Lost in Transition

( © Lynda Covello, 2015. All rights reserved. )

First posted November 14, 2013 on www.t1thinktank.com and www.patientcommando.com

I was diagnosed with T1D at the age of 14 and a half, just before I was about to start high school in the fall of 1973. I spent August 29th in a ketoacidotic coma and most of September in hospital recovering and learning how to give myself needles. There were no doctors in Thunder Bay at that time who had the necessary expertise to help me manage my condition, and the nurses, in my experience, were often dangerously misinformed.  It was rough going, and the attitude was:  try this and see, try that and see. Bring her to Emerg if she loses consciousness.

There was no glucose self-monitoring, and the only way to find out what my BG was, was to go to the hospital and get it tested.  I did test my urine at home, which told me what my BG was several hours before. So it was kinda like crawling through a dark tunnel trying to figure out where I was going by the feel of the surfaces around me, never really knowing where I was or what was next. I was dangerously thin and the advice was to fatten me up by feeding me about 3500 calories a day, accompanied by massive doses of insulin. It was physically impossible for me to keep all that food down and I spent my days feeling nauseously full, dizzy, drowsy and weak, fluctuating between very high and very low blood sugar levels.  Then my pediatrician sent me back to school.

That didn’t work out too well. I was not well enough to function in school and the school administrators and teachers were terrified of me – or rather, of what might happen to me on their watch.  I was effectively grounded: not allowed to participate in any athletic activities, after-school clubs or field trips.  The attending GP, who was clearly out of his depth, advised my parents that the best thing to do was to send me to school, see if I went comatose, and if I did, bring me to Emerg, where they could check my blood sugar.  That was his strategy for trying to regulate what he called my ‘extremely  brittle’ diabetes.

My mother said no. My mother is my secret weapon, and her determination, intelligence and tenacity are probably the reason I’m still alive. She was trained as a nurse, but had retired about 9 years earlier when her 3rd child was born. Now, she had a 4 year-old, a 9 year-old, a 12 year-old, as well as 14-year-old me and my brand new diabetes.  She decided to keep me home from school until we got this thing under better control and I gained some weight.  Her methods were unorthodox and frowned upon by the Thunder Bay medical community, but I was not hospitalized again from that time while I was living at home. She fed me the same simple, fresh ingredients based, balanced meals cooked from scratch as we had always eaten.   I gained ten pounds and kept it on.

My days were a balance of rest, light exercise and studying to keep up with the work I was missing in school. My teachers came to the house to tutor me and were much more comfortable there than they had been with me in their classrooms. I read voraciously, which I had always done anyway, and leaped ahead in school.

I did miss out on all the social aspects of the first months of high school, though, which was brought home to me rather starkly when I was out on the driveway hitting a tennis ball against the wall of the house one afternoon and a former classmate from Grade 8 saw me and came over. He stared at me in a very strange way for about 45 seconds, and then he said:

‘Lynda? Is that you? We thought you died.’

And he really meant it.  I got the same reaction from a number of people I knew when I finally did properly start high school about a month later:  I think it was Novemberish.  I was up to date academically, even a little ahead, but woefully behind socially.  I was isolated and strange, and no one really trusted me not to die on the spot.  I was excluded from clubs and cliques, and social interaction and never really caught up. No one understood my reality, and no one wanted to be friends with me. As far as I was aware, I was the only 14-year-old with diabetes in all of Thunder Bay, perhaps all of Canada.

Sometime that month, my Aunt June, also a nurse, went to a lecture on juvenile diabetes given by an endocrinologist visiting from Toronto Sick Children’s Hospital. My mother, not considered a practicing nurse (although she had a 24/7 patient with a serious medical condition) was not allowed to go. Neither was I, merely the person trying to live with the disease, considered worthy of attending such an event.  Anyway, my aunt came out of that lecture hall and directly over to our house with the name and contact information of the endo.  My mother called our GP the next morning and said that we were going to see this specialist, with or without a referral from him.  He balked a little bit at her impertinence — nurses did not talk to doctors this way in 1973 – but in the end gave us the referral.

We went to Toronto in mid-January of 1974, my mother, father, brother and I. They checked in to the Park Plaza Hotel and I checked into Sick Kids Hospital.  While my dad and brother went to museums and art galleries, my mother and I learned the basics of living with T1D: weighing and measuring food portions, calculating insulin dosage to match exercise and food intake, learning that my ‘mood swings’ were related to blood sugar highs and lows and not just a feature of my personality or my adolescence. And of course, hearing (and seeing graphic photos of) the awful prospects of the life ahead of me: failed kidneys, heart disease, blindness, amputations and inability to have children, death within 30 or 40 years.

After a week, my father and brother went back to Thunder Bay. After another week, my mother refused to leave me behind at the hospital and took me back home with her. Oh, and did I mention that I had my 15th birthday and got my very first period during that stay at Sick Kids?  That was fun, not to mention the ongoing and acute embarrassment of being the subject of roving bands of doctors, medical students and god knows who else coming into my room, drawing the curtain around my bed, stripping me of my flimsy hospital gown and talking about me in the third person while discussing my illness.  The trauma is still with me, and I will do just about anything to avoid being admitted to a hospital.  My throat starts to close up and I fight to breathe anytime I’m in one, even as a visitor.

Anyway, in spite of all this, I worshipped the endo, because he seemed to understand the disease and he gave mom and I ACTIONABLE and PRACTICAL advice about how to deal with it.  We went home much better equipped than when we had arrived.  I never came back to Sick Kids for another appointment, but we managed to keep me out of hospital in Thunder Bay for the next 4 years or so. Then it was time to go to university.

I don’t think I had ever been more excited in my life than when I moved to Toronto to go to University of Toronto in the fall of 1978.  I had been living with diabetes for 5 years, and I had learned a lot about how to manage it. I had also learned how to hide it from others so that I didn’t have to deal with their fear and misunderstanding.  By the time people found out I had T1D, they were usually very surprised, because I seemed so ‘normal’. But I was living with a big secret, one that I couldn’t ignore, which affected my life on a minute to minute basis.

I was excited about being in Toronto where I could see my endo, but I soon found out that I was too old, at 19, for the pediatric system or Sick Kids Hospital, where he was based.  He gave me a referral to another endo who saw adults.  I MEANT to make an appointment to see her, I really did, but I just didn’t get around to it.

This was the first time I had ever lived away from home, and I knew that my parents were nervous, but also that they trusted me to figure things out. I was nervous, too, but determined to manage.  There was a lot to manage.  I had no control over the preparation, content or timing of my food. I was in residence and on a meal plan.  My inquiries as to what EXACTLY was in the food were met with blank stares and silence by the cafeteria staff.  I should have gone over their heads, but that would mean disclosing my T1D and I was afraid I would be kicked out of residence.  So I didn’t eat very much from the cafeteria, mostly fresh fruit, cheese, bread and crackers, which I knew how to calculate my insulin for.  The casseroles, deserts and ‘mystery meals’ were just too dangerous.  I bought peanut butter, crackers, and apples that I kept in my room, and that is basically what I ate from September to December. I lost too much weight again, and that complicated matters more.  I gained most of it back on my parents’ good cooking during the three weeks I was home over the holidays.

After Christmas, I went back to my diet of PB, apples and crackers, supplemented once a week by a trip to Frank Vetere’s, an Italian restaurant that had all-you-could-eat pasta on Wednesday nights for about $6. By the end of January, I was so fucked up that I passed out in the washroom on our residence floor after spending the whole night throwing up.  I was back in ketoacidosis. Someone called an ambulance and they took me to the hospital. I met my new endo in Emergency when I guess somebody noticed my medic-alert bracelet. I don’t know, I’m not sure how she found out I was there, but she knew who I was and that I was supposed to have made an appointment to see her. It was around my 20th birthday.

Everything changed after that. My new endo took me on and taught me how to take care of myself. She sent me to the diabetes education centre, which is where I spent my reading week that year, and kept encouraging and supporting me, and most importantly, mentoring me and TEACHING me how to manage my condition. She didn’t judge me based on my blood sugar results and always treated me like a whole person with a whole life, not just a patient with a chronic illness. The attitude was: this is complex and difficult, but it is your reality and you can deal with it. It should not stop you from doing anything that you want to do with your life. I will help.

The thing that strikes me as I write this is that it didn’t need to be this way. I didn’t need to get lost in transition between pediatric and adult care. The fact that my mother and I had been managing basically on our own since my diagnosis, with key help from our one visit to Toronto to see an endo did not prepare me to fly solo. Too much was changing in my life right then for me to be able to establish a new relationship with a new healthcare provider.  I needed support, but I was afraid that asking for it would mean a whole new set of judgmental, controlling HCPs who blamed me for my disease and my inability to control it perfectly.  The fact that I had a fantastic new HCP team just waiting to help me was not adequately communicated to me, and I felt isolated and helpless.

In meeting and discussion with other T1D patients, I hear a lot of people talk about how supportive the pediatric system is for T1D kids and their families. There seems to be a lot of investment and resources there, but nothing for adults living with T1D.  Once you turn 18, you’re on your own. This has to change. The American Diabetes Association, in a Position Statement published in November of 2011, says:

 “The transition from pediatric to adult diabetes care represents a very high-risk period for a person with diabetes, a perfect storm during which interruption of care is likely for multiple reasons.”

 No kidding.

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Lynda

Lynda Covello is an impatient patient, but she is also many other things.

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