In May of 2015, Lyndsey was just completing her freshman year in high school. Her first year of high school was a great success. She enjoyed several wonderful field trips with her class, went on lots of swim meets as a member of the High School swim team, made varsity, and was chosen by her coach as the Up-and-Coming Female Swimmer for 2015. Beyond that, she is truly a gem! She is delightful to be with even in her illness, always maintaining a positive attitude no matter how badly she feels, and her wonderful sense of humor keeps us laughing.
On her sister’s graduation day from university, it was evident that something wasn’t right with Lyndsey, but she pulled it together and we had a wonderful day celebrating “Sissy’s” success. Shortly afterwards, Lyndsey was diagnosed with Mono. She lay down and, as I say, really hasn’t gotten up much since. She went from swimming 3 hours daily, holding a 4.0 GPA, and generally being a busy and engaged teenager to sleeping an average of 20 out of 24 hours a day. She has been on heart medication since January 2016, and in a wheelchair for the past year.
To make a long story shorter, after a million blood draws, MRIs, EKGs, ECHO, halter monitor, infusions, trial and error, alternative therapies, etc., Lyndsey was diagnosed at the Mayo Clinic the following January with Postural Orthostatic Tachycardia Syndrome, or POTS as it is called by those of us who have become reluctantly familiar with this world.
POTS is a strange beast!
While researchers are still working to identify the root causes and pathology of POTS, there are several underlying diseases and conditions that are known to cause or be associated with POTS or POTS like symptoms in some patients.
When doctors cannot pinpoint the underlying cause of a patient's POTS, it may be called Primary or Idiopathic POTS.1 Idiopathic simply means "of an unknown origin." (Postural Tachycardia Syndrome). ; Blair P. Grubb, Circulation. 2008; 117: 2814-2817).
So while we have some suspicions of what the underlying causes of Lyndsey’s condition are, for now her diagnosis remains Idiopathic POTS, which poses a whole host of additional challenges.
Lyndsey’s daily symptoms are: abnormal increase in heart rate and significant drop in blood pressure upon standing, extreme fatigue, headaches, lightheadedness, heart palpitations, mental and physical exertion intolerance, nausea, brain fog, tremors, pre-syncope (fainting),coldness or pain in her hands and feet which are often purple in color, chest pains, shortness of breath and insomnia, chronic swollen glands and extreme sinus & ear pain.
Quality-of-Life and Disability:
Lyndsey’s symptoms have been so severe that everyday normal activities are like heavy labor for her. She describes herself as a “Spoonie” with spoons signifying the units of energy available to her in a day. She generally has about 5-7 spoons to use in a day, and getting ready to leave the house will cost her 2-3 spoons. (Christine Miserandino)
Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure. Approximately 25% of POTS patients are disabled and unable to work. Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure. (www.dysautonomiainternational.org)
For more information about POTS, please visit:
To see the spirit of Lyndsey, please see:
TEDXLSSU, I do not know what I do not know: A case for intersectionality | Lyndsey Johnson
Lyndsey has been accepted into the Pediatric Pain Rehabilitation Program at the Mayo Clinic, which is a 17 day program that has seen nothing short of miraculous results for POTS patients like her. This is a full time outpatient program which requires me to be there with her, as I will be receiving extensive training on how to continue her care as she goes through the program. We are asking for your help, if it is within your means, with the cost of getting to and staying in Rochester for almost a month, as well as ongoing expenses for alternative therapies that are not covered by insurance but help tremendously with Lyndsey’s condition.
For information on the Pediatric Pain Rehabilitation Program: Pediatric Pain Rehabilitation Program
Please help us get this amazing kid back on her feet and back into the world.
Lyndsey does not want to be a poster child for POTS, she wants to be a poster child for POTS recovery
Thank you for your kindness.
Mom & Sissy