BC's 100th lung transplant...a breath of fresh air
by Ken Donohue
Receiving a pair of lungs in August was enough for Greg Bousquet; being BC’s 100th lung transplant recipient is just dressing on the salad. In 1994, at the age of 31, Bousquet was diagnosed with Cystic Fibrosis (CF). “The diagnosis came out of the blue,” he says. “I’ve always had asthma, but I didn’t expect this and usually CF is diagnosed at an early age.”
Bousquet used to do a lot of climbing and cycling and he knew something was wrong when he had difficulty breathing and his energy level deteriorated. “The easy hills soon became difficult ones,” remembers Bousquet. “But I really started to worry when I’d walk a block and I’d be out of breath.”
Bousquet went to see a doctor who said it was just a bad case of asthma. But after several inhalers and medication that didn’t do much, he saw another doctor, who noticed something was wrong and sent him to a respirologist.
Bousquet remembers the respirologist using some big name and saying he might need a lung transplant. “I couldn’t believe it. I asked him what he was talking about? Then I started to worry…I had a 1001 questions. When would the transplant happen? Do I really need a transplant? But when the respirologist said I wouldn’t last long, I knew it must be serious.”
After Bousquet was placed on the transplant waiting list, his health started deteriorating. “In my mind I thought that I would get a transplant in two or three weeks, but I waited for more than year. Emotionally, it was very difficult;I didn’t think I would get a transplant. I also didn’t want someone to die to save me.”
Bousquet thought about his own mortality and lived day by day. “I re-wrote my will and made sure that my family and friends understood.” Then came the phone call…on the other line a pair of lungs were waiting. “It was a very emotional phone call, but I didn’t have much time to think. I made sure my cat was fed and then made arrangements to get to the hospital.”
Before he went into the operating room, Bousquet had about 30 minutes to himself. He began thinking about everything that was, and everything that was about to happen. “I wondered if this would be my last day…would I die? I then told myself that what will be, will be.”
The transplant was a success and when he woke up in ICU, he saw tubes all over, including one down his throat that helped him breathe. “ I was in a lot of pain when I woke up, but I said to myself¾I made it…here I am.” A few days after the transplant, Bousquet could tell a noticeable difference in his breathing. He could walk further and he was able to take deeper breaths.
Like most transplant recipients will tell you, the whole transplant experience has changed Bousquet’s life, and not simply because he has a new set of lungs. “I have a different outlook in life. People are much more important to me…I realize that life and relationships are fragile.”
While Bousquet is focusing on his recovery, he is very thankful to the BC Transplant Society, and especially the donor, who has given him a new lease on life.
BC Federation of Labour negotiates partnership with Transplant Society
by Tanja Hutter
From small acorns big trees grow. That observation came to mind when I heard that a BCTS volunteer suggested approaching the BC Federation of Labour and asking them to include Organ Donor Registration cards in one of their membership mail-outs. What transpired was an unprecedented commitment to not only contact 250,000 rank-and-file members within the year, but also to have shop stewards and union staff promote donor registration in the workplace.
“One out of every four potential organ donors is lost because the individual did not register their decision, nor did they share their decision with their loved one,” says Bill Barrable of the BCTS. “We have 450,000 registered donors now, but if we succeed in adding even a fraction of the province’s union members to that list, there could be a potential increase in transplants and a reduction in wait times.”
Recognizing the urgency and the implications of having 469 British Columbians waiting for transplants, the BC Federation of Labour offered their organizational resources to mobilize the largest unions in the province into action. In addition to providing registration cards, special promotional posters— featuring union members who are transplant recipients will be put up on union bulletin boards in workplaces across the province.
“There is a chronic shortage of hearts, lungs, livers and kidneys for transplant in BC,” said BC Federation of Labour President Jim Sinclair. “Many of those on the waiting list will die waiting if we don’t act.”
Usually, direct mailings alone will result in a five percent return. Printing and distributing brochures is quite costly and needs to be carried out in a controlled manner in order to save resources and track how effective a particular marketing initiative has been. Therein lies the beauty of this strategic partnership between BCTS and the BC Federation of Labour. Although the logistics of providing further personal follow-up within the workplace is difficult, some unions have already pledged to do so—which could potentially double, triple or quadruple the direct mailing response.
The completed registration forms, which can be returned postage-paid directly to the BC Transplant Society, have been coded to allow both partners to evaluate the success of the program. The Federation represents 475,000 members in British Columbia, but will only target 250,000 during this first phase. If the registration drive goes well, then the remaining 225,000 members will be contacted in a second phase.
Not ones for
letting the grass grow beneath their feet, preparations and mailings are underway.
Geoff Meggs, Communications Director for the Federation, explained: “Each
union is delivering in its own way. Most are enclosing the flyer in their
publications. Using this approach, we will deliver about 260,000 by the end
of January. Some are doing hand delivery… and the posters have already been
mailed out for use on bulletin boards.”
Back
to top
Transplant
Games...bringing people closer together
The Second Annual Canadian Transplant Games will be held August 6 to 11, 2002 in St. John’s Newfoundland. The following year, Nancy, France will host the World Transplant Games. [Nancy is located in northeastern France, 2.5 hours by train from Paris] To participate, one must be a member of the Canadian Transplant Association (CTA), be one-year post transplant and have stable health (exceptions possible only with permission of your transplant Physician).
The Games are what you make of them. They are for both competitive athletes and those who are newly active. The applause for the last person in any race is as loud as for the winner. If you can throw ball, play tennis, badminton, table tennis, walk, run, jump, swim¾you are on the team.
The primary purpose of the games is to celebrate life and the ability to achieve an active lifestyle and, at the same time, promote organ donation. This event allows transplant recipients, donor families, and health professionals, an opportunity to meet in a fun atmosphere. The friendships made and memories created are incredible. Be warned, the games are addictive! Go once¾and you’ll return for future games.
I went to the First National Games in Sherbrooke and had so much fun that I became CTA Coordinator for British Columbia. My goal is to build a strong BC team! We need you! So start training and saving now. Any suggestions regarding fundraising and team building are welcome.
If you would like to know more about the Transplant Games feel free to email me at: jrmack@telus.net or telephone 604 524-2457. You can visit the Canadian Transplant Association’s website at www.organ-donation-works.org
Go Team B.C.!
Maria MacKenzie
Regional Division Coordinator
Canadian Transplant Association
BC Region
The following
organizations have kindly supported the Give Life at Work
program by running internal promotional campaigns
City of Richmond
Istonish
Four Seasons
Hotel
(Vancouver)
Canada Post (Victoria)
Roger’s Foods (Armstrong)
Esquimalt Police Department
CIBC
(BC South District)
KAL Tire
Back to top
It only takes a minute to say thanks
There
are two kinds of gratitude:
the sudden kind we feel for what we take,
the larger kind we feel for what we give.
E.A. Robinson
Thanks…a single
syllable, and just
six letters.Yet, it is far from being a
simple word.
It is one of
the first words we learn,
but its meaning at that tender age is
often lost in our simplistic innocence.
To give thanks
and to be thanked is
one of those great human interactions.
But how do we thank someone for
giving us life?
This is the question
that every transplant
recipient, and every future recipient will
have to ask themselves. But it is a question
that doesn’t offer any simple answers.
There don’t seem
to be any words that
can adequately describe one’s gratitude,
for what is really the ultimate gift.
But when life
is breathed back into our
world, thanks is the only thing we have.
Donor families
often tell us that the one thing
they would like is to receive a letter of thanks
from a recipient of their loved ones organs.
Dear Donor Family:
To give a stranger the gift of a new life, so unselfishly, and in spite of the great pain and loss that you must feel, will always inspire me and fill me with wonder that such kindness exists. I will always try to honor your great gift by being kind, and living my life as fully as I am able. Please know I will always be true to the great gift that you have given me.
Not long ago I lay in the hospital and I would dream of what it felt like to feel the rain drip on my face, or what it was like to touch the soil again, and a thousand other sensations that made me happy before I got sick. I had begun to believe that these things would remain forever memories. Your gift to me has made them real again. I felt the rain that I left the hospital, and I have a chance to watch my son grow up.
I hope that everyday some of your pain and loss will be lifted, and that you may find some comfort in knowing someone is gratefully living a new life because of your kindness.
Thank you
Dear Donor Family:
I cannot begin to thank you for the joy you have brought me and my family. We can never begin to repay your generous and most thoughtful gift of life. Because of your unselfish gift, we are able to enjoy a quality of life that would not have existed in the near future.
Although I’m sure that the loss of your loved one is quite painful, I hope that you will find some peace in knowing that your loss was not in vain. The life which you lost is continuing on through my mother. For this, I am ever indebted to you. May God grant you peace, tranquility and abounding joy.
Thank you,
Back to top
The
BC Transplant Research Institute:
Melding
curiosity, collaboration, and innovation
Readers may recall an article about Barbara Perceval and her father, Ray Hollins that appeared in the Summer ’98 issue of the Transplant Times. In that issue, Ray shared his story of receiving a kidney transplant in 1992, just before his 72nd birthday. He only waited five months for his kidney. Today, at 83, he continues to do well. Living with his wife of 57 years, Lillian, he continues to create new oil paintings and swims weekly at a local swimming pool.
Like her father before her, Barbara was on dialysis and waiting for a kidney transplant when we were first introduced to her and Ray three years ago. She had been waiting for a transplant since February 1996, but in December 1999, Barbara received a new kidney and a year and a half later she is doing well and has a new lease on life.
After nearly four years waiting for a transplant, her disease and the rigors of dialysis began to take its toll on her body—resulting in nerve damage to both her feet and ankles. Medication had limited success in controlling the pain. Her only hope for recovery was a new kidney. She says that living donation—while not an option for her—would have greatly reduced the waiting time for a transplant and would have lessened some of her medical problems.
She encourages everyone to register as an organ donor and both she and her father want to thank the families that gave them a second chance at life.
Back to top
I am a 30 year old female with no children, who has been on peritoneal dialysis for two years. I was wondering what my chances are of having children after transplant? Would it be safe for me to have a baby and would the anti-rejection medications harm the unborn child? Your comments would be greatly appreciated.
Sincerely
J. Compton
“longing to be a mother”
The chances of getting pregnant and having a healthy baby after transplant
are quite good. The pregnancy should be planned and medications need to be
adjusted before conception. General guidelines would be to wait at least one
year after the transplant, and only plan on trying if there is good kidney
function and blood pressure is under control. In this situation, outcomes
are good, although there is an increased risk of miscarriage and, later on,
blood pressure problems for the mother. There is no increased risk of developmental
problems for the baby as long as appropriate medications are used.
If
you have a question for Mrs.
D,
please send it to:
Mrs.
D
c/o Transplant Times
BC Transplant Society
West Tower, 3rd Floor
555 W. 12th Ave.
Vancouver, BC
V5Z 3X7
100 transplants later...still breathing life into people
In April 1989, the BC Transplant Society performed its first lung transplant¾a heart-lung to be exact. Since then, more than 100 British Columbians have received a lung transplant. “Our goal is to match a limited resource to patients most in need and those most likely to have a successful outcome,” says Dr. Robert Levy, Medical Director of the BCTS Lung Program.
Levy says that the lung transplant procedure itself has become highly refined, and the major challenge now is long-term outcomes. At 5 years, 50 percent of lung transplant patients have chronic rejection. “We’ve made some huge advances since the world’s first successful lung transplant [20 years ago],” says Levy. “Our peri-operative care, and our ability to prevent infections are much better, and we are learning more about how to use anti-rejection medications to optimize successful outcomes.”
Refining the drugs to minimize chronic (long-term) rejection has been a major stumbling block. Levy says that all organ transplants wrestle with the same problems, but there are greater problems with lung transplants due to the fragility and sophistication of the lungs and lung tissue.
That same fragility of lung tissue is one of the reasons retrieving organs is difficult. “Most potential donors are critically ill, and their lungs are often affected,” says Levy. “The patient is on a ventilator¾in an ICU surrounded by germs, and the lungs are directly connected to the environment around the patient.
Despite the challenges, many recipients are doing well¾they work, travel and have a fairly normal lifestyle. “We might not always get a perfect outcome, but we are learning each year,” says Levy. “BC has very good clinical outcomes. Our program is relatively small, but with first rate results.”
Unless a patient needs a double-lung transplant, most will receive just one lung. Lungs are designed for extra capacity. “We only use about seven or eight litres of air per minute at rest, and about 50 to 60 litres per minute when exercising,” says Levy. “We never use our full lung capacity…healthy individuals may have to lose about 50% of their lung function before they even notice any breathing problems.”
Apart from clinical activities, the BCTS lung program is also recognized for a strong commitment to continued clinical and academic research, with many research grants awarded and important scientific papers in the medical literature. Some studies include: functional outcomes after transplant, optional use of anti-rejection drugs, and a focus on strategies to preserve donor organs. “Many of our patients are involved in our research projects,” says Levy.
Levy has some lofty goals for the program, which include doubling our current volume, adding a living donor lung program, attaining the best results nationally, and international recognition of our academic program. “I strongly believe that these goals can be accomplished,” says Levy. “They are realistic and anticipated objectives.”
Levy was excited
when talking about living donor lung transplants, but noted there are some
huge resource and technical issues that need to be overcome. “Living donor
lung transplantation isn’t a form of treatment for everyone requiring a lung
transplant, but as the bugs get worked out, it could be an important adjunct
to a high quality program.”
Back
to top
 |
|
|
|
|
|
|
|
|
 |
|
|||||||
 |
 |
 |
 |
 |
|
|||
 |
 |
 |
 |
|
||||
