Information = Hope

This morning I had a brief Twitter conversation that got me thinking about… well a lot. And a lot of it can’t be conveyed in a blog post. Don’t worry though, I’ll try.

I butted into a conversation between Scott of Arden’s Day and Tony of Blogging Diabetes that started with one of Scott’s blog posts titled, “Using the Word “Cure” at Diagnosis… Must Stop!” (Here’s the part where I admit to not reading the post until after a few tweets were exchanged, but go read it anyway, it’s good.)

I interjected that no one mentioned anything about a potential cure when I was diagnosed last August… but it they also neglected to explain Type 1 diabetes to me. It actually took me point-blank asking a doctor what type of diabetes I had before anyone explain anything that was happening in my body. As my husband and I did more research into Type 1 diabetes after my release from the hospital, it became incredibly apparent that the doctors just didn’t provide the information. Maybe they didn’t even have it, I saw an endocrinologist for only five minutes during my three-day stay after all.

Their responses

The reality of my hospital discharge is that the doctors were playing with minute levels of my potassium and my paperwork took forever to get processed. I was dressed in my clothes again and waiting to be allowed to leave. When I finally got a folder with my papers and prescriptions for insulin and pen needles, it was Sunday night and the hospital pharmacy had closed a hour before they actually wrote the prescription. We’d actually asked for the prescription to get written earlier so my husband could fill it while they processed my discharge… you know, while the pharmacy was still open. My mother-in-law and husband got my prescription filled at the only open pharmacy in the area and I was finally able to take my Lantus… after 11 pm.

They didn’t provide adequate education. I didn’t know that my diabetes was autoimmune related. I didn’t know that I could choose my endocrinologist. I didn’t know that I didn’t have to eat at least 45 grams of carbohydrates per meal. No one told me that Lantus needed to be taken at the same time each evening, or that anything like a carb ratio existed.  The  education I received was a nurse teaching me how to test my blood sugar and the mandate that I watch a video (from circa 1983) about diabetes (not type specific) and a visit from a condescending dietitian.

I feel like I’m bad-mouthing the hospital that saved my life, but patient care improves when patients speak (I hope at least!). Patient education should be given a priority, obviously save lives before education, but in my situation education was possible while saving my life.

  • Have up-to-date resources, don’t make your patients watch videos from the 80s about their conditions. There have been advances made since that video was made that weren’t reflected in it. Life looks different from a hospital bed, I felt like I was being forced to sit through a middle school science video while having burning liquid pushed into my veins (ever had IV potassium?).
  • Treat every patient as a person, and acknowledge that you patients have different fields of knowledge, don’t forget the share with them the basic stuff (like the name of their medical condition).
  • My husband brought our iPad to the hospital for me, he sat in my room with his laptop, they all knew we were connected. In this age, with wifi in the room, have online resources you can direct patients to.
  • Consider timing so that your patients can get the post-release care they need, when they need it. (Write the Rx before the pharmacy closes.)

The word “cure” was never used during my diagnosis, which I’m glad of. But other words were missing, like “chronic,” “choice,” “technology” and “auto-immune.”

I am thankful to the medical professionals who saved my life. I’m grateful to the nurses who held my hair while I vomited, who came running immediately when I pressed the call button, who stayed past the end of her shift to make sure I was discharged, who taught me how to check my blood sugar and who were able to make my family laugh. I’m thankful that the doctor didn’t laugh as me when I asked what type of diabetes I had and who let my husband look at all of my test results when he asked.

2 thoughts on “Information = Hope

  1. Wow, it makes me so sad to hear of this. I knew people with T2 often don’t get all of the information they need, and that makes me so mad too. But I didn’t know it happens with T1 too. Thank you for spreading some awareness on this problem!

  2. Just about nine months into my daughter’s T1D I am still astounded that we manage so much on our own with so little training. We were very fortunate at the hospital to have great educators and stellar followup via phone, but so many heady decisions are forced on us in the dark of the night, at a soccer game, just about anywhere. It seems laughable that we only see our endo every three to four months. I can’t think of many other diseases where the patient and caregivers must also become doctors. But I am thankful every day that I can reach out to an amazing online community and get support and information that is lacking elsewhere.

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