BLOG: My patients, my heroes – Werner’s warm home
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“My patients, my heroes” is a special series in my blog that I dedicate to my patients, first launched in May 2020.
As I stated in that post, “Beating the Odds, I believe that every patient whom I have encountered over the years has a special story that goes beyond the boundaries of the regular doctor-patient clinic visit; beyond the boundaries of EMR clicks, templates, macros and box-checking.
This post is about Werner.
I saw Werner (Figure) last February in the clinic as a new patient for evaluation of diabetes and thyroid. He was accompanied by his guardian, Tina. She was described in the medical records as Werner’s caregiver.
But what is heart-warming is that Tina considers herself Werner’s mom.
Werner is a cheerful man, aged 20 years, with trisomy 21, or Down’s syndrome; autism spectrum disorder; epilepsy; and hypothyroidism. In addition, Werner has type 1 diabetes, managed with insulin pump therapy.
Tina is a case manager for patients with mental disabilities around the Detroit area. She told me she took Werner in at age 14 years when both his parents died 9 months apart. In 2014, Werner’s father died of a premature, massive heart attack in his 50s; his mother, also in her 50s died of complications of advanced multiple sclerosis.
Following the deaths of Werner’s parents, Tina, who was his case manager at the time, felt that he was at risk for being left alone and possibly under inadequate care, as he had significant medical needs. In addition, Werner’s social and family situations were so difficult with inadequate support. Tina and her family decided to take Werner into their home. They wanted to adopt him as their own son, but this was logistically undoable.
But by all means, Tina’s family considered Werner a family member.
Tina and her husband treat Werner as their fourth child. Tina’s three daughters were very pleased to have a brother.
This real-life story is very uplifting and touching and almost brought tears to my eyes when I heard it. I thanked Tina for the wonderful job she and her family have done and are doing for this man. During the clinic visit, I so much enjoyed talking with Werner; he was full of joy and happiness.
Regarding his diabetes, Werner was diagnosed a few years ago with type 1 diabetes, which has been managed by a local pediatrician in northern Detroit, as well as by an adult endocrinologist in the Beaumont’s Health System. However, in October, Werner's insurance was changed, causing him to lose all his local physicians at one time. This created chaos in Werner's medical care. A critical situation occurred when Werner almost ran out of his seizure medication, which would put him at risk for having a seizure. The family struggled at the time to find urgent solutions for Werner's complex medical case. It was thanks to Tina's daughter, who works in a medical practice in East Lansing, who was able to get an amazing team of doctors and specialists. While inconvenient, Tina does not mind the commute once or twice a month to ensure best care for Werner.
Tina manages Werner’s diabetes very well. Werner has no diabetes complications.
Recent glucose data were downloaded from Werner’s insulin pump, and I was so pleased with how excellent his diabetes control has been.
Tina shared that Werner’s HbA1c has been maintained below 7% without hypoglycemia. Tina and all the family take care of Werner’s diabetes management. Also, Werner is a very meticulous patient and he adheres to healthy diet.
Of note, Werner has a seizure disorder, which implies that diabetes control should be so meticulous, avoiding hypoglycemia, which is known to trigger seizures.
It is so heartwarming to meet people like Tina’s family, who took in this young man with multiple medical and cognitive disabilities, and who needs huge efforts: medical care, love, support, care — a warm home!
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