Filling in the gaps – Learning my diagnosis

I’ve said for quite awhile that I never really knew the date of my diagnosis, nor did I know the details.  About a month ago, I decided to try and find out.  When this thick envelope arrived in my mailbox last week, I knew that my hospital records-request had been fulfilled, and that some of the answers would be inside.

(If you click the images, you should be able to see them a bit larger.  Below the images, I’ve tried my best to transcribe the hieroglyphics into typed English).

Glad there’s no date on the “Expired” line!

Age: 7; Admitted: 5-21-81 (8:18 pm); Discharged: 5-31-81; Expired: (blank)

CC & PI: Chicken Pox and increased frequency of urination (1 wk). {illegible} your was (for 2 days) in relative good health until 10 day. Pediatrician had diagnosed strept[??] sore throat w/high fever.  Since the onset of sore throat, patient developed {illegible}. Patient was treated with erythromycin [an antibiotic].  during last 5 days, patient became markedly thirsty with increased urination every 1/2 hour. 2 days PTA, patient developed rashes in the groin-chest, and then over extremities.  Admitted for evaluation of hyperglycemia and rash.

So, I now know my diabetes-diagnosis date (assuming it came the same day): May 21, 1981.  For what it’s worth, my “diaversary” turns out to be two days (and 23 years) before my wedding anniversary.  Who knew?

I was given two diagnoses: one for chicken-pox, and one for Diabetes Mellitus.  I knew they didn’t use the terms “Type 1″ and “Type 2″ back then, but I’m surprised to not see a reference to “Juvenile Diabetes” as a diagnosis (the term was used somewhere else under the heading “Impression”, which I believe was from an ER doc.  It’s where blood tests were ordered, STAT!, as well as a consultation with my pediatric endo-to-be.)

Family History: Mother & maternal grandfather: Hypoglycemia; paternal great-grandmother. DM. [diabetes mellitus]

I knew that I’d heard that I had a great-grandparent with diabetes, but didn’t know much about it.  I don’t know (and this doesn’t help explain) whether it was Type 1 or Type 2, but given medical technology at the time, I’m inclined to believe it was Type 2.  One of my paternal great-grandmothers was still alive when I was very young (but not when I was diagnosed), but I don’t know if this is the one or not.  I’d sure like to find out.

Initial blood sugar was 564 [?] mg/dl.   Regular insulin coverage was {illegible} given with 4 hour blood sugar determination.  Patient was in isolation room for chicken pox. Patient became {illegible} since 3rd hospital day. Pediatric endocrinology consultation was also obtained. Daily insulin requirement ranged is NPH [??].  {illegible} insulin – NPH 19 units  Regular insulin 9 units.  Chickenpox resolved and healed with crusts. Patient transferred to Pediatric ward on the 9th hospital day. Diabetic {illegible} and diet teaching was given to patient’s parents. Insulin coverage at discharge was NPH 19 units and Regular insulin 9 units.  Patient was satisfactory – insulin coverage by blood sugar and Dextrostix tests. Chicken pox was completely healed.

I actually can’t tell if that says my blood sugar was 564 or 504, but I’ll go with the more dramatic number (to be honest, even 564 doesn’t seem that high for diagnosis!  Maybe it’s the measurement techniques they used, or maybe it was caught early on.  I’m not really sure).  And I swear that looks like mg/%, but that just doesn’t make sense to me.  My insulin requirements were based on my weight and some magical multiplier, and probably tweaked over the 10-day stay.

That ten days in the hospital sure sounds like a lot, compared to stories I hear of modern-day diagnoses!  Maybe the chicken pox had something to do with it.  I do remember being there for a long time, and playing with the buttons on the hospital bed that made the head go up-and-down, and the feet go up-and-down until I broke the bed, and eventually being transferred to pediatrics where I shared a room with a kid who was involved in a lawnmower accident, but I really have no perception of the time.

By the way, elsewhere in the report it does state that “ketones were present in blood and urine” but without any numeric values.

Those dots could have represented the chicken pox, but there aren’t enough

While I was at the hospital they checked my reflexes.  This probably has nothing to do with anything, but I kind of like the drawing.

Just four glucose tests a day!

Finally, on discharge they stated that I had recovered from chicken pox, but sadly the diabetes mellitus was still there.  I was to take one injection of Regular and NPH insulin a day.  I’m confused by the last item listed, because I remember starting out with just urine glucose tests at home (I thought), and that was with Clinitest, and later Diastix (or Keto-diastix which also checked for ketones).  When I did begin blood tests, it was with Chemstrips.  Regardless, to this day, I’m astounded that the treatment was so simple!  (Though, as we later learned, ineffective).  There was also a very strict diet which is not outlined here.

The hospital sent me lots of other papers too: directions from the pediatric endocrinologist to the hospital staff, an entire pediatric history report (which I can barely read), and even the medical insurance billing records!  I’m sure I’ll spend time over the next few weeks studying and trying to decode the handwriting.  With the awful penmanship and carbon-paper forms used in the early-80s, it’s a wonder they got anything right!

After reading all of this, I wondered if I should feel any emotion.  Quite honestly, I didn’t feel any emotion about it whatsoever, except to learn that I was diagnosed a month later than I thought, so I’ve been giving myself a little too much credit all along.  I guess I felt some guilt for not just coming out and asking my parents, but I just wanted to get the non-editorialized facts, without any sugar-coating (pun not intended) or “misremembered” (hat tip to Roger Clemens) facts.

But 31 years later, and I’m still here.  When May 21st comes around in 2013, I hope one of you will please remind me of the significance of the day.  Because I’m sure I’ll forget.

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Posted on August 23, 2012, in Diabetes, Personal and tagged , , . Bookmark the permalink. 10 Comments.

  1. How interesting! I lucked out in that my mom
    Was a nurse so she recognized my symptoms
    And navigated me through the dx. That was 1990, and chemstrips were just on their way out to the first Lifescan meter :)

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  2. Hi Scott,

    You’ve motivated me to try and track down my records now! I know my diagnosis date (Oct. 26, 1995), but I don’t have any of the paperwork and would find it interesting to read. We’ll see if I can track it down!

    Also, now that you have documented proof of your diagnosis date, you can apply for a 25 year certificate from Joslin. http://www.joslin.org/medalist/background.html It may seem cheesy, but I like the sentiment.

    Take care,

    Katie

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    • Well, I just applied for the 25-year medal from Lilly, I’m gonna hold out for 50 before submitting the Joslin application.

      I was really surprised that I got this, considering the runaround I got on the phone, and then the uncertainty that they could find this in the archives from so long ago (especially since I gave them no date and the wrong month!). For you, if you can’t make any progress with the hospital, I’d then suggest going to your primary doctor (pediatrician, if applicable) and then to your insurance company. Good luck in your search! It certainly was exciting to get the package.

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  3. I just tracked down mine as well! I wasn’t sure how I was suppose to feel either- it doesn’t change the last 24 years. I did have to sit down to read through it though :)

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  4. Awesome! I think it’s cool to have all of those records. Mine took a long time to find too, but I’m glad I did.

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