Fourteen years can seemingly go by quickly for the average person, but for someone diagnosed with a terminal illness, one that’s only cure is an organ transplant, the waiting can draw out these years. Although it hasn’t been an easy fourteen years, Charlotte L’Oste-Brown of Regina, has a positive outlook on life and continues to look forward as she awaits someone to give her the gift of life, the gift of lungs.
She lives her life while waiting for a phone call, one which will see her ushered onto a plane destined for the city of Edmonton, the city where her transplant will be done. Yet, L’Oste-Brown isn’t one to sit idly by - in fact she’s never been someone to just wait around – so, despite life’s obstacles she has embarked on a new mission in life. She was given confirmation that she should pursue advocating on behalf of organ donation after a conversation with the regional director of the Canadian Transplant Association who encouraged her to tell her story; one that brings awareness to the province’s dismal numbers regarding organ and tissue donations.
L’Oste-Brown had been living in Hazenmore, SK, where she operated a successful greenhouse businessand was busy being the mother of two active girls.She always found herself busy with life: coaching, dedicating time to the local school board, and enjoying an overall active lifestyle.
Her lifestyle was completely altered in June 2003 when she was forced to slow down. She knew something was wrong one morning when her breathing had become laboured. Was it allergies and her surroundings? In September of 2003 she discovered it was something more as she was given a diagnosis of polymyositis - a disease which attacks connective tissue causing inflammation and degeneration of the muscles. The polymyositis then triggered pulmonary fibrosis, which is the thickening of tissues between the lungs’ air sacs. As the tissue thickens it becomes damaged and this damage is irreversible. Her only hope became maintaining her health and waiting for the moment when the possibility of an organ donation would become a reality – she is now at the top of the donation list.
“From 2003 to 2014 it was a gradual process,” L’Oste-Brown explained. “I was losing air and I had to cut down on my physical activity. At that time I was down to approximately 68 percent oxygen, but in August 2014 I had a bad infection and my oxygen dropped to approximately38 percent.”
Almost on cue the oxygen tank she had been breathing from needed to be switched to a new tank: “I’m now on oxygen for 24-hours a day and since December 1,2015 first I’ve been at the top of the list waiting for lungs.”
Lungs, L’Oste-Brown, says are a very particular organ donation because they have to be the exact chest size, blood type, and height. The lung cannot be trimmed to change shape; it has to be the perfect match.
Until she receives that call L’Oste-Brown will continue to eat well, exercise as she can, and keep an open mind while utilizing non-traditional medicine as well as medical doctors’ treatments recommendations.
“I’ve worked hard to look after myself,” she said. “I’ve tried everything and I think it has all benefitted me in its own way. I’ve seen a herbalist, gone to acupuncture, and always searched for the next thing.”
Her medical doctors were happy to work with her and her decision to seek alternative care, but she credits both traditional and non-traditional medicine for where she is today.
“I fully believe that for a person to maintain their health they need both traditional and non-traditional care,” she added.
Although she is no longer using non-traditional practices as the operation is very precise and the traditional medical team is able to do their best work when they know exactly what they’re working with and how what they do will affect their patient.
Dealing with this challenge has given L’Oste-Brown a new mission, a different reason to push forward in life, to bring the topic of organ donations to the forefront of Saskatchewan’s mind. A cause not only dear to her heart, but one that she was shocked her home province wasn’t more involved in –currently only one percent of the population in the Saskatchewan are organ donors.
“One percent is not enough especially in our province, a province of giving; I personally thought that was shocking,” L’Oste-Brown stated. “So, the discussion in Saskatchewan needs to happen. Here it’s all about that sticker that comes with your health card and talking to your family.”
It’s imperative that the individual who wants to be an organ donor discuss it with their family as both the donor and next-of-kin must consent to the donation. Even if the donor has said they would like to become a donor their family has the last say on the matter.
L’Oste-Brown is in favour of an opt-out registry, which would see everyone in Saskatchewan automatically added to an organ donor list with the option of contacting the registry to have their name taken off the list. This is because, as she speaks with people she has been told often that they mean to get around to putting the sticker on their health card, to signing the organ donor card that sits with their licence, but just haven’t gotten to it yet.
“People don’t know when an accident will happen so waiting to sign their donor card - to put that sticker on their health card - might not happen even if they had intended to; for people waiting for a donation, we don’t always have tomorrow,” L’Oste-Brown stated.
So, an opt-out program would spur those who don’t want to be organ donors to call, while those who just haven’t gotten around to putting the sticker on their health card will already be on the list.
This is a topic L’Oste-Brown will present to the legislature at 1 p.m. on Tuesday, Sept. 6, as she is registered to speak during an open, public hearing regarding organ donations, which all are welcome to attend. Her intention is to bring this topic of an improved registry into discussion and push for the government to develop a better system than what is currently in place in Saskatchewan. Whether it is an opt-out registry or a registration done online for those that want to be organ donors ultimately a change needs to be made to make the list of donors more accessible and easier to locate.
“The registry needs to be available to EMS immediately because if they come across an accident at one a.m., they need to be able to look up that person’s information and know if they were an organ donor,” she stated.
In fact the system is all in place to facilitate a registry as healthcare has moved towards digital files, which can be accessed online by healthcare professionals as needed. It would be a matter of adding the information onto the file. Something which has already found success in British Columbia where registering to be an organ donor online simply requires your health number, name, date of birth, address, and having a parent/guardian sign on behalf of a minor.
A fear that people have if they identify themselves as an organ donor is that their life won’t be cared for in the same way as someone who isn’t an organ donor, but this goes against the Hippocratic Oath and the morality of being a health professional.
L’Oste-Brown thusly explained that she and the thousands of others waiting for an organ donation are not simply waiting for someone to die; they are all waiting for someone to make a decision that will give them the gift of life.
Approximately 4,500 people in Canada were waiting for an organ donation in 2014 and 278 individuals died while waiting for transplants according to Health Canada.
“Many people think, ‘Well we just need 4,500 or 5,000 people to donate then,’” L’Oste-Brown explains. “But that’s not the case, for example 80 percent of lungs cannot be used in an organ transplant because of how vulnerable they are, which means more donors are needed.”
In addition to this it is important to note that children need child donations and adults need adult donations
“People are never too old to donate organs,” L’Oste-Brown explained. “There is no age limit and older people are absolutely able to donate, people with cancer can donate, smokers can still donate; they actually have a machine now that can clean a smoker’s lung upto 78 percent and that’s better than the alternative. I can function on 78 percent. But, the best decision is, if you want to be an organ donor, to just become an organ donor and let the doctor decide at the time what can be used. Someone might have a failing heart, but maybe their kidneys are in good shape.”
“If you become an organ donor you can save eight lives and change 70.”
This is L’Oste-Brown’s new slogan because bone, tissue, and organs can all be utilized to change someone’s life. For example burn victims are in need of tissue donations, tendons can be used in knee surgeries, and donated bone can be used in bone grafts.
For now, L’Oste-Brown will continue to advocate for organ and tissue donations, while encouraging the province to create a better system for registering to be an organ donor; but, once she receives her new lungs L’Oste-Brown looks forward to having more energy in speaking publically about organ donations, opening dialogue with others regarding her life’s current journey. A journey which she says will come full-circle when she gets that call from Edmonton saying everything is in place and someone has given her the gift of life.
For more information regarding organ and tissue donation, contact the Saskatchewan HealthLine at (306) 655-5054 or visit the following websites:
· Health Canada: http://healthycanadians.gc.ca/diseases-conditions-maladies-affections/donation-contribution-eng.php#a21
· Canadian Transplant Society: http://www.cantransplant.ca
· Government of Saskatchewan: https://www.saskatchewan.ca/residents/health/accessing-health-care-services/organ-and-tissue-transplants-and-donations
· Saskatoon Health Region: https://www.saskatoonhealthregion.ca/transplant
Need a sticker contact Saskatchewan Health at 306-655-5054.
Information is available through the Saskatchewan Transplant Program at Saskatoon’s St. Paul’s Hospital (1702 – 20th Street West; (306) 655-5054) or Regina’s Kidney Health Centre (235 Albert Street North; (306) 766-6477).
L’Oste-Brown also welcomes speaking engagements and can be contacted through email at [email protected] or by calling her at (306)625-7976.
