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Resource Guide for Bone Marrow/Stem Cell Transplant

Conclusion

There will be a number of issues, medical and non-medical, following your stem cell transplant that you and your family may address. These may include concerns about caregiving, the transition home, employment, sexuality, nutrition, fatigue, possible setbacks and others. The National Bone Marrow Transplant Link provides the following resources that address these concerns in detail and offer many practical suggestions: The Survivors’ Guide to Bone Marrow Transplant, What to Expect and How to Get Through It by Keren Stronach; Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives; and The New Normal: Life After Bone Marrow/Stem Cell Transplant, a compelling, Emmy Award-winning video about six transplant survivors.

The majority of SCT patients return to a “new normal” and active lifestyle after transplant. Others have some lingering effects but do not experience significant deterioration in their quality of life. So, begin this life journey with a better understanding of what to expect and how best to manage the way through it.

Keep in mind throughout this experience that you are not alone. The inspirational comments below may help you through the challenges ahead:

“Reducing the anxiety, I think goes to this idea of hope. If I can be well enough prepared, if I can know enough about this to feel some control over it, then I think I’m going to have more hope.” — Marla, SCT survivor

“People need to know that they can do this. It may not sound like something they want to do, but they need to know they can do it, and that they can do it with the help of their health care team and the people around them who are important to them.” — Pat, SCT nurse

“I believe that people should look at the transplant process as a minor interruption in their lives. I think that if you just hold on to hope, it kind of helps you through the day, and maybe that’s all you need to do is get through the day. And then the next day, get through that day. And once I learned to do that, it became much easier to take each day at a time, and before I knew it, the whole process was over.” — Juanita, SCT survivor

“You have to believe in a lot of things. You have to believe in the people around you; you have to believe in yourself, so that you can muster up all of the strength it’s going to take to get through.” — Julia, wife and caregiver of SCT survivor

“You need to be patient. So you just have to keep your eye on the future, but take the time necessary to heal your body. It takes a long time.” — Harry, SCT survivor

“It is a life-changing experience, there’s no question about that. And it’s hard to believe that you will grow from this and that the change could be positive, but it is.” — Marla, SCT survivor

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Table of Contents

History

Introduction

Understanding the Process

Preparations for the Transplant

The Transplant

Pediatric Transplants

Emotional Considerations

The Role of Caregiver

Selecting a Caregiver

Costs

Insurance

Financial Aid

Conclusion

Glossary

Resource Listing

Books

Friends

 

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