Canadian province kicks in for rent of lung transplant patient

People needing out-of-Nova Scotia medical care to get $1,500

Nova Scotian's needing a lung transplant must move to Toronto, over 1,000 miles away, for their life-saving operation. Expenses build up as they remain on the waiting list for donor lungs to become available, sometimes up to a year or more. Congratulations to Louis Brill of the Nova Scotia Lung Association for his compassion and tireless efforts to find some compensation for them.

By JOHN GILLIS Health Reporter
The ChronicalHerald.ca

People who have to spend extended periods outside Nova Scotia to get medical care may now apply for up to $1,500 per month from the province to cover rent.

Marilyn MacKay of Louisdale, Cape Breton, who has been living in the Toronto area since August 2007 awaiting a double lung transplant, will be the first to benefit from the assistance.

Abe Almeda, acting executive director of acute care for the Health Department, said he spoke to Ms. MacKay on Friday and told her the province would send a cheque for her December rent once she provides a receipt and will continue to pay up to $1,500 a month in rent as long as she needs to be away from home.

Ms. MacKay said she and her husband, Ken, felt very encouraged.

"Ken and I were extremely pleased this morning when we heard the news," she said from her niece’s home in Oakville, Ont.

In the fall, Mr. MacKay said the family had spent about $35,000 to keep his wife in Ontario. Despite assistance from the Lung Association of Nova Scotia and others, Mrs. MacKay was considering coming home and giving up her spot on the transplant list because the family was running out of money.

The assistance program is based on a proposal made by the Lung Association to the Health Department earlier this month. Anyone who has had to spend three months or more outside the province to get an insured health service may apply for the funding.

Lung association president Louis Brill, who travelled to Toronto earlier in the year to meet with Ms. MacKay and others in a similar position, said he was pleased Nova Scotia was going to help people facing big costs to get care they can’t get at home.

"We are thrilled (Mr.) d’Entremont has delivered on our proposal," he said in a news release. "We sought assistance for those in need and the government has answered the call."

Mr. Almeda said he believed there were about 10 Nova Scotians awaiting lung transplants in the Toronto area. But he said the help will be available to anyone who had to spend more than three months outside Nova Scotia for care, such as children who need bone marrow transplants.

The assistance will not be retroactive.

In order to provide immediate funding, the program has been created under a "ministerial exception." That means the minister has made the funds available before the creation of a formal policy and cabinet approval.

Mr. Almeda said department staff will meet in January to look at what assistance is offered by other provinces and whether Nova Scotia should help patients with costs other than rent.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

New Brunswick mom needs double lung transplant

"Trina will soon have to undergo an online interview at The Moncton Hospital with staff at Toronto General Hospital. She will then have to go to Toronto for a wide assortment of tests"

by dwayne tingley - Times & Transcript, New Brunswick, Canada

Melissa Rushton often stares at her niece and shakes her head in amazement.

Leah, who turns five next month, is a spinning ball of energy from dawn until bedtime and sometimes beyond. She just started kindergarten at Gunningsville School in Riverview, and it's a good thing because her mother Trina Murray needs those few hours each day just to catch her breath.

Melissa and Trina are sisters. Melissa said yesterday that Leah behaves just like Trina did when she was five-years-old.

"They are the same way -- go, go, go all of the time and I don't know how they do it," Melissa said. "Leah keeps Trina running most of the time. It takes its toll sometimes."

Five years ago, Trina became the first cystic fibrosis sufferer to give birth at The Moncton Hospital. A few months ago, she learned she's going to need a double lung transplant in order to survive.

"In some ways, it's been hard for Trina to see her little girl go to school this year," Melissa said.

"They are always together so it's hard to say goodbye. In another way, it gives her a badly needed break. It's a difficult situation with Trina needing the transplant. The little girl needs her mother."

Trina has had chronic lung infections and pneumonia and she has experienced other breathing difficulties in recent years. Her lungs are not functioning well and her overall condition is in decline.

"She gets winded and she's not able to do much physical activity at all," Melissa said. "Just walking can be difficult sometimes."

Trina will soon have to undergo an online interview at The Moncton Hospital with staff at Toronto General Hospital. She will then have to go to Toronto for a wide assortment of tests.

Officials in Toronto will then tell her when she must move to the Ontario capital so she can be put on a list for the double lung transplant.

"Anyone waiting for this kind of transplant must be within two hours of the hospital or it can't be done on time," Melissa said. "Unfortunately, Toronto is the closest hospital that does this operation."

The process is long, heart-wrenching and expensive.

The family is attempting to raise money to cover the costs of flying Trina to Toronto and her accommodations there. They also hope to send Leah up to Toronto several times so she can be with her mother.

"A lot of people in Albert County are telling us they are going to help because that's where she grew up and that's where most of us still live," Melissa said.

"The people at the (Dawson Settlement) church have helped and the Alma church has donated $200 and a painting for us to sell or put in a basket. We want to have some bake sales, raffles, barbecues, pancake breakfasts or whatever it takes.

"It's hard for us because we've never really done this before. We've got to make this work so Trina can have the operation that's going to save her life."

Anyone looking to assist in fundraising is asked to contact Melissa by e-mail at lungs4trina@gmail.com

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Lung transplant patient housing in Toronto

NOTE: THIS FACILITY NO LONGER EXISTS. FOR POSSIBLE FINANCIAL ASSISTANCE WITH HOUSING IN ONTARIO PLEASE CONTACT ANN MCGUIRE: annmcguire@rogers.com or Telephone 416-233-3614.

THE HIGHLANDS OF WOODBRIDGE
8040 Kipling Avenue
Woodbridge, Ontario
(click photo for larger image)

"the Civitan Club team has been able set the rent at $675 monthly for the luxury condos and includes all utilities - hydro, telephone, internet, etc. The units are completely furnished with brand new high quality furniture"

Tuesday I visited the Toronto Lung Transplant Civitan Club's housing project with Linda Lycett from Civitan. Linda received a single-lung transplant 16 years ago and has been a tireless advocate for fund raising to help our lung transplant community in Toronto.

Over the years the Civitan Club has worked hard to raise money to acquire suitable, affordable accomodation for out-of-town lung patients waiting for a transplant. Their dreams have now come true and enough money has been raised to purchase two spacious 1,100 sq ft units that will accommodate a total of four patients and their support persons.

People come to Toronto from across the country to wait for lung transplants at Toronto General Hospital, to get checkups after transplants or to stay while healing. (Once they receive their transplant patients must vacate the units after the 3-month recovery period). Living and housing expenses are major financial concerns for patients. They not only have to maintain residences back home but they are also burdened with thousands of dollars a month of costs in Toronto for rent, travel and food, etc.

Thanks to generous benefactors and donors, the Civitan Club team has been able set the rent at $675 monthly for the luxury condos and includes all utilities - hydro, telephone, internet, etc. The units are completely furnished with brand new high quality furniture and the gourmet kitchen is completely outfitted with top-of-the-line appliances. The cupboards are fully stocked with very high quality dishes and cutlery. Special deals were offered by suppliers and some items were donated outright. Many upgrades such as flooring, etc. are included and Civitan members have donated their time and skills to further enhance the amenities such as installing a luxurious ceramic backsplash in the kitchen.

The common living room has a brand new flat screen television and comes with cable tv supplied. The furniture and beds are top-of-the line (patients must provide their own bedding). Here's a layout of the Sienna unit that Civitan Club has puchased two of:

click for larger image

Some of the other amenities:
• A private party room with bar, an adjacent billiards and cards room, and a catering kitchen, complete with espresso machine... which you can reserve for get-togethers with family and friends.
• A well-equipped fitness room where you can work out, with his and hers saunas and change rooms.
• A separate lounge and meeting room.
• Two furnished guest suites for when you have visitors from out of town.

I was deeply impressed by this home-away-from-home that the Toronto Lung Transplant Civitan Club has provided for patients waiting for their life-saving surgery. And because of the common living area, patients and their loved ones in similar circumstances will be able to bond with each other and share their ups and downs, knowing what each other is going through. From my own experience, I know they will quickly become a family.

The Civitan members are to be commended for this wonderful achievement and I am in awe of them.

Contacts for information or to make a donation:

The Toronto Lung Transpant Civitan Club Inc.
600 The East Mall, PO Box 11546
Etobicoke, ON M9B 6L1

Secretary Ann McGuire
annmcguire@rogers.com or
Telephone 416-233-3614.

Treasurer Judy Clarke
jclarke100@sympatico.ca
Telephone 905-689-5297.

President Mavis Bullock
ltrimble917@rogers.com
Telephone 416-438-9927

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

A short, full life reaches an end

From the Winnipeg Free Press, Canada:

Lung transplants didn't dull his zest

By: Meghan Hurley

CORY Connell spent so much time at the Children's Hospital, the nursing staff started putting him to work.

"They really loved him there. He was there for a long time, so they got to know him really well," his father, Rene Connell, said. "He was like a Tasmanian devil. He was everywhere, so they put him to work."

Connell -- the youngest Canadian and first Manitoban to have a double- lung transplant -- died Sunday, September 7th at the age of 34.

Connell's family remembered him Monday as a fighter who wouldn't give up despite two double-lung transplants.

"It was just amazing. He fell in love, got married and he got to see his nephews and niece born and his brother married, his other brother graduate from university and he never would have seen any of that," said his mother, Joan Wardekker. "My most fond memory was when we had his first transplant. For the first time in his life, he was able to play hockey with his brothers."

Connell's family flipped through old photos Monday night, remembering a man who worried about everyone but himself.

"He was a nucleus that kept a lot of people together because everyone was around him," his stepmother, Denise Connell, said. "He keeps everyone together."

Connell's lungs were severely damaged when he was five years old in a fire he accidentally started while playing with matches.

He spent a long time in the hospital and when he was released, his lungs were in such bad shape that he needed a transplant.

In 1991, Connell's family faced a major dilemma -- they had to come up with a way to pay for daily living expenses in Toronto while their son had his first transplant. That would cost about $40,000 a year for Connell's father, who took an unpaid leave from work to care for his son.

The Winnipeg Free Press established a trust fund named A Chance for Cory to help Connell's family pay for non-medical expenses. Manitobans who donated to the trust fund raised more than $80,000 for the family.

"It was scary, because you put your life on hold for two years," Cornell's father said. "The Free Press and people in Winnipeg made it easier to do that. This sure took a lot of worry and stress out of the situation."

n 1997, Connell had a second double-lung transplant after his body began to reject the new lungs from the first operation.

Shortly before his second operation, he got engaged to a woman he met while they were both selling vacuum cleaners door to door. They got married on Valentine's Day in 1997.

Instead of flowers, donations can be made to the Winnipeg Humane Society.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Civitan Club provides affordable housing for lung transplant patients

NOTE: THE FACILITY MENTIONED BELOW NO LONGER EXISTS: FOR POSSIBLE FINANCIAL ASSISTANCE WITH HOUSING IN ONTARIO PLEASE CONTACT ANN MCGUIRE: annmcguire@rogers.com or Telephone 416-233-3614.

The Toronto Lung Transplant Civitan Club's major community service project has been to raise enough money to acquire affordable accommodation for out-of-town patients who must live near Toronto General Hospital (Ontario, Canada) while waiting for a lung transplant. Some patients wait for months or years before they get the call for their "Gift of Life". - (read the CBC News Report about the plight of Marilyn MacKay of Nova Scotia who has spent her life savings, over $20,000, waiting in Toronto since August, 2007 for her lung transplant).

I am very happy to report that the Civitan Club's dreams have finally been realized. Linda Lycett and her group have my heartfelt congratulations. I'll let Linda, double-lung recipient, tell the story in her own words:

"Hi Merv
After all these years of fundraising and ripping out our hair, I am happy to let you know that the condo units have finally come to fruition, and we will be housing patients by mid-September.

They are located a block and a half north of #7 Highway on Kipling Avenue in Woodbridge. We got the keys this weekend, and will be going out next week to pick out all the furnishings. We were extemely lucky to have 8 twin beds donated by Kingsdown Bedding and a substantial gift card from Hudson's Bay Company. (We decided on twin beds because the support person is not always a spouse).

Some of the other clubs and the patients have donated dishes, microwaves, etc. and we have also had some very generous monetary donations that we will be able to put directly into the rest of the furnishings. We are going to put a large TV in the living room and one in each bedroom. The common area - kitchen, living room and dining room will be shared, but they will have their own bedrooms and washrooms, running down each side. There is also a laundry room and large balcony in each unit.

This has been very exciting, and although it seems to have been a long time coming and an unbelievable amount of organization and work, it is finally becoming a reality.

Ursula Dignard, the Social Worker with the Lung Transplant Group has been giving patients my name and number to call regarding Rental Applications and we have two couples ready now who are waiting to move in. If you are aware of any patients who are in the process of moving to Toronto and looking for reasonable accommodation, please feel free to have them call me* and I will send them out an application. The rent will be $675.00 and this will include all utilities - hydro, telephone, internet, etc. *(e-mail me for Linda's contact info - Merv.)

If you need any more information, please feel free to get in touch with me at any time, but I thought with your wide range of contacts and patients, you may be able to pass this on for us.
Linda Lycett."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Nova Scotia considers additional funding for out of province transplant patients

From The Chronicle Herald, Halifax, N.S., Canada:

By The Canadian Press

Nova Scotia is considering what it can do to help defer the costs of patients waiting out of province for procedures such as lung transplants, the province's health minister said Thursday.

Chris d'Entremont confirmed the options included looking at additional funding for such things as living expenses.

"We're looking at the numbers right now," d'Entremont told reporters outside the weekly cabinet meeting.

He said a review was underway to determine where money could be found to fund what would be a "drastic policy change" that could cost tens of millions of dollars.

The minister said with thousands of Nova Scotians having to go outside the province for surgeries and treatments tough decisions would have to be made if more help is offered.

"Are we going to cover airline tickets, the hotels or the extended long stays like a double lung transplant recipient? We need to really look at that and really have an idea of what kind of costs and what other programs we're going to maybe have to put on hold in order to cover it."

D'Entremont said that he wasn't sure how long such a review would take, but added that if more help where to become available it wouldn't be in the immediate future.

"We're not ruling it out, but we're taking our time to look at it correctly," he said. "It would probably have to be in another budget year because it is a large item."

Nova Scotia currently pays for operations and medical costs for patients waiting for lung transplants, but only Newfoundland and Labrador covers other items such as travel and accommodations.

The program in that province provides up to $2,200 per month towards a patient's living expenses as well as money to cover air travel so spouses can visit.

Nova Scotia has been feeling heat over the issue after media reports about a double lung transplant patient from Cape Breton who maintains she may have to return home without her operation because of high living expenses in Toronto. (read the CBC News Report about the plight of Marilyn MacKay who has spent her life savings, over $20,000, waiting in Toronto since August, 2007 for her lung transplant)

D'Entremont said the province was continuing to explore ways to help patients through various associations and community fundraising initiatives.

Read a follow-up article in the Aug. 22 issue of The ChronicleHerald.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation