JULIE BERTRAND
Independent Reporter
Every day, 56-year-old Stettler resident Colleen Bell takes 17 prescription drugs. On top of that, she must take her blood pressure and temperature twice a day.
Bell has primary biliary cirrhosis, an autoimmune disease that attacks the liver by destructing the small bile ducts within.
When these ducts are damaged, bile builds up in the liver and over time damages the tissue.
The doctors think a virus may have caused her illness. Her family believed it was a bout of beaver fever, caught when Bell drank out of a mountain stream while camping in Kananaskis, which started it all.
“I was diagnosed right after that with the liver disease. I’ve had it for 25 years,” says Bell.
The disease has been steadily progressing in the last five years and it brought other complications.
She has Sjögren’s syndrome, which dries out mucus membranes, affecting eyes, nose, and mouth.
She also has Raynaud’s phenomenon, which causes the circulation in the fingers and toes to constrict.
They become discoloured and nails fall off.
She is on the national transplant list for a liver since April 2010. However, the shortage of donors coupled with having a rare blood type, AB-, means that she does not know when she will get a liver, even though she is at the top of the list.
“People are dying because people are not signing their donor cards,” maintains Bell.
She believes that the province’s present procedure for becoming an organ donor is not straightforward enough.
“People wanting to donate their organs after they die have to go to the registry office and fill out a donor card there,” says Bell.
“Ideally, I think it would be a good idea to have it on your driver’s license and just tick yes or no. They need to refine that system somewhat.”
Organ shortage is not the only problem that Bell is faced with. Money is an issue, as well as the constant help she must get from her family and the lack of resources available.
“They tell you ahead of time you have to have $10,000 in the bank to cover your expenses while all this is going on,” says Dianne Clark, Bell’s sister.
When Bell is called up for a transplant, she will have to drop everything and leave for Edmonton immediately. Once the transplant operation is over, she will remain in the hospital for around 10 days. After that, she will need to stay up in Edmonton for three months to be constantly monitored for rejection.
“I worry about having enough to spend those three months up there,” admits Bell.
Having stopped working when the disease started progressing, Bell is now supported with what she receives from the Canada Disability Pension and the Alberta Assured Income for the Severely Handicapped (AISH). This is less than $1,300 per month to live on.
“She’s desperately trying to stay self-sufficient. She doesn’t like to ask for help. She’s a very proud woman,” says Clark.
Bell is dependent on her family, which includes her mother, her siblings, and her 30-year-old son, every step of the way.
“You have to have a support person that goes with you for absolutely every appointment,” says Bell.
This means frequent visits to the hospitals in Stettler, Red Deer and Edmonton.
“You’re looking at doctor’s appointment every three months, MRIs every three months and blood work at least two or three times a week,” explains Bell.
Clark also stopped working at her home-based business and visits Bell three or four times a week.
Meanwhile, Bell cannot live in her house anymore and has moved in with her mother.
“Because the liver cannot clear the toxins out of your system, pneumonia builds up, and it goes to your brain and it causes what is called fuzzy brain”, says Bell.
Bell and Clark are already preparing for the transplant. However, they have to do everything themselves.
“We’re very limited in Stettler because we don’t have a lot of resources to draw from,” says Clark.
“In Edmonton, they have a lot of livers support groups. There’s nothing here and very little in Red Deer.”
They are still looking for accommodation in Edmonton.
“We were hoping to find a place that was furnished or like a hospice- type atmosphere in Edmonton, where we could stay there and we wouldn’t have to haul furniture, close to the university so we could exercise and walk, explains Bell”
They have found nothing so far. The Mennonites used to operate a residence for transplant patients, but they shut it down after they grew tired of the patients treating it like a hotel.
Both sisters believe the government should do more to help transplant patients.
These days, there’s nothing left for Bell to do but wait.
“Since July, I’ve been tired, really tired all the time. I sleep a lot, I’m fuzzy-headed, I have no energy whatsoever to do anything,” says Bell.
To get her mind off about the disease, she listens to meditation tapes and reads.
Despite all the seemingly insurmountable challenges, the family remains hopeful.
“We’re going to dance in the street when Colleen gets her liver,” says Clark confidently.