Interviewed by Simi Juriasingani
Shillane Labbett was diagnosed with cystic fibrosis at eighteen months of age. After a relatively normal upbringing, her symptoms worsened throughout adulthood. Her disease culminated with a severe episode of hemoptysis (coughing up blood) and low blood pressure, which led to a code being called. Shillane was put on a ventilator and she ended up receiving a double-lung transplant shortly thereafter. Since her transplant in 2005, Shillane has dedicated herself to transplant advocacy. We recently had the opportunity to talk to her about her experience.
Part 1 of the interview can be found here.
Looking back on your journey, is there something you wish you’d known before you had the transplant?
Shillane: Definitely. When I had my transplant, I didn’t know a lot of people that had transplants. The internet was very new, and I couldn’t connect with CF patients because we each carry bacteria that others with CF are susceptible to. At the time, I had only met two people that had lung transplants and neither of their journeys lasted longer than a year. So, I had a huge amount of anxiety and that added to it. Even though I was hoping to have a transplant, I didn’t know that I would live much past that.
Basically, I wish that I had been able to meet other people who had received lung transplants. I also wish there were groups like one of the groups I volunteer with, called the Transplant Advocate Association here in Kingston, because we try to encourage patients. We go to people’s homes and we call people to talk to them and to answer their questions. It doesn’t matter how many times you talk to a doctor or a nurse, they haven’t walked the walk. They know the medical side of it, but they don’t know what it’s like and what you’re going through. So that’s what I wish I had – a group like the Transplant Advocate Association – to have the opportunity to ask others about their experience.
What really sparked your desire to become an advocate for Trillium Gift of Life Network (TGLN)?
Shillane: I became an advocate very early after my transplant. I think I reached out in late 2005, early 2006. I reached out to TGLN because of the need to give back, to pay it forward and to honor my donor and donor family. That was the gist of it. I started by calling or emailing the Trillium Gift of Life Network. I think I did a couple of information tables with them at different places. I did a talk at Queen’s University. I was on the news with the transplant group at the university and spoke to students.
Then, after the first couple of stints I had with Trillium, I started with the Ontario East Transplant Support Group, which is the former name of the Transplant Advocate Association. It was very important to me to give back and with this group, we were basically advocating for people to sign their donor cards, since there wasn’t an online registry in Ontario at that time. So, we would go out to different venues, hold information tables and other events to do public speaking on organ donation and transplantation.
Could you tell me more about your volunteer work with the Transplant Advocate Association in Kingston?
Shillane: At the Transplant Advocate Association, our mission is basically twofold: To help those going through the transplant journey as well as advocating for people to register their consent to be an organ and tissue donor. Also, we uphold Trillium’s mission in the things that we do. So, when we are out at these information tables and such, we are able to give out many pamphlets, brochures, all the info from the Trillium Gift of Life Foundation. We obviously encourage people to go to beadonor.ca/campaign/taa_canada to register.
With the Transplant Advocate Association, I’ve sat on the board since 2006. I’m currently the vice president. We hold monthly meetings and that’s where we talk about different events and ways to fundraise. We try to give money to people going through the transplant journey. Although everything is covered for your medical surgery, it’s still very expensive to relocate closer to different centers, such as Toronto. Even if you only have to drive to appointments and come home, it can get very expensive. We also hold monthly informal chats. It’s usually 11:00 to 1:00 or 2:00 in the afternoon at a restaurant, where post-transplant recipients come and we encourage new people to come and ask any questions they may have.
What would your advice be for someone who isn’t a transplant recipient or the loved one of a transplant recipient, but wants to get involved with transplant advocacy? How could they go about that?
Shillane: There are several different ways you can become involved. I think the most important and the very first thing people should do is register their consent to be an organ and tissue donor and to tell their family. Also, let their wishes be known. Another thing is to join like-minded groups and help with donor drives and information tables along with attending different events.
You can educate yourself through research and then talk to your family, talk to your friends and just continue encouraging others through word of mouth. Know the facts and help dispel myths. I understand why there are a lot of myths. For example, television programs often show the same doctor working with the person that just donated the organ and the person who is now receiving the organ, and that’s just not the case. Your doctor is always going to try to save your life no matter what, it’s their job. It’s only at the last minute when the transplant team gets called in to talk to a family.
As someone who’s been a transplant advocate for a long time, you have a lot of experience with dispelling myths. What advice would you have for an advocate in terms of what they could do or say to someone who is against registering as an organ donor?
Shillane: Dispel the myths with facts. Tell them about how old the oldest organ donor or tissue donor was. Tell them that people with certain diseases can still donate organs. Tell them to register and leave it up to the doctors because they determine if someone’s organs can be transplanted when the time arrives. Also, tell them that most of the major religions are totally on board with organ donation. But it’s also important to tell people that it’s up to them. It’s their choice. Encourage them, even if they don’t want to register at that time, to continue giving it more thought and maybe to talk it over with family members because they may change their mind later.
Something that we’ve noticed when we do donor drives say at universities is that the younger generation is much more in favor of organ and tissue donation and they can’t imagine a world without it. It’s very important that young people talk to their family after registering because the family always has the last say in Canada and Ontario. Another important idea to share is that the likelihood of you donating your organs is much less than the likelihood that you’ll need a transplant.
Finally, what would you say to a patient who’s on the waiting list for a transplant?
Shillane: I would tell them to seek out all resources and places to ask questions. There are so many resources now. You can read books, you can go online, and you can chat with people. Go to different transplant events and talk to other recipients. It’s also super important to ask questions. Ask the nurses, the doctors, the physiotherapists, all those people. Get all the information. It’s so much easier in the long run to have that information. I think it’s better for your body because you don’t have as much anxiety and fear, and I think you would have a better outlook if you were more relaxed in that situation.
I would like to thank Shillane for talking to me about her transplant experience and advocacy work. Her insights about the recipient experience and her advice on how to dispel myths and encourage donor registration as an advocate are invaluable.