Myocarditis Foundation Cofounder and Heart Transplant Recipient Chronicles Her Experiences
The Grateful Heart: Diary of a Heart Transplant
By Candace C. Moose
Review of The Grateful Heart by Jim Gleason, Heart Recipient
The transplant journey can be both awesome and challenging and you will find your own unique experience in living through it. In this book, Candace’s heart transplant diary brings together more challenges than most will face in a lifetime due mainly to her rare condition, so don’t read it as “typical,” but as another inspiring recounting of how the human spirit can triumph over any adversity, returning to a recovered healthy life and even work afterwards.
As my own social worker pointed out up front, “This is not an easy black and white decision of life or death…” rather it is a question of quality of life that may result from complex surgery and dealing with an immune suppressed body and expensive life sustaining meds for, hopefully, many years afterwards. Is it worth that risk? With humor and inspiring optimism, Candace’s shares her experience with an open heart, giving insight to help you face such decisions. Hers is an close look into the daily transplant ups and downs, supported by a close loving family, friends and a caring medical staff which help deal with and overcome many difficulties.
For family and friends reading this book, you will see into a patient’s mind and discover possible answers to the common caregiver question, “What can I do to help?” Candace also shares many of her letters to friends and her very special cardiologist. You will wish you could see the other side of such letters, especially wondering what her doctor said in response to her e-mails of symptoms and concerns. Actually, better we shouldn’t be tempted to apply his answers to our own symptoms instead of talking to our team who know our particular situation and can diagnose them better.
An important lesson Candace shares that many fellow recipients also report is: “Curiously, I did not live those days in fear. I knew God was with me.” What to everyone around us seems like the expected fear of dying often becomes a peaceful acceptance of our own mortality, based on faith in a higher power, a gift that lives on with us after a life saving transplant. Waiting, we have time to answer her questions as we reflect on our current life: “Have I done enough? … lived life well? … treasured every moment?” Not many can give positive answers to all such deep thoughts. With a transplant extending our lives we may be given time to change such answers as her example shows us.
Another unique aspect of this book is the sharing by family of their own experiences, an interesting parallel to Candace’s same event story. Everyone goes through their own journey when a family member undergoes a transplant and, as patients often say, we wish they didn’t have to go through that, but given a choice, we feel the patient is the one with the easier role to play out. Another unique insight is offered by her cardiologist, Dr. Deng, who shares in his own chapter a medical summary of Candace’s story and then puts that into perspective by adding his comments about everyone’s different view of the same story, a lesson medical staff can take from those differences in approaching patients and family.
On page 123, Candace offers us her list of “the psychological issues of recovery” with questions patients often ask of themselves. She writes: “Initially most of us ask, What happened to me and why? They go on to ask later during recovery, Why, if I am doing everything the doctors said, am I not better? Why do things keep going wrong? Will I ever be ‘better’?” She continues: “At the deepest level, somewhere within the course of the illness or recovery, questions regarding our ultimate mortality surface. Does this new heart work? How long will it work? Am I prepared to die? Most of us have come close to doing just that. And finally, when we do get well, we attempt to answer questions about the future. Why did I live? What am I supposed to do with this second chance? …”
These are good questions to face and I hope that your post transplant life gives you many years to find answers to such questions, supported by the thankfulness and joy of being alive, challenged with such questions. Despite much more than her share of challenges, she puts it all in perspective in thanking God for seeing her through to enjoy her life now. To use Candace’s words in summary: “I made it. I’m here. I’m healthy. Three years later, after many bumps in the road, I am finally better. I look just like everybody else, maybe even better.”
Thank you, Candace, for sharing your “heart” diary and offering us this.
Jim Gleason, receiving his own heart transplant Oct. ’94, retired from Unisys Corporation in 2005, is a volunteer with NKF and UNOS as well as a nationally recognized speaker and author. His own book, A Gift from the Heart, is offered free in thanks to his donor family and can be obtained by contacting him at GLEASONJIM(at)AOL.COM.