Hoskins was originally published in June 2016 at DiabetesMine.

Tuesday, June 14, 2016

Thoughts on #DiabetesAccessMatters From the Airport

Here I sit, in the New Orleans airport waiting for my flight back home following the ADA’s biggest diabetes meeting of the year.

I've got some personal thoughts to share.

This isn't a professional recap of anything, just a line to what's going through my head and heart here at the moment. More professional, balanced writing and analysis will occur elsewhere, in due time. 

My mind is swimming with so much information and there's so much to process on so many fronts. While this ADA event leaves me hopeful and inspired in so many ways about the state of things, it also leaves me a bit unsettled and sad.

In many ways, I feel powerless to move the needle on change when it comes to making sure people have access to the tech and treatments and tools they want to use.

#DiabetesAccessMatters was a big topic on everyone’s mind at ADA.

No doubt, the United Healthcare and Medtronic partnership in early May was a hot-button issue that got attention and drew broad discussion going beyond just those two companies.  It came up so many times, officially and unofficially. Key leaders and groups are working on this, having discussions with MedT and other industry players. They’re talking with insurance companies. They’re looking at how the D-Community can coordinate and do more to persuade payers not to limit our choice and access.

Many of us who were there sounded like a broken record, expressing our frustration and disappointment – talking to tech company folk and doctors and regulators and so on to make sure they know how we feel.

They do.

I’m happy about that.

Everyone's trying to figure out "What's Next?" and what we do, but there's nothing black and white about any of this. It's all so damn complicated and has a lot of moving parts. So much is dictated by unintended consequenes of federal and state laws, how businesses are responding to the whole healthcare game, how digital health data can be used most effectively to guide decision-making and help get people heather. It’s not easy to figure out this stuff.

What gives me hope is that some of the brightest minds that I've ever seen in diabetes, healthcare, policy-change and frankly the world are on this.

And then I go online and see people in this Diabetes Community saying “Oh, advocates aren’t advocating on #DiabetesAccessMatters. It must not matter to them.”

Since it's now been just over a single month since the UHC-MedT partnership came to light (thanks to a smaller competing company's red-flagging), the fact that no concrete answers have been publicly outlined and nothing's "fixed" must mean this just got swept under the rug. 


Since I am at the airport right now, I kind of want to go put all my Internet-connected onto a runway and just have them run over, to get away from that crap. Seriously? How goddamn naïve. 

Don't misunderstand: I'm not mad about people being mad about things not moving faster. I wish they did. Of course. I am not mad about people voicing their opinions. That's what #1 is all about. What gets under my skin is those who decide to start questioning advocacy, saying nothing is happening or it's just forgotten about because it hasn't been shared on social media or anywhere else for that matter. 

Shit is happening, and it’s happening by those who ALSO don’t know what the fuck to do about this or how to change it. But they’re asking questions, working to coordinate effectively, and make a lasting change in this area that goes beyond diabetes.

And with that, it’s where my heart shifts a bit…

Because despite all that’s happening behind the scenes, I feel so helpless. That with all this talk of coordination and change, we’re not able to make anything happen. It’s not us calling the shots, it’s the payers. Everything in diabetes tech and treatment these days is about making sure PWDs can use these tools correctly and effectively, achieving better outcomes and getting to a good healthy quality of life.

I've seen some friends express similar feelings (as I'm sure others have), and I have to echo that I'm feeling a lot of the same helplessness about this -- even though it's only been a month or so and despite all the conversation that is happening.

That desire for data-driven outcomes is what’s pushing these UHC-MedT style decisions forward, and those are going to continue because that’s the reality of the world now (at least the first world, where people can afford this shit).

Many globally can’t and that’s a whole other – somewhat related? – topic on access in itself, and it all makes my mind just start drowning again.

Insulin costs way too fucking much.

Devices do, too.

People at insurance companies who aren’t on my medical care team are second/third/quadruple guessing my doctor-ordered treatments. They’re saying I only have access to what they think will do better for me, based on dollar signs instead of my own health and choice and medical guidance.

They want my A1C lower, but want to limit the amount of test strips I use each day – thereby screwing with my chances of lowering A1C .

Assuming I live long enough to get to Medicare, my access and choice is limited even more just like all those who can’t get certain pumps, CGMs, best medicines or enough supplies now. But hey, that’s OK… they’re hedging bets that we’ll just die soon anyhow, so WTF does it even matter?

Anyhow… ranting aside.

I will continue to do what I can from my little corner booth.

If that means not being a customer of these companies that are pulling strings and not standing up for full choice and access across the board, so be it. If they don’t get that they play in a sandbox and must nurture the ecosystem in order to best make people healthy, then they don’t get my business. And they get my condemnation.

I will tell anyone I know about how I feel about this. That includes diabetes advocacy orgs that are collecting our stories, my elected leaders, insurance policy-makers, and my medical care team. I’ll encourage the company I work for, as well as others that are and will continue to be in the insurance-shopping business, not to choose UHC or other insurers who blatantly adopt these money-driven policies.

It may not be much and it may not change the game, but it makes me feel like I’ve accomplished something. And maybe that’s all I’ll be able to do for now, before the eventual day when I won’t have a choice about making a choice and will have to go silently along with whatever’s forced upon me.

And now, I have 10 minutes to board the plane. Maybe the sky-high view between Louisiana and Michigan will bring a little wisdom, or something (probably not, as I'm flying Spirit that makes me pay more for everything)...

Son of a bitch.

Clouds may be all to see, anyhow.

Wednesday, June 8, 2016

First Month of My Insulin Pump Break

A month ago, I decided to step away from my Medtronic insulin pump.

This was long overdue, a needed change that I needed to revisit in order to get my diabetes back in line. Yet, I had been putting this off and it wasn't until Medtronic's business decision to screw with patient choice and access that I made the final personal decision to disconnect from my pump and go back on injections like I've done a few times in the past. My first pump vacation lasted for about five months in 2010, and led to a 1.1% drop in my A1C. The later vacations also saw smaller drops, but still they helped me re-focus on D-management.

And so, that's what I set out to achieve in the here and now. 

After my first month of this #PumpHiatus, my BGs have been phenomenal compared to how they were before.

Glucose variability is hella better, and my A1C dropped from 8.4% in February to 7.6% in early June! This was also down from my A1C last Fall where it rang in at 9.1 -- so progress continues, and I'm very happy.

My endo is happy, too.

Here's what my D-data shows:

(Enter first air-pumping here!)

A few specific reasons are behind the improvements, I believe.

  1. Discipline: Whenever I mix up my management routine, I tend to do better. So going back on MDI has motivated me to pay closer attention to all aspects of my D-care, from insulin dosing and carb counting to exercise effect and so on. Whenever it comes down to eating something, I must weigh whether I want to dose insulin for it -- and that more often than not has made me second-guess the desire to eat at that time. 
  2. Low(er) Carb Eating: Yes, I have been watching the carbs and taking in fewer of them. Instead of a sandwich for lunch, an avocado with chicken or tuna salad. More veggies instead of rice or pasta. More fish and meat, and even less beer (WTF?!) that's sweeter and more carb-heavy. This has meant less glucose variability, a pretty certain consequence of carbs for me. As a result
  3. Afrezza: Yep, I'm back on inhaled insulin. For close to a month,  I've been using Afrezza and am LOVING the blood sugar effect it's helped me achieve so far. I'd tried it out last Fall for a few weeks, but decided that it wasn't something I wanted to continue using because of long-term concerns about potential lung effects. But none of that's known for sure, and so I was willing to try Afrezza again once going on my pump break.
    I've been using it for higher carb meals and larger corrections, keeping Novolog pens as my "base fast-acting insulin" used for smaller doses and meals that are more predictable. This works the best for me, instead of using Afrezza 100% of the time. I still have some reservations (possibly paranoia??) about long-term effects, and so I am not going full force with Afrezza. For me, I'm also pretty confident in my ability to improve even more and get to a better place as having Afrezza in my D-toolbox along with other insulins, my CGM and everything else.

    For the first few weeks, I was actually fortunate to snag some samples to use and didn't have to buy it myself in the beginning. Now, those samples are gone and I'm going through the process of getting insurance approval for Afrezza ASAP, so I can weave this into my routine again.
Overall, I've not calculated how much less insulin I am taking but that's a work in progress and I'll start doing that D-match for summary sake before long.

I've just recently started using my Dexcom more fully, taking advantage of the "Events" feature that allows me to chronicle insulin doses, carbs, exercise, Lows, Highs, Alcohol, and Stress.

And no app is needed for insulin dosing, for me. I just do the math -- that's easier for me. If I am 200 and need to correct to get back to my preferred 100 level, it's a simple equation using my correction factor of 25 points per unit of insulin:

200-100 = 100....

/ 25 = = 4 units.

Typically, my insulin's still kicking for about three hours so any additional correction doses during that time would be scaled back significantly, depending on the exact timing.

So, things are going well.

My next A1C is slated for mid-August -- a time my endo and I chose specifically because it will be a good follow-up to see how my A1C fairs for a full three-months of this #PumpHiatus.

As of now, taking a step away from my pump was the best decision I could've made for my D-management at this point. I'm eager to see what the next couple months bring.