Twenty-four hours after my tilt table test I had a message pop up in my online patient portal. The message went a little something like….”blah blah Nicole….your tilt table test showed POTS syndrome. Here is an information sheet on lifestyle changes to make immediately! Have a great day!” I am sorry but WHAT. That is right, all I seriously was given about a new chronic illness was an information sheet on the lifestyle changes I needed to make. This lack of guidance on what to do next was extremely overwhelming. No follow up appointments were set up, no phone calls about what POTS is, nada. Nurses need the most information possible so I had already looked up most of this information prior to my diagnosis (remember my previous posts…google was my best friend). Due to this extra step, I understood what I needed to start to do to try to manage but man was it stressful.
My next step was to call my neurologist who had originally ordered the tilt table test. I scheduled a video appointment with her that week to talk about the results. She was helpful in starting me on my first medication and scheduling me an “e-consult” with the POTS specialist. She told me that the pots specialist could take up to 6-12 months just to be seen!!!!! Therefore, I would continue my care with her until I was able to see him. The next day I got a call and was able to get in an appointment with him! This was an exciting turn around for me. For me this was a HUGE appointment, since he was the one who specializes his care in autonomic disorders.
The day of my appointment arrives, so I throw on my mask and march myself over to the clinic building to be seen by the infamous POTS doctor. My boyfriend, Marcus, took the whole afternoon off just to go to this appointment with me. Since I seek care at the same hospital I work at, most doctors know that I am a nurse, and therefore talk to me in “medical” lingo. Instead of seeing me as a nurse, this doctor saw me solely as his patient. This may seem normal to most but it was a relief. The specialist spent an entire hour answering all of my questions, explaining in detail lifestyle changes/medications/future plan of care, answered all of my boyfriend’s questions, and did a full blown assessment. He explained that he believed I had been predisposed to having POTS in my past, making me more susceptible to COVID, therefore when I got infected with COVID it exacerbated into POTS. I learned from him that 40% of POTS patient’s are diagnosed after some type of viral infection. More commonly these patients have had infections such as lyme or mono, but now “long-haulers” are being diagnosed more frequently with POTS. Leaving the appointment I felt unsure (and still do) about this illness considering it is SO new but I felt heard for the first time in a long time. I am learning to be patient with myself and thankful that I am slowly gathering answers day by day!
Stay tuned for me explaining my “lifestyle changes” and what has helped vs what has not helped!
One thought on “Life as a patient!”
Thank you for blogging this. We are worried about you and this will help.