Former Bonavista resident Tammy Fry has been unable to get home from St. John’s to spend Christmas with her family for two years. She says the burden of being away from a dialysis unit for several days is not worth the effort.
Tammy Frye grew up in Bonavista, but now lives and works in St. John’s. The lack of a kidney dialysis machine in her hometown forced her to make the move to the city and prevents her from going home. — File photo by Keith Gosse/The Telegram
Fry was in her late 20s when she became very ill in May, 1998. She was taken to Grace General Hospital in St. John’s and began dialysis the same day.
At the time, Clarenville did not have a dialysis unit and she spent six weeks on hemodialysis before insisting on doing home (peritoneal) dialysis because she did not want to leave her friends, family and job to move to St. John’s.
She had a tube placed in her stomach for hemodialysis; and the process required a lot of equipment, requiring a lot of storage. She luckily had space at her parent’s place to hold the equipment.
She was doing peritoneal dialysis, a treatment for patients with severe chronic kidney disease, four times a day.
“I eventually had to do it in the middle of the night. I had a close friend who would stay with me and she would set her alarm and hook me up to my fluid in the middle of the night while I was still sleeping,” says Fry.
Then she acquired a machine to do it automatically at night. Soon after that, she travelled to Halifax for a kidney transplant. After coming home, her doctor told her she had only 40 percent kidney function, even after the transplant. They said she would be lucky if she got six months out of the kidney.
“I was always on pins and needles wondering when I would have to start dialysis again, and because I got so ill at the end of doing peritoneal dialysis before, I figured for sure I was going to end up being in St. John’s,” she says.
Fry began trying to wrap her head around the option of moving to St. John’s. She had been working at a pharmacy in Bonavista. Her doctor at the time recommended she change careers because the long hours of standing were not good for her.
“Because of my situation I was always retaining fluid from standing on my legs. The doctor said to go back and get retrained and get a desk job,” says Fry.
Following her transplant, she continued to work for six months as a pharmacist before leaving in May, 2000, to move to St. John’s to go back to school to train for office administration. Following the two-year program she got a job in St. John’s.
Her kidney transplant, which doctors predicted would only last her six months, ended up lasting 8 1/2 years.
Then, in September, 2007, she had to start dialysis again.
Though it’s been more than a decade since she moved to St. John’s, Fry still thinks about how her life would have been had she not had to relocate.
“I probably never would have left. I was quite content where I was at the time, but getting more and more concerned. My doctor kept recommending being close to the hospital,” says Fry.
By the time Clarenville got a dialysis unit, she was situated with her new life in St. John’s and the commute from Bonavista to Clarenville still posed difficulties.
“Especially moving home and still having to travel to Clarenville. The road from Clarenville to Bonavista is not the easiest road to travel in the summer. It’s narrow and bumpy and winding. Most people, when they do dialysis, have an issue with blood pressure dropping and they don’t recommend you drive afterwards,” she says.
Fry says if Bonavista had a dialysis unit when her ordeal began, she would still be living there.
“I haven’t been home for Christmas in two years. It’s ridiculous to say that when you are only 3 1/2 hours away, but 3 1/2 hours is long when you are driving home on Christmas Eve after just doing dialysis. You’re exhausted, tired and your blood pressure is low,” she says
On years she did get home for Christmas, she found she was too tired to enjoy herself.
“Last time I went home, I did my weekend stint, which is two days in between my treatment. I did my treatment the day before Christmas Eve, woke up Christmas Eve morning, drove home and I was home for Christmas Eve, Christmas and Boxing Day. I had to push my dialysis back from 7 a.m. to 5 p.m. I didn’t have to drive, but by the time I got back I could barely breathe because I had extra fluid on and I had a day put off on my treatment just to try and get back home,” she says.
Fry says a unit in Bonavista would allow her to schedule a treatment while home visiting for the holidays because there would be a unit within five minutes of her mother’s house.
“Even in the summer to go home for a few days and have a treatment before I go, I could get a full week in. The longest I have been home in the last 10 years is a couple ofdays, at most,” she says.
Fry says she is aware of more and more seniors in the Bonavista area getting to the point where they are in need of dialysis.
“Even though it’s only an hour and a half to Clarenville, it’s sad because they have go by ambulance. It’s bumpy enough for someone who is younger. You’ve got a lot of senior citizens travelling back and forth. You’ve got people who have to give up their jobs because they’ve got to go back and forth with their parents,” she says.
Fry also has a growing concern for how it might affect her parents’ lives as her father has 22 percent kidney function left.
“He’s severely diabetic. If he has to start dialysis. My mom is going to have to drive back and forth with him. It’s not just three days out of his life, but three days out of hers as well.”
The local fight for dialysis unit
In September, The Packet was told by the Department of Health and Community Services there would need to be 10 to 12 medically stable dialysis patients in a region to justify putting in a dialysis unit.
Dialysis committee member John Norman says it’s a very unusual type of statement to make.
“We had confirmation well over a year and half ago when we had nine patients, plus two others that had relocated out of Bonavista to St. John’s because the travelling was too difficult. That was a total of 11 that had originated in the region and at that time the understanding was, and we discussed it with the minister of health, that those numbers would be locked in and taken into consideration,” says Norman.
The dialysis committee held meetings with Eastern Health before Christmas and will be scheduling a meeting with Health Minister Susan Sullivan and Eastern Health sometime in the New Year.
“We know of multiple dialysis units that have opened,” Norman noted. “The Burin dialysis opened with three patients. The Port aux Basques unit is similar and the Harbour Breton is scheduled to open this coming year. They also don’t have 10-12 steady patients. So none of the dialysis units that have come on stream in recent years have had those numbers,” says Norman.
Norman says the committee spoke with a well-known physician, Dr. Michael Paul, who specializes in dietary needs and other issues for dialysis patients.