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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Introduction

Before my first bone marrow transplant in 1994, I believed that my life would return to what I knew to be normal after the transplant. The information I was given about what to expect post transplant was minimal. Most doctors mentioned the possibility of long-term health problems resulting from the transplant, but they also told the stories of a few star patients who went back to their lives at full steam, returning to competitive tennis or running, just as strong as before. In my mind, I latched onto these positive stories, imagining myself a few years down the road, vigorous and healthy again. However, two transplants later, my body, skin, strength, stamina, and approach to life (and death) have profoundly changed. The new normal is both better and worse than I expected. My physical health and energy level are nothing like what they used to be. It is almost as if I am in a new body, which I have had to get to know and identify with. Whereas before the transplant, I prided myself on being very athletic, healthy, and energetic, I am no longer these things. I deal with ongoing chronic Graft Versus Host Disease (GVHD) and take medications on a daily basis. And my energy, while allowing me to function normally, is a fraction of what it used to be. I certainly cannot travel to all the places I once hoped to visit or have the career I once imagined for myself. Emotionally, the story is more complex. Overall, I am content and happy, possibly more so than before the transplant. I appreciate life more; I am more accepting of my shortcomings; I treat myself more kindly; and I am more focused on enjoying this short life. I also still grieve the early loss of my health, vigor, fertility, appearance, and the imagined trajectory of my life had it not been for the aftereffects of the transplant.

Navigating the bumpy post-transplant journey is not easy, particularly if we experience transplant aftereffects. Very few, if any, of our friends experience our symptoms. And often, the physicians caring for us outside of the transplant center are not savvy about the late effects of transplant.

This guide provides information and resources to help you on your journey in the years and decades following your transplant. Much of the information in this guide was obtained from surveys that were filled out by 61 long-term survivors, a few caregivers, peer-reviewed scientific journal articles, lectures by experts in the field, and discussions with survivors and medical personnel. The kaleidoscope of shared struggles, losses, and resilience speaks to the incredible capacity of individuals to weave together meaningful and rich lives despite adversity, and, in many cases, ongoing health problems.

Keep in mind that the information, recommendations, survivor quotes, and products/medications mentioned in this booklet are not endorsements nor intended as medical advice. Always consult with your physician about your medical decisions and treatment. Please note that some of the survivor quotes have been modified or condensed for grammatical and space purposes.

For readers who would like to learn about the basics of the transplant process, the booklet Resource Guide for Bone Marrow/Stem Cell Transplant is available from the National Bone Marrow Transplant Link. Please visit www.nbmtlink.org or call 800-LINK-BMT to find out how you can receive a copy of this publication. The National Marrow Donor Program also has a booklet entitled The Introduction to Marrow and Cord Blood Transplant – available in English and Spanish. This can be ordered by calling 888-999-6743 or visiting www.marrow.org/patient.

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