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

 Thanks for dropping a beat with us!

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: BeatsBySW@gmail.com

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 BeatsBySW@gmail.com with questions/comments/suggestions or any beat box moments you’re comfortable with us sharing while maintaining HIPPA compliance.

Email: BeatsBySW@gmail.com

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: BeatsBySW@gmail.com

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 BeatsBySW@gmail.com

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 BeatsBySW@gmail.com 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 BeatsBySW@gmail.com

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 BeatsBySW@gmail.com 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: BeatsBySW@gmail.com

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 BeatsBySW@gmail.com 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 BeatsBySW@gmail.com with questions/comments/suggests or any beat box moments you’re comfortable with us sharing while maintaining HIPPA compliance. 

Trigger warning: this episode is raw and talks about loss and grief, if you are not in a place to hear that we understand and give you a moment to turn this episode off.

We always say we all got into transplant in one way or another and usually there is a personal story associated with it and we as your hosts are no different. So today’s episode we are we are going to switch things up a little bit. Kristin chats with cohost Tiffany and Alex, former transplant social worker as they share their story of personal experience with transplant and donation. Today’s episode talks about the impact of transplant and donation on the family as they discuss life, love, and loss and resilience. As a disclaimer, they share their stories back and forth, therefore you may experience a bit of whiplash, however it will make sense as you listen. We also want to give you a trigger warning, this episode does talk about death an grief, if you are not in a place to to listen to this we understand and invite you to listen when you are ready. 

Alex is a former kidney transplant social worker, now working as a Neuro Oncology Social Work Navigator. Alex is the daughter of a lung transplant recipient, a wife and mother of 2 adorable little boys. And you all know Tiffany, but what you may not know, she is the daughter of an organ donor.

We love hearing from our listeners, and we imagine this episode may elicit some questions/comments so we invite you to connect with us through email at BeatsBySW@gmail.com 

Enjoying this podcast and want more Beats by Social Work in your life? Follow us on Instagram: @BeatsBySWPodcast 

“If nothing else, one day you can look someone straight in the eyes and say. “But I lived through it. And it made me who I am today” -Anonymous

Disclaimer: The information shared on this podcast is for informational and/or entertainment purposes only and is HIPPA compliant. The information shared on this podcast comes from two Certified Clinical Transplant and Mechanical Circulatory Support Social Workers, the views and opinions expressed are our own and not affiliated with any specific institution but to the community of transplant and MCS Social Work at Large. The information shared here is for educational and entertainment purposes and is not meant as a substitute for medical advice, diagnosis, or treatment. Furthermore, it is not meant to override policies or guidelines for any institution or organization. 

Beats by Transplant Social Work, Hosts Kristin &Tiffany, and affiliated guests and programs expressly disclaim responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered as a result of your reliance on the information contained in this podcast or in any Media; and none of the persons and entities noted above endorse specifically any test, treatment, or procedure mentioned on the show. Always consult your own health care provider before making any healthcare decisions or for guidance about a specific medical condition. 

Our goal is to provide you with the most accurate information in the most respectful way, however we are human and we ask for grace and accountability. If we say something you feel is incorrect or inappropriate, please tell us so we can correct ourselves and work to be better.

On today’s episode Kristin and Tiffany chat with the President and CEO of Children’s Organ Transplant Association, Rick Lofgren. Rick talks about his over 24 years of stories working within the transplant community. As promised our goal is to humanize the world of transplant/LVAD from a social work perspective as well as provide resources and education. Take a listen to learn more about this organization. Below is general link for COTA as well as resources for transplant professionals. 

Childrens Organ Transplant Association (cota.org)

Transplant Professionals | Children's Organ Transplant Association (cota.org)

Join Kristin and Tiffany with special guest Kate Lacouture, Outreach Representative with Help Hope Live.

Kate is one of the many wonderful contacts at Help Hope Live that help families and social workers in the transplant community. She likes hiking, running, skiing, the beach, concerts, watching the NY Jets and Philadelphia Eagles every Sunday, and spending time with my family and friends. She is quoted by Help Hope Live to say, "I am grateful for the opportunity to educate people about the benefits of Help Hope Live and the positive impact our nonprofit can have on individuals who are in need of extra support to pay for critical care."

Help Hope Live is a fundraising agency whose mission is to support community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. "For 40 years, Help Hope Live has been showing clients and families how to bring together a network of relatives, friends, and neighbors in fundraising efforts to help cover the cost of uncovered medical expenses. These efforts play a critical role in helping our clients recover and maintain their health and independence." (https://helphopelive.org/about/mission-values/)

Be sure to take a look at our website for additional resources and links.. We would love to connect with you! check out our social media platforms: 

Email: beatsbysw@gmail.com

Website: https://beatsbysw.onpodium.com/

Instagram: @beatsbyswpodcast 

Disclaimer: The information shared on this podcast is for informational and/or entertainment purposes only and is HIPPA compliant. The information shared on this podcast comes from two Certified Clinical Transplant and Mechanical Circulatory Support Social Workers, the views and opinions expressed are our own and not affiliated with any specific institution but to the community of transplant and MCS Social Work at Large. The information shared here is for educational and entertainment purposes and is not meant as a substitute for medical advice, diagnosis, or treatment. Furthermore, it is not meant to override policies or guidelines for any institution or organization. 

Beats by Transplant Social Work, Hosts Kristin &Tiffany, and affiliated guests and programs expressly disclaim responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered as a result of your reliance on the information contained in this podcast or in any Media; and none of the persons and entities noted above endorse specifically any test, treatment, or procedure mentioned on the show. Always consult your own health care provider before making any healthcare decisions or for guidance about a specific medical condition. 

Our goal is to provide you with the most accurate information in the most respectful way, however we are human and we ask for grace and accountability. If we say something you feel is incorrect or inappropriate, please tell us so we can correct ourselves and work to be better.

On today’s episode Kristin and Tiffany are excited to chat with José Ramirez, Jr. and Magdalena Jr. on Hansen's Disease and the impact of facing the stigmatizing nature of disease and chronic illness. Jose and Magdalena are husband and wife but also both social workers who have dedicated their lives to the social work profession and advocating for the chronically ill. We could not think of anyone better to interview in honor of International Social Work Day!

José Ramirez, Jr. is a LCSW who also worked as a consultant on stigma to the World Health Organization and Nippon Foundation. He is also a consultant on skin conditions to the Cochrane Skin Group Review and Faculty at the University of Texas - Houston Lone Star LEND Program. He has published over 50 articles, made over 100 presentations in 18 different countries and has been featured in media throughout the world. Jose was presented with the "Fighting Spirit Award" by the United Nations, among many other awards throughout his career.

Jose had been sick for years before a Mexican healer told him he had "a disease of the Bible." He was 20 when he was diagnosed with leprosy, known as Hansen's disease, in 1968.

The illness uprooted Ramirez from his large family, his high-school sweetheart, Magdalena, and his home in Laredo, Texas. State officials ordered him to seek treatment at the U.S. Public Health Hospital in Carville, La. — the only leprosarium in the continental United States where he traveled there by hearse.

Magdalena Ramirez has served as a medical social worker throughout her entire career with 38 years working for the Veterans Administration. She was 2001 Texas Social Worker of the Year through NASW Texas and was a keynote speaker in 2002 at an international conference focusing on women affected by Hansen's Disease.

Additional Links:

https://leprosy.org/

A Day at Carville: My Home—Mi Casa

https://leprosytoday.org/narratives/jose-ramirez-jr/history.html

Jose's NPR Interview

https://www.texasmonthly.com/articles/squint-my-journey-with-leprosy/

https://zeroleprosy.org/jose-ramirez/

https://www.nytimes.com/2014/07/01/science/leprosy-still-claiming-victims.html

Purchase Jose's Book "Squint: My Journey with Leprosy"

PBS: Triumph at Carville

José Was Sent Away, Banished To An Institution

Check out our website for additional information and resources: Beats by Social Work - About (onpodium.co)

Like us on Instagram: @BeatsBySWPodcast

Have questions/feedback or a beatbox moment to share? Email us at: BeatsBySW@gmail.com

On today’s episode Tiffany and Kristin continue their discussion on Family System’s Theory as it relates to the world of transplant and LVAD social worker.

This is the second part of a multi-part series diving into the importance of exploring the patient’s family history and the impact it may have on patient present day. In this episode we continue to unpack Bowen’s Family Systems Theory.

“Deep inside us we know what every family therapist knows; the problems between the parents become the problems within the children.” Roger Gould

Be sure to check out the Beats by Social Work website: https://beatsbysw.onpodium.com for additional information and resources related to this episode by referring to the blog posts. While you are there, check out our other resources and information.

Also take a look at our social media for more content @beatsbyswpodcast on Instagram.

In today’s episode Kristin and Tiffany had fun chatting with Danielle Coleman and Kim Fryar, two Certified Child Life Specialists from Wonders and Worries. Wonders & Worries provides free, professional support for children and teenagers through a parent’s serious illness, so that they can reach their full potential. Their experts provide the foundation children and teenagers need to reach their full potential even though their parent is ill. Through individual and group therapy sessions, kids and teens learn about illness and build coping and communication skills. Our comprehensive programming is the only one of its kind in the US. Since 2001, Wonders & Worries has provided the building blocks for families to succeed while dealing with a serious illness.

Episode Quote: Play is the highest form of research. - Albert Einstein 

Please check out our website Beats by Social Work (onpodium.co) for additional resources and information from today’s episode.

Be sure to follow us on social media @beatsbyswpodcast

Thanks for dropping the beat with us.

Join Kristin and Tiffany as they discuss a classic social work theory: Family Systems Theory and how it is incorporated into the world of transplant/LVAD social work.

This will be part one of a multi-part series diving into why transplant and LVAD social workers assess and explore the family of a patient and introduce its important to overall health and wellbeing by incorporating the entire family.

Be sure to check out Beats by Social Work's website: https://beatsbysw.onpodium.com for additional information in the blog posts as well as on social media @beatsbyswpodcast

Join us as we interview Nikki Montgomery, Executive Director of Madvocator Educational and Healthcare Advocacy Training. We discuss bias, advocacy and health literacy in the hospital setting.

“Sometimes you have to get a little mad to change the world.” – Nikki Montgomery

This interview does count as credit for credentialing through The Society of Transplant Social Workers (STSW) for your CCTSW credentials. Please complete the survey found at https://www.surveymonkey.com/r/WS69FZM to complete your education for credit.

About our guest: Nikki (Charisse) Montgomery, MA, MEd, GPAC is the Executive Director of Madvocator Educational and Healthcare Advocacy Training. Her experiences as an educational psychologist, a communications expert, a patient advocate, and the parent of a child with complex healthcare and educational needs led her to create Madvocator. In addition to a graduate certificate in Patient Advocacy, for which her research was focused on increasing the capacity of parents of medically fragile children, Ms. Montgomery has a master’s degree in Educational Psychology with thesis research on critical thinking and engagement for parents of children with disabilities. She served on the Board of Directors for University Hospitals Rainbow Babies & Children’s Hospital and currently serves on the Global Patient and Family Advisory Board for The Beryl Institute.

Nikki is also the author of children's books on complex health issue which can be found at https://madvocator.org/super-safe-kids/

Ms. Montgomery’s professional background includes teaching, corporate training, and working with children and adults with disabilities. She is involved in many local and national initiatives to improve health, eliminate disparities, and increase activation and engagement; her current affiliations and involvements include:

Center for Medicare and Medicaid Services Person and Family Engagement Network

Editorial Board for Pediatrics®, the flagship journal of the American Academy of Pediatrics (first-ever lay member)

Caregiving Visionary Award Nominee badge

Executive Leadership Board, Patient Experience Policy Forum

Board of Directors, The Superhero Project

Patient Partner Innovation Community

Connecting for Kids of Westlake, Ohio

Global Patient and Family Advisory Board, The Beryl Institute

Project coordinator, Patient Experience Policy Forum

Madvocator Educational and Healthcare Advocacy Training partners with individuals and organizations to provide programs, tools and consultation that improve outcomes, with a focus on equity, health literacy and eliminating disparities. Madvocator has been working on health, engagement and advocacy in Northern Ohio since 2015.

Our programs are rooted in research on critical thinking, adult learning principles, and psychology, with the goal of advancing the ways people think and behave. Mission: To change the way people think and participate in healthcare and education

https://madvocator.org/

Nikki can also be found on Instagram at @madvocator

Be sure to take a look at our website for additional resources and links. We would love to connect with you!

check out our social media platforms: 

Email: beatsbysw@gmail.com

Website:

https://beatsbysw.onpodium.com/

Instagram: @beatsbyswpodcast 

Disclaimer: The information shared on this podcast is for informational and/or entertainment purposes only and is HIPPA compliant. The information shared on this podcast comes from two Certified Clinical Transplant and Mechanical Circulatory Support Social Workers, the views and opinions expressed are our own and not affiliated with any specific institution but to the community of transplant and MCS Social Work at Large. The information shared here is for educational and entertainment purposes and is not meant as a substitute for medical advice, diagnosis, or treatment. Furthermore, it is not meant to override policies or guidelines for any institution or organization.

Join Kristin and Tiffany in an off beat episode on advocacy and social work in the world of transplant and LVAD.

Be sure to take a look at our website / blog post for additional resources and links mentioned in today's episode.

Website: https://beatsbysw.onpodium.com/

Instagram: @beatsbyswpodcast 

Email: beatsbysw@gmail.com

Disclaimer: The information shared on this podcast is for informational and/or entertainment purposes only and is HIPPA compliant. The information shared on this podcast comes from two Certified Clinical Transplant and Mechanical Circulatory Support Social Workers, the views and opinions expressed are our own and not affiliated with any specific institution but to the community of transplant and MCS Social Work at Large. The information shared here is for educational and entertainment purposes and is not meant as a substitute for medical advice, diagnosis, or treatment. Furthermore, it is not meant to override policies or guidelines for any institution or organization. 

Beats by Transplant Social Work, Hosts Kristin &Tiffany, and affiliated guests and programs expressly disclaim responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered as a result of your reliance on the information contained in this podcast or in any Media; and none of the persons and entities noted above endorse specifically any test, treatment, or procedure mentioned on the show. Always consult your own health care provider before making any healthcare decisions or for guidance about a specific medical condition. 

Our goal is to provide you with the most accurate information in the most respectful way, however we are human and we ask for grace and accountability. If we say something you feel is incorrect or inappropriate, please tell us so we can correct ourselves and work to be better. 

Please note: This episode is one hour in duration and is considered eligible for credentialing credit with The Society of Transplant Social Work for CCTSW and MCS credentialing. If you are interested in receiving the credentialing credit please complete the survey found at https://www.surveymonkey.com/r/6V8WMLT 

In today’s episode Kristin and Tiffany had the privilege of interviewing the respected Dr. Robert J. Wicks, author of Overcoming Secondary Stress in Medical and Nursing Practice; The Resilient Clinician; and The Inner Life of the Counselor. Topics discussed include Secondary stress, Chronic Secondary Stress, Post traumatic growth, burnout, and the importance of self care not just for yourself but for your family/friends, and for your patients. After the interview Kristin and Tiffany reflect on this interview and further discuss aspects of this interview that stuck out for them. 

Dr. Wicks can be found at: 

Website: http://www.robertjwicks.com/

Email: RWicks@loyola.edu

His books are available through Amazon and Barnes&Noble

We are BEYOND Honored to have the opportunity to meet with Dr. Wicks about Secondary Stress and the world of Transplant Social Work. 

Be sure to take a look at our website for additional resources and links.. We would love to connect with you! check out our social media platforms: 

Email: beatsbysw@gmail.com

Website: https://beatsbysw.onpodium.com/

Instagram: @beatsbyswpodcast 

Disclaimer: 

The information shared on this podcast is for informational and/or entertainment purposes only and is HIPPA compliant. The information shared on this podcast comes from two Certified Clinical Transplant and Mechanical Circulatory Support Social Workers, the views and opinions expressed are our own and not affiliated with any specific institution but to the community of transplant and MCS Social Work at Large. The information shared here is for educational and entertainment purposes and is not meant as a substitute for medical advice, diagnosis, or treatment. Furthermore, it is not meant to override policies or guidelines for any institution or organization.