Woman waiting for double lung transplant urges education in presumed consent
When Charlotte L'Oste-Brown sees her doctor during one of her monthly appointments, he tells her she's in excellent health; all she needs is a new set of lungs.
What her doctor means when he says "excellent health" is that she is ready for the transplant, L'Oste-Brown explained to CBC Radio's The Morning Edition.
"I don't do much any more in the way of any physical activity really," she said.
L'Oste-Brown has been living with pulmonary fibrosis for the last 13 years. She has been sitting at the top of the waiting list for a double lung transplant for more than a year now.
About a week ago, Premier Brad Wall said he would like to see Saskatchewan adopt presumed consent, which would mean people would have to opt out of organ donation after death. L'Oste-Brown is one person who would like to see such a policy in place in the province.
Saskatchewan's organ donation rates are among the lowest in the country. Less than one per cent of people donate their organs after death.
Presumed consent
"Honestly, in any plan that is implemented, education is the key," L'Oste-Brown said of a presumed consent policy.
She said her first reaction was of an increased rate of donation and lesser wait times, adding that it makes sense to her in her current condition.
Education, talking with people and getting to understand the need may increase the number of donors, she said.
"People waiting for an organ donation have no other choice," she said. "Medication can't help them."
L'Oste-Brown urges people to talk about donation and start a dialogue with their family and children.
One in five families are waiting on an organ donation, she said.
L'Oste-Brown said she does not believe people intend not to donate, but sometimes they may just forget to put the sticker on their health card as well.
Waiting for the call
Every time she hears her phone ring, she said she wonders if it is the call she has been waiting for. L'Oste-Brown said she is almost scared to answer if it's an Alberta phone number.
She said she is constantly attached to a 15-metre hose in her home. When she leaves the house, it is with an oxygen tank.
"I've become a chair dancer, I call it," she said. "I like to go to things but anything physical, moving around, you're out of breath right away."
L'Oste-Brown said she has to wait for an exact match before she can get the transplant she needs. Blood type, the lungs fitting in her chest cavity and the antibodies in the tissue matching up with her own all need to be exact, she said.
She said she has a full-time job in which she works out of home, goes out for speaking engagements and meets with a support group to keep her mind off the wait.
"You can't sit in the house all the time," L'Oste-Brown said. "But I have a great support group that go out and visit a bit, to get out."
