Record-setting transplant patient still feels healthy after 25 years

The Globe & Mail

When Colleen Kohse woke in a hospital room with a new heart and lungs, she tried not to think about how short her salvaged life might be and instead focused on the fact she could breathe.

On Tuesday (Oct 29), Canada’s longest surviving heart and double-lung recipient celebrated the 25th anniversary of her surgery, which came at the forefront of a wave of transplants that gave new hope to patients who were suffering from cystic fibrosis.

Colleen Kohse (middle) at B.C. Transplant offices
Photo: Rafal Gerzsak for Globe & Mail

“I’m really happy to be here and to be able to breathe deeply, though I’m hyperventilating a bit right now,” said Ms. Kohse, 54, who seemed healthy and vibrant, if a bit nervous facing television cameras at a news conference in Vancouver.

“After all these years when I look back I still find it amazing,” she said, thanking organ donors for giving people like her a second chance at life. “It’s not just a donation; it’s a living legacy the families and their donors leave behind. As you can see, people can go on for a long and healthy life, so people are giving that to other people, which I think is tremendous.”

In 1988, Ms. Kohse was sent to England for the surgery, which wasn’t yet being performed in British Columbia.

She waited two months for someone to donate a heart and lungs. Her own heart was healthy, but at the time surgeons liked to do the two organs “as a block,” she said. Her heart went to another transplant patient, a man who went on to live for 17 years and have two children.

“It was sort of like being Frankenstein because I had so many tubes and stuff coming out of me,” she said of waking up after the surgery. “But very shortly I was able to breathe and that was a big thing. My fingers were pink, my lips were pink and it was just a tremendous feeling. To go for all my young life not being able to breathe and suddenly to be able to get up and move around and walk – it was just unbelievable.”

Asked how long she thought she was going to live at that moment, Ms. Kohse said people with cystic fibrosis, a genetic disorder that affects the lungs and other organs, live so close to death they try not to think about that.

“I tried never to look at dying. I mean, people with cystic fibrosis, it’s always in the back of our mind because we have that short lifespan and we don’t plan for the future. We don’t plan ahead a lot of time because of that,” she said.

Dr. Robert Levy, director of the Vancouver General Hospital lung transplant program, said Ms. Kohse’s anniversary is a remarkable milestone.

“It’s a huge event … it really spans almost the whole history of lung transplantation,” he said. “People like Colleen Kohse were pioneers and at the very forefront of what was happening in clinical transplantation at the time. People like Colleen were explorers, going out, not sure whether they’d return. Like an astronaut, going to the moon and hopefully coming back.”

He said about 100,000 lung transplants have been performed worldwide since the early 1980s and in B.C. there have been 255 since the first in 1989.

Dr. Greg Grant, executive director of BC Transplant, the provincial agency that handles all transplants in B.C., said operations such as the one that saved Ms. Kohse’s life couldn’t take place without the donation of healthy organs.

“When we have to ask a family for permission to consider organ donation it’s a really tough time,” he said. “We see families reach out – and that’s what I find incredibly exciting, that at the time of their worst disaster, people look forward, they look forward for something good to happen out of this event.”

Ms. Kohse celebrated the anniversary by having cake with friends, family and medical staff at BC Transplant.

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Lung Transplantation Survival Rates Drop?

by Janet Grace Ortigas , The Guardian Express

Approximately, 1400 lung transplant operations are done in the United States every year. Hospitals all over the country carry out at least 20 to 40 operations a year, including more than 150 a year at UCSF and Stanford. The two Bay Area medical institutions announced that the patient survival rates a year after an operation ranges from 90 to 94 percent. However, national and local statistics show that 55 percent of lung transplantation patients survive after five years, and it indicates a drop in survival rates. The nationwide annual reports show that, only a third can expect to live for 10 years.

Dr David Weill, director of Stanford’s Center for Advance Lung Disease did his first lung operations in the 90s. It was still primitive then, but it became a lot better. The lung is the last organ to be successfully transplanted after multiple failed attempts in the 1970s to 80s. Doctors finally solved a couple of problems such as rejection and infection, which killed patients within days or weeks after the transplant. Since then, the one-year survival rate trends improved. Lung transplantation has become more common, but Dr Weill admitted that the mystery of that slow loss of lung function has not been solved. It is still unclear as to what causes most patients to die as a result of chronic rejection, and consequently the slow deterioration of the lung. Presently, lung specialists do not know how to stop or prevent this process.

Facts about Lung Transplantation

Lung transplantation is an incredibly complex operation. It is one option, a person in their final stage the disease can choose; usually after all other treatment options have proved unsuccessful, according to the University of Michigan Transplant Center. The operation requires surgical replacement of either one or two badly diseased lungs from a human donor. If patients have cancer, and they are too sick, having existing end of stage organ disorders, and infections, they may not be qualified.

Lung transplantation is not for everyone. The oldest patient qualified to receive a transplant is 65, but one can be as young as 18. The largest 5-year survival rate is about 50 to 60%. Diagnosis will indicate that the patient may need a single or double lung replacement due to cystic fibrosis. Because bacteria has settled in the lungs, which may spread and infect the new transplant, doctors tend to avoid the procedure.

The Risks of Lung Transplantation

With technology, improved surgery skills, and the work of pharmacologist, patients with single or double transplants survival rates and quality of life have improved. However, there are risks to such procedures. Statistics show that approximately 78 percent survive the first year, 63 percent survive for three years, and 52 percent for five years.

The National Heart Lung and Blood Institute report that the survival rate of double lung transplant is better than a single transplant, which translates to a survival rate of 6.6 and 4.6 years respectively. Doctors now use immunosuppressant drugs to counter lung rejection.

Major complications include rejection and infection. The immune system sees the new lung as a foreign object and a threat, thereby it creates antibodies, which may cause the body to reject the organ and the lung eventually fails. Rejection symptoms include: chest congestion, fever or flu symptoms, shortness of breath, and pain in the lung area. On the other hand, the infection can weaken the immune system, allowing viruses and bacteria to attack your system with little resistance. Long term medicines prescribed can cause diabetes, kidney damage, osteoporosis, and even cancer.

Patient Dilemmas

Aside from dealing with complications, patients requiring lung transplantation face surmountable problems. Patients have to wait for at least two years after diagnosis before qualifying. Many patients have died or will die while waiting. Nevertheless, there are patients who survived for many years without the transplant. The transplant is given to the sickest, according to Dr Steven, medical director of the lung transplantation program at UCSF. Allocation of organs is based on the vast differences in severity of one’s case. Since the establishment of the new allocation system in 2005, wait time has dropped, and so has the number of deaths.

Patients wait for months or even years. Transplants are usually subjected to ECMO or extracorporeal membrane oxygenation. A patient with failing lungs can no longer expel carbon dioxide. Thus, they are given a machine that takes the place of one’s lungs.  The machine pumps blood out of the body into a tube that passes through a tube, while adding oxygen and removing carbon dioxide. However, the patient stays in the hospital immobile, until the procedure has accomplished the desired results.

Written by: Janet Grace Ortigas

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Teen who smoked synthetic marijuana dies

This 'designer drug' destroyed the 14-year-old's lungs and led to his untimely death. Be on the lookout for brand names such as K2, Spice, Blaze, Ivory Wave, White Rush, Starry Nights and Vanilla Sky -- in hopes that yours or other children will not be harmed.

The drug is sold on the Internet in 50- to 500-milligram packets for $25 to $75 each. The drug can cause seizures, vomiting, high blood pressure, heart problems and psychological problems such as paranoia, according to the Drug Enforcement Agency.

By Richard Gazarik, Pittsburgh Tribune-Review

A Westmoreland County boy who underwent a double-lung transplant after synthetic marijuana smoked in a PEZ candy dispenser destroyed his lungs died Thursday in Children's Hospital in Lawrenceville.

Tonya Rice of Tarrs said her son, Brandon, 14, died at 8:21 a.m. -- exactly one month after the transplant -- from an infection that his compromised immune system could not stave off.

In the days since Brandon fell ill in June, she, her husband, Raymond; and their two other children maintained a constant vigil at his bedside.

"I never left him since June 14. Me and dad both," Tonya Rice said. "It was hard, very hard. He couldn't talk to us. We had to read his lips. A lot of times we couldn't understand what he was saying. He fought and fought and fought."

During that time, the Rice family has spoken out about the drug -- with brand names such as K2, Spice, Blaze, Ivory Wave, White Rush, Starry Nights and Vanilla Sky -- in hopes that other children will not be harmed.

A bill to ban the sale of synthetic marijuana in Pennsylvania was signed June 28 -- just weeks after the Southmoreland eighth-grader was placed on a respirator. More than 30 other states have banned the drug, and more are considering it.

Synthetic marijuana began appearing in Pennsylvania in 2008, according to officials from the National Drug Intelligence Center in Johnstown.

The drug previously was sold as incense or herbal smoking blends in tobacco shops, gas stations and convenience stores.

A spokesman at the state Department of Health said the drug is so new that there are no statistics about the number of deaths resulting from its use. The Centers for Disease Control and Prevention in Atlanta also doesn't have nationwide statistics about deaths stemming from the drug.

Brandon, who marked his 14th birthday in the hospital Aug. 21, was described by his mother as a "smart and caring" boy who loved baseball and fishing.

Dr. J. Douglas Bricker, dean of Duquesne University's Mylan School of Pharmacy, said that although he doesn't underestimate the danger of the ingredients in the man-made designer drug, smoking synthetic marijuana in a plastic PEZ dispenser would have been a "significant factor" in Brandon's death.

"It's (the drug) fairly potent, but nothing in the literature has been shown to cause any lung toxicity," he said. But Bricker said plastic -- such as that found in the candy dispenser -- heated at high temperatures will release highly toxic cyanide gas and carbon monoxide.

The drug is sold on the Internet in 50- to 500-milligram packets for $25 to $75 each. The drug can cause seizures, vomiting, high blood pressure, heart problems and psychological problems such as paranoia, according to the Drug Enforcement Agency.

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Early double-lung transplant patient celebrates 20 years of breathing free

This news is inspiring and encouraging for lung transplant recipients. The average survival of a lung transplant patient is 50 percent at 5 years so to make it to 20 years, especially for a cystic fibrosis patient, is remarkable. Howell Graham has a lot going for him being that he received a double-lung transplant. According to a study by a team of Johns Hopkins surgeons having both lungs replaced instead of just one is the single most important feature determining who lives longest after having a lung transplant, more than doubling an organ recipient's chances of extending their life by over a decade. Read more in this ScienceDaily Report

By Vicky Eckenrode StarNewsOnline.com

Howell Graham didn’t intend to be a landmark medical case. He just wanted to walk five feet without having to take a break.

On Friday, it will be 20 years since Graham became the first cystic fibrosis patient to undergo a double-lung transplant at UNC Hospitals when the procedure was just starting to be attempted around the country.

Now 48, he is thought to be the longest-surviving patient of the procedure.

“It’s a big day, Friday,” Graham said earlier this week from the living room of his home in Wilmington. “I’m glad to be here.”

Twenty years ago, doctors couldn’t give him that guarantee when he was a 28 year old facing an operation in its risky early days.

Graham adjusted early on to having cystic fibrosis, a chronic disease that causes the body to produce extra mucus that causes problems with the lungs and pancreas. Mucus build-up in the lungs creates issues not only with lung function but also lung infections.

The disease affects about 30,000 people in the United States, according to the Cystic Fibrosis Foundation.

For Graham, who was diagnosed at 2, it meant medicine and breathing treatments for years.

“Growing up, I guess I didn’t notice much. I really didn’t know there was much difference,” he said. “With cystic fibrosis, the lungs end up eventually destroying themselves. The sickness frequency became more and more the older I got.”

Through college at University of North Carolina Wilmington where Graham went to business school, his parents encouraged him to remain positive. His dad would tell him that one day doctors would figure out how to get him a new set of lungs, which in the early 1980s was unheard of, and Graham brushed it off as his parents trying to keep his spirits up.

He knew the reality that he had a progressive disease with no long-term solution available at the time. But he was still fairly active, riding his bike and water skiing, and for the most part life was normal.

So when doctors at UNC Hospitals told him in the spring of 1990 about a transplant operation that would allow him to finally have a set of healthy lungs, Graham passed.

The procedure was new and not enough operations had been done for his doctors to say how successful it would be. They warned him there would be a 50-50 chance of surviving.

The risk seemed too high for Graham.

But as the year went by, things quickly got worse.

“It was hard to just go up four or five stairs. They put me on full-time oxygen. I was getting short of breath brushing my teeth,” he said. “At that point, I had no life whatsoever.”

Graham was ready to accept the risk of the surgery.

On Oct. 8, 1990, surgeons spent 13 hours on the transplant operation, and soon after Graham began his recovery.

“It felt like taking a normal breath,” he said. “I don’t think I’d ever taken a normal breath until my transplant.”

About 1,600 people with cystic fibrosis in the country have received lung transplants since 1991, according to the Cystic Fibrosis Patient Registry.

In the 20 years since Graham’s surgery, a lot has changed, said Benjamin Haithcock, surgical director of UNC’s lung transplant program.

“The mortality associated with it was pretty high,” he said about the early days of the procedure. “It used to take a good half a day to full day to do this operation. Now, it’s down to five or six hours.”

He said developments in immunosuppressive drugs have decreased chances of transplant patients’ bodies rejecting the lungs.

Howell’s wife, Debbie, said doctors told him at the time he would be trading one set of problems – his breathing difficulties – for another set of issues – being on anti-rejection medicine.

His more vulnerable immune system made it particular dangerous when years after the transplant he overcame a ruptured appendix and then colon cancer.

“Howell has this drive in him that makes him unstoppable,” said Debbie, who met Howell the year after his transplant. “From my perspective, he seemed to take the news of complications from his ruptured appendix and diagnosis of colon cancer as if he had a cold. I guess this comes from his living with a chronic disease and pushing onward day to day.”

Early next year, the Grahams plan to hold a “birthday party” to mark the 20 years that have passed since his surgery.

They want it to raise awareness of the importance of organ donation as well as a new method UNC surgeon Thomas Egan – who did Graham’s surgery in 1990 – is pursuing to increase the number of lungs available for transplants by restoring the organs’ viability even if it’s been hours after a donor’s death.

“I want people to know that organ donation, it works,” Graham said.

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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

Double-lung Transplants Work Better Than Single For Long-term Survival

ScienceDaily (Apr. 28, 2009) — Having both lungs replaced instead of just one is the single most important feature determining who lives longest after having a lung transplant, more than doubling an organ recipient's chances of extending their life by over a decade, a study by a team of transplant surgeons at Johns Hopkins shows.

The finding is potentially controversial, researchers say, because there is already a shortage of organ donors, and more widespread use of bilateral lung transplants could nearly halve the potential number of beneficiaries. Though more than 1,400 lung transplants occurred in the United States in 2008, another 2,000 Americans remain on lung waiting lists, while 80 more are waiting for both a heart and lung.

"Our results suggest that double-lung transplants have a long-term advantage, and surgeons should consider bilateral lung transplants whenever possible," says study senior investigator and transplant surgeon Ashish Shah, M.D. But, he notes, "Not all lung recipients necessarily need a bilateral transplant. Many people with chronic obstructive pulmonary disease, including emphysema and different kinds of pulmonary fibrosis, can survive with just one lung being replaced, while other lung diseases, such as cystic fibrosis, usually require transplantation of both lungs. But double-lung transplants clearly perform better over time.

"What we're really after here is to find as many factors as possible that support long-term survival, so that we maximize the gains in average lifespan for all our patients," says Shah. Among the team's other key findings, presented April 22 in Paris at the 29th annual meeting of the International Society for Heart & Lung Transplantation, are that a perfect or near perfect match between the donor's immune-activating protein antigens with a recipient's and having a college education increases chances for long-term survival by 38 percent and 40 percent, respectively.

The study, believed to be the most widespread search ever conducted for factors that may extend the life of lung transplant recipients, are among the first to emerge from an analysis of 836 so-called long-term survivors of lung transplants, men and women who have lived at least a decade after transplant surgery between 1987 and 1997, an extended period for which detailed medical histories are now available.


Seventeen percent of all lung transplant recipients survive this long or longer with their new lungs, a figure that Shah, an associate professor at the Johns Hopkins University School of Medicine and its Heart and Vascular Institute, says is "pretty good, but not good enough" and the result of advances made in the last two decades with immune-suppressing drugs that prevent the recipient's body from rejecting the transplant.

"Until now, we knew how best to ensure that transplant recipients survive for the first few months after surgery, avoiding infection of the transplanted lung, and then staying healthy for the next two years to five years. But we never really knew what factors distinguished the long-term survivors from those who succumbed earlier, to either organ rejection or death," says Shah, who has performed over 100 lung transplants in the past decade.

Lead study investigator Eric Weiss, M.D., says that a patient's education, though key, is more likely a cover or surrogate, masking some other factor or combination of factors that are accounting for the increased longevity. Possible explanations, he says, are that better educated people may have better health insurance and access to care than those with less formal schooling, or that people with degrees are better at keeping their physician appointments on schedule, taking their medications as prescribed and sooner alerting their physicians to problems.

"Our results are a reminder to both patients and physicians that we still have a lot to learn about how best to prolong lung transplant survival, and that we need to be constantly evaluating our procedures to determine what is in the patient's best, long-term interests," says Weiss, a postdoctoral research fellow in cardiac surgery at Hopkins.

Indeed, he points out that a key advantage in double-lung transplants over single-lung transplants is that residual disease is not left behind in the spared lung. Moreover, when both lungs are replaced, the new lungs, which must breathe together as a pair, are already adapted to each other.

The vast majority of the lung transplants performed by Shah's team at The Johns Hopkins Hospital involve the fully paired organs, including 15 of 17 in 2008, 20 of 22 in 2007 and 20 of 23 in 2006.

In the latest study, long-term survival for lung recipients was also upped when they had "highly compatible" immune systems with their donor, with at least five of six so-called human leukocyte antigens (or HLA) the same as the donors. HLA antigens are proteins that sit on the cell surface and act like a secret passcode among the body's cells, triggering the body's immune system to reject anything that's not recognizable as its own. The better the match, Weiss says, the better are chances for immunosuppressive drugs to work over the long term at preventing organ rejection.

The study analysis involved a detailed review of the patient records for all single-lung and double-lung transplants performed in the United States and Canada from 1987 to 1997. The data came from the United Network for Organ Sharing (UNOS), a national network that allocates donated organs across the country.

Weiss says the team next plans to evaluate what aspects of education make the difference in long-term survival, with the goal of identifying independent factors that can influence better adherence to drug treatment plans or that could potentially be altered in people to extend the amount of time they can potentially live with their new organ.

Funding for the study was supplied in part by the U.S. Health Resources and Services Administration, the U.S. National Institutes of Health, and the Joyce Koons Family Fund for Cardiac Surgery Research.

In addition to Shah and Weiss, other Johns Hopkins researchers involved in this study were Jeremiah G. Allen, M.D.; Christian Merlo, M.D., M.P.H.; and John Conte, M.D.

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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