Expert Advice on Post-Transplant Health: A Deep Dive with Flora Stondell
05/31/24 • 20 min
Today, we have the pleasure of interviewing Flora Stondell, an advanced practice manager and assistant director at UC Davis Comprehensive Cancer Center. Flora’s extensive experience in bone marrow transplants, particularly in malignant hematology, transplant, and cellular therapy provide us with invaluable insights.
Flora begins by sharing her journey into the field, highlighting her accidental start in transplant care and her enduring passion for her patients. Her commitment is evident as she continues to balance her clinical work with her leadership role, always prioritizing patient care and workflow improvements.
We then delved into the importance of screenings in early survivorship. Flora emphasizes that routine screenings, often neglected during the intense phases of treatment, need to be revisited post-transplant. These include mammograms, gynecologic exams, colonoscopies, dental care, and eye exams. These screenings are crucial to detect any preventable issues and address the heightened risk of certain cancers and other health concerns post-transplant.
Vaccinations were another critical topic. Flora explains the different schedules for autologous and allogeneic stem cell transplant patients. Autologous patients typically start their vaccinations about six months post-transplant, while allogeneic patients’ schedules depend on their immune system status and medication regimen. She stresses the importance of working closely with healthcare providers to ensure vaccinations are administered safely and effectively.
We also cover Graft-Versus-Host Disease (GVHD), a common complication where donor cells attack the recipient’s body. Flora describes the various manifestations of GVHD, with skin rashes being the most common and easier to treat, compared to gastrointestinal symptoms which are more challenging. She urges patients to report any symptoms promptly to their healthcare team to ensure early intervention and better outcomes.
Flora provides reputable resources for further information on GVHD, including the GVHD Alliance, nbmtLINK, BMT Infonet, and the National Marrow Donor Program (NMDP). We also acknowledged the Meredith Cowden Foundation for its dedication to GVHD awareness and support.
Caregiver support is another vital area discussed. Flora highlights the importance of acknowledging caregiver fatigue and ensuring caregivers seek support and communicate openly about their needs. She emphasizes the importance of caregivers taking care of their own health to provide better care for their loved ones.
In wrapping up, Flora advises patients to be patient with their recovery process, recognizing that it can take months or even years to regain their strength. She also acknowledges the psychological impact of the transplant journey, mentioning that PTSD can occur even years later. Flora encourages patients to seek mental health support if needed.
Flora’s insights were not only informative but deeply compassionate, reflecting her dedication to improving the lives of transplant patients and their families. We are grateful for her expertise and the valuable information she shared.
Resources:
PDF files of vaccination Schedules for Auto and Allo Transplants
UC Davis Comprehensive Cancer Center : https://health.ucdavis.edu/cancer/
GVHD Alliance: https://www.gvhdalliance.org/
Meredith Cowden Foundation http://www.cowdenfoundation.org/
BMT Infonet https://www.bmtinfonet.org/
NMDP (National Marrow Donor Program) https://bethematch.org/
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
nbmtLINK YouTube Page can be found by clicking here.
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...
Today, we have the pleasure of interviewing Flora Stondell, an advanced practice manager and assistant director at UC Davis Comprehensive Cancer Center. Flora’s extensive experience in bone marrow transplants, particularly in malignant hematology, transplant, and cellular therapy provide us with invaluable insights.
Flora begins by sharing her journey into the field, highlighting her accidental start in transplant care and her enduring passion for her patients. Her commitment is evident as she continues to balance her clinical work with her leadership role, always prioritizing patient care and workflow improvements.
We then delved into the importance of screenings in early survivorship. Flora emphasizes that routine screenings, often neglected during the intense phases of treatment, need to be revisited post-transplant. These include mammograms, gynecologic exams, colonoscopies, dental care, and eye exams. These screenings are crucial to detect any preventable issues and address the heightened risk of certain cancers and other health concerns post-transplant.
Vaccinations were another critical topic. Flora explains the different schedules for autologous and allogeneic stem cell transplant patients. Autologous patients typically start their vaccinations about six months post-transplant, while allogeneic patients’ schedules depend on their immune system status and medication regimen. She stresses the importance of working closely with healthcare providers to ensure vaccinations are administered safely and effectively.
We also cover Graft-Versus-Host Disease (GVHD), a common complication where donor cells attack the recipient’s body. Flora describes the various manifestations of GVHD, with skin rashes being the most common and easier to treat, compared to gastrointestinal symptoms which are more challenging. She urges patients to report any symptoms promptly to their healthcare team to ensure early intervention and better outcomes.
Flora provides reputable resources for further information on GVHD, including the GVHD Alliance, nbmtLINK, BMT Infonet, and the National Marrow Donor Program (NMDP). We also acknowledged the Meredith Cowden Foundation for its dedication to GVHD awareness and support.
Caregiver support is another vital area discussed. Flora highlights the importance of acknowledging caregiver fatigue and ensuring caregivers seek support and communicate openly about their needs. She emphasizes the importance of caregivers taking care of their own health to provide better care for their loved ones.
In wrapping up, Flora advises patients to be patient with their recovery process, recognizing that it can take months or even years to regain their strength. She also acknowledges the psychological impact of the transplant journey, mentioning that PTSD can occur even years later. Flora encourages patients to seek mental health support if needed.
Flora’s insights were not only informative but deeply compassionate, reflecting her dedication to improving the lives of transplant patients and their families. We are grateful for her expertise and the valuable information she shared.
Resources:
PDF files of vaccination Schedules for Auto and Allo Transplants
UC Davis Comprehensive Cancer Center : https://health.ucdavis.edu/cancer/
GVHD Alliance: https://www.gvhdalliance.org/
Meredith Cowden Foundation http://www.cowdenfoundation.org/
BMT Infonet https://www.bmtinfonet.org/
NMDP (National Marrow Donor Program) https://bethematch.org/
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
nbmtLINK YouTube Page can be found by clicking here.
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...
Previous Episode
Survivor Beth Ades Shares Inspirational Post-Transplant Endeavors
In this episode, Peggy interviews Beth Ades, who shares her compelling journey after being diagnosed with Myelodysplastic Syndrome (MDS) in 2021. Beth's story begins with mysterious bruises on her legs, leading to a diagnosis that required immediate hospitalization and numerous tests. Despite a harrowing seven-month diagnostic process, Beth was eventually diagnosed with MDS and was told her only chance of survival was a bone marrow transplant.
Beth recounts the emotional and physical challenges she faced, including a life-saving transplant from a 19-year-old donor in Germany. The connection between Beth and her donor has evolved into a meaningful relationship, showcasing the profound impact of such donations. Despite the difficulties, Beth's experience has been transformative, igniting a passion in her donor to pursue medicine and advocate for bone marrow registries.
Post-transplant, Beth faced severe side effects such as mucositis, which she describes as far more than just mouth sores, but a condition affecting her entire gastrointestinal tract. Her proactive approach and close communication with her medical team were crucial in managing these issues. This acute GVHD passed, but she still deals with chronic GVHD in her eyes.
Beth also shares the wisdom imparted by her social worker about the challenging transition back to everyday life. The first hundred days post-transplant were particularly tough as she felt isolated from her family's ongoing life. However, the experience has given her a new perspective, emphasizing the importance of acknowledging and dealing with these emotional hurdles.
The interview highlights the concept of paying it forward, which Beth embraced through organizing blood drives and bone marrow registry events. Her husband also became involved by signing up as a courier for the National Marrow Donor Program, (NMDP) reflecting their deep commitment to giving back. There is also a tribute race car in the works, yet another way this family is raising awareness on and off the track.
Beth's story underscores the collective effort required in the transplant journey, from medical professionals to supportive family and community members. Her reflections on gratitude, finding humor in difficult times, and the importance of small comforts, like warm blankets, offer valuable insights for others navigating similar experiences.
Beth concludes with an inspiring note on the transformative power of her journey. She appreciates the profound changes it has brought to her life, stating she would choose her transplant life over her previous one despite the hardships. Her resilience and positivity are palpable, leaving listeners with a sense of hope and the importance of community support in overcoming life's toughest challenges.
Resources:
Beth's Bone Marrow Journey Facebook Page: https://www.facebook.com/profile.php?id=100077793195673
NMDP (formerly Be The Match): https://bethematch.org/
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
nbmtLINK YouTube Page can be found by clicking here.
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
Next Episode
Janet Young Shares Challenging Side Effects after AML Transplant
In today's episode, we have the pleasure of speaking with Janet Young from Massachusetts, who shares her challenging yet inspiring journey with acute myeloid leukemia (AML) and her subsequent stem cell transplant. Diagnosed in March 2022, Janet underwent a transplant in August of the same year after a regimen of intensive chemotherapy. Remarkably, her transplant occurs on her ACTUAL birthday, adding a poignant touch to her recovery story.
Janet discusses the profound fatigue she experiences post-transplant, describing it as an overwhelming tiredness that significantly limited her daily activities initially. However, over 21 months, she's progressed from barely being able to walk to her driveway to completing a two-and-a-half-mile walk, a significant achievement in her recovery.
Another major challenge Janet faces is the loss of muscle strength, for which she has been in physical therapy, greatly improving her stamina. Cognitive issues, particularly with memory and word recall, are also significant hurdles that Janet continues to navigate. These symptoms are common among transplant recipients and will slowly improve.
Janet also touches on Graft Versus Host Disease (GVHD), a complication of her transplant manifesting mainly in her lower limbs. Treatment for GVHD includes starting a medication called Rezurock, which she hopes will be effective.
Her social interactions have changed, too. She spent a year isolated post-transplant, which has altered her casual relationships although her closer friendships remain strong. Janet also mentions adapting her life to manage her energy better, using the "spoon theory" to prioritize activities based on her daily energy levels.
Concluding the interview, Janet shares how she has had to modify her approach to planning and socializing, focusing on self-care and adjusting to a new normal. She remains thankful for every new day and emphasizes the importance of support groups in her ongoing recovery.
This powerful story not only highlights the physical and emotional challenges of dealing with AML and undergoing a stem cell transplant but also showcases the resilience and gradual return to normalcy despite the challenges of GVHD. Janet's journey is a testament to the power of medical treatment, personal determination, and community support in navigating life after a major health crisis.
Resources:
Dana Farber Cancer Institute https://www.dana-farber.org/
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
nbmtLINK YouTube Page can be found by clicking here.
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
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