Mother just wants to come home
Debra Douglas doesn’t know when she will be able to go home.
The Maple Ridge mother has been a patient at Royal Columbian Hospital for the past seven weeks, with no set date for her release.
Since summer, her health has been deteriorating. She spent the three weeks before Christmas in the hospital before being re-admitted at the end of January.
She has Ehlers-Danlos syndrome, a genetic connective tissue disorder characterized by loose, unstable joints that are prone to dislocating and move beyond normal range, and skin hyper-extensibility, for which skin stretches more than normal. leading to tears and bruises.
Douglas also has mast cell activation syndrome, an abundance and overreaction of mast cells in the organs, tissues and other areas in the body.
She also has postural orthostatic tachycardia, which is a form of orthostatic intolerance and excessive tachycardia that results in an excessive increase in heart rate when standing, accompanied by a drop in blood pressure.
As well, she has gastroparesis, a condition where the stomach cannot empty itself of food in the normal way, which can be caused by damage to the vagus nerve that regulates the digestive system.
Currently, Douglas is unable to feed herself and has a central line that feeds into her chest and into the subclavian vein that carries blood to the heart, called total parenteral nutrition. It gives her body the nutrients it needs and keeps her hydrated. She is also being tube fed through a direct line into her stomach.
Douglas is waiting to be accepted into the TPN program at St. Paul’s Hospital.
She is on a medical ward with a high number of older, dementia patients, which means it is loud and chaotic all of the time.
But she can’t go home. If she does, she will be taken off the waiting list for the program at St. Paul’s.
The program that will train her to do TPN at home, as well as cover all of the costs.
Right now, she is not covered.
The TPN solution alone costs $1,700 per month, not including supplies such as tubes and the bags.
Douglas is hoping to raise money to visit two different specialists in the United States to treat her conditions.
“Unfortunately, a lot of her medical expenses are not being covered and that is shocking,” said Leah Pillet, a friend of Douglas for 12 years and who set up a Go Fund Me page for the family.
Friends and family are trying to raise $10,000 to help with the medical costs. So far a little over $5,000 has been collected.
Pillet is concerned about her friend, but said she is a strong person.
“She is one of those people who lives with pain and gets on with life,” Pillet said of Douglas.
She added that Douglas has done a lot for her community.
She has volunteered thousands of hours with St. John Ambulance, teaching first aid. She has been a Scout leader and volunteered at her children’s school.
Douglas organized a toy drive in 2013 in honour of two-year-old Riddick Servio, who was run over and killed by a mini-van in the Meadowtown Centre parking lot.
In 2014 she organized a kick-a-thon at Okinawan Traditional Martial Arts to raise money for Variety, the children’s charity.
But now Douglas needs help.
She cries when she thinks of her boys, who beg her every day to leave the hospital.
“I’ve been in here endlessly, not knowing when I can go home,” she said.
To donate, visit gofundme.com/debra-douglas-journey-to-health.