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Taking Flight: Inspirational Stories of Lung Transplantation

; Compiled by Joanne M. Schum

340 pages; quality trade paperback (softcover); catalogue #02-0497; ISBN 1-55369-684-0; US$27.50, C$31.50, EUR22.50, £16.00

Lung transplant is a life-changing surgery that extends and enhances life due to organ donation. Recipients of lung transplant share their stories of success.

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About the book      About the author      Sample excerpts      Catalogue info

About the Book Lung Transplantation is still relatively new compared to other transplantation surgery. The first successful heart/lung transplant took place in 1981, with the first successful single lung transplant taking place in 1983. It was not until 1986 the first successful double lung transplant takes place. Even more recent is the living lobar transplant which the first successful one being in 1990. The survival rate continues to rise with the introduction of new surgery techniques, drug therapies and physical therapy. Often those given the option to have a lung transplant, have no place to turn and learn about the success and accomplishments of those receiving a single lung, double lung, or heart/lung transplant. It can become overwhelming being in the process of lung transplant and not hearing how the majority of people do afterward. Well the majority are out living very full lives. These lives include, school, play, marriage, adventure, sports, careers, travel, volunteering, retirement and enjoying life and breathing. Family life is enhanced and new exciting opportunities open many eyes. But where can you read about this new beginning, new life, new breath you are given? Well, until now, there was no place. So that has changed with this book. Taking Flight is a collection of stories from around the world, from recipients of all ages, all lung illnesses and what these recipients are now doing in their lives. Taking Flight is an opportunity to see that organ donation does work and that lives return to normal after surgery. Taking Flight can inspire those who pre transplant to see what they may be able to accomplish one day. It will bring to light that this is a great option for someone with end stage lung illness and your dreams are possible. For someone who has had a lung transplant, it is an inspiration to see others doing many of things you are now accomplishing yourself. An affirmation of sorts. The butterfly theme is a symbol to those who have had a lung transplant and experienced the life within them and around them opening up and taking off. Many of these stories tell of a life long lung condition that did not allow them to take off into life like so many others do. But now they can and they take every opportunity that is given to them to go out and experience life. It shows that the very young are able to run, play, go to school, and do the things they dreamed of. It allows young people to pursue their dreams of a career, or marriage and finally making that much desired pursuit of a goal, a reality. For those who are retired, it allows them to spend time with family, friends, travel and become active once again. Taking Flight is a starting point for those who are, considering lung transplant, or have had a lung transplant. From here you will soar and surprise, grow and learn, experience and share, while you breathe and spread your wings and fly. Click here to read about Karen Couture's LUNG TRANSPLANTATION HANDBOOK Shirley Jewett's I CALL MY NEW LUNG TINA: INSPIRATION FROM A TRANSPLANT SURVIVOR

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About the Author Joanne Marie Schum is the youngest of seven siblings of George and Katherine Schum. Growing up in the Rochester, New York area with Cystic Fibrosis (a genetic lung illness), Joanne led a rather normal life, attending college, working in her chosen career field and being with friends and family. As she reached her mid twenties, life became increasingly more difficult until it was nearly impossible to maneuver and have any quality in her life. That is when a lung transplant became the top priority in her life. She temporarily relocated to Chapel Hill, North Carolina while waiting for a bi-lateral lung transplant. She received her much anticipated transplant at the University of North Carolina Hospitals Chapel Hill, on September 12, 1997. Her lung transplant has allowed her to become involved with many organizations: volunteering as a speaker; writing for various Cystic Fibrosis and lung transplant newsletters; board member; and mentor. Never an athlete in her pre-transplant days, she has taken to biking, running, walking, swimming and a participant in the 2000 and 2002 United States Transplant Games. She no longer passes up an adventure and can be found driving tractors, motorbikes, and has also flown in a High Performance Schleicher ASK-21 Sailplane. Her continued great health will allow her many more days with her new "wings of breath" so she can travel, work, play and enjoy her family and friends.

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Sample Excerpts

Introduction

It is 11:30 p.m. The phone interrupts sleep that has just begun. A voice on the other end tells a tale of woe I have heard before. Someone had a bad headache two days ago; it turned out to be a cerebral hemorrhage, and a young person is now lifeless. But the heart still beats, and the chest moves up and down compliments of a ventilator. "What is the pO2?" I ask. "Is the chest X-ray clear?" Which of the many potential recipients has been allocated these lungs? And so begins another "Inspirational Story in Lung Transplantation."

It is an honor to be asked to pen an introduction to this anthology by one of my patients, Joanne Schum. The transplant surgeon gets the bulk of the credit for the procedure. But there is an army of unrecognized people who go about their jobs through the night and day making the miracle of transplant happen: the hospital telephone operators, here and at many other centers; the pilots and drivers of the organ retrieval teams; the myriad operating room staff at the donor and recipient hospitals; the nursing staff caring for a patient who they hoped would wake up; the transplant co-ordinators who intrude when it is clear that life has been extinguished, only to attempt to ignite other lives through long hours of monitoring, treating, and communicating with yet other co-ordinators and transplant team members; and afterwards, the pulmonologists and coordinators who shepherd lung transplant recipients through a new life.

And for every inspirational story there is usually a tragic loss- a young driver testing immortality, a despairing suicide victim, someone on the wrong side of a senseless violent act, a terrible sudden headache... and usually family members who themselves received a phone call they never wanted, and must come to grips with a sudden unexpected catastrophe. Fortunately some think of the good that may come to others through organ donation.

There are so many untold stories... of sick patients deprived of the opportunity of transplant because there are too few donors, of patients who trust us to deliver them from a life that has become miserable but who sadly do not survive the risky procedures we boldly attempt. Imagine! To take an organ functioning in one person, and transpose it into another! An idea that was virtually implausible fifty years ago is commonplace and limited only by the number of available donors.

It has been a privilege to be able to participate in this incredible endeavor. We go into medicine to help our fellow man, but the opportunity to make such a difference in someone's life is rare. Sometimes, truth be told, I would rather the phone call at night be a wrong number so I can go back to sleep. But there is no doubt that we have one of the most rewarding jobs in medicine... I like to marvel at the nice slow up and down motion of the chests of lung transplant recipients when we make rounds and catch them sleeping. We cling to the hope that the change we have made will last forever, or at least for a very long time. But this is one of the many challenges that lie ahead, along with the problem of too few lungs to transplant.

I hope the reader enjoys 'taking flight'. The courage of our patients is certainly an inspiration to us in the lung transplant field, and should be an inspiration to anyone who chooses to partake of their stories. Thank you, Joanne Schum.

Thomas M. Egan, MD, MSc.
Professor of Surgery.
Director, Lung transplant Program.
Division of Cardiothoracic Surgery.
University of North Carolina Hospitals Chapel Hill

June, 2002

FOREWORD

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." --A. Einstein

This is a book of miracles.

I know this to be the case because, in my career at Sandoz (later Novartis) Pharmaceuticals, I have had a front row seat to witness the miracles that have taken place over the last twenty years. During that time, as was noted at the just-concluded meeting of the American Transplant Congress, transplantation has progressed from an experimental procedure to the treatment of choice for end-stage organ disease.

The revolution in organ transplantation has paralleled another revolution: the information revolution. It was through this revolution that I first came in contact with the editor of this book, Joanne Schum, otherwise known as luckylungsforjo@aol.com, on a transplantation newsgroup. It was Joanne who invited me to be a guest at an Internet chat. At this chat, I was able to share my insights into transplantation from a physician's and pharmaceutical corporation's point of view with some very special people - individuals who had undergone lung transplantation.

I call them very special people because progress in lung transplantation, for a number of reasons, lagged behind kidney, liver, heart and even pancreas transplantation. There were special circumstances that surrounded the replacement of the organs that provided the breath of life, and these special circumstances gave rise to problems that have only gradually yielded to the persistent efforts of medical science. Yield they have, however, and some of the inspiring (pun intended) stories of the bravest pioneers - the patients themselves - can now be presented to you in this volume.

Here, among others, you will meet

... little Maggie Mansfield, a child who loves butterflies, whose insidious lung disease forced her heart to work so hard that it aged twenty times as quickly as she did. Fortunately, through her courage and the selfless generosity of someone she did not know, she was given her own new wings with which to fly...

... Colonel Joe G. Driskill, a veteran of many battles, who found himself chained to a tank of oxygen, and who fought the hardest battle of them all against a disease called emphysema - and won the fight with the help of an anonymous cavalry...

... and "Lucky" Lee Starr, an indomitable person with an equally indomitable sense of humor, who learned about alpha-1-antitrypsin deficiency - and who, with the help of an unknown donor, was able to beat the odds, not to mention a highly unfavorable tube-to-orifice ratio.

The stories of their brave struggles against lung disease, and their eventual triumph, will move and inspire you, as they have me. I hope, in fact, that they will inspire you to be heroes, as well - not heroes whose names are recorded in a book like this one, but heroes' heroes - heroes before whom even the brave souls whose stories you will read stand in awe.

I am talking about the unknown, the anonymous, the secret heroes - the organ donors, and their families, who made these inspiring stories of courage possible. I hope that after reading these stories, you will be inspired to consider organ donation, and to talk about it with your family. The Talmud relates that one who saves a single soul is considered as if s/he has saved an entire world - and should the circumstances arise, each of us has the potential to save many worlds with organs for which, at that time, we will have no further need.

Now, turn the page, and witness the miracles yourself.

Mark D. Grebenau, MD, PhD
Transplantation, Tissue Engineering and Immunology
Novartis Pharmaceuticals Corporation

May, 2002

Excerpts from the stories

Would I do it again? You bet!

Arlene Gindoff, 56


My whole transplant experience has not been how I thought it would be - it has been how I DREAMED it would be. Anyone in the street who sees me thinks of me as 'normal' but underneath my shirt I wear my scar like a badge of honour as it signifies my fighting attitude and my new life. Not a day goes by that I don't thank God for my miracle and my donor for their gracious gift that has given me life. I plan to live for many years to come but if I were to die tomorrow, the things I have achieved in these last four months have been truly worth it. I would do it all again in a flash because life is wonderful!!

Megan Boler, 25


Since my transplant, I continue to learn and grow in every aspect of my life. I have faced a lot of my fears and I love the spirituality that I have gained. I have learned that I can be a positive and powerful person. It takes a lot of work but it can be done. I was able to go back to school and be with my friends and family during fun times without any problems. Life is what you make it, so make it fun and love what you do. I love to meet new people, I love volunteering, doing my craftwork. Since I can't have children of my own, my dog and I spend quality time with each other and he gives me all the love and attention that I need. I am so lucky to have him in my life. We both LOVE music and go to the park and watch all the butterflies. I collect angels and butterflies. They to me, mean life and I want so much of it since having another chance.

Tanya Morphey, 27


In January 2001 she was skating on an outdoor rink in Toronto, she went downhill skiing and she also went back to school in March. She passed Grade 5 with the rest of her class and she has never looked back. She says she doesn't remember what it felt like not to be able to breathe. She remains a strong little girl with a positive outlook and a love for life. It is a miracle to see her now pink and active with no oxygen tanks or wheelchairs just a pair of running shoes or roller blades and a slam of the door and a call, "See you later Mom." Most people take for granted the freedom that being able to breathe gives you.

Brenda Caldwell
Mother of Meghan Caldwell, 11


The past few years have truly been a miraculous journey, and in the future, I intend to share my good fortune with others by volunteering to speak on organ donation awareness and the risks of smoking. But for right now, as I concentrate on maintaining my good health, I am perfectly happy to relax on my sun porch with my husband, breathing in the comforts of home.

Kay Goering, 60


I was so grateful for my new life, that in 1996 I started a support group in Denmark, for people who are waiting for a lung transplant, their families and for people who have already had a transplant. We are being supported by the Danish Lung Association. We have two meetings a year and I also arrange a trip somewhere in the world for those who have had a transplant. We have been to Mallorca, France and this year we are going to Austria to participate in the Transplant Games for "Heart and Lung Transplants" in Klagenfurten. There will be about 25 participants from Denmark.

Pamela Ingemann, 47


I suppose one of the most exciting times since transplant was when my dad got to watch me play softball or the year my team won the city volleyball championship. It's been a wonderful ride so far. I remember vividly the day I was sitting at my desk and I suddenly realized that I felt as good as I had felt in my entire life. Words cannot describe the feeling.

J.D. Graves, 44


Now at age 73, I am still active and looking forward to more years to enjoy my family and grandkids and to help others who are on the quest of getting a new lung. My wife and I volunteer to talk to people and groups about organ donation and about the wonderful gift that Daniel gave to me.

Philip J. McKenna, 73


I look forward to being able to travel by air again, and to visit high altitude places without supplemental oxygen. I look forward to playing ping-pong - a family favorite activity. I look forward to participating in family relay races and volleyball at our annual family reunions. Who knows, I may even try jogging!!!

Marilyn Hom, 46


Cystic Fibrosis has actually benefited me. I am not concerned about displaying my material possessions. Petty things do not even enter my mind, and I don't gossip. I get to appreciate life. It is difficult to be selfish when you realize that the life of a donor was lost, and dedicated doctors toil up to 80 hours a week to keep us recipients healthy. I have returned to teaching, performing even better than before, free from the burden of failing lungs. But I will not preach; everyone has to find his or her own way in life. I am spending time with my wife and son, a closely-knit group of friends, and the rest of my family. I have traveled, walked on the beach and fished. I did my first scuba dive on the one-year anniversary of the surgery. Most of all, I am a dad unlike my own, playing marbles, shooting pool, and tossing the ball. I especially enjoy picking my son up from school and talking on our way to his swim practice. I love my son. His name is Stephen.

Michael Horgan, 41


Transplant has given me a new outlook on life. I've come to realize how precious life is and don't sweat the small stuff any longer. I still marvel at my good fortune and am deeply grateful to my donor family for their kindness. My passion is Organ and Tissue Donation Awareness. I am a frequent speaker for Lifenet, the Organ Procurement Organization in my state. My favorite audiences are teenagers who appreciate the humor involved in hearing the story of, "Ben & Curtis, My Two Bosom Buddies" so named in honor of my transplant surgeons.

Paula Huffman, 52


David is busy with his "new" 1996 Chevy Camaro, which he is restoring to be a show car. After high school he is considering going into a career with computers. All stuff a 16-year-old should be involved with.

Melinda Masterson
Mother of David Fornwalt, 16


My new lungs enable me to do things never before possible. I have always worked out but now the intensity level is tenfold. At present I work out five - six days per week, mixing bodybuilding with aerobics plus I went back to teaching Tae Kwon Do and am learning Jujitsu (Brazilian submission wrestling). I think the greatest goal of all was completing a five-mile run. You see one of the requirements at the school where I did my Tae Kwon Do training was a five-mile run after your black belt test. This rule was waived for me due to my lung disease. It was important to me to train for and complete this run. My new lungs allow me the ability to do this and anything else that I chose to do.

Scott Jemison, 41


More than ten years have passed since my transplant and I still cannot conceptualize how unbelievable the past years have been. It has been a journey to rival no other. I am so grateful to my donor family. In a time of tragedy it is amazing to me that they saw past their own lives to give me life and for this I am honored.

Lorrie Krebs, 35


Much travel has been enjoyed by me and my husband. Since transplant we have been to Russia, Poland, and The Holy Land and Rome, Italy. The Transplant Games have been part of my life since transplant and I have been fortunate to attend the games in Salt Lake City, Utah; Columbus, Ohio; Disney-Orlando, Florida; and the World Games in Sydney, Australia and Kobe, Japan. I never win in any events, but I finish the races, so I consider myself a winner already. Second Wind Lung Transplant Association Inc. holds its educational conferences annually and I have attended the Gainesville, Florida; St. Louis, Missouri; Durham, North Carolina and San Diego, California conferences.

Linda Jozefowicz, 68


As I plan my 50th Birthday, my son and three step children will be happy to see me blow out 50 candles! Every year is a reason to rejoice.

Sharon Kelsay, 49


As I write this, we are preparing for Maggie's next birthday. Not surprisingly, she once again has requested a butterfly birthday theme. Our lives have settled into a new definition of normalcy and we embrace the simplicity of life. We are eternally grateful to the donor family who so bravely chose to give our daughter the ultimate gift of life. Without them, Maggie would not have caught her butterfly wings. Words could never adequately express our most humble thanks to the many medical professionals who had faith in her. Because of them, Maggie was taught to fly.

Jackie Mansfield
Mother of Maggie Mansfield, 5


Since the double lung transplant five years ago, I breathe better than I ever thought possible. A healthy person can never imagine what a person with CF goes through and a CF person would never imagine what it is to live with healthy lungs. I would tell a healthy person, "Take your sickest day where you are coughing and multiply it by ten and that might be how a CF feels at times on a good day." When talking to a CF person, I can just say, "Imagine your best day, after being on IV's and then multiply it by 100 and that would be life every day." In a sense of reality, I will constantly be reminded that every breath I take is not my own. I live a normal life now, because my special family generously gave me a second breath of life. As result of this gift, I gladly accept any opportunity to speak at events pertaining to organ donor awareness.

Bryan Lawton, 34


Lung transplant has provided me with a new outlook on life. I find I treat people kinder, am more tolerant of the small stuff. A rewarding experience so far for me. No regrets, eyes wide open, the quality of life is impossible to describe unless you've been there.

Daniel Martini, 49


It has been just a little over nine months since Courtney received two new lungs! What a journey it has been for us all! We have seen miracle after miracle as she has managed to overcome many odds. I have seen the frail little girl with an oxygen tank rolling behind her, transform into the bubbly, giggly little girl with energy and enthusiasm. She can dance, she can sing, she can laugh, she can run and she can BREATHE! I often ponder those questions that our family considered for so long before the transplant, "Would she tolerate the pain?" By the Lord's grace, she sure has! "Would she even survive? God has given her nine months and counting, everyday has been precious! "Would it be worth it?" YES! YES! YES! The miracle of life after her double lung transplant has been worth every tear and every worry! I know Courtney would say the same thing! We are very fortunate and extremely grateful to be a part of the miracle and the blessing of a transplant! The road we've traveled has not always been easy and we don't anticipate that it ever will be. But it has been worth it! My little sister was given a whole new chance at life, and we will always be eternally grateful!

Jessica Acree
Sister of Courtney Gramling, 11


The flight I have taken since my transplant has been richly blessed. Recently, the flight has become even more beautiful as I can experience it with my spouse. Similar to the life of the seagull from the story above, in his flight, the gull is free to return to the safety of the rock for protection during the various storms that arise. Lee and I not only have each other to lean on in the upcoming challenges that may face us in our post transplant recovery. We also share the same faith that God is in control of our lives and will strengthen us during the difficult times. Together, we rejoice that we can now "walk and not grow weary."

Carmen McDonald, 30


Perhaps the biggest triumph to date will be participating in the 2002 Transplant Games at Walt Disney World in Orlando, Florida. This is the culmination of my dream; to fit back into the world and be a productive part of society again.

Grant Ellis, 42

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Catalogue Information

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