Meet Calgary’s Catherine Bedford, Alberta’s 61st double-lung transplant patient in 2015

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Catherine Bedford is a 50-year-old resident from Calgary currently recovering from a double-lung transplant she received in December 2015.

Catherine Bedford, a 50-year-old Calgary resident, has been through quite a journey in 2015.

As surgeons in Edmonton’s University Hospital performed a record-shattering 61 lung transplant operations in 2015, Bedford was the last person to receive the life-saving surgery during that extremely busy year.

“I can do whatever I want now — I’ve got my life back,” said Bedford, a former dental hygenist who had to leave her position because of her illness.

“It is so important to sign that donor card and talk about it with your families.”

Bedford first discovered something was wrong with her health during her early 30s when she was unable to do common chores, like shovelling sidewalks. And as someone who was physically fit, she could no longer jog.

‘Problems breathing’

“I just noticed that exertion just gave me problems breathing,” she said during an interview with The Lung Association March 2.

Bedford had two close calls while giving birth to her two children. When she was 32, she gave birth to a 10-week premature baby boy who, she said, “came out blue” because of a lack of oxygen from her lung health condition that wasn’t diagnosed by doctors.

Then, at 33, Bedford gave birth to a tiny, low-weight baby — the result of a lack of oxygen in her body. That is when doctors realized something was wrong.

“I was diagnosed when (my children) were four and five-years-old,” she said.

Doctors discovered that Bedford had Alpha 1-antitrypsin deficiency, a genetic form of emphysema.

From the age of 38, right through to her operation in 2015, Bedford had to be on oxygen, carrying large bottles with her 24 hours a day, seven days a week. Doctors also added her to a transplant list when she was 48 when her condition became worse.

Breathing_icon1The whole process was a journey for Bedford, as she was once taken off the list because she had resistant bacteria in her lungs. Doctors then gave her antibiotics for four months to fight the bacteria.

Once she was added back to the list on Dec. 9, 2015, Bedford says she received “the phone call” 20 days later.

Nerves rattled after phone call

That was a nerve-racking experience for Bedford who need medication and an ambulance ride because of an anxiety attack — something that is quite common for transplant patients when they get “the call.”

“The whole process was pretty quick,” said Bedford who also supports The Lung Association, Alberta & NWT every year with Christmas Seals and its other direct mail campaigns.

“You have to help out because it is so important to give to research.”

A long journey

Bedford, who is still getting treated in Edmonton to ensure her body doesn’t reject her new lungs, says she now has a new lease on life. She can now run on the treadmill — something she hasn’t done since her early 20s — along with playing sports she loves like slo-pitch, swimming, and water-polo.

As her recovery from surgery continues, Bedford hopes to meet the family of the person who gave her new set of lungs.

“I would like to say thank you — there is no gift better than the gift of life,” said Bedford.

“I am in the middle of writing a thank you card. It’s unfortunate that one has to pass on to save another person’s life, but that’s the organ donation cycle.”

Bedford now has a taste for adventure as she wants to go travelling with her family, along with horseback riding and skiing.

“I just want to do all of these things that I haven’t been able to do in a long time,” she said.

“It has been a long journey.”

—JC—

Donors, surgeons saved 61 lung transplant patients in Alberta

Organ donationWhat a breath-taking feat.

University of Alberta hospital surgeons — and those who committed to organ donations — saved the lives of 61 patients who were in need of a lung transplant in 2015.

Surgeons performed 61 lung transplants in 2015, smashing the old record of 44 set in 2014. Of those 61 lung transplants, 47 organs were from Alberta donors.

That is on top of the record that was broken by the same staff in liver transplant surgeries. Surgeons performed 83 of those surgeries in 2015 — eclipsing the previous record of 80 set in 2007.

Of course, none of those surgeries would be possible without the gift from living and deceased donors, says Dr. Norman Kneteman, Zone Clinical Section Chief for Transplant Services with Alberta Health Services (AHS).

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Tim Penstone, a double-lung transplant recipient in Edmonton, talks to reporters Feb. 25, 2016 at the University of Alberta hospital about his surgery and how it changed his life.

“These record were made possible thanks to an exemption team, including donor co-ordinators, intensive care staff, nurses, respiratory therapists, physicians, surgeons and staff,” said Kneteman in a press release.

“They care for both organ donors and organ recipients at this site and work tirelessly to support our transplant program.”

All lung and liver transplants are performed at Edmonton’s University of Alberta hospital, along with the Mazankowski Alberta Heart Institute, and the Stollery Children’s Hospital. The Lung Association, Alberta & NWT is also continuing to fund research to help lung transplant patients.

Tim Penstone, a double-lung transplant recipient and an active volunteer with The Lung Association, says his life-saving surgery changed his life.

“I owe my life to my donor,” said Penstone, who took part in a media conference with AHS celebrating the milestone Thursday, Feb. 25, 2016.

Penstone was on a wait list for a lung transplant for four months until he received the call to get a transplant. Since the surgery, his life has improved immensely. He no longer has to carry oxygen with him 24 hours a day and he is back to running his own soil-management company.

“Without a lung transplant, I may not be here today,” said Penstone.

THE NEED IS STILL GREAT

Despite the milestone, however, The Lung Association and AHS urges Albertans to talk to their families and commit to organ and tissue donation as the need still remains high. Alberta has one of the lowest organ and tissue donor rates in the country, according to AHS.

Some who are waiting for a transplant “continue to die” because a suitable donor was not made available, said Kneteman.

“The need for organs is constant,” said Kneteman.

Once deceased organ donor could provide life-saving treatment for seven people, according to AHS

In order to encourage others to commit to organ donation, the provincial government launched the online organ and tissue registry in 2014.

Albertans can also commit to organ and tissue donation at their local registry agent when they to renew their driver’s licenses or other forms of legal ID.

—JC—

WANTED: A home for lung transplant patients in Edmonton, Alberta

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Linda and Kent MacInnes.

LOGAN LAKE, B.C. — Kent MacInnes, a 60-year-old resident who lives in this small picturesque town in British Columbia believes he made the right — yet difficult — choice to help protect his family’s financial future.

Despite living with congestive heart failure and a fatal lung disease known as idiopathic pulmonary fibrosis, MacInnes has chosen to pull himself off the wait list for a heart and double-lung transplant — a surgery he desperately needs in Edmonton’s University of Alberta hospital.

“If something were to happen after my surgery and I didn’t make it, then I would probably bankrupt my family and leave my wife with nothing,” said MacInnes.

Edmonton is the only city in Western Canada that has the expertise, facilities, and resources to handle these kinds of complicated surgeries, including double-lung transplants.

Medical costs are covered for the surgeries, even for patients like MacInnes who are from outside Alberta. However, travel and living expenses must be paid for by patients and their families — costs that can be financially crippling for anyone who lives outside a 100-km radius outside of Edmonton, especially for MacInnes who lives 865 km away from Alberta’s capital city.

Patients who need lung transplants — along with their caregivers — are required to stay in Edmonton for more than six months before, during and after their surgeries so they can be treated immediately if there are complications, like organ rejections.

Costs for those patients and their caregivers can be a huge financial burden, forcing families to make difficult decisions.

The Lung Association, Alberta & NWT doesn’t want to have any family decide between life and financial security. Our goal is to raise money to eventually build a home for transplant patients like MacInnes where they and their caregivers can have a place to call home during their entire stay in Edmonton.

The facility will also have staff on site where patients — like MacInnes — can get the care and information they need to help them prepare and recover from their surgeries.

“The cost of transportation is crippling in its own right,” said MacInnes. “I would have bankrupted my family.”

MacInnes says if all he needed was a double-lung transplant, having a home — supported by Lung Association donors — for lung transplant patients in Edmonton would have made a difference for his family.

His entire family is supportive of MacInnes’s decision.

“It is frightening to think how little we would have left after having to uproot and move to Edmonton,” said MacInnes who found out he had IPF after a heart attack in 2006.

“We would have to give up everything that we have here in order to be able to afford to live (in Edmonton).”

Help The Lung Association find a way to help patients like MacInnes by sending us a donation today.

Alberta mom fully recovered after ‘miracle’ double-lung transplant surgery

 

It was just a routine gallbladder surgery for Edmonton’s Brenda Kinnear. However, it was that surgery that changed her life forever.

The mother of two boys in their late 20s and early 30s left hospital after that surgery on oxygen. A few days later, doctors warned her that she had end-stage idiopathic pulmonary fibrosis.

In November 2002, she was put on a double-lung transplant list and she waited for five years, but doctors had a hard time finding a match for the mother, a four-foot-11 woman who was in her 50s.Brenda Kinnear

As she needed a set of lungs that were from a 12-year-old child, her two sons — Darryl and Shannon Kinnear — offered to each donate part of their lungs to help their mother.

“Our sons spoke to the doctors and surgeons and basically told them that they were going to be my donors,” said the mother who also had offers from her husband to donate part of his lungs, along with two other relatives.

“Their mindset was that Mom needed Dad sitting beside her — not lying beside her. The also chose which side they wanted to donate. Daryl — being the oldest — asked which side is first; the right. He is my right lobe. Shannon wanted to be closest to my heart. He is my left lobe. Remember — I am not getting a full set of lungs — just lobes.”

It has been close to 10 years since the surgery and the mother says she can now breathe easier.

“If you had asked anyone who knew me 10 years ago if I’d ever be able to travel outside of Edmonton, let alone Canada, they would have laughed at you,” said Brenda Kinnear.

“So if you see me out and about, feel free to talk to me about transplants. If I’m hunched over trying to catch my breathe, just wait a few moments then I’m back and ready to go again. My husband and I love to talk about my miracle. “

Stay tuned to PoweredByBreathing.com in the next few weeks ahead to learn more about this amazing family.

Let us know what you would do if you could breathe better? Share your stories with us! 

Alberta woman looking forward to gardening again after double-lung transplant surgery

Joanne Cormier, a double-lung transplant recipient from Willingdon, Alta., says her life has already changed for the better.

It has only been a couple of weeks since her complicated, life-saving surgery, but Cormier says she is relieved that she no longer has a large bottle of oxygen attached to her 24-hours a day, seven days a week.

“I feel great — I feel 100 per cent better than I did before,”said Cormier who battled with chronic obstructive pulmonary disease (COPD) for four years leading up to her surgery in April 28, 2014.

COPD is an illness that slowly damages a patient’s airways — breathing tubes that carry air in and out of their lungs. The illness makes causes those airways to swell along with causing mucus to block those airways. COPD also damages tiny air sacs at the tips of those airways, which makes breathing extremely difficult.

The mother of two says her illness was caused after working as a waitress and bartender in a second-hand smoke-filled bar for more than 30 years.

Now, after her life-saving surgery, Cormier says she is grateful. She can now breathe easier.

“There are no words to describe my thankfulness (to the lung donor’s family),”said Cormier.

“What do you say to someone for that great of a gift? A thank you is just not enough.”

Cormier, who is still recovering in hospital after the surgery, says she is looking forward to playing darts again — something that she couldn’t do before the surgery — along with doing some gardening.

“I haven’t been able to do that in the past few years, so that kind of bothered me,”she said.

“I am hoping to have some kind of summer left when I get out of (the hospital).”

Since lung transplant patients have to spend long months before, during, and after their surgeries in Edmonton — including those who come from outside of Alberta’s capital city, like Cormier — the Lung Association, Alberta & NWT (TLA) offers some financial support to those patients and their caregivers.

That financial support is paid for by TLA’s generous supporters.

“I was given a $1,000 grant, and (TLA) gave me $600 to help pay for my rent in outpatient residence, and I was given $200 in food and $200 in gas so I can get back and forth,”said Cormier.

“This took a weight off my shoulders.”

To learn more about TLA’s Second Breath program, click here.

An Alberta double-lung transplant recipient has his ‘freedom back’

 

David Wheadon can now breathe easier after a successful double-lung transplant surgery.

The 55-year-old millwright worker was diagnosed with emphysema in 2002 — a chronic long-term disease that damages tiny air sacs inside the lungs making it hard to breathe.

Over time the illness will get worse, as was the case for Wheadon who spent the last few years attached to oxygen bottles.

Wheadon says his condition worsened in 2008 when he “collapsed at work.”

“I was on 10 litres of oxygen (a day) just to move, just to walk, just to do anything in daily living” said Wheadon.

After his surgery in February 2014, Wheadon says it took him a long time to get comfortable knowing that he will no longer have an oxygen bottle attached to him 24 hours a day, seven days a week.

“Now, I don’t even miss it — there is no more oxygen bottles in my house,” said Wheadon.

“I have my freedom back. I can do anything — I can go up and down stairs with no problems.”

Before, during, and after his surgery, Wheadon was given some financial supports from The Lung Association, Alberta & NWT’s Second Breath program during his long stay in Edmonton where his transplant took place.

Some lung-transplant patients — many from all over Western Canada who come to Edmonton for the complicated surgeries — must stay in Alberta’s capital city for at least five months.

Along with offering guidance to those patients, The Lung Association, Alberta & NWT (TLA) offers some financial help for those patients with food, accommodation and fuel costs with funds raised from TLA’s generous supporters.

“They give you support just by talking to you,” said Wheadon about TLA. “They know you’re there if you need to call.”

To learn more about TLA’s Second Breath program, click here

 

 

 

Calgary resident Jennifer Anderson, a double-lung recipient, is ‘powered by breathing’

 

Jennifer Anderson’s life went through a dramatic change when she was 26-years-old.

She had just finished her masters degree at the University of British Columbia and had just recently married her husband. She was living a healthy, active lifestyle.

However, in 2006 — that same year — she was diagnosed with pulmonary embolisms. A year after that, she was diagnosed with pulmonary hypertension, a terminal lung-related illness.

The illness causes blood vessels in her lungs to grow a thick lining, which means her heart had to work extra hard to push blood through her veins — a risk for heart failure.

“My whole life was turned upside down,” said Anderson.

“Not only was I on oxygen, but I was also on a drug called Flolan. It was infused directly to my heart 24-hours a day, seven-days a week. It was keeping me alive.”

Her only option to survive was to undergo a double lung transplant. As she waited for months as doctors were looking for a set of lungs for her, Anderson was confined to her two-bedroom condo in Calgary. She says walking was extremely difficult.

Now, after her successful surgery, she is urging Albertans to commit to organ donating as it saved her life.

“I am so grateful to be a double-lung transplant recipient,” said Anderson. “It is the greatest gift that I will ever receive.

Are you suffering from a lung illness? Share your stories with us! What would you do if you could breathe better?

Fill out the form below this post or email carol@ab.lung.ca.

The Lung Association, Alberta & NWT is also encouraging people to talk to their doctors about taking a simple breathing test.

For more information, call 1-866-717-2673.