Teen survives double-lung transplant, but is upset about missing One Direction concert

Music triumphs (Supplied photo)
Amanda Kakoz, 13, underwent a double-lung transplant recently, but missed her favorite band, One Direction, who stopped by Toronto last month for a concert.  Now, her only hope is to connect with them.

Brampton Guardian

ByRadhika Panjwani

BRAMPTON, Ontario— Every breath Amanda Kakoz, 13, takes, she sort of owes it to an organ donor.

Last month, the Brampton teen, underwent a double-lung transplant after battling pneumonia.

Amanda has pulmonary hypertension, a type of high blood pressure affecting the arteries in the lungs and the right side of her heart. When Amanda was a baby, her parents were warned that if medication failed, lung transplantation was the only cure.

Amanda enjoyed playing basketball up until recently when she couldn’t shake-off a flu which soon escalated into pneumonia. Distraught parents rushed her to Brampton Civic Hospital (BCH) and from there to Toronto’s Hospital For Sick Children (Sick Kids). When her health took a turn for worse, the Brampton teen, found herself on the Trillium Gift of Life Network’s (TGLN) organ wait-list.

“When Amanda was placed on the organ wait-list, we were worried because we knew it would be a long road to recovery,” said John Kakoz, 58, Amanda’s father. “But we had no doubt in our minds that Amanda would find her donor quickly. She was a miracle child as an infant and we knew she would do it again...”

After a month of waiting, a donor finally became available. On July 25, Dr. Thomas Waddell, a well-known thoracic surgeon, performed a double-lung transplant surgery on Amanda from which she’s now slowly recovering.  

Amanda, who considers herself as the most avowed fan of the English-Irish boy band One Direction, had literally etched the date of the band’s tour to Toronto (July 10) into her psyche and cajoled her parents into buying her the tickets. For two years, she talked of nothing else. Then, a week before the concert, she was hospitalized.

“She wanted to come home for just one day so she could see the One Direction concert,” Samantha Kakoz, 17, Amanda’s older sister said. “She’s very upset about missing them. Even now, she only listens to their music in the hospital”

Since the double-lung transplant, the Kakoz family, has pledged to raise awareness about organ donation.

“I know a lot of people who have been on the organ wait-list for years, waiting for a match,” said Samantha Kakoz. “When Amanda was seriously ill, not knowing what will happen was the worst thing. I look at organ donation from a different perspective now and see how important organ donors are...”

As of Aug. 22, there are 1,474 sitting on the wait-list for an organ and this includes the 1,033 people in need of kidneys, 72 for heart and 88 for lungs. The Trillium Gift of Life Network (TGLN) data shows there are 2.7 million organ donors in Ontario. Donor registrations however fluctuate widely across Ontario. In the GTA, where rates have traditionally been significantly lower than in the rest of the province, every community has reported an increase over the last three months.  

“The increase in donor registrations is encouraging, but we can and must do better,” said Ronnie Gavsie, TGLN president and CEO in a press release. “At a 23 per cent registration rate, Ontario sits well below the U.S. registration rate of 45 per cent.”

To become a organ donor visit www.beadonor.ca.

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

Donor Registration Links 

Cancer survivor awaits double lung transplant

Newfoundland, Canada woman says organ donations save lives

Doiron’s ovarian cancer diagnosis came in August 2009. Her last chemotherapy session took place that December. Doctors told her a month later she was cancer-free.

Jeanine and Kirk Doiron. — Submitted photo

By Andrew Robinson - The Telegram 

Jeanine Doiron of Mount Pearl says she is “terribly homesick” while staying at Toronto General Hospital, where the 34-year-old is waiting for a double lung transplant to treat pulmonary hypertension, an ailment she has lived with for four years.

“Toronto certainly isn’t St. John’s,” said Doiron with emotion in her voice.

2009 was a tumultuous year for Doiron.

Her diagnosis for pulmonary hypertension came only a few months before doctors informed her she had ovarian cancer. She often felt short of breath and tired in the leadup to learning about her conditions.

“Beyond scary is about the only way I can describe it,” recalled Doiron, who is originally from Witless Bay.

“It’s bad enough getting one, let alone the second diagnosis.”

Doiron’s ovarian cancer diagnosis came in August 2009. Her last chemotherapy session took place that December. Doctors told her a month later she was cancer-free.

She flew to Toronto two weeks ago after staff at the Health Sciences Centre in St. John’s determined that specialized medication was not doing enough to reduce her blood pressure and that increasing her dosage was not an option. Doiron has tried several medications over the last four years. Pulmonary hypertension is known to limit a person’s energy level and can cause heart failure.

She knew from the start that a double lung transplant may be necessary. Now Doiron is waiting for an appropriate donor to be identified.

“It could happen today. It might not happen for two years. It’s whenever the proper match comes along.”

Speaking to The Telegram, Doiron emphasized the importance of organ donation.

“There’s so many of us that need this. Our lives depend on it.”

Recovery is expected to take an additional three months following surgery, thus extending her stay in Toronto.

Taking time off work and leaving home for an indeterminate length of time has been hard on Doiron and her husband Kirk, but she said family, friends and her employer have been very supportive.

“My friends and family have been a rock wall for me,” said Doiron. “I’ve been very lucky.”

People back home have organized a dance and silent auction to be held July 26 at the Knights of Columbus on St. Clare Avenue in St. John’s.

Jeanine said staff at the Toronto hospital have been fabulous so far, and she’s grateful to have a sister living in Kingston who visits her as often as possible.

“She lives a few hours away, but she’s back and forth, thankfully,” said Jeanine.

Kirk Doiron said it has been hard to watch his wife battle through her health problems. He has taken on most household duties and provides all the emotional support he can. The couple has been together for 17 years.

“She has her ups and her downs, no doubt,” he said. “A young woman, 34 years old, going through that. Never drank. Never smoked. Never touched drugs.… She wonders what she did wrong. I guess it’s normal to wonder that kind of stuff.”

Kirk is optimistic about his wife’s chances of making a full recovery.

“She’s got the will to live and otherwise good health. She’s fighting, for sure.”

Anyone with items to donate for the auction next week can email jdfund@hotmail.ca or call 709-746-0443 or 709-691-8070.

Tickets for the dance and silent auction are $10 and can be purchased by writing to the previously mentioned email address or by calling 709-745-7650.

A bank account has also been set up at Scotiabank for the fundraiser under the name “Fundraiser for Jeanine Doiron.”

Its account number is 21113 00673 18.

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

Donor Registration Links 

Mom returns home after double lung transplant

Miss Kerr, from Adlington, said she could never thank her anonymous donor or their family enough for the gift of life. She added: “They have just given me this chance now to have a life and to spend every minute of every day enjoying it."

The Bolton News

A mother who underwent a double lung transplant is back home — in time to celebrate Mother’s Day with her children.

Natalie Kerr was afraid she would not live to see her children grow up after she was given a death sentence four years ago when she was diagnosed with pulmonary hypertension.

But she is now living without the aid of administered oxygen and is looking forward to the future with Brandon, aged nine, and Isabelle aged four.

The 30-year-old said: “When I think I am breathing with somebody else’s lungs, I am just so thankful.

“They have given me these lungs and they are actually working.

“I feel I have a duty to look after them. I wish I could show that person how much I am using my lungs and making the most of every moment.”

Following her diagnosis, the brave former Royal Bolton Hospital nurse never gave up hope and, with the help of The Bolton News and generous readers, raised £40,000 ($63,000) for stem cell treatment in America in 2009 to prolong her life.

In recent weeks her condition deteriorated, leaving her weak and afraid she would not live to see the end of the year.Miss Kerr, who had become increasingly reliant on administered oxygen, was finding everyday activities a struggle and was regularly passing out.

Just as she was beginning to give up hope, a donor was found for a double-lung transplant, and last month she underwent the operation that would change her life.

Miss Kerr was alone at home when she received the call — at 9pm on Thursday, February 16.

She immediately rang her parents, who were celebrating their wedding anniversary in London, but managed to get on the last train home to be with their daughter as she underwent a series of tests, before being told at 5am she was a match.

While being wheeled into theatre for the eight-hour operation, she admits she was “very nervous”
but sent her son a text message saying how much she loved him.

After the operation at Wythenshawe Hospital, Miss Kerr was transferred to intensive care and her family was warned she may be in hospital for more than six weeks.

But she amazed doctors and was allowed home early — just three weeks after the operation — and in time to spend Mother’s Day with Isabelle and Brandon, something she believes was meant to be.

It is still early days, and Miss Kerr has to wait for three months to find out if the operation was completely successful, but she says she can already feel a difference.

On Wednesday, Miss Kerr picked up Brandon from school for the first time since her operation — and was greeted by a round of applause from the other parents.

She said: “It is strange being able to breathe easily. I can actually feel the lungs working inside me.”

Miss Kerr, from Adlington, said she could never thank her anonymous donor or their family enough for the gift of life.

She added: “They have just given me this chance now to have a life and to spend every minute of every day enjoying it."

“I don’t want to go to sleep in case I miss anything.”

She is hoping to take her children to Disneyland and she and her family are determined to use her experience to encourage more people to join the organ donor register.

Her father, Eric Kerr, aged 54, said said: “I really would encourage people to sign up to donate their organs because there are so many people waiting.”

For more information about the donor register call 0300 1232323.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca
other Canadian provinces

South Africa, http://www.odf.org.za/

United States, donatelife.net

United Kingdom, register at NHS Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help 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. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Videos from TEDMED 2010 - Dr Shaf Keshavjee and Charity Tillemann-Dick

As reported in a previous post Dr. Shaf Keshavjee wowed the audience at TEDMED 2010 in San Diego last October with his presentation of the Toronto EXVIVO Lung Perfusion System that reconditions and repairs donor lungs that normally would be unsuitable for transplant.

TEDMED is one of the most prestigious annual events where leaders in the medical field discuss their ideas and I'm pleased to see that Dr. Shaf Keshavjee, who performed my lung transplant almost 9 years ago, was an invited speaker. The first speaker of the event, he followed double-lung transplant recipient soprano Charity Tillemann-Dick's opening performance and inspiring story of her struggles with idiopathic pulmonary hypertension and her transplant at the Cleveland Clinic in September 2009. I'm sure you will be as 'wowed' with both of these presentations as the audience was.

Charity Tillemann-Dick
Exactly one year ago to the day of this TEDMED talk, Charity awoke from a coma after having a double lung transplant. She now awes the audience with a beautiful aria and shares her remarkable story.

Dr Shaf Keshavjee at TED
Dr. Keshavjee mesmerizes the TEDMED audience as he unveils a breathing lung on stage and describes how this technology is saving lives.

“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 at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - 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 ShareYourLife.org 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 or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help 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. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Opera Soprano Sings Again After Double Lung Transplant and Open Heart Surgery

Submitted by Denise Reynolds RD EmaxHealth

Charity Tillemann-Dick, a world renowned opera soprano, was diagnosed in 2002 at age 20 with idiopathic pulmonary arterial hypertension, a serious condition characterized by abnormally high blood pressure in the arteries of the lungs that often leads to both heart and lung failure. Last month, after receiving a double lung transplant and having open heart surgery that saved her life, the young woman sang “Someone to Watch Over Me” and “O Mio Babbino Caro” to her doctors and nurses at the Cleveland Clinic.

Ms. Tillemann-Dick, whose full name is Charity Sunshine, kept positive about her disease and the difficult treatment that followed. She even continued to sing on international stages with heavy makeup to disguise her sallow skin. “When you’re facing a challenge like this, it’s important to plow through and do the best that you can and do what you want to do that’s good.”

Idiopathic Pulmonary Arterial Hypertension (IPAH) is thought to only affect about 5-10% of the population. It affects women more often than men. In many cases, the cause is unknown, but it is thought to have a genetic component.

Pulmonary hypertension is caused by a narrowing of the small arteries of the lung which makes it harder for the right side of the heart to circulate the blood to the lungs. Overtime, the right side of the heart may become enlarged and fail, called cor pulmonale. Symptoms include chest pain, dizziness, fatigue, and shortness of breath.

There is no known cure for IPAH, but several forms of treatment are available to control symptoms, such as calcium channel blockers and diuretics. Some patients are put on blood thinners to reduce the risk of blood clots.

Overall prognosis for the condition is poor; morbidity and mortality rates vary based on degree of the condition, the age of the patient, and the ability to respond to therapy. When treatment with medication fails, suitable candidates may be helped by a lung or heart/lung transplant.

After her own surgery, Charity began retraining her voice by humming and progressed to show tunes as her body strengthened. She has performed already this summer at the Swiss and Hungarian embassies. Dr. Ken McCurry, who led her nine-hour operation, said "It's always gratifying when you see a patient recover, but to have a patient recover this quickly and to this extent -- it is stunning.

“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: recycleMe.org - 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 ShareYourLife.org 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 (see allotransplantation). One tissue donor can help 75 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. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Whitby, Ontario teen to compete in World Transplant Olympics

Let's help Katie Sutherland get to the World Transplant Games in Australia this August. She needs $9,000 in total. Donations can be made at her donor page.

Read my post about Katie Sutherland's Lung Transplant after she was kept alive for an entire month with an external artificial lung system, the German-made Novalung device. She was in desperate need of a lung transplant but there was no matching donor lungs available and the external device kept her alive until a suitable donor lung was found.

BY PARVANEH PESSIAN Newsdurhamregion.com

WHITBY -- It's been only a year since Katie Sutherland lay in a hospital bed clinging to life, but the Whitby teen is getting ready to compete in an international sports competition.

Katie, 16, underwent a double lung transplant last year and since then has been building her strength back up to take part in the World Transplant Olympics being held in Australia this summer.

"Some people think that once you have an (organ transplant), you might just be in bed or not doing anything but we're trying to show that organ donation actually works so people are aware of that," said Katie, who is an avid soccer player.

Katie was diagnosed with pulmonary hypertension, a rare lung disorder that constricts veins and arteries in the lungs and forces the heart to work harder than usual to pump blood to the lungs.

Surgeons at Toronto's Hospital for Sick Children fought to save her life in a three-hour emergency operation that involved attaching Katie's heart to an external artificial lung* that kept her alive for 30 days until a double lung transplant could be performed.

The World Transplant Games promote the high levels of health and vitality that can be achieved after transplantation. Starting out with only about 100 competitors back when the Games were established more than 30 years ago, the event now draws up to 3,000 participants from up to 70 countries.

To support Katie's participation in the Games, where she'll be competing in the 100-meter track, ping pong, badminton and other categories, staff at Valentino's Hair Salon in Whitby are rallying around the teen to raise money to send her to Australia.

"We do fundraisers all year round but we usually pick one big one so this year we decided to support Katie," salon manager Teresa Abbatangelo said.

"She is one of our own clients and she has quite a great demeanor after what she's been through while continuing to do very well in school so we wanted to help out."

Valentino's will host a cut-a-thon at Katie's school, Sinclair Secondary at 380 Taunton Rd. E. in Whitby, offering students, faculty and all members of the public haircuts for $20 each.

Fundraising efforts have already helped Katie raise just over half her goal of $9,000 but she hopes to see even more success with the assistance of the community.

To book an appointment for the cut-a-thon, taking place from 10 a.m. to 4 p.m. on Wednesday, June 3, call Sinclair Secondary School at 905-666-5400.

To make a donation toward Katie's fundraising efforts to join Team SickKids in the competition, visit her donor page.

*About the Novalung
The $5,000 device, about the size of a CD case, is connected to an artery in the patient’s leg. Blood flows through it, across a thin membrane attached to an oxygen supply. Carbon dioxide is exchanged for oxygen, and the blood flows back into a vein in the leg. Merv.

“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

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