In this episode, we welcome Jeannie Wiarda, LMSW, a Medical Social Worker at the Adult Blood and Bone Marrow Transplant Center at Corewell Health in Grand Rapids, Michigan. Jeannie has been a Medical Social Worker at Corewell Health for 20 years including 14 years in Hospice and Palliative Care Inpatient; time in the Emergency Room prior to that, and has currently spent three years in bone marrow transplant. Jeannie provides insight into her work with transplant patients, particularly those navigating chronic graft-versus-host disease (GVHD), offering a comprehensive view of her role and strategies for supporting survivors through their journeys.

Jeannie explains that her role as a social worker encompasses the entire transplant process—from the pre-transplant evaluation to post-transplant care. She helps patients address barriers like financial challenges, housing, and psychological trauma, tailoring support to each individual’s unique needs. Her involvement extends through the hospital stay and into recovery, offering continuity of care during this vulnerable time.

A key theme is the interplay between stress, trauma, and the transplant experience. Jeannie highlights the impact of chronic stress on the brain, emphasizing the importance of caregivers who provide practical and emotional support. She underscores the necessity of self-care for caregivers, advocating for planned respite and support systems to sustain their well-being.

Jeannie shares actionable strategies for patients and caregivers to find hope and purpose amid the challenges of GVHD. These include maintaining a healthy lifestyle, engaging in fulfilling activities, and staying connected with others. She stresses the value of education, encouraging patients to leverage resources like the nbmtLINK, BMT InfoNet, LLS, and the GVHD Alliance to empower themselves with knowledge and advocacy skills.

Jeannie emphasizes finding ways to “live life” despite the limitations GVHD may impose. She recalls stories of patients adapting activities to their current abilities, referencing another podcast by the LINK where we talked to a survivor who switched to an e-bike for outdoor exploration. Jeannie also advocates for fostering connections through support groups and meaningful activities, such as volunteering, to regain a sense of purpose.

Jeannie concludes with advice on processing grief and fear, embracing compassion, and accessing professional mental health resources, including cognitive behavioral therapy such as Eye Movement Desensitization and Reprocessing (EMDR), for addressing trauma. Her compassionate, holistic approach demonstrates the profound impact of social work in transforming survivorship into a journey of resilience and empowerment.

More:

• GVHD Alliance: https://www.gvhdalliance.org
• Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
• Book: The Body Keeps the Score: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748
• Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

In this episode, we sit down with Sarah Bugen, a nurse at Memorial Sloan Kettering Cancer Center, who shares her expertise on managing life after a blood or bone marrow transplant, particularly in relation to chronic graft-versus-host disease (GVHD). The conversation centers on practical advice for patients and caregivers navigating recovery and maintaining quality of life.

Regarding Oral GVHD, Sarah emphasizes the importance of oral health post-transplant, recommending soft toothbrushes, alcohol-free mouthwash, and avoiding irritants like spicy or acidic foods. She suggests soft, hydrating foods and stresses the need for regular dental checkups with oncologist approval. Hydration is vital for managing dry mouth, with a goal of 2-3 liters of fluids daily. Also, sugarless candy or gum can help stimulate saliva production.

For nutrition, Sarah advises increasing caloric intake with protein powders, full-fat products, and small, frequent meals. She also highlights the value of bland diets and electrolyte packets for hydration. Avoiding triggers like dairy, caffeine, and greasy foods can minimize gastrointestinal discomfort (and even GVHD of the GI Tract), while clean cooking practices ensure safety during recovery.

Skin care is another focus. Sarah recommends fragrance-free, gentle products like CeraVe and Cetaphil and suggests applying moisturizer after a shower to lock in hydration. Sunscreen, protective clothing, and sun hats are essential, even in winter, to protect sensitive post-transplant skin.

Physical activity is vital for rebuilding strength and improving mental health. Sarah advises patients to start slow with light activities like walking or stretching and gradually increase as tolerated. Physical therapy exercises should be integrated into daily routines, and adequate rest is crucial after any activity. Even though it may be counter-intuitive, continuous movement is key in the battle against fatigue.

Caregivers also play a pivotal role. Sarah underscores the importance of open communication with the medical team and notes that caregivers can support medication management, track progress, and join support groups for additional resources. Caregivers are encouraged to celebrate small victories and take care of their own mental health, as they are an essential part of the recovery process.

Finally, Sarah shares an incredible survivor story, and reflects on the resilience in her patients and the importance of celebrating milestones like “transplant birthdays.” She encourages patients to set realistic goals, maintain hope, and focus on incremental progress. Sarah leaves us with an inspiring reminder to be patient with ourselves, celebrate every achievement, and never stop fighting.

Resources:

Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition

GVHD Alliance: https://www.gvhdalliance.org

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

In this episode, we meet up with Josh Conklin, a seasoned bone marrow transplant (BMT) nurse at the University of Michigan Hospital, to explore his experiences, insights, and tips for managing chronic graft-versus-host disease (GVHD). With 11 years of inpatient experience, Josh offers a comprehensive view of the challenges and triumphs in caring for patients undergoing BMT.

Josh explains that his primary role involves guiding patients through the most critical stages of their transplant journey, from chemotherapy conditioning to the stem cell infusion and the vulnerable recovery period afterward. He emphasizes the delicate balance required in managing GVHD, a condition that plays a dual role: while some GvHD is beneficial in suppressing cancer recurrence (graft-versus-leukemia effect), too much can lead to severe complications.

Long-term immunosuppression is a cornerstone of GVHD management. Josh highlights the reliance on drugs like tacrolimus and, when necessary, steroids. However, we note the adverse effects of prolonged steroid use, such as muscle wasting, infections, and physical deconditioning. Emerging monoclonal antibody therapies are offering new hope, aiming to reduce these side effects.

The discussion also sheds light on the psychological toll of repeated hospitalizations and the role caregivers play in patient success. Josh describes caregivers as essential for monitoring symptoms, administering medications, and providing emotional support. However, he acknowledges the significant strain caregiving can impose, especially during the critical first 100 days post-transplant when patients are highly vulnerable.

Josh shares stories of resilience and purpose among his patients, underscoring the importance of a positive outlook and having something meaningful to strive for. He reflects on the impact of a strong support system, whether it’s family, friends, or peer mentorship programs, in helping patients navigate their “new normal.” Despite the challenges, Josh finds inspiration in his patients' ability to find joy and purpose, even in difficult circumstances. He shares his experience with one woman in particular.

This heartfelt conversation highlights the physical, emotional, and relational dynamics of BMT care, offering a glimpse into the profound impact of dedicated healthcare professionals like Josh.

More:

• GVHD Alliance: https://www.gvhdalliance.org
• Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
• Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd