Angela Neufeld knew something was wrong, but doctors in Quesnel couldn't figure out what.
She had symptoms that included a 35-pound edema, pain in her jaw that kept her from being able to eat and difficulty breathing.
"My lungs were burning, but it was my heart. I thought it was my lungs. There were so many weird things that didn't make sense and so I do understand that the local doctors weren't equipped to figure it out," she said. She began to doubt herself as doctors gave simple explanations for her symptoms like acid reflux. "But when my dog finally jumped on top of me on the couch and I had paw prints from the dog in my body for like 24 hours, I thought 'this is not right. This is not normal. Something's wrong with my everything."
Neufeld was eventually diagnosed with cardiac AL amyloidosis. She explained the disease attacked her heart and caused it to stiffen up and harden. By the time they figured it out, Neufeld was already in the end stages of heart failure and was sent to Vancouver.
"It was horrible because I went in a million times in Quesnel, in the emergency and they never diagnosed anything and kept sending me home saying that I had ulcers," she said. "The guy that ended up telling me what was wrong was the same guy who kept sending me away. He felt super bad because he knew who I was because I (had) been there so much."
Neufeld was told that it was terminal and the disease was a death sentence.
She asked how long she had to live and the doctors said they couldn't be sure. It could be weeks, it could be a year-and-a-half at the absolute longest.
Neufeld began chemotherapy and due to her only being 47 and having a very active lifestyle, it worked extremely well, extremely quickly. Doctors decided she could be a candidate for a heart transplant, which would save her life.
"They actually never told me (a transplant was an option) until the chemotherapy started helping," she said. "If my body didn't accept the chemo, like react good to it, I think they wouldn't have told me."
She said it was a flurry of emotions after she was told she could have a transplant and began wondering how long it would take, whose heart it would be and if she would survive until a heart became available.
"More scared than anything, but happy and relieved that maybe there was a chance," she said.
The first call she got was a week-and-a-half after she was put on the transplant list, she made it as far as Williams Lake and received another call saying the heart had a clogged artery, making it ineligible to be transplanted to her. She was shocked because she had mentally prepared herself to go under the knife and possibly not wake up.
Another week and a half later, she got another call. They were sure the heart was eligible to be transplanted to her and she started making her way to Vancouver. It was during a period of intense floods in May 2023. Cache Creek was closed and she and her husband made their way south hoping and praying the roads would be open. One road was open through Lillooet and Whistler.
"We ended up just getting through before another avalanche closed the highway, we were super lucky," she recalled, adding she had fears they wouldn't make it to Vancouver in time for the transplant because organs only last so long out of bodies.
While on the transplant list, Neufeld received a call from a producer to ask her if she'd like to share her story as part of a series on transplant patients. The series was created by Vancouver-based production company Omnifilm Entertainment in association with the Knowledge Network and was directed, written and produced by Vancouver filmmaker Sheona McDonald.
McDonald told Black Press the idea for the series was pitched by someone from Omnifilm in 2018 or 2019 but the pandemic delayed production. McDonald directed the Knowledge Network's second season of Emergency Room at Vancouver General Hospital, which said helps give an insight into the work of first responders that many people don't see.
Once the pandemic began dying down, McDonald was brought on board to help make create the series.
"I think that this really gives you a sense of what that means and all of the people on the ground and what has to fall into place to even make a donation possible," she said.
The logistics of a show that includes filming surgeries were very difficult, McDonald said but everything fell into place despite those obstacles.
"I think it became apparent quite quickly that going in through patient stories and following that end of things, that would lead us to the medical teams was going to be the best way in," she said. Asking people to share their stories was a huge thing to ask of people, she added. "The ask is really substantial on all fronts just from a privacy perspective. People are letting us literally within their bodies in many cases."
She had to ask the subjects of the shows to allow camera crews to be in their appointments, to film their surgeries during a time of intense vulnerability.
"Those are the challenges, but I think what makes it remarkable," McDonald said. "So many people really just opened their lives and were really trusting and engaged and I don't know if it could have gone better given what we were asking."
Throughout the series there are difficult moments emotionally, moments where the patients or their families are experiencing strong feelings around a surgery that has risks but may also save their lives.
The moment Neufeld is introduced in the series is the same time McDonald met her. McDonald was already filming throughout the day when Neufeld got the call and asked if any of her crew would be willing to extend their 10-hour work day to help get the footage to introduce Neufeld to the viewer while she met McDonald for the first time.
Neufeld said one of the reasons she agreed to do the show was to have something to share with her family if she didn't survive.
"When I got diagnosed, I started a YouTube channel because I wanted to start documenting recipes and cooking and this and that for my kids because they told me it was six to 13 months," Neufeld said. When she got the call about the series, she thought sharing her story would be another good way to leave something behind for her family if something were to happen to her.
McDonald said Neufeld was one of the patients who was most keen on watching their surgery back.
"It is kind of amazing because she's in there and there's a few minutes where she has no heart in her body. It's not pumping. There's the machine doing her lungs and like pumping the blood through her system but she is without a heart for awhile. It's pretty wild. Not for the feint of heart," McDonald said.
In the episode, the surgeons explain what they are doing while operating on Neufeld. They clearly and calmly explain different processes and machines that help assist the doctors. The surgery is graphic, showing Neufeld's still-beating heart after it is removed from her and the new one as it is placed in her chest.
Over a month after the surgery, Neufeld visited her old heart at a facility where it was being studied. She, her sister and her husband got to see a comparison of Neufeld's original heart and a healthy heart. They could see and feel the stiffness of her heart, which could stand up on its own while a healthy heart cannot.
Neufeld is doing well since the transplant, which took place in May of 2023. She will have chemo each month for the rest of her life to keep the disease at bay. She said it's only a matter of time until it comes back and something else will have to be tried but for now, she's doing very well.
The four-part series Transplant Stories will be available to stream for free at knowledge.ca starting Nov. 19 and broadcast on the Knowledge Network Nov. 26.
To register for to be an organ donation, visit register.transplant.bc.ca. The registration includes an optional message to leave for loved ones that will be presented at the time of donation. There are 612 people in B.C. waiting for an organ transplant at the time of publication.
