May News from the nbmtLINK

Welcome to Our May E-nnouncement!

We strive to educate, inspire and offer hope to patients, caregivers and health care professionals navigating the bone marrow transplant journey. It is our honor.

New BLOG

Jim Bond Cycles On!

Jim seen above at the POHR finish line after four days and 328 miles of cycling to help cancer patients.

Prepare to be inspired by this incredible soul.

Seen here from left to right above: Jim, his wife Kathleen and his donor and sister, Becki.

Click here to read more of Jim's story.

Link Partner Spotlight

Check it out ! Each month, we will be spotlighting a Link Partner. Link Partners are centers and allied organizations who support our mission in so many ways. See the bottom of this newsletter for a complete list. This month we thank and showcase Seattle Cancer Care Alliance. These features will provide best practices, tips, special events and much more.

If you are a Link Partner, be sure to email peggyburkhard@nbmtlink.org

to reserve your spot!

Building a Bridge of Trust

How do you build a bridge of trust and not fall through the cracks? What promotes a secure transition when facing pre- and post-transplant care separation? Separation anxiety is the fear or distress that can happen to both children and adults when they think about separating from home or from the people to whom they've become attached. ( Psychology Today , 2018).

It is difficult to leave your referring doctor, whom you trust. Later, it can be equally hard to leave your transplant team and return home. Each transition can cause feelings of anxiety. No one volunteers to have a transplant experience, but once you go through it with a dedicated team that has earned your trust, it can be challenging for you to leave the cocoon of transplant.

These tips will help to build a foundation of trust and self-care and to reduce separation anxiety as you move ahead from the transplant center to home:

· Be an advocate for yourself as you develop trust in your treatment team. You and your caregiver are a part of the medical team. Let your team know your expectations. Request more time or frequent appointments to make sure your concerns are addressed and your questions are answered – completely.

· Speak up. Report your symptoms, problems and concerns — hiding any of these doesn’t fix the problem and is likely to make the situation worse.

· Follow infection control practices outlined by the transplant team for a full year following the transplant. Post-transplant patients are at greater risk for infections.

· Take medications as instructed. Let your medical team know about any financial distress or barriers that you are experiencing that could interfere with taking medication.

· Know your resources for ongoing accurate information. See links below for more information.

· Follow the recommendations and educational suggestions that your transplant team provides.

· Accept fatigue. Not feeling like yourself is common. Be patient and kind to yourself as you experience the long recovery process. Keep exercising in the face of fatigue; it will help how you feel.

· Develop a plan to address and heal your emotional life as well as your caregiver’s . Complicated feelings will linger, and emotions have a way of reappearing even if you addressed them during the acute treatment phase. Find opportunities — therapy, online support groups, blogs — to process the experience. This is an important part of the healing process.

For more information, see Chapter 4 (Long-term Recovery) in these SCCA manuals:

· Adult Autologous Transplant Manual

· Adult Allogeneic Transplant Manual

Long-term Follow-Up Recommendations:

· Long-Term Follow-Up After Hematopoietic Stem Cell Transplant

We Invite You to Help Others!

We invite you to consider taking the following survey provided by an optometrist and PROSE provider at the University of Illinois at Chicago who has a very active cGVH clinic. This group is working with a study group researching patients’ experiences with management of their disease. The results will be presented at national research meetings and will be available to the LINK as well. The study is approved by the University of Illinois IRB and is part of a multi-site SCOPE study group. Previous research projects have involved scleral lens prescribing patterns and patient experience with keratoconus.

The survey is available electronically via a redcap link here :

How We Help Others!

We are a phone call away for patients and their loved ones. From one on one peer support to scheduled call series and webinars, we are ready to ease your burden.

How We Help

Patients, caregivers and health care professionals are amongst those we aim to help through our valued resource books, programs and one on one calls.

Who We Help

We simply cannot do it without the support of corporations, foundations and individuals willing to make a difference in the lives of others.

Help Us Help Others

Donate Today

We Invite You to Become A Link Partner!

Link Partners include cancer centers and allied partners who annually support our mission of providing psychosocial support to patients, caregivers, their families and health care professionals dedicated to helping people navigate a bone marrow transplant. If you would like to learn more about the many benefits (books, programs, hyperlink on our website, bookmark inclusion) to being a Link Partner, please do not hesitate to contact us at (248) 358-1886. Want a free bookmark which lists our many Link Partners? Let us know and we will send you one!

American Society for Blood & Marrow Transplantation (ASBMT)

Anthem, Inc.

Barbara Ann Karmanos Cancer Center

Be The Match

Blood and Marrow Transplant Program, John Theurer Cancer Center at

Hackensack UMC

Blood Marrow Transplant Program at Northside Hospital

Blood & Marrow Transplant Program, The Sidney Kimmel Cancer Center at Thomas Jefferson University

Center for International Blood and Marrow Transplant Research (CIBMTR)

City of Hope

Dana-Farber/Brigham and Women's Cancer Center

DKMS (formerly Delete Blood Cancer)

Duke Adult Blood and Marrow Transplant Program

Froedtert Hospital and the Medical College of Wisconsin

Henry Ford Transplant Institute

Incyte Corporation

Memorial Sloan-Kettering Cancer Center

Meredith A. Cowden Foundation

Nebraska Medicine

Oregon Health & Science University Knight Cancer Institute

Roswell Park Cancer Institute

Seattle Cancer Care Alliance

Siteman Cancer Center at Barnes-Jewish Hospital/Washington University School of Medicine

Spectrum Health Cancer Center

The Leukemia & Lymphoma Society

University Hospitals Seidman Cancer Center

UPMC CancerCenter

Vanderbilt Ingram Cancer Center

Thank your for being a friend of the nbmtLINK. We simply could not do this without you. If you can support our efforts at this time, we thank you in advance. Every dollar helps. Wishing you good health in the new year.

Sincerely,

Peggy Burkhard, Executive Director

(248) 358-1886

peggyburkhard@nbmtlink.org

www.nbmtlink.org

National Bone Marrow Transplant Link

Website

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Southfield, MI 48076

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