Lung-Transplantation Books

Dana Broehl is my spanish teacher, and I read her book mostly to see how good of a writer she is. I found out that she is an excellent writer who adds humor to her very difficult problems. She writes of her husbands double lung transplants and all of the problems that go along with it. It is a heart warming story of love, faith and living ones life to the fullest. This is perfect for anyone who is going through a difficult situation or has been through one in the past.

This book is an open and honest portrayal of one couple's journey through a chronic illness. The book is full of hilarious and heart wrenching stories, but the message is hope. This brave young couple has gone through the storms of life, but they have weathered them in such a way that they have learned to focus not on the storms, but on the rainbows that inevitabley follow. This is a spectacular book that should be read by the healthy and the chronically ill.

Dana is a gifted writer who has told the story of how her life was transformed by love in a most glorious way. She shares the deepest secrets about meeting Doug and then goes on to tell how she had to learn to share him with a third party - a chronic disease that would surely kill him. Was it worth working to build the relationship? Could Dana and Doug beat the odds, which were stacked against them on so many different fronts? There is so much to be learned from their experience and Dana (a teacher by profession) educates the reader about accepting the truth and overcoming obstacles previously unimaginable. There is a spiritual side, but it does not dominate her writing. There is a humorous side, but it does not detract from the seriousness of the story. This is probably the most educational, amusing and uplifting book I have read in the past year.

My son has CF, and I know that he will someday need a transplant.
I found this book to be a hopeful and honest portryal of life with a chronic illness. I strongly recommend this book to anyone who feels overwhelmed or burdened by life and illness.

Reviewed by Mary Durfor for RebeccasReads (8/08)


This book, "The Comfort of Home for Chronic Lung Disease - A Guide for Caregivers" is part of a series of excellent caregiving guides for providing supportive care to family members or others who are experiencing chronic diseases and living in a home environment. The book is divided into three major parts: Getting Ready, Day by Day and Additional Resources. Part One: Getting Ready first provides a discussion of the actual diseases that make up Chronic Lung Disease. The authors provide a comprehensive description of Chronic Obstructive Pulmonary Disease (COPD), which includes emphysema and chronic bronchitis, both characterized by shortness of breath, and excessive coughing. Interstitial Lung Disease is characterized also by a dry cough and shortness of breath. Non-Tuberculosis Mycobacterial Disease (NTM) is not contagious, but is a chronic infection of the lungs that causes coughing (possibly bloody) and lack of appetite and stamina. A great list of resources is at the end of the chapter. The common treatments for lung disease are described, with medications, oxygen therapy, rehabilitation programs, and tips for preventing complications and for relieving stress. Surgical options are explored and more resources are presented. There is a candid discussion of the appropriateness and ability of the lung patient to live at home, with helpful checklists for deciding if the reader has the characteristics of an ideal caregiver, and for ruling in or out facility placement. Additional related resources are listed.

The healthcare team is explained very well, and a helpful checklist of symptoms to report to the physician is outlined. A complete checklist of coming home from the hospital must-do's are given, and even more resources are listed. A good and thorough overview of the different types of home care agencies and the various ways of getting outside home care paid for and of paying for it privately is provided as well. A well-informed list of the process to follow before selecting a home care agency, an explanation of the steps to follow and the employment rules if you hire someone yourself, and some excellent resources and books to guide these choices is provided. Preparations for end-of-life care are discussed as well as a thorough review of the entire myriad of equipment and medical supplies that might be needed to provide competent care at home, with additional listing of resources provided.










Part Two: Day by Day is another section that addresses the actual nitty-gritty of providing care to someone at home. A sample care plan is provided, which can be adapted for use with any patient, with a medication schedule to follow, emergency information which should be recorded, and a really good explanation of how to keep these forms updated to ensure excellent care with minimal disruptions. An excellent guide for minimizing caregiver burnout, stress, and depression is outlined, with an exhaustive list of resources and publications that would be helpful to the caregiver. A hands-on guide for assisting with all the normal activities of daily living (bathing, grooming, feeding, etc.) and a description of all the possible types of rehab therapists that might be involved in care is given. Some compensation techniques to encourage continued intimacy, tips for traveling with a disabled person, a nutritional assessment, a very good and basic discussion of dietary needs and ways to meet those needs, a review of exercise as part of chronic lung disease, and the use of some complementary therapies (yoga, tai chi, massage) are all presented for consideration. There is a thorough review of possible emergencies and appropriate responses. The final part of the book is full of common medical abbreviations, common healthcare specialists and what they do, a comprehensive listing of caregiver support organizations, and a glossary of terms the caregiver is likely to encounter on this journey.

As a veteran of the home care industry, with thirty-plus years experience as a home care nurse myself, I would definitely recommend this book (and all the books in "The Comfort of Home" series) as wonderful guides for all who find themselves in the role of caregiver for a chronically ill person. The authors provide accurate medical information, but maybe even more important, they talk about the actual nuts and bolts of providing care with examples to guide the reader in the process. The checklists are very helpful, and the resource listings at the end of each chapter and in the final part of the book are exhaustive and bring it all together in one place so the reader can easily obtain information on any subject needed.

Comfort of Home for Chronic Lung Disease is a great resource. Large type makes it easy to read.Long lists of web sites and other resources. This book is a must for the beginning caregiver and a valuable referance for all others. I,m my wifes caregiver for over five years and have learned alot from this book and it resources.

Check page 242. In some cases this page is page 342 of the index. You can call them and download this page.

The Comfort of Home for Chronic Lung Disease: A Guide for Caregivers (Comfort of Home, The)
This is the best source for understanding the effects and realities of lung disease for both the patient and the caregiver I have ever read. It is an awesome addition to the Comfort of Home series. We have a copy and have sent three to dear friends. Highly recommended.


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This is a fabulous book. A very inspirational read for anyone considering a lung transplant. The stories are all from personal experieces of transplant survivors of all ages and from around the globe. I absolutely love this book and I still read it daily!!!!!

If you, or someone you know, is in the process of waiting for a lung transplant, this book is a must read! It will truly help you keep your sanity during a very frightening time. The stories are honest, from the heart, real life experiences. I've re-read this book a couple of times and it still fills me with hope every time.

This is an awesome book and i highly recommend it to anyone wanting to know what it's like to be chronicaly ill.

Mary passed away several years ago; however, knowing her and her zeal for living one cannot help believing that her courage to go through the heart/lung transplant will encourage others to reach out and experience the unknown.

Lifelong care of the lung transplant recipient is essential to optimal long-term outcomes, and the University of Minnesota's multidisciplinary approach to patient care has been a significant factor in the success of their transplant program. This book outlines the university's protocols for patient care, beginning prior to the time of first referral and continuing through the rest of the patient's post-operative life. Highly recommended for primary care physicians; pulmonary specialists; nurses and care coordinators; dietitians; and other allied health professionals.

This book was amazing, it changed how I looked at transplants. What the patients go thru, and there are times that the Doctors want to only think CLINICALLY, but there are times and instances that you have to look beyond, and believe what you don't see and trust in that.

This book was given to me by my fiance who had received this book while in the hospital after receiving his heart transplant. Being 18 years old and having a heart transplant is hard enough, and he was able to find some inner peace from this book. I thoroughly enjoyed this book and I highly recommend it to anyone who is interested in organ transplantation or anyone who wants to read an uplifting story. Claire and my fiance are definitely inspirations to me, and this book also helped me understand some of the feelings and emotions that these two wonderful people have expierienced throughout their journey. I urge many others to take the time to read this wonderful story.

Claire Sylvia's book will cause you to reevaluate everything you know about your body, your personality, and life overall. Before reading her account I never would have believed that individual organs within the human body have their own awareness, intelligence, and memory. Slyvia's story is a testament to enduring and magical properties of living things and shows that modern science has yet to fully grasp the amazing nature of biological life. Highly recommended. (Dr. Simeon Hein is the author of Opening Minds: A Journey of Extraordinary Encounters, Crop Circles, and Resonance and the forthcoming Planetary Intelligence.)

After reading "The Heart's Code" by Paul Pearsall and now this book I am convinced we are just beginning to scratch the surface of the science of transplant information and details about the heart and how it controls personality.

It is a proven fact that heart patients who are ill have a sudden change in temperment and also proven that transplant patients take on some characteristics of the donor.

There was a case of a nun who received the heart of a prostitute (absolutely true story) and many more in Paul's book and this book seems to focus on one true story of one woman.

You have to be careful though, if you've had open heart surgery or are waiting on a transplant it can get a bit emotionally heavy as you related to her having to face death. Watch the dark tones and you'll be fine as you read the info. The object is to come away having learned some secrets of what to expect and those are very very interesting.

There was also a case of a transplant recipient who began using vocabulary words from the donor and then later when the patient met the donor's family and used those rare words randomly they were floored. Good read.

I just finished reading "A Change of Heart" - Claire Sylvia & William Novak's original book. It's currently no longer in print, so I wound up ordering it from a used bookstore. It appears that the reprint is now available - with a slight title change (it now incl. "A Memoir").

At any rate, I found this book to be truely amazing! The basic premise is that Claire went through a heart & lung transplant, and afterward, she noticed some major changes in her personality (i.e. likes and dislikes) - was it due to the fact that she now had another person's heart and lungs within her? That is a question that you are left to answer for yourself.

I like the fact that this book explains what was occuring through Claire's point of view, and then goes on to discuss many other "experts" ideas as to why these things were happening. No one idea is pushed on the reader - the information is layed out for you to make your own decision.

I believe that this book is a "must read" for anyone who has gone through a transplant, knows someone who has, or is just plain interested in happenings that cannot currently be explained by western science. An open mind is a must!


P.S. This book also reminds us of just how important it is to check that little box on your license & become an organ donor. It may give someone the gift of life one day!

If your purpose is to help a particular group of people, that fact will
provide focus for your plans. Karen Couture did extensive research before
and after she underwent a double-lung transplantation
operation. She then wrote The Lung Transplantation
Handbook: A Guide for Patients [ISBN 1552125041]
to share her encyclopedic knowledge with others who
would be receiving transplants, their families and the
caregivers. Since sharing knowledge was her prime
purpose (not `making money' or `becoming famous
by being on Oprah'), Karen chose to link up with transplant recipients
groups, such as Second Wind [...], to publicize the book
to all hospitals and specialists who perform the operation. Proceeds from
sales go in part to the groups. The result? The Lung Transplantation
Handbook is the world's top selling book on that subject, and is widely
considered a `must-have' for all prospective lung transplant recipients
and their families.

Karen Couture's book has also encouraged the publishing of other
books for that niche audience, including Taking Flight: Inspirational
Stories of Lung Transplantation, complied by Joanne M. Schum [isbn
1553696840] and I Call My New Lung Tina: Inspiration from a Transplant
Survivor, by Shirley Jewett [isbn 1553952707].

Considering Karen's purpose of educating people, her marketing
has been a fantastic success. Her goal pointed directly to the optimal
marketing strategy: enlisting the active support of transplant recipient
groups and their networks around the world (a partnership). In effect,
she recruited a huge team working on personal sales to reach prospective
transplant recipients, family and caregivers (her targeted public).
-- the above story is an excerpt from Book Marketing DeMystified: Enjoy Discovering the Optimal Way to Sell Your Self-Published Book, Practical advice from the inventor of print-on-demand (POD) publishing

Once a person passes the denial stage and makes the decision to become a transplant candidate, they go through the work up process with their eyes wide open hoping the medical professionals will provide information in an understandable format that will reassure them that they made the correct decision. This is unfortunately not always what happens. What this book does is fill in a lot of information gaps that are created during the process of becoming a lung transplant candidate. There are lots of "feel good" books in print, but this is the first book I found that supplied straight talk. I would recommend this book to all caregivers and to any transplant candidate who can handle the realities of lung transplantation. Some statistical information is outdated but expected considering progress being made in this area of medicine.

There is nothing easy about this process, but this handbook takes some of the fear out of it and offers valuable resources for assistance.

This comprehensive guide leads the lung trasnplant patient through the transplant process and addresses every questions from pre transplant evaluation through post transplant recovery and pulmonary rehabilitaion. Included are quotes from transplant recipients in which they share their experience regarding a particular part of the transplant process which makes me feel like I am not in this alone. I referred to this guide every step of my transplant journey and have recommended it to hundreds of transplant patients. This book is the definative guide for all my transplant questions. I wouldn't be without it.

Tom Archer
President
Second Wind Lung Transplant Association, Inc

I had a lung transplant in March 2003 at UW Madison. I found this to be the best resource in print. It is a sort of enyclopedia covering all aspects of lung transplantation: medications, complications, surgical aspects, etc. It covers technical material, but is easy to read and is written for lay persons. I would highly recommend reading it before you have a transplant in order to understand what you're really getting into. I constantly referred to it when I was recovering, and it answered many of my questions, or clarified things my doctors/nurses had said.

The one major drawback to this book is that there is no index and it covers far too briefly the emotional aspects of having a lung transplant. However, I still have no hesitation recommending this excellent resource, and I am glad that I had it next to me on my journey of recovery.