My Sarcoidosis Symptom Spreadsheet

Day 1,420.

Early on in my sarcoidosis diagnosis, I created a spreadsheet to track my symptoms. I mainly needed a way for me to keep track of things so that I could have good conversations with my specialists.

My health overview dashboard

I have an Overview dashboard for my health where I summarise a few key metrics that I care about: my heart rate and my blood pressure. I also keep track of how often I visited the Emergency Department at the hospital or got admitted to the hospital.

My health overview dashboard

I also find the upcoming and past appointments list really useful. I can't believe that I have already had 157 medical appointments in the last 4 years!

I have a chart that shows me how many of the symptoms I have of certain conditions that I worry I may have. This chart covers all my symptoms since diagnosis, and no surprises: I have all the symptoms for cardiac sarcoidosis, as well as menopause.

Conditions I may have

I also keep track of how my symptoms change over the years. I had a wide variety of symptoms to start with, but now have mainly heart related symptoms caused by the scarring in my heart caused by sarcoidosis.

My symptoms over time

The Symptoms dashboard

In addition to the overview dashboard, I also have a Symptoms dashboard where I can see some trends around my symptoms for any year that I choose.

The Symptoms dashboard

I can see which months I had hospital admissions, ED visits and contrast that with months where I had arrhythmia like Ventricular Tachycardia (VT) and Ventricular Fibrillation (VFib).

I have trends of how my symptoms have changed, organised by major body areas. I did quite a bit of research into which symptoms my be caused by problems in which areas of my body to make this chart.

Symptom trend over time

For each body area I have a detailed breakdown of the symptoms I have linked to that body area, and the symptom trend for that area over time.

Heart symptoms over time

How I track my symptoms

To make all of this work, I have a very detailed symptom tracking sheet with a row for every day of the year. Right now, this sheet has 1,678 rows and 117 columns.

I keep track of my heart rate and vital signs using data from my Fitbit watch.

I have 50 symptoms that I keep track of by keeping notes on my phone. Once a month I will move those notes into the spreadsheet.

I also keep track of medication changes, when I have forgotten my medication and any specific medication dosages.

Taking control

I have found this spreadsheet invaluable. Especially when I am suffering from brainfog causing me to be forget basic things, nevermind my symptoms from 3 months ago.

It is of course a fine balance between obsessing over my symptoms, and using it as a tool to help my feel in control of my disease.

Overall, it gives me great pleasure to tinker with this every year. Maybe one day I will make it an app.