We Must Do Better

The Past 48 Hours Have Been A Struggle.

I know that I need to advocate for my recent struggle and want to get my words across, but I feel that this is the best way to do it.

Monday I went to get a routine lab draw completed. That evening, I got a call from the emergency department of the respective health system I receive care from .

It was the on-call doctor for Primary Care. She had told me that my potassium was elevated and that if I did not retrieve the medicine that I ordered that I could have heart complications and ultimately end up dead.

I was floored as I am autistic and still take things at face value. I reply back that I had a normal day and had no issues around my heart of feeling abnormal in any way. I also told her that I did not feel comfortable taking an unknown medication from someone who doesn’t know my history or how it would interact with other medicines.

She told me that she would note that and to contact my doctor first thing in the morning.

At this point, and thankfully I was at my parents home for my weekly visit with them, it was increasingly difficult to calm down. Knowing that the results were in the patient portal, I immediately went there and saw that while they did receive a critical alert it was only 0.8 points out of range and knowing that set a small relief for some time.

Upon arriving home, I began to again escalate and had to reach out to my therapist for help, during which there were moments where I can be verbally combative and aggressive for feeling a certain way, regardless the decision was made to settle in for bed and go to work the next day.

The next day, I followed my routine as I had normally planned and before I even got to work, my primary doctor had called with the same thing I was told the night before and had ordered a retest of the labs. Knowing that I was already in my flow of the day, I decided to go today.

Coincidentally, my father this morning had an appointment with my primary doctor. My mother accompanying him spoke to my doctor about the way things were communicated by the emergency department to me and how there needs to be some sort of dialog box in their software to let the person calling the patient of any communication barriers, similar to the Yellow Dot Program offered by some states that notifies first responders of those with challenges.

Within a few hours, the preliminary results of the most recent test had arrived. Everything was “perfectly normal” as reported to me by the nurse and they had my sincerest apologies for what I have had to endure the past few days as a result of this heightened dialogue with the medical system.

For those that want to say that I am childish for having my parents meddle in my medical affairs as I am an independent adult. It was their observation since the phone call occurred that there should be some sort of dialog box in place to let staff know of communication challenges.

This is not just for the medical system, but for all of the systems that serve all individuals of all all challenges, whether it is autism or any other communicative need where the manner of how to be sensitive the needs of how to property communicate necessary information to someone that may have challenges understanding sensitive communication as something that I experienced.

I do not totally place blame on any certain person or system, because I and my family feels that this is an issue that needs to advocated for in all systems so something what I have experienced the past few days does not occur again in me or anyone else that is autistic or experiences any other communication challenges where necessary information can be misinterpreted. 

We must do better.