聽 聽 聽 聽 聽 聽 聽 聽 Fourteen years can seemingly go by quickly for the average person, but for someone diagnosed with a terminal illness, one that鈥檚 only cure is an organ transplant, the waiting can draw out these years. Although it hasn鈥檛 been an easy fourteen years, Charlotte L鈥橭ste-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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 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鈥橭ste-Brown isn鈥檛 one to sit idly by - in fact she鈥檚 never been someone to just wait around 鈥� so, despite life鈥檚 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鈥檚 dismal numbers regarding organ and tissue donations.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 L鈥橭ste-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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 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鈥� 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 鈥� she is now at the top of the donation list.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淔rom 2003 to 2014 it was a gradual process,鈥� L鈥橭ste-Brown explained. 鈥淚 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.鈥�
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Almost on cue the oxygen tank she had been breathing from needed to be switched to a new tank: 鈥淚鈥檓 now on oxygen for 24-hours a day and since December 1,2015 first I鈥檝e been at the top of the list waiting for lungs.鈥�
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Lungs, L鈥橭ste-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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Until she receives that call L鈥橭ste-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鈥� treatments recommendations.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淚鈥檝e worked hard to look after myself,鈥� she said. 鈥淚鈥檝e tried everything and I think it has all benefitted me in its own way. I鈥檝e seen a herbalist, gone to acupuncture, and always searched for the next thing.鈥�
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淚 fully believe that for a person to maintain their health they need both traditional and non-traditional care,鈥� she added.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 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鈥檙e working with and how what they do will affect their patient.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Dealing with this challenge has given L鈥橭ste-Brown a new mission, a different reason to push forward in life, to bring the topic of organ donations to the forefront of Saskatchewan鈥檚 mind. A cause not only dear to her heart, but one that she was shocked her home province wasn鈥檛 more involved in 鈥揷urrently only one percent of the population in the Saskatchewan are organ donors.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淥ne percent is not enough especially in our province, a province of giving; I personally thought that was shocking,鈥� L鈥橭ste-Brown stated. 鈥淪o, the discussion in Saskatchewan needs to happen. Here it鈥檚 all about that sticker that comes with your health card and talking to your family.鈥�
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 It鈥檚 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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 L鈥橭ste-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鈥檛 gotten to it yet.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淧eople don鈥檛 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鈥檛 always have tomorrow,鈥� L鈥橭ste-Brown stated.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 So, an opt-out program would spur those who don鈥檛 want to be organ donors to call, while those who just haven鈥檛 gotten around to putting the sticker on their health card will already be on the list.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 This is a topic L鈥橭ste-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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淭he 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鈥檚 information and know if they were an organ donor,鈥� she stated.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 A fear that people have if they identify themselves as an organ donor is that their life won鈥檛 be cared for in the same way as someone who isn鈥檛 an organ donor, but this goes against the Hippocratic Oath and the morality of being a health professional.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 L鈥橭ste-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.聽聽
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淢any people think, 鈥榃ell we just need 4,500 or 5,000 people to donate then,鈥欌�� L鈥橭ste-Brown explains. 鈥淏ut that鈥檚 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.鈥�
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 In addition to this it is important to note that children need child donations and adults need adult donations
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淧eople are never too old to donate organs,鈥� L鈥橭ste-Brown explained. 鈥淭here is no age limit and older people are absolutely able to donate,聽 people with cancer can donate, smokers can still donate; they actually have a machine now that can clean a smoker鈥檚 lung 聽upto 78 percent and that鈥檚 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.鈥�
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 鈥淚f you become an organ donor you can save eight lives and change 70.鈥�
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 This is L鈥橭ste-Brown鈥檚 new slogan because bone, tissue, and organs can all be utilized to change someone鈥檚 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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 For now, L鈥橭ste-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鈥橭ste-Brown looks forward to having more energy in speaking publically about organ donations, opening dialogue with others regarding her life鈥檚 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.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 For more information regarding organ and tissue donation, contact the Saskatchewan HealthLine at (306) 655-5054 or visit the following websites:
路聽聽聽聽聽聽聽聽 Health Canada:
路聽聽聽聽聽聽聽聽 Canadian Transplant Society:
路聽聽聽聽聽聽聽聽 Government of Saskatchewan:
路聽聽聽聽聽聽聽聽 Saskatoon Health Region:
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Need a sticker contact Saskatchewan Health at 306-655-5054.
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Information is available through the Saskatchewan Transplant Program at Saskatoon鈥檚 St. Paul鈥檚 Hospital (1702 鈥� 20th Street West; (306) 655-5054) or Regina鈥檚 Kidney Health Centre (235 Albert Street North; (306) 766-6477).
聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 L鈥橭ste-Brown also welcomes speaking engagements and can be contacted through email at聽 [email protected]聽 or by calling her at (306)625-7976.
