Our 13th season of the Marrow Masters podcast, produced by the National Bone Marrow Transplant Link, is out June 1, 2024. This season will focus on side effects of bone marrow and stem cell transplant, including GVHD. As always, you'll hear expert advice from professionals.
You'll hear from patients who are open and honest about their experiences.
Caregivers are also a key part of the journey, who also must take care of themselves physically, mentally, and for some, spiritually.
The Marrow Masters podcast is produced by the National Bone Marrow Transplant Link and sponsored this season by Sanofi. Look for all six episodes June 1 on Apple, Spotify, YouTube or wherever you're listening right now. And for more, visit the National Bone Marrow Transplant Link, nbmtlink.org or follow the link below.
Jon: Our 13th season of the Marrow Masters podcast, produced by the National Bone Marrow Transplant link, is out June 1, 2024. This season will focus on side effects of bone marrow and stem cell transplant, including GVHD. As always, you'll hear expert advice from professionals.
Dr. Navneet Majhail: There is no one size that fits everybody. It has to be centered and aligned to what the needs for a given patient are. That's where I think we need some flexibility to be dynamic. Patient needs change over time.
Flora Stendell: So I tell patients all the time. I know some of them feel, oh, we're bothering our providers. You're not bothering us. We want to know, because if it is graft versus host, the faster we take control of the graft versus host, the faster we're able to treat it, the less long-term side effects it can have for our patients.
Heather Knutson: Sometimes caregivers might appear to the patient like they are nagging. They're asking over and over and over again, “Would you want this? Do you want this? Are you hungry?” And the caregiver means it out of love. They are trying their best to provide that care, but sometimes that can create quite that strain.
Jon: You'll hear from patients who are open and honest about their experiences.
Beth Ades: I was very excited to come home, and we had wonderful social workers, and one of them told me, “You're about to go out into a world that's figured out how to get along without you.” And that was really hard to hear. But I did need to hear it, because when you're in transplant, you're so consumed with everything that you need to do. Lab work, doctor appointments, transfusions, infusions. It is 100% your life. And so when my doctor said, “Yep, you're well enough to go home. Congratulations.” I came home, and I realized that everyone else's lives continued on because they have to.
Janet Young: I had thought, well, I'm gonna be fatigued. It is like nothing you've ever felt. I would get up in the morning, and within ten minutes, I'd have to lie down on the couch. I finally got the energy up after maybe a month, to go out and sit on my front patio, which is only eight steps outside the door. I was thinking to myself, will I ever be able to make it to the driveway? And then I would say, will I ever make it to the end of the driveway? Now it's 21 months post-transplant, and I just took my first walk of two and a half miles, so I feel like a hero.
Jon: Caregivers are also a key part of the journey, who also must take care of themselves physically, mentally, and for some spiritually.
Rachael Sommer: I think being connected to God and being surrounded by those who are there for me and who could just be with me. Where I was at with spiritual encouragement was really helpful. It was just really important to be able to feel free to be real with myself and with God about where I was at, at any moment, even if that meant being angry or expressing frustration or not understanding and people letting me know that it was okay if I couldn't even find the words to pray because I definitely just couldn't even speak sometimes. But they would just pray for me and lift me up, you know, when my heart was just in despair.
Jon: The Marrow Masters podcast is produced by the National Bone Marrow Transplant Link and sponsored this season by Sanofi. Look for all six episodes June 1 on Apple, Spotify, YouTube or wherever you're listening right now. And for more, visit the National Bone marrow transplant link@nbmtlink.org or follow the link below.