AADE – DiabetesDad

What am I Doing Here?……..for Kycie, for Reegan……the Fight Goes On!

Posted on August 15, 2017 | by tomkarlya | 3 Comments

This is the question I asked myself as I looked at the many attendees at the American Association of Diabetes Educators (AADE) Annual Meeting who stopped in to the presentation of the incredibly knowledgeable Susan Weiner and myself at our missed diagnosis of T1D. People believe that speaking in front of a large crowd is easy for me, in reality it is not, for reason that those who are close to me understand. It is even more daunting when the audience is full of professionals. REALLY SHARP PROFESSIONALS.

The week before I was to speak I reached out to two parents who lost their child to this disease being misdiagnosed and to fill them in on what was happening. It is always a stark reminder to me that this work should not, and will not, stop for me until the paradigm is changed to a direction where each and every person showing stomach virus like symptoms (and more) are checked for elevated blood sugars.

What makes it easier for me to present is when I reflect on each and every person I have met in this battle who has a child who and is no longer here because a simple blood check was not done. I also reflect on the many people who have joined this fight, and have been in this fight, long before we have arrived where we are today…….but make no mistake; the surface is barely scratched.

Presenting at AADE allowed a very unique opportunity. Hopefully, and eventually, every state will hear the message and carry the banner. The list keeps getting longer of those who help and when it comes to AADE, Susan has been my mentor and guide through the maze of people more educated than I could ever become and true community leaders. My thanks to her are endless.

I also know I have a story to tell……..and as long as I have a breath in me, the story will continue to be told………it’s owed that much energy, and more, to Kycie, Reegan, and the so many more who can no longer fight for themselves. Are you still in the fight? Because we surely need everyone willing to spread the word. Let’s not wait for the next Kycie or Reegan to happen to say, ‘this is horrible’. Let’s get rid of ‘horrible’.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Oh…..It’s Butterfly Kisses…..My Baby Girl is Engaged!

Posted on December 21, 2016 | by tomkarlya | 2 Comments

“I think we have been apart too long. I really just cannot exist without her in my life.” And in an instant, all of the concerns about,; will he take care of her diabetes, will he make sure she is okay, will he care for her, will he…..will he……willl he???????
I answered him, “You not only have our blessing, we would be honored.”

And in those few words, I felt all of the energy run out of my body, my precious little girl, my baby girl, the one who “Daddy’s-Little-Girl” describes…..was being given to another man to become one.

Just like that. Just that quick. After 26 years 9 months and 13 days……my daughter would leave the shadows of her mom and me and become engaged to become one in another’s life.

He’s a good man. He’s been part of our lives for a long time. We have watched the two of them grow……apart….and together. She’s now a nurse, he graduates the Police Academy early next year. They will be fine.

My little girl.

Was it not just yesterday she had to climb to get upon my knee.
Was it not just yesterday we were rushing her to the hospital and diagnosed with diabetes.
Was it not just yesterday that I wiped her tears.
Was it not just yesterday that her feet were on top of mine as we danced.
Was it nt just yesterday that we started with butterfly kisses.
Was it not just yesterday that I was superman and could do anything.
Was it not just yesterday that I tucked her in at night and sang to her.

My little girl.

No man has been luckier than I to have such blessings. Wedding plans are looking toward early 2018. And at that time I will walk her down the aisle, I will lift her veil, I will shake his hand and pass her hand over to his. She will change her name on that day.
She’ll make a promise,
And I’ll give her away.
Standing in the bride room
Just staring at her,
She asked me what I’m thinking,
And I said “I’m not sure,
I just feel like I’m losing my baby girl.”
Then she leaned over and gave me

Butterfly kisses, with her mama there
Sticking little white flowers all up in her hair
“Walk me down the aisle daddy, it’s just
About time”
“Does my wedding gown look pretty Daddy?”
“Daddy don’t cry”
Oh with all that I’ve done wrong,
I must have done something right
To deserve her love every morning,
And butterfly kisses
I couldn’t ask god for more, man, this is
What love is
I know I’ve gotta let her go, but I’ll always
Remember
Every hug in the morning, and butterfly kisses

I love you my baby girl. Congratulations on your engagement.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Lilly Fires First Shot in Lowering Insulin Cost……Now We Need a War!

Posted on December 13, 2016 | by tomkarlya | 3 Comments

Today, Lilly Diabetes released an announcement that they are reducing insulin up to 40% for some users in the retail market. You can read the announcement here:
https://investor.lilly.com/releasedetail.cfm?ReleaseID=1003887

Now this very well may not be for everyone and clearly will not work in all cases, maybe not even in a whole bunch of cases. But it will help in enough cases to impact a good deal of lives, and that’s good. Lilly deserves all the credit in the world for actually trying to do something, and being the first to fire a tangible shot. Now naysayers might criticize it; but there is something in this release that is revealing when Lilly Diabetes President, Enrique Conterno, states that this is a ‘first step’, and I believe him. I participated in the discussions mentioned and I can tell you this, Lilly is serious in their attempt.

Why? Because as I have stated before, I’m not a huge fan of petitions. From my days in government I know they accomplish little but good PR for the ones issuing them. In government it’s pretty well accepted that the amount of signatures is directly related to the PR machine behind it and not really about the substance, personal letters are a different story. What Lilly Diabetes is doing is an actual action step. IT WILL NOT be for everyone and may also be for a smaller percentage, but it’s a step and when it comes to major companies, I will take any step than no step at all.

The diabetes companies are not alone in the price issues and the costs being so high to patients; and it’s my sincere hope that ALL the players involved can solve the issues themselves because I feel, as is more of the case than not; to have the government involved in trying to fix this will be a disaster—–it usually is.

So I applaud Lilly Diabetes and I know they are not done speaking with people trying to figure all of this out. It’s also my sincere hope that ALL OF THE PLAYERS (including retailers and payors/insurance companies) sit at the same table at some point to actually do something constructive to help those who cannot afford these crucial diabetes needs. Not merely to issue a press release in the first week after a meeting (who cares) but to construct a bridge of new ideas and out-of-the-box thinking with REAL solutions, because diabetes patients deserve at least that.

Agreed, what Lilly Diabetes has begun will not solve all the problems, and maybe only help a small percentage; but actually helping a small percentage quietly and methodically for some sort of actual solutions are so much better than huge “look at what we are doing” campaigns that will accomplish little.

Patients need action steps and Lilly Diabetes, I hope, has just started the snowball to begin rolling down the hill. Time will surely tell. Bravo Lilly Diabetes.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Survey Data on T1D Misdiagnosed (Partial Data)…….Is Now In! Read and Share!

Posted on December 6, 2016 | by tomkarlya | 4 Comments

What I am about to share with you, has been shared with me from our friends from Glu, a T1D exchange Community and T1D Exchange. I’m sharing it because so many have been inquiring as to the data from their extensive survey entitled: Driving patient-centric research: DKA & Misdiagnosis.

Let’s be very clear about these findings…..THEY ARE VERY PRELIMINARY and these findings will be reported in much greater depth and with additional context in publications. This is in progress as we speak. After you read this, you will have a ton of questions, and that is fine—-but please know that nothing more can be released at his time until the information is released in publications; when it will be accompanied by more thorough findings.

The study came about because in 2015 there were a few well-publicized tragedies involving children passing away as a result of type 1 diabetes. In these cases, they were not diagnosed in time. Discussions with KOLs (Key Opinion Leaders) revealed that there is not any large-scale, patient centric data available on the diagnosis experience. Glu and T1D Exchange created a survey to collect this information.

The study was created based on seven tiers of interaction: Current events, Discussion with Key Opinion Leaders, Survey Design and Deployment, Analysis to pinpoint predictors (WHERE THEY ARE RIGHT NOW), disseminate findings, Raise Awareness, Affect change and prevent tragedy.

The survey was developed by Glu and the T1D Exchange Clinic Registry with an IRB approval. 2700+ participants’ response were tallied about their diagnosis experience.
Just some preliminary data from T1D Exchange revealed the following:
>35% of all participants reported that they were not diagnosed until more than one month after they noticed symptoms.
>41% of participants reported DKA at the time of their T1D diagnosis
>20% of participants report being admitted to the ICU at the time of their T1D diagnosis.
>24% of participants report being misdiagnosed with another condition at symptom onset.
>16% of pediatric patients were reported as being misdiagnosed compared to 39% of those diagnosed over the age of 18.
ANALYSIS TO BETTER UNDERSTAND THESE FINDINGS IS ONGOING

There will be much more data coming out on this but since so many have been asking, I wanted to you see just some of the data thus far. What is now evident, at this point, is that now there should be no doubt that when 1 in 6 children and 1 in about every 2.5 adults are being misdiagnosed…….this country has a problem with T1D diagnosis.

When this battle started, it was very difficult. We had nothing but a thought. A thought and the belief that there was a problem coming from the so many I had been in touch with over the years. With the outpouring of support from the diabetes community both during and after the news of Little Reegan and Kisses for Kycie interest grew; and grew quickly.

Now—-it’s a movement. In as much as we all could shout from the mountaintops (and did), and even share the horror stories, the constant response was, “Yes, this is horrible but is there data showing larger proof?” Now, we have indisputable data. When I read the data, to be honest…….I burst out crying. Now we know. To the so many doing so much, and way too many to mention here, thank you. To Anna Floreen, Danielle Gianferante, Dr. Henry Anhalt and all those at Glu and T1D Exchange, thank you for caring and creating this survey. We know how much more work you will be doing and we look forward to the comprehensive final findings.

To all those who lost an angel in this battle, and to whom a solemn pledge was made not to not stop until we have changed this paradigm——I share this data but know that it is just a weapon to help us in this ongoing battle. A big weapon. We will not stop.
Onward.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

*preliminary data collected from over 2,700 individuals who participated in a 2016 T1D Exchange survey about their diagnosis experience.

Our Diabetes Journey…….Energy Better Spent…..Why Argue????

Posted on December 5, 2016 | by tomkarlya | 3 Comments

At a recent event, I was engaged in a discussion with a couple who are ‘fairly new’ on this journey. After a conversation on a myriad of topics the gentleman said to me, “Can I ask you something personal?” Never one to run from such a question I answered, ‘Sure”.

“How do you stay at it? We are so new at this and I am so confused. Not by choices but by the so many who seem to know, telling me how, and what, I should do. That all pharma is bad and greedy; that I should manage a child a certain way; that a cure is a pipe-dream…..how do you stay at it and who do you believe?”

How much and how often is that question place in front of our face?

I come from a political background. I learned something a long time ago that has served me well both in my political discussions and on our diabetes journey. The first thing I do is go into any discussion, like I know nothing. That way I have opened the door to learn. Many people get into discussions, to tell you their point of view and to justify the way they believe. I don’t, and can’t, engage in that anymore.

I’m also a realist (thanks to mom). In the last election, it was an absolute certainty that there would be a new President. So I braced myself that a new one would be in place. My candidate not winning, or winning, only mattered to my personal belief, after that there was only one absolute certainty; the person winning is my President. Me wanting or not wanting does not matter because for the next four years that person is sitting in the oval office. I’m a realist. Happy or unhappy becomes short-lived and the process moves on.

My energy is better spent on things I might have a chance of changing. In my 58 years I have seen many things happen, I have seen many disasters (natural and man-originated); I have seen promises broken and kept; I have seen successes and failures; I’ve seen my share of a great deal…….and no matter what, on the next day the sun not only shined…….it shined brightly.

Diabetes, already unhappy with, I had to get to the point in my life that dealing with diabetes would become where happy or unhappy did not impact the end, I needed to accept what it is, and move on.

What I never gave much attention to is the wave of idle chatter. When I hear about anything in the diabetes world, that I do not know about, I find out. I don’t find out for someone else, I find out for my kids. I find out for me. I constantly tout that education is the equalizer in diabetes. And THAT is the truth. The more you know, the less trivial ‘arguments’ become important because you already know what works best.

I don’t get into discussions about pump or MDI (multiple daily injections); waking up to test or not; to give this food over that food; there will never be a cure or there will be; when I heard something, I investigated. But THE ONLY THING THAT MATTERS is what I know to be true for us. Nothing else matters and probably should not matter to you either.

If people ask my opinion, if I have one and if asked, I will give it. As my-brother-in-arms Jeff Hitchcock states constantly, ‘look at the data”. I don’t listen to another’s opinion in data, I look it up for myself because I’m not in this battle for any other reason and I have too much work to do than to try to convince people about anything.

Share to engage in a discussion. Engage in a discussion to learn. Go investigate to learn. At the end of the day it was/is up to Jill and I to decide the path to take….and we have; and we still do to this day. Some people share some of our path, and others have more differences than similarities in how we handle our diabetes journey. And that is just fine.

In anything I have dealt with, it comes down to this; I work as hard as I can for something I believe in, if it comes out in our favor — wonderful; if not, I’m assured of one un-argumentative fact……that sun will surely shine, and shine brightly tomorrow.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Medical Advice is NOT a One Size Fits All……Be Careful Getting AND Giving!

Posted on December 2, 2016 | by tomkarlya | 1 Comment

The post on social media goes out; “My child is going through (fill in the blank with a medical ‘occurrence’.)_____________________. I have tried this (again fill in the blank) ____________________; that (again)_________________________; and this again __________________________________ to no avail, I’m very worried, what should I do.

And the list begins on advice.

I’m the first person to state how powerful and needed it is to have support in this journey. We all would be lost without it. But to be honest, I would feel much more comfortable if on such posts, they began with……………..”I contacted my medical professional about (all the above) and am waiting for a call back, knowing diabetes is different in each and every person, anyone else go through this, and what did you experience; just while I am waiting for a call back.”

And when it comes to the responses, there are times when I read something, I am looking for; “What did your medical expert say?” and/or “If it were me, I would go to the ER and have a professional medical opinion on next steps immediately.” And I do not find it. It is at this point I think, is it a game of russian roulette. Only a matter of time before the wrong advice is taken.

Why?

Because something that worked for my child, does not mean your child should, or could, do the same thing. And quite honestly, it could be dangerous. I understand that we may think it is a “given” that people know to take everything with a ‘grain of salt’ as it were……..but I’m not so sure. I also get the idea that we have heard horror stories about what did, and did not, happen at a medical professional’s office. I get it. I REALLY GET IT. But they ARE THE MEDICAL PROFESSIONALS FOR A REASON When reading something and wanting to help, please consider to begin your comments with, “What did your medical professional say?”

We can always weigh a course of suggested action with what others do; but it just make sense for the professional to be involved. To think that medical advice is given and taken without consultation is one of the scariest things I come across. Who is doing the ask? It very well might be that they are brand new into this journey and may not know yet how much one thing needs to be weighed with another.

Assisting others in need is such a GREAT THING and in so many cases wonderful suggestions are made, but I just think it makes sense to start some conversations with, “What did your medical professional say……?” And if not contacted yet, state, “Let’s involve them now……while you are speaking with others….and you and they can create the best course to follow……..”

Also understanding that some questions are not in this category and I’m not referring to those but, rather, addressing the issues when clearly medical intervention is needed and/or should be sought.

Doesn’t that make sense? I seek your input.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.