Heather Jim, Ph.D, on Chronic Graft Versus Host Disease Sleep Related Issues
06/21/22 • 14 min
Heather Jim, PhD, is a senior member and co-leader of the Health Outcomes and Behavior Research Program at Moffitt Cancer Center in Tampa. Today she walks us through ways to combat sleep issues related to chronic Graft vs. Host Disease. Hopefully the tips here will help all of us get a better night's sleep.
Heather begins by walking us through the importance of sleep, and how that changes as we age. Interestingly, 30% of the general population report sleep problems, but for transplant recipients, that number can rise as high as 60%. We cover some of the most common types of sleep issues, including sleep apnea, insomnia, and restless leg syndrome.
While there are sleeping medications out there, Heather explains Cognitive Behavioral Therapy for Insomnia, or CBTI. While there are psychologists and social workers who specialize in CBTI, there are many practices we can all employ on our own, to stop sabotaging our sleep cycles. This includes mobile apps, linked below in our show notes.
There are seven rules CBTI rules to help improve sleep:
- Set aside an hour to wind down before bed (this includes turning screens off!)
- Only go to bed when you start to feel sleepy.
- If you can't fall asleep in 20-30 minutes, get up and do something boring.
- Use an alarm clock to get out of bed at the same time every day.
- Use your bed and bedroom only for sleep and sexual activities.
- Limit naps during the day, especially after 1pm.
- Limit the time spent in bed to actual time sleeping.
Heather explains that good quality sleep is not only important for patients, but for caregivers as well. Sometimes, transplant can be more stressful for the caregiver, and if they don't take care of themselves, it will harm their ability to help their patients.
Resources:
Shut Eye App: https://www.shuteye.ai/
Somryst App: https://www.somryst.com/
Calm App: https://www.calm.com/
Heather Jim's Bio: https://moffitt.org/research-science/researchers/heather-jim/
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 this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
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
Heather Jim, PhD, is a senior member and co-leader of the Health Outcomes and Behavior Research Program at Moffitt Cancer Center in Tampa. Today she walks us through ways to combat sleep issues related to chronic Graft vs. Host Disease. Hopefully the tips here will help all of us get a better night's sleep.
Heather begins by walking us through the importance of sleep, and how that changes as we age. Interestingly, 30% of the general population report sleep problems, but for transplant recipients, that number can rise as high as 60%. We cover some of the most common types of sleep issues, including sleep apnea, insomnia, and restless leg syndrome.
While there are sleeping medications out there, Heather explains Cognitive Behavioral Therapy for Insomnia, or CBTI. While there are psychologists and social workers who specialize in CBTI, there are many practices we can all employ on our own, to stop sabotaging our sleep cycles. This includes mobile apps, linked below in our show notes.
There are seven rules CBTI rules to help improve sleep:
- Set aside an hour to wind down before bed (this includes turning screens off!)
- Only go to bed when you start to feel sleepy.
- If you can't fall asleep in 20-30 minutes, get up and do something boring.
- Use an alarm clock to get out of bed at the same time every day.
- Use your bed and bedroom only for sleep and sexual activities.
- Limit naps during the day, especially after 1pm.
- Limit the time spent in bed to actual time sleeping.
Heather explains that good quality sleep is not only important for patients, but for caregivers as well. Sometimes, transplant can be more stressful for the caregiver, and if they don't take care of themselves, it will harm their ability to help their patients.
Resources:
Shut Eye App: https://www.shuteye.ai/
Somryst App: https://www.somryst.com/
Calm App: https://www.calm.com/
Heather Jim's Bio: https://moffitt.org/research-science/researchers/heather-jim/
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 this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
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
Previous Episode
Caregiver Ann Haehn Shares Best Ways to Support Your Loved One Battling Chronic Graft Versus Host Disease
Colorado's Ann Haehn and her daughter Genny are two truly special people. Today, Ann takes us on their journey through Genny's transplant and subsequent battles with chronic Graft vs Host Disease.
After a very grim diagnosis, Ann and the rest of Genny's village found a doctor that felt he could get Genny through transplant at Colorado Blood Cancer Institute. During a long six-month pre-transplant process, Ann moved in with Genny and her kids. Genny's new boyfriend (now husband) Josh was also a huge help as well.
After the transplant came 30 days of isolation, followed by 100 days of living in an apartment near the hospital. That meant finding 130 days of child care, which Ann managed to do, with a lot of help from a lot of people, while she stayed with her daughter. Then, two weeks prior to hospitalization, Ann lost her mom unexpectedly.
Ann speaks candidly about what it took to get Genny through transplant and recovery, cleaning up puke, watching the same movie over and over again when Genny kept falling asleep, laughing, crying, blogging, and even some wine for Ann at the end of the night.
Caregivers are expected to be stoic and talks about dealing with her emotions and being a human herself. This includes maintaining the mother-daughter relationship through the caregiver-patient one.
After transplant, Genny developed GVHD, which at first was a good sign because it meant the transplant was working. Over time though, this developed into chronic GVHD, which affected Jenny's joints and ability to walk. She sometimes needed a cane, walker, or wheelchair.
Before treatment, Ann promised Genny a trip to Europe. And when she was well enough, the whole family went - with a wheelchair, IV bags, medication, and more. You'll crack up as Ann tells you the hilarious moments of this trip. Essentially, they found a way to do what they wanted to do, in spite of Genny's GVHD.
Ann talks about how far GVHD treatment has come, and how Genny's GVHD seemed to "level off" after about six years. While the unpredictability of this disease can be frustrating, for most, brighter days are ahead.
Finally, Ann describes her experience as a caregiver in three words. "A sacred honor."
Ann and Genny's experience led them to create an organization called Genny's Hope, which has recently joined the Small Choices Foundation, started in fact, by one of Genny's nurses! Links Below.
Resources:
Small Choices Foundation: https://www.smallchoicesfoundation.org/
Genny's Hope: https://www.smallchoicesfoundation.org/gennyshope
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 this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
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
Dr. Sean Smith on Improving and Maintaining Mobility with Chronic Graft Versus Host Disease
Dr. Sean Smith is the director of the cancer rehabilitation program at Michigan Medicine, in Ann Arbor, as well as an associate professor at the University of Michigan. He's dedicated to helping patients improve function as it relates to a variety of musculoskeletal, neurological and cognitive deficits related to cancer and its treatment.
Dr. Smith says every patient is different, and they may try many treatments at once to find the best fit for each individual situation. The sooner he and his team can intervene, often the better the results.
Skin and muscle tightening can sometimes occur with chronic GVHD. One of the first treatment methods is stretching - whether that's giving a patient stretching exercises to do or employing the help of a physical or occupational therapist. There are also other methods to break up scar tissue. Other tactics may include cortisone injections, paraffin baths, and oral or topical steroids. Dr. Smith explains how these tools are used.
Fatigue is a very common issue relating to chronic Graft vs. Host Disease. This can be due to anemia, drug side effects, poor sleep, and other factors. Our guest walks through treatment of each of these individual symptoms.
Exercise, mindfulness, and even meditation are key tools in Dr. Smith's toolbox. Your definition of exercise may be different than before transplant, but spending the time doing what you can is so important. He shares some sobering numbers about how quickly muscles can deteriorate after transplant if not used. Dr. Smith also talks about "pre-habilitation" - the exercise you can do before transplant.
Resources:
Dr. Sean Smith Bio: https://medicine.umich.edu/dept/pmr/sean-r-smith-md
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 this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
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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