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