Sunday, April 11, 2010

Living expenses soar while waiting for lung transplant

Further to my previous post this story gives more insight into Melissa MacPhail's plight as she deals with the financial burden of living a thousand miles from her home in Prince Edward Island, Canada while waiting for a lung transplant in Toronto.

Melissa MacPhail of Stratford, Prince Edward Island, Canada says breathing in oxygen through a tube 24 hours a day is not only uncomfortable but the oxygen burns her nose. She is in Toronto awaiting double lung transplant surgery when a suitable donor is found. Submitted photo

By Jim Day The Guardian

Melissa MacPhail is waiting for a new lease on life.

The wait could be long and expensive, perhaps prohibitively so.

MacPhail, 31, of Stratford has been living in Toronto since late January with her mother, Ann MacPhail, and her five-year-old son Keegan.

She is waiting for word of a suitable donor materializing to allow her to receive a potentially life-saving double lung transplant.

MacPhail suffers from systemic scleroderma, a chronic disease that attacks the autoimmune system. The disease causes her scarring and thickening of the lung tissues. She has chronic coughing, extreme shortness of breath, ongoing lung infections, painful arthritis and pulmonary fibrosis.

She hopes a new set of lungs will open the door to a much healthier and productive life.

Her goals range from what is commonplace for most to ambitious, like perhaps pursuing a career as a respiratory technician.

“I have so many plans for the future — to go travelling, to go to the pool swimming with him (Keegan),’’ she said.

But she needs new lungs. And she must wait months, maybe even a year or more, for them.

The daily grind is trying.

She is on oxygen round the clock, 24/7, breathing in through a mask or tubes.

“It’s uncomfortable because the oxygen kind of burns your nose,’’ she said.

“I’m 31 and everybody stares at me. People don’t see that very often. People don’t mean to be rude. I make light of it. I call it my jet fuel.’’

MacPhail hopes to eventually be fueled by new lungs. She has been accepted as a candidate for lung transplant at the Toronto General Hospital.

The program requires MacPhail to live near the hospital. She must participate in a regular exercise program three times per week to help keep her strength up. Her morning regimen at the hospital includes 20 minutes on a treadmill, 20 minutes on a stationary bicycle and a period of lifting weights with her legs and arms.

She also needs to attend the lung transplant clinic once a month to see a respirologist (pulmonologist). She has periodic testing done while she waits for her transplant to determine if her underlying heart function remains stable and to continually monitor her lung disease with CAT scans, chest X-rays and breathing tests.

MacPhail says the experience has been an eye-opener for her mother. MacPhail is part of a community of ill lung transplant hopefuls who celebrate the 27 lung transplants that have taken place at the Toronto General since Jan. 1, but remain anxious for themselves and the others among 45 people currently on the list of lung transplant candidates for the hospital.

“Now she is seeing other people in the same boat as me,’’ said MacPhail.

“She is saying, ‘Now I see how sick you really are’.”

All the while, with little energy to spare, the single mother is trying to maintain as active and normal a life for her son as possible. When Keegan is not attending his morning playgroup or afternoon kindergarten, MacPhail tries to keep him active in sports.

He seems to know he has to go with the flow, says mom.

“He says, ‘I know Mommy we are just here until you get your new lungs’. He’s done fabulous. I couldn’t ask for a better child.’’

MacPhail is managing to deal with the day-to-day demands of her temporary life in Toronto as a lung transplant candidate. What is a growing concern, however, is paying the bills.

Her home province of P.E.I. has not been willing to date to cover her living costs, which she estimates to run close to $2,000 per month.

“I’m starting to feel like it’s not going to happen now,’’ she said of her push to receive assistance from the Prince Edward Island government.

“The point I’m at now is what is going to happen when I’m not able to afford this (living in Toronto)?’’

The province says it is looking into options to provide assistance to people like MacPhail. Dr. Richard Wedge, the provincial director of medical programs, told The Guardian last week that the province is moving towards providing financial assistance for travel and living costs Islanders accrue when travelling off P.E.I. to receive an organ transplant.

He wouldn’t forecast, however, what level of assistance may be provided or when it may be introduced.

Generous donations from family, friends and even total strangers have helped MacPhail cover costs so far. Funds, though, are running low.

The Melissa MacPhail Lung Fund, set up at ScotiaBank, is still accepting donations. Donations can be made in person at any location or by mailing to ScotiaBank, 153 St. Peter’s Rd., PE, C1A 5P6.

Still, MacPhail draws on the support of friends and family to shore up her resolve to find a way to stay in Toronto until she is able to undergo double lung transplant surgery.

“Just talking it out makes you feel a lot better than keeping it in,’’ she said.

“Keegan is my medicine. He is such a happy child. He keeps me going ... and you pray - you pray, too.’’

Brenda Blacquiere of Charlottetown says her best friend is doing her best to manage under the weight of a mountain of burden.

“The toll is great,’’ she said.

“She is under a lot of stress ... she tries very much to live day by day and live positively.’’

Blacquiere says the need for continued fundraising because the government is not stepping up to cover expenses is “very frustrating.’’

She says it would be “devastating’’ if MacPhail did not receive a double lung transplant solely because she ran out of money to stay in Toronto.

Stacey MacPhail of Pleasant Grove is impressed by her sister’s determination in the face of so much adversity.

“She’s got a lot of stress on her but she’s pretty tough through it all,’’ she said.

“She has her up days and her down days.’’

Stacey says while continuing with fundraising remains an option, she notes the public can only be expected to give so much. She says the province needs to step up and help her sister.

Stacey says covering her sister’s monthly expenses to live in Toronto while awaiting the opportunity for a double lung transplant is “a drop in the bucket for the government to provide.’’

She hopes to help pave the road for her sister and “everyone else behind her for this assistance/aid from our government. We need to be on board like the rest of Canada.’’

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
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
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant.

No comments: