Thank you for taking the time to read this story. I know this is a long but read to the end.
Its every parent’s dream to have your child live the life of their dreams.
Imagine my healthy, 27-year-old who has gone from the Southern California Disney and beach life to an adventure of a lifetime living atop a Glacier in Alaska running sled dogs for the summer or working in a sled dog camp for an Iditarod Champion or trekking across the country to the Michigan to care for dogs training for sledding. After all of this, settling down in Oregon to experience nature and the outdoors while working as a dog trainer- doing what she loves and living where she loves!
Her life changed forever in November of 2016. I get a call from Lyndsie saying she is in the emergency room- again! Why? Because she fainted -again! And they don’t know why. This isn’t a phone call any parent is prepared to hear from their child and the calls kept coming because the fainting continued!
After a month of fainting spells and various injuries as a result, she still doesn’t have a diagnosis—"it’s in your head”, “drink more water”, “eat more salt”, “follow up with your PCP”. Lyndsie had to take a leave of absence from work, stop driving and temporarily moves in with family because she wasn’t safe.
The fainting continues- when I say fainting, I mean unconscious episodes lasting for 15-45 minutes! Not just a typical faint! Also, the injuries continue-concussions, bone sprains/strains and various cuts and contusions.
The specialists rule out seizures, rule out heart irregularities, rule out electrolyte imbalances. Still no answers. With much internet surfing of symptoms etc. we think we find a diagnosis it could be, but no one has heard of it or wants to perform tests to confirm it. We make the decision to move Lyndsie home and seek medical care in California. That was March of 2017.
The fainting continues. The injuries continue. The fatigue, depression and isolation continue. Imagine finding your loved one face down on the ground, not responsive and unsure of what injuries have occurred. Even worse, wondering if the day will be a "good day" or a "bad day" meaning will she wake up, did she hit her head and it's bleeding inside or if she broke something.
We obtain a consultation with Cleveland Clinic in Ohio and get recommendations for a tilt table test- She finally gets a cardiologist to perform the test and now we have a confirmed diagnosis in July 2017- Postural Orthostatic Tachycardia Syndrome- better known as POTs. Pots is caused by a malfunctioning autonomic system which controls most of your body’s automatic functions- heart rate, blood pressure, digestion, breathing etc.
About POTs (click the link to the left to watch a video about POTs)
Fast forward 2 ½ years, 7 cardiologists and 5 neurologists later, Lyndsie continues to faint 2-3 times a week which has led to additional injuries, ambulance rides, ER visits and hospitalizations with no new outcomes or recommendations. It has taken 2 years and a judge’s ruling to allow her to see a specialist who is knowledgeable in treating POTs patients, but it hasn't really paid off yet.
Today, she continues to faint. She has a been given a more formal diagnosis of Hyperadrenergic POTs which means she gets surges of adrenaline and then runs out which causes her to faint and stay unconscious. There is no known cure-only symptom management.
She gives herself IV fluids 5 times a week to stay hydrated, always has someone with her when out of the house, uses a wheelchair since activity increases her heart rate which causes her to faint. She taken several meds to lower her heart rate while maintaining her blood pressure. She continues with fatigue and fainting despite her current treatment. Her main specialists are trying to get control of this disease, but so, far there has been minimal improvement. One of them even stated she is the “worst case” of POTs they have ever seen.
There are several world-renowned POTs specialists that I think can help Lyndsie. Mayo Clinic has proven helpful to so many other Potsies and has become a “go to” places for answers, so I am asking for help to raise the money to get Lyndsie to Mayo Clinic since they have the experience to treat someone with her severity of POTs. We want her to get to these experts as soon as possible, so she can avoid further or worse injuries and begin on the road to maximizing health and learn to live with this life altering condition.
Because Lyndsie has not been deemed permanently disabled (isn’t that crazy?), she has no income of her own to pursue these needed consultations and the state insurance does not cover out of network services.
The cost for the evaluation and initial consultation runs around $8,000-$10,000 (not including travel and lodging). There may be additional testing and follow up visits until they find a treatment that works for her, so there may be additional charges and that is why the goal is set to raise $25,000.
I am reaching out to ask others to support my daughter in her quest for treatment and answers to her condition, so she can get back to living a productive, healthy, happy life!
We have learned to live with her POTs and have put safety measures in place as much as we can- padded floors, Apple Watch alerts to 911 and getting a dog to train to be a medical alert for her heart rate, but the best solution is finding a treatment that eliminates these fainting episodes!
Anything you can contribute would help get to the goal of finding a treatment to control her POTs and help Lyndsie get back to living a happier, healthier life.
If you cannot make a donation, you can still help by sharing Lyndsie's story with others.
Thank you for considering donating to this worthy cause.
I have provided some facts and information about POTs, but if you want to read more about her condition, please visit the Dysautonomia International Website at www.dysautonomiainternational.org.
Its every parent’s dream to have your child live the life of their dreams.
Imagine my healthy, 27-year-old who has gone from the Southern California Disney and beach life to an adventure of a lifetime living atop a Glacier in Alaska running sled dogs for the summer or working in a sled dog camp for an Iditarod Champion or trekking across the country to the Michigan to care for dogs training for sledding. After all of this, settling down in Oregon to experience nature and the outdoors while working as a dog trainer- doing what she loves and living where she loves!
Her life changed forever in November of 2016. I get a call from Lyndsie saying she is in the emergency room- again! Why? Because she fainted -again! And they don’t know why. This isn’t a phone call any parent is prepared to hear from their child and the calls kept coming because the fainting continued!
After a month of fainting spells and various injuries as a result, she still doesn’t have a diagnosis—"it’s in your head”, “drink more water”, “eat more salt”, “follow up with your PCP”. Lyndsie had to take a leave of absence from work, stop driving and temporarily moves in with family because she wasn’t safe.
The fainting continues- when I say fainting, I mean unconscious episodes lasting for 15-45 minutes! Not just a typical faint! Also, the injuries continue-concussions, bone sprains/strains and various cuts and contusions.
The specialists rule out seizures, rule out heart irregularities, rule out electrolyte imbalances. Still no answers. With much internet surfing of symptoms etc. we think we find a diagnosis it could be, but no one has heard of it or wants to perform tests to confirm it. We make the decision to move Lyndsie home and seek medical care in California. That was March of 2017.
The fainting continues. The injuries continue. The fatigue, depression and isolation continue. Imagine finding your loved one face down on the ground, not responsive and unsure of what injuries have occurred. Even worse, wondering if the day will be a "good day" or a "bad day" meaning will she wake up, did she hit her head and it's bleeding inside or if she broke something.
We obtain a consultation with Cleveland Clinic in Ohio and get recommendations for a tilt table test- She finally gets a cardiologist to perform the test and now we have a confirmed diagnosis in July 2017- Postural Orthostatic Tachycardia Syndrome- better known as POTs. Pots is caused by a malfunctioning autonomic system which controls most of your body’s automatic functions- heart rate, blood pressure, digestion, breathing etc.
About POTs (click the link to the left to watch a video about POTs)
Fast forward 2 ½ years, 7 cardiologists and 5 neurologists later, Lyndsie continues to faint 2-3 times a week which has led to additional injuries, ambulance rides, ER visits and hospitalizations with no new outcomes or recommendations. It has taken 2 years and a judge’s ruling to allow her to see a specialist who is knowledgeable in treating POTs patients, but it hasn't really paid off yet.
Today, she continues to faint. She has a been given a more formal diagnosis of Hyperadrenergic POTs which means she gets surges of adrenaline and then runs out which causes her to faint and stay unconscious. There is no known cure-only symptom management.
She gives herself IV fluids 5 times a week to stay hydrated, always has someone with her when out of the house, uses a wheelchair since activity increases her heart rate which causes her to faint. She taken several meds to lower her heart rate while maintaining her blood pressure. She continues with fatigue and fainting despite her current treatment. Her main specialists are trying to get control of this disease, but so, far there has been minimal improvement. One of them even stated she is the “worst case” of POTs they have ever seen.
There are several world-renowned POTs specialists that I think can help Lyndsie. Mayo Clinic has proven helpful to so many other Potsies and has become a “go to” places for answers, so I am asking for help to raise the money to get Lyndsie to Mayo Clinic since they have the experience to treat someone with her severity of POTs. We want her to get to these experts as soon as possible, so she can avoid further or worse injuries and begin on the road to maximizing health and learn to live with this life altering condition.
Because Lyndsie has not been deemed permanently disabled (isn’t that crazy?), she has no income of her own to pursue these needed consultations and the state insurance does not cover out of network services.
The cost for the evaluation and initial consultation runs around $8,000-$10,000 (not including travel and lodging). There may be additional testing and follow up visits until they find a treatment that works for her, so there may be additional charges and that is why the goal is set to raise $25,000.
I am reaching out to ask others to support my daughter in her quest for treatment and answers to her condition, so she can get back to living a productive, healthy, happy life!
We have learned to live with her POTs and have put safety measures in place as much as we can- padded floors, Apple Watch alerts to 911 and getting a dog to train to be a medical alert for her heart rate, but the best solution is finding a treatment that eliminates these fainting episodes!
Anything you can contribute would help get to the goal of finding a treatment to control her POTs and help Lyndsie get back to living a happier, healthier life.
If you cannot make a donation, you can still help by sharing Lyndsie's story with others.
Thank you for considering donating to this worthy cause.
I have provided some facts and information about POTs, but if you want to read more about her condition, please visit the Dysautonomia International Website at www.dysautonomiainternational.org.