Long COVID Collection– Patient story, no. 4

• CDC just issued the first official report to try to quantify the number of Long COVID deaths in the US. It played a part in at least 3,544 deaths in the first 30 months of the COVID-19 pandemic. It was difficult to quantify the data as not all death certificates are the same. Also there is no specific diagnosis for Long COVID so very hard to track effectively. They did find Long COVID deaths made up less than .03% of the 1,027,487 COVID-related deaths from Jan 2020 thru June 2022.
• The common elements they found with Long COVID Deaths:

The majority of the people who died from Long COVID were white, older and male.

Specifically 78.5% of the deaths were among non-Hispanic white people. Non-Hispanic Black people made up 10% and Hispanic made up 7.8%.

(Included again this week by reader request.) CDC did find proportion of COVID deaths among Americans 65+ has fluctuated from 8 of 10 in the first few months to a low of 6 in 10 when the Delta wave struck in the summer of 2021 to a high of 9 out of 10 today.

(Be sure to get your yearly Flu shot and your COVID booster..let’s have a healthy holiday season with our loved ones, neighbors and community.)

I am 39 years old. I have chronic migraines and a hereditary knee condition. I am fully vaccinated with all boosters.

I was living in So Korea teaching first grade when I first became very ill, Christmas 2019. The doctors thought I had Lupus, as all my joints hurt. I could not walk without assistance and was using crutches between April 2021 and June 2022.

I had multiple tests but since there was no test for COVID yet, no diagnosis or treatment plan was outlined. Initial symptoms: severe coughing, fever, trouble breathing at night and extreme fatigue. I had always been very active – hiking, adventuresome – now all gone.

Frustrated and feeling a bit helpless, I returned to the United States but was unable to work and teach as walking and extreme exhaustion was still a challenge. Strange symptoms years after initial illness: passing out in the shower, nosebleeds, possible nerve damage, sweating profusely, rapid heart rate, blurry vision, muscle soreness/weakness and eventually not being able to stand or walk on my own.

With no formal medical help, I ‘googled’ symptoms and started my own treatment – cut glutton out of my diet. Adding a high dosage vitamin regiment along with glutton free, I began to see minor improvements. As of today, I am glutton free (likely Celiac Disease) and still unable to work so trying to find some work or disability assistance (but without a Long COVID diagnosis/which doesn’t exist, not much help). I have been on a life-changing long road and it is still with me but I am trying to be more positive as I look to the future.

Happy Healthy Holidays to you all! As I am Patient #1, I am wishing for a fabulous 2023 for all of us- more joy, more tolerance, more grace, and absolutely tons of happiness and health! Hold your loved ones close…always.

All historic articles and training material are available on the Patient Financial Navigator Foundation’s webpage: PFNFinc.com. The Foundation is an Idaho-based, Family Foundation formed in 2017. 208 423 9036 for more information. (Do you have a topic for Healthcare Buzz? Would you like to tell your LONG COVID story? Send contact to daylee1@mindspring.com. Thanks!)