Scottish girl gets new lungs after ten false alarms

Victoria Glen looks a picture of health, just weeks after have life-saving transplant surgery

“The woman who gave me the lungs is my guardian angel sitting on my shoulder. I only know her name and how she died.

By Caroline Wilson, Evening Times

The 28-year-old was given a double lung transplant in May after ten false alarms and seven unsuccessful attempts to operate.

And she says she can’t wait to dance properly for the first time in years at her celebratory “New Lungs” party.

The Strathclyde University graduate is urging the public to join the organ donor register as charities warn the gap between organ supply and demand is continuing to grow.

Three people die every day in the UK waiting for a transplant.

She said: “The most precious gift that can be given is to give someone their life back before it’s too late.

“It means the world to me and so many people out there.”

Victoria, who lives in Merchant City, Glasgow, was diagnosed with Cystic Fibrosis at the age of six months.

By the time she reached 26, the condition had ravaged her lungs and she was told a double lung transplant was her only hope.

Her lungs were functioning at 20%, she was dependent on oxygen twenty four hours a day and was frequently in hospital fighting life threatening chest infections.

After almost two years on the waiting list, she underwent major surgery to transplant two healthy lungs at Newcastle’s Freeman hospital.

Previous attempts to operate had been unsuccesful because the the organs had either been damaged, or she wasn’t well enough for the operation.

Victoria, said: “I remember when I woke up I didn’t feel any different and I thought, have they done it?

“I started to feel better after about a week and now I feel really really good. I’m not coughing anymore.

“I thought it was never going to happen.

“The woman who gave me the lungs is my guardian angel sitting on my shoulder. I only know her name and how she died.

“The best thing about the operation, is just being able to just walk around. Before the operation I was spending most of my time in hospital.

“What I’m most looking forward to is dancing at my New Lungs party. I used to do a lot of tap and ballet when I was a lot younger but haven’t been able to for a long time. “

Victoria is also planning to return to work as a part-time drama teacher in a matter of weeks and hopes to eventually teach full-time.

Gerard Falsey is hoping it will be fourth time lucky for him, after three unsuccesful attempts this year by surgeons to give him a lung transplant.

Gerard, also 28, from Hamilton, South Lanarkshire, has a rare and progressive lung condition that has left him completely reliant on his family.

He was born five weeks prematurely with one under-developed lung.

Shortly afterwards both his lungs collapsed and he wasn’t expected to survive.

However he rallied round and recovered but spent most of his childhood in and out of hospital after surviving several bouts of pneumonia.

His condition deteriorated four years ago at the age of 24 and he was forced to give up his job as a debt counsellor, and his cherished Celtic FC season ticket. He now relies on a powerful cocktain of steroids and antibiotics to stay alive.

He said: “I’ve been down to Newcastle three times but the lungs weren’t healthy enough. It’s very hard emotionally and physically because you are psyched up for it.

“I’ve got to keep hopeful about it though.

“It would mean everything to me to get a transplant. It’s a chance to have a normal life.

“To go on the register is an unbelievable thing that you can do for more than one person.

“It’s a real chance to be a hero.”

Although the majority of the population support the concept of organ donation, only 28 per cent of the population are on the register.

Emily Thackray, of transplant charity Live Life Then Give Life said: “It’s something a lot of us don’t really think about, even though any one of us could need a transplant at some point.”

To register as an organ donor go to NHS Organ Donor Register or call 0300 123 23 23. To find out more about organ donation you can visit http://www.lltgl.org.uk.

“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

Woman, 68, gets double-lung transplant after 10 false alarms

Congratulations to Jill Lane on celebrating the first anniversary of her lung transplant July 3rd, 2008. I wish her many more years of happiness in her second chance at life. I can't imagine the disappointment of having one false alarm, let alone ten. I've met Jill on several occasions and and admire her positive attitude and resolve.

No more false alarms for double lung transplant recipient Jill Lane.
Photo: Maggie Riopelle

By MAGGIE RIOPELLE The Tribune - Welland, Ontario

WELLAND — For eight years, Jill Lane spent her life attached to an oxygen tank, gasping for air, weakening as the days crept by.

After 10 false alarms over a donor being available, Lane was starting to wonder whether she would ever get the double lung transplant she needed. Especially when the call came in the middle of the night just one week later — again, a possible donor.

“It’s difficult on you, psychologically,” said Lane. “I got on the list in March of 2005 and was on it for two and a half years.”

This time when she got the call, Lane didn’t even bother packing her bags when she left her Welland home for Toronto. Her daughter, who was about to leave on a two-week vacation, instead also made the trip to Toronto with her mother and father.

This time, however, it was no false alarm, Lane was prepped for surgery and 10 hours later had two new lungs.

“It’s like a blur,” said the 68 year-old mother of three. “All of a sudden, that was it. It seems you always get things when you least expect them.”

Lane was born with a genetic disorder known as Alpha-1, which results in low levels or no levels of protein in the blood.

It was a condition she had all her life, but her doctors didn’t even know of the disorder until the 60s. So while she exhibited the symptoms, Lane didn’t get diagnosed until 2000 — up until that point, she thought she had asthma and emphysema. She was also susceptible to lung infections and pneumonia.

“It was a bit of a shock that I had a terminal incurable genetic disease,” she said.

Shortly after her diagnosis, Lane was put on oxygen 24 hours a day, seven days a week. While the oxygen was a necessary step, Lane said it took away much of her independence and created many fears.

She could no longer garden, play golf or play with her grandchildren. She worried every time she left the house that her destination might include a flight of stairs. She couldn’t drive her car and worried her oxygen tank would freeze up and leave her breathless and alone.

“It’s heavenly not dragging around the chord ... sometimes I go to blow my nose and I go to move it. It was so much a part of me, you know,” she said, adding that while the oxygen tank prolonged her life, it definitely didn’t make living much easier.

“I tried to get out as much as possible. It’s hard to get out when you’re on oxygen, you’re so weak. There must be loads of people on oxygen who don’t get out.”

Lane said the double lung transplant is “freedom,” a true “miracle” in that now she hardly recalls life with an oxygen tank and its chords.

Worry is now a thing of the past.

“I was always worried about stairs, now I just go out. I used to always worry about parking close enough ... people on oxygen have to worry all the time.”

While Lane was ill, she just couldn’t let go of her golf clubs. Now if the weather would co-operate, she looks forward to going out on the green. This spring, she also decided to go “hog wild” on her neglected garden. She can play ball with her grandchildren.

It’s been a year since the surgery and while Lane is still on about 20 pills a day, her anti-rejection medications are being lowered and overall, she feels quite healthy. The hardest part during this whole process, she said, was the wait for the transplant. She did, however, make a lot of friends who were also on the transplant list, some didn’t make it, others are doing very well.

“I’m really not complaining. A lot of people don’t make it. People on the list, waiting for lungs, are very ill. I was 110 pounds, gasping for air. I have almost forgotten what it was like. It’s a miracle, it’s amazing.”

While there is no cure for Alpha-1, Lane said the disease takes so many years to wreak havac on the lungs, it shouldn’t been an issue for the rest of her life. As far as every knows, she is the only family member with the disorder although her children are carriers of Alpha-1.

Lane said she now celebrates two birthdays — the day she was born and the day of her transplant, July 3. She celebrated the first anniversary of her transplant with a few other lung transplant recipients she has met along the way including Don Roy and Darryl Burdon of St. Catharines and Doug Summerhayes of St. Anns.

While Lane was never one to think a lot about signing a donor card — she now recognizes the importance of giving the gift of life to others.

“It’s only because of some family’s generosity that I was able to survive,” she said. “I was able to send a card to the family, thanking them for their sacrifice in their time of sorrow, for deciding to do that. It’s totally anonymous. I’ll never know who my donor was and that’s fine with me.”

According to the Trillium Gift of Life Network, one organ and tissue donor can save up to eight lives and enhance as many as 75 more.

People can register their consent to donation online at www.giftoflife.on.ca. As well, when people register for or renew a health card in Ontario, they can also register consent to donate organs and tissue and the information is stored in a Ministry of Health and Long-Term Care database and passed on to Trillium Gift of Life Network.

On the site, the transplant wait list includes 294 waiting for a liver, 1,201 for a kidney, 48 for a lung, and 44 for heart transplants. In total, there are 1,607 n the transplant wait list in Ontario.

Lane said she is supportive of any changes to the laws that helps increase the number of organ and tissue donors in the province — including presumed consent unless people specify that they do not want to donate.

“I think 98% of people would,” she said, adding that in discussions with others about organ donations, most would be willing.

It’s important, she said, to get the information out there and having been a transplant recipient and survivor, Lane never lets an opportunity pass by to inform people about the importance of organ donation.

“Don’t forget to sign your donor cards, we know that’s what saved our lives,” said Lane.

“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. 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. 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.

Patient who had lung transplant cancelled 11 times undergoes operation

Telegraph.co.uk

Brian Maloney, 60, had been prepared for surgery repeatedly over the last 15 months, but each time the lungs were either unusable or were given to someone waiting for a heart and lung transplant.

On Christmas Day Mr Maloney's hospital called just after he had finished his Christmas dinner to say an organ was available.

This time the operation went ahead and his partner, Hilary Grimshaw, says the surgery was the best present they have ever had and Mr Maloney is now recovering in the intensive care unit at Wythenshawe Hospital after the nine-hour operation.

He had previously been left needing oxygen 24 hours a day to help him breathe and struggled to get out of bed.

Mr Maloney was taken into theatre at 2am on Boxing Day and doctors worked through the night, finishing the operation at 11am.

Miss Grimshaw, of Westhoughton, Bolton, said: "We couldn't believe they were calling us in on Christmas Day, it seemed too perfect, it is the best Christmas present we have ever had.

"He was so sick and we had both started to think it was too late for him, that very soon he would not be well enough even for the surgery. It is a very big operation and he is still in intensive care but he is recovering well and we are so excited, Brian is totally overwhelmed.

"We want to thank everyone at the hospital who has helped us, the surgeons, the co-ordinators and all the staff, but especially the donor's family."

Doctors at Wythenshawe Hospital said they have never known a patient be so unlucky so many times but say Brian is now making a good recovery and within 48 hours of surgery he was breathing by himself.

By Monday he was sitting up in intensive care but he will need weeks of care before he is well enough to return home.

Surgeon Nizar Yonan said: "Brian had become very unwell so he was a priority case and he was lucky to survive to have this operation. When we heard there was an organ on Christmas Day we thought it was a very nice thing that he should get his operation on the 12th attempt."

Mr Yonan said Brian's case illustrates the need for more people to donate relatives' organs.

He said: "Brian has had to wait a very long time for this operation and that shows precisely why we need more donors. We call in two or three people each time an organ becomes available because we want to ensure we use all suitable organs.

"We do always warn people we may not be able to carry out the procedure and often people will be called in a few times before having an operation, but this is a very unusual case."

“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

I wish everyone Happy Holidays and all the best for 2009

Transplant hopes dashed by 'false alarms'

When I read that Brian Maloney had eleven false alarms for his lung transplant I was incredulous. I heard of one transplant patient having four calls to rush to the hospital for their transplant only to find the donor lungs were not suitable, but eleven false alarms is probably a world record. I have great empathy for Brian knowing how excited he must have been with each call only to have his hopes dashed. Hopefully the new Ex-vivo procedure described below will make lungs viable that would have been previously unsuitable.



By Amanda Crook Manchester Evening News

BRIAN Maloney desperately needs a lung transplant. But on each of the eleven times he's been summoned to hospital to prepare for the operation, he has been sent home without surgery.

Brian, 60, has been on the waiting list for a replacement lung for 15 months and every few weeks since then he has been called into hospital as doctors prepare and test donor organs.

But each time the lungs have been deemed unusable or they have both been given to someone waiting for a double transplant.

Doctors at Wythenshawe Hospital say they have never known a patient be so unlucky so many times.

Brian, of Bee Hive Green, Westhoughton, Bolton, needs oxygen to help him breathe 24 hours a day.

He said: "I desperately need a transplant now. Every time they call me in I have to prepare myself for the operation, it is impossible not to get your hopes up when it is the only option open to you.

"Mostly I've been called in at night and then have to wait - too excited and nervous to sleep - before being sent home in the morning.

"I am really pleased to have been called in for the operation because I know lots of people on the list die without ever being called in but it is tough," said Brian, who has decided to talk about his experiences to encourage more people to become donors. Mr Maloney's partner of six years, Hilary Grimshaw, said: "It is so traumatic preparing yourself for such a big operation and then going home without having it."

Surgeon Nizar Yonan said Mr Maloney's case illustrates the need for more people to donate relatives' organs.

He said: "We call in two or three people each time an organ becomes available because we want to ensure we use all suitable organs.

"We do always warn people we may not be able to carry out the procedure and often people will be called in a few times before having an operation but this is a very unusual case."

Mr Maloney, who suffers from the deadly condition pulmonary fibrosis, has signed up for a pioneering procedure which was tested at Wythenshawe last month.

Doctors now have the technology to use lungs from people who have not been kept alive by machines. Central to this is a new technique to test lungs 'ex-vivo' - outside the body - to check they are suitable for transplantation.

To find out more about organ donation and register as a donor call: 0845 60 60 400 or go to UK Transplant.

“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