Beats by Social Work

In this episode, hosts Kristin and Tiffany delve into the taboo topic of sex, highlighting its significance in the lives of solid organ transplant recipients and LVAD patients. They stress the importance of normalizing conversations around intimacy, emphasizing its positive impact on emotional well-being and overall quality of life.

Quote: Sex is both healthy and risky because sex connects us”. Matthias Roberts

Key Points:

Importance of Intimacy: Intimacy encompasses emotional, physical, and sexual connections, playing a vital role in building relationships and promoting well-being. Recognizing this importance validates the needs of transplant recipients and LVAD patients for connection, supporting their holistic recovery process and quality of life.

Pleasure-Based vs. Performance-Based Sex: Shifting the focus from performance-based to pleasure-based sex is crucial for individuals adjusting to life with chronic illness. Pleasure-based sex involves open communication, focusing on physical sensations, and embracing various activities, emphasizing fun, pleasure, and intimacy with the partner.

Safety Precautions: Intimacy post-transplant or with an LVAD requires careful consideration due to specific medical considerations and modifications. Patients and partners must consult healthcare teams to understand guidelines, including infection prevention, wound care, and medication management. Safety is paramount for a satisfying intimate life.

Normalizing Sex and Intimacy: Transplant/LVAD Social workers and a patient’s individual psychotherapist can play a vital role in normalizing conversations about sex and intimacy. By initiating open discussions, we reduce stigma, facilitate communication, and help patients and partners address their concerns comfortably and safely.

Providing Education and Resources: Transplant/LVAD Social workers and a patient’s individual psychotherapist can offer direction towards where to find educational materials and resources, guiding patients on safe practices and addressing concerns. Referral to peer forums, support groups, or counseling services specializing in sexual health can enhance patient support overall.

Collaboration with Healthcare Team: Collaboration with the patient's healthcare team ensures comprehensive care. Social workers work with physicians, nurses, and specialists to address medical, psychological, and emotional aspects of intimacy, offering holistic support.

Normalizing Emotional Support: Acknowledging and addressing the emotional aspects of intimacy, including anxiety, fear, guilt, and body image concerns, is vital. Social workers and therapists offer emotional support, normalizing these emotions and providing coping strategies for patients.

In conclusion, normalizing intimacy for transplant recipients and LVAD patients is essential for their overall well-being. By embracing conversations around intimacy, ensuring safety, and providing emotional support, social workers and therapists empower patients and partners to navigate this aspect of their lives, enhancing their quality of life.

 Resources and references utilized in today’s episode:

·         https://pubmed.ncbi.nlm.nih.gov/21372729/  

·         https://www.mylvad.com/patients-caregivers/lvad-lifestyle/living-lvad/intimacy-and-relationships-lvad  

·         https://www.sciencedirect.com/science/article/pii/S0022522303021147  

·         https://www.researchgate.net/publication/268087249_SEX_AND_INTIMACY_AMONG_PATIENTS_LIVING_WITH_AN_LVAD  

·         https://www.heartandlung.org/article/S0147-9563(11)00224-X/fulltext  

·         https://www.psychologytoday.com/us/blog/sex-love-in-chronic-illness/202201/sexual-creativity-chronic-illness  

·         https://www.psychologytoday.com/us/blog/sex-love-in-chronic-illness/202009/sexual-challenges-chronic-illness  

·         https://www.psychologytoday.com/us/blog/sex-love-in-chronic-illness/202007/the-grief-process-chronic-illness-and-sexuality   

·         https://youtu.be/UEpqJJoDRNk  

·         https://onlinelibrary.wiley.com/doi/full/10.1002/ehf2.12014

·         https://journals.lww.com/transplantjournal/Fulltext/2020/09003/SEXUAL_FUNCTION_AFTER_LEFT_VENTRICULAR_ASSIST.879.aspx

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Like, subscribe, and review, to ensure the best goes on ;) We ALWAYS appreciate feedback from our listeners. If you have questions, comments, or suggestions, or if you'd like to share any relevant experiences while maintaining HIPPA compliance, reach out on any of our platforms:

 Email: [email protected]

Social media: @beatsbyswpodcast

Website: beatsbysw.onpodium.co

Disclaimers:

If you are a patient or professional experiencing a medical or mental health crisis, please seek immediate help. If you are having a medical crisis/emergency please call 911 or go to the nearest hospital. The information we share is not medical advice; consult your healthcare provider for specific medical conditions. If you are having a mental health crisis call 911 or the National Suicide Hotline Toll-Free Number at 1-800-273-TALK (8255) or your local suicide hotlines including 988.

 For transplant and LVAD social workers and other professionals, our insights come from our experience as Certified Clinical Transplant and Mechanical Circulatory Support Social Workers. Our views are our own and not affiliated with any specific institution. This podcast is for educational and entertainment purposes and does not override any institutional policies or guidelines. As humans, we may make mistakes, but we're open to feedback and strive for accuracy. If we say something incorrect or inappropriate, please let us know so we can improve. We're here to share information and connect with our audience respectfully.

Today’s episode is one of our off-beat episodes, and we think it is one of our better ones. Kristin and Tiffany talk about their favorite topic… Being a Social Worker, the best and worst parts and all the between. Take a listen to this fun episode where Kristin surprises Tiffany with a different approach to the show flow. We also mention the Enneagram on today’s episode, we invite you to take the Enneagram quiz we included links below. Be on the lookout on our Instagram page as we plan to engage with our listeners by asking you all similar questions.  

We did not start with a quote, but here is a quote anyway: “If you care enough to wonder if you’re getting it wrong, you’re probably getting it right.” -Unknown but often attributed to a version said by writer, humorist, lecturer James Thurber

Enneagram Tests:

https://www.truity.com/test/enneagram-personality-test

https://www.enneagraminstitute.com/type-descriptions

Thanks for dropping the beat with us! Give us a like, subscribe, and review to ensure the beat goes on. We love to hear from our listeners, please feel free to email us at [email protected] with questions/comments/suggestions or any beat box moments you’re comfortable with us sharing while maintaining HIPPA compliance.

Email: [email protected]

Social media: @beatsbyswpodcast

Website: beatsbysw.onpodium.co

Disclaimers:

If you are a patient or professional experiencing a medical or mental health crisis, please seek immediate help. If you are having a medical crisis/emergency please call 911 or go to the nearest hospital. The information we share is not medical advice; consult your healthcare provider for specific medical conditions.

If you are having a mental health crisis call 911 or the National Suicide Hotline Toll-Free Number at 1-800-273-TALK (8255) or your local suicide hotlines including 988

For LVAD social workers and transplant professionals, our insights come from our experience as Certified Clinical Transplant and Mechanical Circulatory Support Social Workers. Our views are our own and not affiliated with any specific institution. This podcast is for educational and entertainment purposes and does not override any institutional policies or guidelines. As humans, we may make mistakes, but we're open to feedback and strive for accuracy. If we say something incorrect or inappropriate, please let us know so we can improve. We're here to share information and connect with our audience respectfully.

On today’s episode Tiffany and Kristin talk about the importance of emergency preparedness planning, especially for patients in: end stage organ failure, pre advanced therapies, post-transplant, and/or post implant. They share stories of their personal experiences helping patients through natural disasters while also navigating their own need. This episode includes resources and information based on their own experiences with natural disaster and accrediting boards. 

Quote: “when disaster strikes, the time to prepare has passed.” Steven Cyros

CMS final rule on Emergency Preparedness Requirements for Medicare and Medicaid Participating Providers and Suppliers was published (Federal Register Vol. 81, No. 180) on September 16, 2016 which became effective on November 15, 2016 and implemented on November 15, 2017. Updates to The Hospital (and Transplant Program) Requirements CMS Emergency Preparedness Final Rule were made effective March 26, 2021

Resources

Federal Emergency Management Agency

FEMA.gov

FEMA Transitional Sheltering Assistance (TSA)

Transitional Sheltering Assistance | FEMA.gov

Disaster Assistance.gov Provides resources for individuals, businesses, and communities. 

Home | disasterassistance.gov

Ready.Gov

https://www.ready.gov/be-informed

Benefits.gov- Disaster Relief information

benefits.gov/categories/Disaster Relief

Do 1 Thing- Small steps toward being prepared for an Emergency

Welcome - Emergency Preparedness (do1thing.com)

Thanks for dropping a beat with us! Like, subscribe, and review, to ensure the best goes on ;) Check out our website for extended show notes and resources. We so appreciate feedback from our listeners. If you have questions, comments, or suggestions, or if you'd like to share any relevant experiences while maintaining HIPPA compliance, reach out on any of our platforms:

Email: [email protected]

Social media: @beatsbyswpodcast

Website: beatsbysw.onpodium.co

Disclaimers:

If you are a patient or professional experiencing a medical or mental health crisis, please seek immediate help. If you are having a medical crisis/emergency please call 911 or go to the nearest hospital. The information we share is not medical advice; consult your healthcare provider for specific medical conditions.

If you are having a mental health crisis call 911 or the National Suicide Hotline Toll-Free Number at 1-800-273-TALK (8255) or your local suicide hotlines including 988

For LVAD social workers and transplant professionals, our insights come from our experience as Certified Clinical Transplant and Mechanical Circulatory Support Social Workers. Our views are our own and not affiliated with any specific institution. This podcast is for educational and entertainment purposes and does not override any institutional policies or guidelines. As humans, we may make mistakes, but we're open to feedback and strive for accuracy. If we say something incorrect or inappropriate, please let us know so we can improve. We're here to share information and connect with our audience respectfully.

***This episode comes with a trigger warning. We discuss grief, loss, and death. If you are not in a place to listen we invite you to skip and tune in when you are ready or to our next episode ***

Today Kristin and Tiffany talk about the heaviness of our work in transplant and LVAD; however really this can pertain to anyone that works with chronic illness, end stage organ failure, transplant and/or LVAD. We specially discuss disenfranchised grief: Ken Doka defines this as Losses that one experiences that are not openly acknowledged, socially supported, or publicly mourned. Corr defined as: “grief that one experiences when a person incurs a loss that goes against cultural norms and is not considered valid by others.” This can include person, place or thing). Examples: Non death loss; Stigmatized loss; ambiguous loss. We explore this type of grief related to the LVAD patients’ loss of water activities, transitioning from LVAD team to transplant team, the kidney patient transitioning from dialysis team to transplant team. We consider the family’s loss of team when patient passes and grief the transplant team may experience when the loss of a patient occurs. We discuss ways to honor this loss and ways to support one another.

For those seeking professional credentials, this episode qualifies for credit through the Society for Transplant Social Work for the MCS credential. Please complete the knowledge check (powered by survey monkey):

Episode Quote: “No rule book, No time frame, No judgment. Grief is as individual as a fingerprint. Do what is right for your soul.” - Michelle Steinke

“You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” Patch Adams

Resources:

Death Café

https://deathcafe.com/

Death Cafés: Where Communities Affirm Grief | AJPH | Vol. 111 Issue S2 (aphapublications.org)

‘It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand Paperback’ – by Megan Devine

We highly value feedback from our listeners. If you have questions, comments, or suggestions, or if you'd like to share any relevant experiences while maintaining HIPPA compliance, feel free to email us at [email protected]

Thank drop beat with us, if you want to beatbox more check us out on

Social media: @beatsbyswpodcast

Our website: Beats by Social Work (onpodium.co).

Like,subscribe, and review, to ensure the best goes on ;)

A disclaimer: If you are a patient experiencing a medical or mental health crisis, please seek immediate help. The information we share is not medical advice; consult your healthcare provider for specific medical conditions. If you are having a medical crisis/emergency please call 911 or go to the nearest hospital. If you are having a mental health crisis call 911 or the National Suicide Hotline Toll-Free Number at 1-800-273-TALK (8255) or your local suicide hotlines including 988

For LVAD social workers and transplant professionals, our insights come from our experience as Certified Clinical Transplant and Mechanical Circulatory Support Social Workers. Our views are our own and not affiliated with any specific institution. This podcast is for educational and entertainment purposes and does not override any institutional policies or guidelines.

As humans, we may make mistakes, but we're open to feedback and strive for accuracy. If we say something incorrect or inappropriate, please let us know so we can improve. We're here to share information and connect with our audience respectfully.

of medical history from a psychosocial perspective. We dive into the why we look at medical history and how it ties into the psychosocial perspective. This ties into the transplant/lvad social work best practice of: Exploring the patient’s understanding of transplant process (Comprehension) and assessing for Self-Management with Medical Treatment (Compliance). We of course take some detours along the episode, but always find our way back on track. So buckle up and join us on today’s journey. 

Episode Quote: “The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated.”

— Plato”

Thanks for dropping the beat with us!

We hate to sound basic, but if you are enjoying our show please like, subscribe, and rate us (even if you do not like us that gives us feedback too). This will lead more people to the show to learn more about the psychosocial factors of transplant and LVAD as well as allow people to learn more about the community we are so passionate about- Transplant/LVAD Social Workers. 

Please check out our website Beats by Social Work (onpodium.co) for additional resources.

Be sure to follow us on social media: @beatsbyswpodcast

We love to hear from our listeners, please feel free to email us at [email protected] with questions/comments/suggests or any beat box moments you’re comfortable with us sharing while maintaining HIPPA compliance.

Resources: 

Link the author you mentioned. 

Medical History - StatPearls - NCBI Bookshelf (nih.gov)

Medical History - StatPearls - NCBI Bookshelf (nih.gov)

Family Health History: The Basics | CDC

The Importance of Medical History - RedSaf.org

In today's episode, we, Kristin and Tiffany, are diving into the world of Left Ventricular Assist Devices (LVADs). These innovative mechanical devices are designed to support individuals facing severe heart failure. LVADs assist the left ventricle, the heart's main pumping chamber, in efficiently circulating blood throughout the body. They can serve as a bridge-to-transplantation for patients awaiting a heart transplant or as a long-term treatment for those ineligible for transplant. By enhancing cardiac function, LVADs offer hope for improved quality of life and extended survival for individuals with advanced heart failure. Our discussion will focus on the psychosocial impact of LVADs on patients and their support systems.

While we won't cover every psychosocial impact in this episode, it's essential to recognize that patients and their support systems may experience various stressors and impacts, such as emotional adjustment, social support, changes in quality of life, caregiver stress, financial concerns, body image, coping strategies, communication challenges, patient education, and long-term adjustment.

Here are some valuable resources related to LVADs:

Left Ventricular Assist Devices (LVADs) | Abbott (cardiovascular.abbott)

HeartMate 3 LVAD Patient Education | Abbott (cardiovascular.abbott)

 MyLVAD

LVAD GEAR: LVAD Life Made Easier! LVAD Shirts, Vest and Bags

The past, present and future of the device keeping alive Carew, thousands of HF patients | American Heart Association

Heart Failure Society of America (HFSA) Home

https://www.mayoclinic.org/tests-procedures/ventricular-assist-device/about/pac-20384529 

For those seeking professional credentials, this episode qualifies for credit through the Society for Transplant Social Work for the MCS credential. Please complete the knowledge check (powered by survey monkey): https://www.surveymonkey.com/r/Q8BV5F8

For additional insights and resources, visit our website Beats by Social Work (onpodium.co). Follow us on social media with the Instagram handle @beatsbyswpodcast

We highly value feedback from our listeners. If you have questions, comments, or suggestions, or if you'd like to share any relevant experiences while maintaining HIPPA compliance, feel free to email us at [email protected]

A disclaimer: If you are a patient experiencing a medical or mental health crisis, please seek immediate help. The information we share is not medical advice; consult your healthcare provider for specific medical conditions. If you are having a medical crisis/emergency please call 911 or go to the nearest hospital. If you are having a mental health crisis call 911 or the National Suicide Hotline Toll-Free Number at 1-800-273-TALK (8255) or your local suicide hotlines.

For LVAD social workers and transplant professionals, our insights come from our experience as Certified Clinical Transplant and Mechanical Circulatory Support Social Workers. Our views are our own and not affiliated with any specific institution. This podcast is for educational and entertainment purposes and does not override any institutional policies or guidelines.

As humans, we may make mistakes, but we're open to feedback and strive for accuracy. If we say something incorrect or inappropriate, please let us know so we can improve. We're here to share information and connect with our audience respectfully.

Join Tiffany and Kristin with exciting guest, Lisa Yoder from Biomatrix Specialty Pharmacy. 

"BioMatrix Specialty Pharmacy offers comprehensive nationwide specialty pharmacy services and digital health technology solutions for a range of chronic health conditions. Our growing family of companies unites leaders in the specialty pharmacy industry to improve health and empower patients to experience a higher quality of life."

Lisa has worked within the transplant and LVAD community for many years and offers wonderful insight into the different perspectives of life after transplant.

Thanks for dropping the beat with us!

Please check out our website Beats by Social Work (onpodium.co) for additional resources.

Be sure to follow us on social media @beatsbyswpodcast

We love to hear from our listeners, please feel free to email us at [email protected] with questions/comments/suggests or any beat box moments you’re comfortable with us sharing while maintaining HIPPA compliance. 

This episode is dedicated to Liz

On today’s episode Kristin and Tiffany get to chat with Murphy Swiedals (though in the medical community she is known as Murphy Stidham) as she openly shares her journey through transplant. Murphy received a double lung transplant when she was 24 after being diagnosed with COPA Syndrome at the age of 2. COPA (an inherited mutation in the coatomer subunit alpha gene) is a rare genetic autoimmune disorder that can affect multiple systems of the body, especially the lungs, kidneys and joints. Murphy talks about growing up with a chronic illness and going through the transplant journey as a young adult. Murphy talks about her balance of being a patient, being her own person, and her relationships with her health team.

This episode’s quote was actually a song that Murphy used to get through her journey. She shares her story of Kesha’s song Praying that helped her get through her waiting and hospitalization. Listen here: https://youtu.be/v-Dur3uXXCQ

Lyrics can be found on our webpage, but a favorite line from the song: 

“I'm proud of who I am

No more monsters, I can breathe again

And you said that I was done

Well, you were wrong and now the best is yet to come

'Cause I can make it on my own

And I don't need you, I found a strength I've never known”

COPA Information:

COPA Syndrome Foundation – COPA Syndrome Foundation

COPA Syndrome - Symptoms, Causes, Treatment | NORD (rarediseases.org)

Please visit our show website for more resources and additional information related to today’s episode:

Beats by Social Work (onpodium.co)

We love hearing from our listeners and having the opportunity to interact.

 Send us an email at: [email protected]

Check us out on Instagram: @BeatsBySWPodcast

Alisha Hiebert, Liver Recipient and Transplant Lyfe Community Manager joins Tiffany and Kristin as special guest to talk about her experience receiving a Liver transplant and what life has looked like since her transplant.

Today a fun fact instead of a quote: You are 6x more likely to need an organ transplant than to become a deceased organ donor American Journal of Transplant “Lifetime probabilities of needing an organ transplant versus donating an organ after death; Shemie SD, Hornby L, Chandler J, Nickerson P, Burkell J. Lifetime probabilities of needing an organ transplant versus donating an organ after death. Am J Transplant. 2011 Oct;11(10):2085-92. doi: 10.1111/j.1600-6143.2011.03675.x. Epub 2011 Aug 3. PMID: 21812924.

Mission

Lyfebulb is an innovation accelerator that bridges the gap between patient communities and the healthcare industry by working directly with patients and care partners to generate insights, build new solutions, and bring revolutionary products to market. Transplant Lyfe is a sub community born from Lyfebulb.

Transplant Lyfe advocates for patient-driven innovation; They are thinkers and innovators. They  are patients and care partners ourselves.

Alisha's Bio

Alisha is a fiery, poetic redhead living on the Canadian prairies. After complications due to a metabolic liver condition she was diagnosed with shortly after birth, she received a liver transplant in August 2020. Thanks to the generous gift of life from not one but two donors, Alisha has begun what she calls the beautiful second life.  She is a grief embodiment worker, speaker and writer raising awareness for organ donation and medical trauma. She is also a trauma and grief doula. She lives with her husband and their rescue puppy and is a lover of coffee and all things cozy.

https://transplantlyfe.com/

Alisha Hiebert - Lyfebulb

Alisha Hiebert, SBD – Still Birth Day Stillbirthday Birth & Bereavement Doulas® (SBD) provide support prior to, during and after birth in any trimester.  SBD doulas are both birth doulas, and bereavement doulas.

Read the article Rebirth: Rebirth - Lyfebulb

A passage from Alisha's article Rebirth: “The last thing I remember before that moment was waiting to be taken into the OR. I’d already crossed the sterile line, through the double doors into the place where I had to do this alone. There was no one to carry me across the threshold, no one to sit beside me and hold my hand as I crossed over from one life to the next. It was only me, alone. I stared at the ceiling and tried not to cry. I concentrated on the sounds of the nursing shift changeover, with the morning nurses shuffling in with their hands full of coffee and the night nurses with their tired eyes grabbing their bags and heading towards the door. Back out of the land of transition, back into the world of the living. Something about waiting in that OR felt like sacred and holy ground. I kept waiting for someone to walk through the doors that I knew, for someone to come and talk to me to relieve my fears, but every moment I waited pressed into me the fact that I was alone for this part….And then I remember waking up. For all intents and purposes, I was alone for this part too. I had to carry myself over the threshold. I had to cross over all on my own, from one life to the next. The act of healing is a solitary journey. Doctors and nurses and loved ones cared for me but in the end this work was the kind I needed to do alone. And so I woke up, in this formless nothing, and I don’t remember much except that I felt new life stirring inside me. There’s no good way to describe it except for I felt like I was alive again. Right where my liver rests, I could feel what felt like a glowing, amber light that cradled my body from the inside out….It was like death, but better. It was rebirth.”

Thanks for dropping the beat with us!

 Please check out our website Beats by Social Work (onpodium.co) for additional resources.

Be sure to follow us on social media @beatsbyswpodcast

We love to hear from our listeners, please feel free to email us at [email protected] with questions/comments/suggests or any beat box moments you’re comfortable with us sharing while maintaining HIPPA compliance. 

On today’s episode Tiffany and Kristin get the opportunity to chat with President and CEO of Donate Life America- David Fleming. We talk about the history of Donate Life America, the current state of DLA, and the goals for the future. We also learn more about the Donate Life Logo and symbolism.

Over the past 30 years, Donate Life America has driven the efforts to increase organ, eye and tissue donation – both publicly and within the professional donation and transplantation community. Through wisdom of experience and the actions of dedicated volunteers and talented leadership, DLA continues to produce effective campaigns and monumental initiatives saving more lives. Donate Life America's mission statement is "To increase the number of donated organs, eyes and tissues available to save and heal lives, while developing a culture where donation is embraced as a fundamental human responsibility."

Resources:

https://www.youtube.com/watch?v=BH04JOjzYu4

Donate Life America: Donate Life America

National Donor Registry: www.registerme.org

National Donate Life Registry - Donate Life America

Scientific Registry of Transplant Recipients: Find and Compare Transplant Programs (srtr.org)

Camden’s Living Donor Story: SDNAMC receives first living kidney donor in the U.S. through new registry | St. David's HealthCare (stdavids.com)

Thanks for dropping the beat with us!

Please check out our website Beats by Social Work (onpodium.co) for additional resources.

Be sure to follow us on social media @beatsbyswpodcast

We love to hear from our listeners, please feel free to email us at [email protected] with questions/comments/suggests or any beat box moments you’re comfortable with us sharing while maintaining HIPPA compliance.