Whoomp.

photo

Look! It’s the least diabetic diabetic person.

Today Joslin for re-do TrialNet OGTT. Last time BG >200 2h. pp.  (Glucose syrup drink count as prandial?) Today after OGTT, Bigfoot TrialNet test subject no more. Instead, diagnosed Type 1 Diabetes. Whaaat?

Part is not surprise: failed OGTT last time + autoantibodies + no HLA. But part big surprise: thought August 1st OGTT must be fluke; A1c so low. (4.7!) Must be so specific coincidence TrialNet catch blood right at very moment blood turning into syrup? Seems impossible. But true. 8/1 OGTT #s same same 8/22 OGTT #s.

ENDOCRINOLOGIST: (ever so casual, unapologetic) Well, you are now diagnosed with type one diabetes, so you’re no longer eligible to participate in the TrialNet study

BIGFOOT: SEEEEriously?

STUDY COORDINATOR: Excuse me, I just want to make sure you know you will be reimbursed 24 cents per mile for your drive up, and I can validate your parking

ENDO: We see adults present this way all of the time. It could be next week, or it could be five years before you need insulin

BFOOT: Five years, or maybe thirty years?

ENDO: Probably more like within a few years

BFOOT: But maybe not—like maybe I’ll die from something else first?

ENDO: Probably not, probably within a few years, based on your test results, but everyone is different

BFOOT: So what do I do?

ENDO: Nothing. I mean, you should eat a normal, healthy diet of course. Some people in your situation, I’d say mostly men, because they are afraid to take insulin, go on extreme carb-restricted diets. But if you need insulin, you need insulin. Don’t drive yourself crazy. If you need insulin, just say, “The time has come for me to use insulin.” And definitely get hooked up with an endocrinologist. And check your blood sugar periodically

BF: Should I just use my son’s glucose meter, or do I need my own?

ENDO: Just use your son’s**, and don’t check too often

BF: What endocrinologist would I see? I only know pediatric endocrinologists

ENDO: You could see me. Wait. Where do you live?

BF: Rhode Island

ENDO: I know a thyroid guy in Rhode Island; he will now someone, and I’ll get his name to you

BF: I think I’d rather come here. I have a friend–my age–who was just diagnosed, and his endo in Rhode Island told him he had Type 2, and he had to tell his endocrinologist about autoantibody testing, and the endo told him he was too old to have Type 1

ENDO: (shakes head with what-an-idiot implied)

BF: I know, right? So now my friend comes up here to see an endocrinologist, and so I think I’d rather do that too, because I’d rather just see someone who doesn’t need me to explain about my kind of people

ENDO: You can come see me when your son comes back for TrialNet next time. I only see patients in the afternoons, and TrialNet is always in the morning, but we will set it up so you can see me in the mornings while your son is here

STUDY COORDINATOR: It will be $28.46 in mileage, plus $50 for coming today

ENDO: Can you schedule that for her?

STUDY COORDINATOR: Sure. I’ll contact you later today

BF: Thank you, that would be very handy

Now Bigfoot home. Realize Endo/Bigfoot never introduce selves. No idea this man’s name. Where social skills go? Assume Doctor know Bigfoot name from paperwork, but now see paperwork name = “KAT” + secret TrialNet code number, for confidentiality/insurance company not kick Bigfoot curb.

Anyway, whatever name is, nice personality: humorless/kind, very science-y, also skinny-cute w. lush eyelashes, shoes possibly Camper.

Before diagnosis talk, Mystery Endo review Jack’s labs. Some Ab results still missing; TrialNet not reveal; Study Coordinator postulate maybe they are re-testing because the results were right on the cusp. Endo explain Jack positive for ZNT8 (<—include edifying link, but unable follow 80% of information therein), and pretty sure said this shows his disease has progressed from being merely outside of the cells to being within the cells. Bigfoot ask: So, is that like the worst one to have?

ENDO: Not worst

BF: Oh, right, for science you have to be non-judgmental, like there’s no better or worse, there’s just data? But it’s kind of the worst, like it shows…he has diabetes? I mean you said, “his disease”

ENDO: Right. His disease has progressed beyond the initial stage, but you can’t know if he will need insulin before he is an adult. He could present very much like you, because so far, at least looking at last year’s result, he did not have the autoantibodies for insulin, and the younger kids almost always have that. And his OGTT was indeterminate, meaning he was not stone cold normal, but also not yet showing clinically diagnosable diabetes like you

BF: So maybe he will need insulin when he’s in his forties?

ENDO: Well, it could be he will not need it until he is an adult

BF: So, I know you can’t predict, but when you’ve seen other kids with results like Jack’s, what’s the result?

ENDO: Usually within five years, but everyone is different

BF: And is it possible that he would never have it?

ENDO: (jist was something vague hinting that he sort of already kind of has it)

BF: Or maybe he won’t have it until he’s in his twenties or thirties? (and wears adorable Babar shirts and has a closet full of fantastic shoes? <—implied)

ENDO: That could be

BF: But you think probably sooner?

ENDO: Most likely. He, like you, does not have the HLA protective gene, which makes it even more likely, but again, we do not know when he will present

BF: But since he’ll be coming for TrialNet every six months, he doesn’t need to go to see his brother’s endocrinologist?

ENDO: Right. They would just check his A1c, maybe his glucose tolerance. When he comes here, we will check for everything.

So, treatment plan until January:

  • test occasionally (Jack too)
  • avoid cherry or lemon glucose syrups as a breakfast (this step recommended for all humanity)
  • pay an extra whisper of attention to Jack instead of always assuming he’s fine
  • figure out the doctor’s name (Lightbulb! Ask Study Coordinator)
  • think of things to do (purchase huge life insurance policy?) before I get a black mark on my permanent record

One other interesting part is for one Ab test, doctor describe—eyes dance with delight—sprinkle (dribble? spread?) test subject blood on sliced cadaver pancreas—picture like mayonnaise on liverwurst, but human.

Other interesting part is so many capitalization problems. Just master mg/dL. Barely aware A1c not A1C. Now also: Type 1 diabetes or Type 1 Diabetes or type 1 diabetes? “Ab” = antibody or autoantibody? Need style guide.

(** Doesn’t that seem kind of bootleg?)

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59 responses to “Whoomp.

  1. Oh, Katy, I’m sorry to hear that, but as far as diagnoses go, you’re in the running for least dramatic of all time. I guess welcome to the pre-party? And maybe get the Tallygear just in case they discontinue that style (but will there still be anything useful to put in it in 5 years?). Thank you for the slightly-hidden compliments, and it’s true I owned none of those things until I needed exogenous insulin. Finally, given the typo-prone, grammatically-lax, homophone-agnostic, apostrophe-pluralizing nature of many online writings, we’ll forgive you the odd miscapitalization.

    Like

  2. mollyjade

    Well balls to that. I can’t imagine the waiting will be easy.

    Like

  3. Joyce

    So sorry. That’s a lot to take in, both for you and Jack. One day at a time…

    Like

  4. So sorry to hear your news … but it does seem like you are in good hands!

    I hope you are going to do some good retail therapy like you promised

    Like

  5. Oh, girl. I could literally feel the breath go out of you at hearing this news. Kick in the chest, and all that. I felt that way when they told me I had type 1 at age 21. Just….unbelievable. On the most positive note ever: YOU are a ROCK STAR, and of all the people to get T1 later in life, you are probably one of the most prepared to deal with it. I heart-ed you before this, and now I heart you even more.

    Like

  6. Holy crap. You OK? I just hope IF (I still say IF because a momma has to hope) our seconds get it, it will be far enough out that managing diabetes will be SO much easier. The research nurse told me the A1c (thanks for the tip on the capitalization) is the last thing to go. First you lose your 2-hour postprandial, then your fasting starts to creep up and then that’s when you see your A1c go up. So I usually do random fasting checks on my little.

    You will rock Type 1 Diabetes. You will have the coolest gear & get to eat delicious Gluco-lift tabs. Thanks for sharing your journey.

    Like

    • Katy

      McMomma! That’s some good information! I do see that order of things happening ever so slowly to me; just in the last three weeks I’ve seen my fasting go from just under 100 to always over 100 and usually in the 100-teens. Creep, creep. Thank you for telling me what your nurse said. I had no idea about that.

      Like

  7. Robin

    Nothing to say – – because it all seems inappropriate. Sorry? I can’t believe it?

    You’ll be in good hands. And to lighten the mood…..You’ll need your own Dream Babysitter.
    You’re my favorite…..

    Like

  8. I shed a random tear for you. I have only been reading your blog a few weeks but love your writing and the way you share your life. So major cyber hugs from me. When the time comes, you’ve got this. While a dx of t1 is never a blessing, at least you know now and will likely never get very sick before realizing it’s your pancreas. I don’t know what B’s dx was like, but for us my 10 y/o spent 4 days in the hospital, 3 in the PICU with mild DKA. And in a few years artificial pancreas will hopefully be on the market, or shortly thereafter. I’m not going to say it will be “easier” having t1 yourself, or if Jack starts being symptomatic and needs insulin, but you have all of us for support. Also, I tested negative on Trialnet, but I still do random fingersticks every couple of weeks. I am at risk for T2 though, so very different.

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    • Katy

      B’s dx was much more dramatic. This feels so controlled. We probably would not have had a clue for eons if we were not in TrialNet, which I guess some people would see as a reason to avoid it. I think I like knowing.

      Like

  9. I want to know where in medical school doctor’s were taught (and I mock because I am sure they were not taught this) that 5 years has any meaning whatsoever for anything. Before I was diagnosed with MS, a really wonderful (insert sarcastic tone here) neurologist told me, “You either have ALS or MS or something else. Give it 5 years. If you’re symptoms are worse and you’re not dead, come back. If you’re fine, you’re fine.” I kid you not. ALS is almost always fatal within 5 years without immediate intervention. It’s not like cells do magically different things in the course of 5 years. Some diseases progress fast, some slow, some people are weirdos in their bodies (picture me pointing to self here). This doctor may be guarded because he is not functioning in the capacity of YOUR doctor. There is supposed to be a good endo at Hawthorn Medical in Dartmouth where I go for my primary, gyno, and GI. I will see if I can find out the name. Unless this dude seems expert-ish enough to keep you traveling.

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    • Katy

      this doctor was in the weird position of interacting with me as a study participant, but then having to tell me i was kicked out of the study and needed to see an endo. i liked that he didn’t just say, “you need to see an endocrinologist and they will explain the situation to you.” he was mellow and frank, but not cold. or if he was cold, it was nice, because it felt like not a big dramatic deal. ALS/MS is a big ferning deal. let’s talk on the phone about it!

      Like

  10. And I have to add, I’m so sorry. This really, really sucks. Uncertainty. Testing. Waiting. All yuck. Here, if you need to rant.

    Like

  11. Fuuuucckkkk. I mean, fuck.

    Like

  12. Soooo crazy! There’s no bright side, but if there was a bright side it’s that you will be prepared. And all the cool d-girls are carrying super cute Vera Bradley bags for their supplies.

    (Not making light of it, but of course I’m here for you.)

    And yes, go buy a big term life insurance policy while you can get it cheap and don’t say a word of it to the agent. Same for your other son. I wish I had gotten them for our kids (ones that can transfer to them when they are of age) when they were babies.

    Like

  13. Maureen

    We are raising a great hue and cry for you a few doors down! Can you hear us?

    Like

  14. This news is totally not cool, and I’m so sorry you and your family are going through this. The vague answers and seemingly loose treatment guidelines must be frustrating as all hell, given what you already know about T1D.

    You, on the other hand, are totally cool, and by association, that makes us cool too. It’s like an after-school special where, by the end, the cool kids aren’t the ones you expected them to be.

    There’s not a lot of emotion in this post; maybe that’s just the way you are, or maybe you’re just keeping your writing in check. Either way, we’re all here for you, in whatever way you need us.

    Oh yeah, one more thing: You Can Do This.

    Like

    • Katy

      we don’t even feel like we’re going through anything. it’s just kind of meh. i think part is that i’m so convinced my D-son will be fine, that by association we will be fine too? or maybe i will feel emotional another day. thank you for your kind support and for saying i’m in the club!

      Like

  15. Mary M

    I’m saying what Zachary said. I’m so sorry!

    Like

  16. Sara

    Bad news: Diabetes.

    Good news: You already know about all of us.

    Grammar news: Type 1 diabetes is capitalized at the beginning of a sentence. If you are describing type 1 diabetes in the middle of a sentence, you would not capitalize it. (See what I did there?)

    Like

  17. Jennifer

    Gross. That stinks. So, I guess, welcome to the coolest club that nobody actually wants to be part of…?

    Like

  18. Well, shit. Not sure what else to say.

    I’m going to guess it probably hasn’t really sunk in yet. We’re all here for you. For the long haul. Sending extra love your way.

    Like

  19. 😦

    I echo what Jennifer says.

    Big hugs to you and a big I’m sorry. There aren’t many words for such an occasion.

    Please reach out if you ever need anything at all.

    Also, I’m all self conscious about my d-lingo grammar now. 😉

    Like

  20. I feel like this is a fictional post or a creative writing exercise you’re going to have your writing club critique. I truly can’t believe it.

    Like

  21. Holy. Crap. I was hoping that protective gene would save the day. I’m guessing you are more worried about Jack than yourself. And I assume he’s old enough to understand the possibilities. But ugh. How do you guys discuss it with him? P.s. I think you deserve an adult beverage of some kind tonight.

    Like

  22. And bolusme is Eileen, btw. I have commented on your blog before. I humbly started a blog today, which is why my name is showing up like that. I was actually thinking “I’m going to tell Bigfoot” (as if you know me) and then I saw your post today and it looked like you had a teeny bit going on.

    Like

  23. Kim

    What the actual fuck.

    (That word, just for you.)

    (I’m so sorry. This sucks incredibly.)

    Like

  24. shit gawd. fuckin’ sux.

    Like

  25. Horrible news. I’m so sorry, Katy. As always, we’ve got your back.

    Like

  26. For once, one of your blog posts has left me speechless.

    I.am.sorry. 😦

    Like

  27. Well Shit (or Fuck, since you enjoy that one so much!)

    I am so sorry to hear your news and after reading all about this study feel as though oh so many years ago (BEFORE college) when some doctor told me, “You might be pre-diabetic, try to eat better” because of a slightly elevated fasting glucose- someone should have tested me for something? Then perhaps I could have avoided the hospital stay, and sickness that came with my T1 dx.

    You are a champion Katy. Just keep your humor and keep moving forward, it’s not a new battle- just a new player (or possibly two new players I suppose). If I can do this, you can DEFINITELY do it!

    I send hugs and Judah sends wags and a wet nose! Oh the adventure never ends!

    Like

  28. I can’t believe it.
    You have diabetes… later.

    Were you in the study because you kind of thought you would get it?

    Like

    • Katy

      anyone who has a child or sibling with T1 can be in the study. i was just in it to be progressive/science-y, and to keep jack company. and i encouraged jack to be in it so i could find out how unlikely he would be to ever have it.

      Like

  29. Holy moly. I had to read it a few times to let it sink in. You’re just so calm about it it seems. I mean, I guess a good side is that you already know things to look for? Wow. I’m just.. in total shock I guess. And you already know we all have your back and are here for ya. Hugs.

    Like

  30. Pam

    Bonus is you’ve already learned more than I’ll probably ever understand about the genetic and autoimmune precursors to type 1 diabetes.
    But what a long and weird wait the next 5 years (give or take 5 years) will be. 😦

    Like

  31. I’m sorry. It sucks, it must feel rather like The Twilight Zone. It sounds like you’ve got a good Endo on your side(starting off, right out of the gate) and he’ll monitor things as they should be. Sending your islets lots of good keep working thoughts.

    Like

  32. Like Sarah said, I have to keep coming back and re-reading this. I can’t imagine the range of emotions you’re probably going through. You are the coolest person we could add to our ranks, Katy. So…I guess…welcome? Did anyone deliver your Hogwarts letter yet?

    Like

    • Katy

      I only feel—am I in denial, or is it just not that big of a deal?—that I was diagnosed on a technicality, and am diabetic only under weird, laboratory-controlled circumstances. And just that it will be…years? Before I have to do anything with insulin, and even when I need insulin, it will probably be some really easy amount that requires hardly any thought…it seems like having to carry a marble instead of wearing a ball and chain.

      I’m eagerly seeking blogs of people with this kind of D—any recommendations?

      Like

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  34. Anonymous

    So sorry about your diagnosis and Jack’s possible diagnosis. You are right on the money about getting that life insurance policy before you are officially diagnosed. And definitely get one for Jack, as well. If he is diagnosed, it will be prohibitively expensive or very difficult to get one. I wish I had gotten life insurance for our DD as a young child before she was diagnosed. I never understood why life insurance for a child was necessary; sadly, now I know. It seems like it is too much for one family to have to bear but you are handling this with courage, grace and your trademark humour.

    Like

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