Be inspired by Chloe to increase awareness, and stay active and sane despite COVID (Ep. 61)

Warrior: Chloe Zallen
AI: Relapsing remitting multiple sclerosis
HSCT: Oct/Nov 2020
Superpowers: self-love

Are you able to recognize your limitations? Are you aware of your stressors? Where do you find courage to be confident in your decisions?

As a traveling cardiac specialist with experience at several hospitals, Chloe found herself in an extremely stressful environment with a lot of fear incited by the uncertainties of her MS. When she suddenly had numbness along the entire right side of her body, she began googling her symptoms and weighing the possibilities while awaiting the results of an MRI. Though she received a diagnosis soon thereafter, nearly every neurologist she consulted encouraged the same disease-modifying therapy and after researching the side effects, Chloe opted instead to adopt special diets and a natural path to managing her symptoms. 

Tune in and learn more about how Chloe found complete relief from her symptoms while away in New Zealand, find motivation to be your own advocate, and how she found her way to HSCT despite doctors’ and friends’ concerns that she would die. Hear more about her experience in Monterrey and how she was able to stay active and sane despite the global pandemic.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors, Inc.: https://HSCTWarriors.org

Revisit Kevin’s inspiring journey to overcome nearly every HSCT complication (replay from S1)

Warrior: Kevin
Snowflake: RRMS
HSCT: February 23, 2017, Northwestern Memorial Hospital
Superpower: Novena to St. Jude

When facing the unknown, are you curious about possibilities or do you fear uncertainties? What part of your journey has become too familiar? How can we support each other to mobilize for different outcomes?

If you’ve ever been curious to know more about potential complications or side effects associated with HSCT, meet Kevin, who faced nearly any possible challenge you could possibly face (e.g. failed mobilization, infection in the blood) with HSCT, including travel across the globe to Singapore. Despite facing such significant challenges, tune in to learn more about Kevin’s journey to halt his MS and his continued dedication to recover his physical abilities, and promote HSCT.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.

Resources:
Ohio Facebook group: facebook.com/groups/OhioHSCTgroup/
Zen Jen’s blog: Haltmyms.com
WCPO Cincinnati ABC affiliate: wcpo.com


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Julie’s journey to HSCT and find super helpful lessons along the way (replay from S1)

Warrior: Julie Eberhardt
Snowflake: Relapsing Remitting Multiple Sclerosis
HSCT: February 19, 2018, Northwestern Memorial
Superpowers: Empathy and ability to “not sweat the small stuff”

Are you a goal-oriented person who likes to create plans and back-up plans to the plans for every aspect of life? Have your plans been significantly detoured by your experience with autoimmune disease?

As a young warrior with brilliant energy, Julie shines her light on the importance of managing stress in order to negotiate the realities of unpredictability. She very quickly realized the reality that as a progressive disease, MS created daily fear that “the next day could have been the day when I woke up and couldn’t walk again.” Within two short years of diagnosis in 2016, Julie felt completely defeated by MS until she embraced hope as a mantra to navigate life and hasn’t let it go throughout her HSCT journey. Tune in to learn more about Julie’s shifting perspectives and find wisdom that might take others a lifetime to learn.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.

Resources:
Blindsided, Richard Cohen
Chasing Hope, Richard Cohen
Julie’s blog: MakingSenseofMS.com

Revisit Karin’s journey with systemic lupus that led her to pursue HSCT (replay from S1)

Warrior: Karin
Snowflake: Systemic Lupus
HSCT: December 10, 2015, Northwestern Memorial
Superpower: Empathy

Do you tend to put yourself last on your to-do list? Have you ever been at the point in your life when you realize, “This is for the birds!” or feel ready to get on with it [life] already?

Karin’s experience with Systemic Lupus left her bandaged and barely recognizable. Failed medication after another, she realized that her autoimmune disease was “for the birds.” Despite the fear of being away from her busy life for too long, Karin found herself tired of her disease and encourages listeners to “take care of number one first!”

Tune in to learn more about how Karin harnessed positive energy during HSCT and shifted to a new normal of patience, appreciation for the things she used to take for granted, and found the strength to get back to work within just 2 months post-HSCT.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit our first chat with Ron and find motivation to research care you deserve (replay from S1)

Warrior: Ron Gabrielli
Snowflake: RRMS
HSCT: May 6, 2017, Puebla, Mexico
Superpower: Advocacy for HSCT

Have you ever learned something that left you at a loss for words? Found yourself tied to the railroad tracks looking for a way to stop the oncoming train? 

Meet Ron, a warrior who invested in the “short term pain for long term gain” of HSCT and found courage to face his fears, doubts, and misconceptions in order to commit to Clinica Ruiz in Puebla Mexico. As an American citizen residing in Canada, he unexpectedly found an extended family and friends in Mexico.

Ron leaped into his journey without looking back, continues to grow his family by embracing a positive outlook, and focusing on the small things to appreciate in life. Tune in to hear Ron’s tips and tricks, encouragement to pursue objective research, and strategies to support a healthy outlook in recovery.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources: 
Ron’s blog: ronniesmstrek.mozello.com
Heavy Metal testing: https://www.doctorsdata.com/urine-toxic-metals/
Cannabidiol oil: https://cbdistillery.com
1:1 CBD:THC oils

Be inspired by Denise’s courage to take charge of her experience with stiff person syndrome (replay from S1)

Warrior: Denise Bishop
Snowflake: Stiff Person Syndrome
HSCT: 9/12/17, Chicago
Superpower: Increased empathy

Have you ever found yourself distracted by concern for the people in your life that are stressed about your condition? Do you question whether the resources you find when researching your condition are of comparable quality to the resources your doctors can access? Have you learned how to embrace the courage to make your own decisions in healthcare?  

Be inspired to take charge of your health when you meet Denise, a warrior who tapped into her 35 years of service as a trauma-care nurse when diagnosed with Stiff Person Syndrome. Once she started researching the disease, eventual progression, treatment options (e.g. IVIG, plasmapharesis, valium) and their respective side-effects, she informed her neurologist that HSCT would be the only option forward she found to be acceptable.

Tune in to learn strategies for handling the logistics of HSCT, including the importance of building a strong support team, knowing your limits, and finding a purpose. Denise shares insights that help to promote her mental, emotional, and physical recoveries.

Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit the importance of positive self-talk with Kim (replay from S4)

Warrior: Kim Rodning
AI: Scleroderma
HSCT: September 4, 2018 at Duke University Medical Center
Superpower: perseverance, patience, and perspective

Do you practice daily affirmations of positivity? Does your self talk promote healing or judgment? How does hearing the stories of other Warriors help you?

Having encountered the possibility of HSCT by chance, Kim explored more about the research and program for Scleroderma patients at Duke University. Thankfully, she found HSCT just before her lungs hardened to the point where she wouldn’t have qualified.

Tune in and learn more about her experience and symptoms of scleroderma, the aid she received to fight for insurance coverage, and the team of caring angels at Duke that helped motivate Kim to fight back.  

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.

Resources: 
Facebook @KimberlyRodning

Meet Felicia and learn how she fought against the odds and COVID to pursue HSCT (Ep. 54)

Warrior: Felicia Merritt
AI: Progressive Multiple Sclerosis
HSCT: August 2020
Superpower: Feeling invincible

Have you ever suddenly realized just how much you were taking for granted? Have you been able to find internal strength? What about internal peace?

Shortly after turning 30, Felicia began experiencing vision issues and weakness. Following an intense crossfit workout, Felicia hoped she could laugh things off until she checked herself into the hospital. Her doctors referred her to Ohio State University and once surrounded by a medical team for a few days, Felicia was diagnosed with multiple sclerosis in 2018. 

Tune in to learn more about HSCT despite COVID and details about the level of detail, treatment and care Felicia received at Clinica Ruiz, and all that she has gained in just the first couple of weeks post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Facebook blog page

Support HSCT hopeful DeWayne, as he becomes the first autoimmune transplant in Cleveland (Ep. 52)

Warrior: DeWayne Durr
AI: Relapsing Remitting Multiple Sclerosis
HSCT: scheduled for September, 2020
Superpower: prayer and understanding

How comfortable are you with difficult or impossible situations? How direct are you about the care you receive from your doctors? When faced with the chance of being randomly assigned to receive HSCT, would you feel conflicted?

After DeWayne researched the disease modifying therapies available to him, he chose to clean up his diet and forgo drugs, as he had also researched HSCT and barely missed the chance to be treated by Dr. Burt in Chicago before he closed the clinical trial. Tune in to hear more about how DeWayne advocated for consideration to be considered for the BEAT-MS trial at the Cleveland Clinic and the winding path to get there despite other doctors’ opinions, the details of participating in the clinical trial, and COVID. 

Tune in and learn more about how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Wahl’s Protocol
Rooftop Prayer Warriors

Learn more about HSCT amid the global COVID pandemic from Jan-Marie and the power of patience (Ep. 48)

Warrior: Jan-Marie
AI: RRMS
HSCT: 6/20
Superpower: Patience 

Do you take doctors’ opinions as gospel? How comfortable are you asking questions and conducting research? Who helps you through tough times?

Jan-Marie

Not only does Jan-Marie set a shining example to approach life with optimism and positivity, she offers insight into what it’s like to research scientific evidence to inform opinion, foster support both emotionally and financially, and gain confidence to pursue HSCT during the COVID pandemic. As a nurse by trade, Jan-Marie used her training in evidence-based medicine to be informed about her options with disease modifying therapies that ultimately did not work. After finding herself frustrated and hopeless with the progression of her multiple sclerosis, Jan-Marie was introduced to HSCT by a girlfriend and within hours completed the application, and in days secured a schedule.

Tune in to hear more about Jan-Marie’s journey to HSCT, changes to the typical experience in Monterrey at Clinica Ruiz for COVID, and how Jan-Marie is faring the first few weeks post-transplant.Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Calm app

HSCT Warriors Podcast · Learn more about HSCT amid the global COVID pandemic from Jan-Marie and the power of patience