Learn how Rachel managed CIDP before myeloablative HSCT at the CBCI in Denver (Ep. 66)

Warrior: Rachel Gallery
AI: Chronic Inflammatory Demyelinating Polyneuropathy
HSCT: Oct 19, 2020
Superpower: Empathy

Do you consider yourself a lucky person? How often do you receive treatment for autoimmune disease? How layered is your circle of support?

After spending nearly a year with strange symptom progression, a neurologist was finally able to diagnose Rachel when IVIG helped to offset some of her most problematic symptoms. After five years of managing her disease with IVIG infusions every two weeks, she found herself facing rapid decline, trying a variety of aggressive treatments including cytoxan and rituxan that failed to help. 

Tune in to learn more about the clinical trial at the Colorado Blood Cancer Institute (CBCI) in Denver, and the confidence to get through the myeloablative protocol despite significant complications (namely, graft v. host disease) amid the COVID pandemic. With so many helpful tips for mindset to accept support through the tough times, illuminate invisibilities, and adjust to life with chronic illness, this conversation with Rachel offers practical strategies to make it through some really tough moments along the HSCT path.

 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.

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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:
Colorado Blood Cancer Institute 
HSCT Warriors Podcast

Learn from DeWayne’s experience as the first HSCT patient for MS at Cleveland Clinic (Ep. 64 part 1)

Warrior: DeWayne Durr

AI: Multiple Sclerosis

HSCT: Oct 29, 2020

Superpower: Confidence

How often in life have you been first? How do you find confidence along your path?

Check-in with DeWayne to hear more about his experience as the first patient to receive HSCT for Multiple Sclerosis at the Cleveland Clinic. With so many details about his experiences with the myeloablative protocol of the BEAT-MS clinical trial, including securing insurance coverage, the staff and his in-patient experiences, as well as logistics and details about the time spent after discharge in a nearby hotel, DeWayne shares so many valuable insights, this interview will air as a two-part episode.

Tune in this week to hear the details about being in-patient at Cleveland Clinic and logistics for after-care in Cleveland, and next week, join us to hear more about DeWayne’s experience with recovery so far.

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.

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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:
www.rooftopprayerwarrior.com

www.beat-ms.org

Enjoy Joceline’s reflections and find compassion for just wanting to feel normal (Ep. 62 part 1)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: soon in 2021?
Superpowers: doing nothing

How do you establish trust in the systems? How many doctors have you fired? How do you find patience when you find yourself on the brink?

After initially being brushed off by doctors, once diagnosed with multiple sclerosis, Joceline found she wasn’t interested in pursuing medication for what she felt doctors knew very little about at the time. As she chose to pursue a natural course of treatment with Chi Gong, diet, and acupuncture, Joceline offers powerful reflections with the wisdom of hindsight in finding compassion for her younger self, who just wanted to feel ‘normal’ despite her diagnosis. 

Tune in this week to learn how after eight years of managing the diagnosis with alternative narratives and symptom etiologies, Joceline finally experienced her diagnosis-moment after finding a neurologist who appeared genuinely concerned for her well-being. Sharing details about the ups and downs of relapses, rejecting medications, and navigating modifications to walking, working, and support by the NHS medical professionals, this two-part episode offers a wealth of information and insights along the road to HSCT. As a nurse’s assistant by training, Joceline shares one of the most detailed interviews about her journey through diagnosis, treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience as she awaits the border to reopen.

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.

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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:
Bates Natural Vision Improvement Exercises
Radical Acceptance by Tara Brach
Ahna Crum
Roger McDougal
MS Tripping on Air
NHS Expert Patients

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

Join Christy on her way to Monterrey and learn more about the power of connections (Ep. 60)

Warrior: Christy Miller Kuziensky
AI: Multiple Sclerosis
HSCT: February 2021 in Monterrey
Superpowers: patience and trust in Clinica Ruiz

Have you been fortunate enough to find confidence in your big decisions? How has patience served you along your journey? Are you comfortable showing up with no expectations?

With arm numbness that led to her diagnosis at the age of 24, Christy experienced some time without many MS symptoms and was doing her best to be adventurous and live a full life. Until she found herself in the outback of Australia for an outdoor teaching experience, hit with a terrible flare and optic neuritis that forced her on a return flight to the US within 24 hours. As an avid believer in the body’s capacity to heal itself, Christy spent two decades pursuing natural therapies to treat her MS symptoms, including acupuncture, Chi Gong, tapeworms, and bee sting therapy.

Tune in to learn more about how Christy found HSCT and faced her doubts to fundraise her way to Clinica Ruiz in Monterrey. With great tips for narrating her 26 year journey with MS avoiding disease modifying therapies and generating support for her treatment, Christy’s journey helps to reinforce the power of networking and sharing connection with others.

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: 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.

Pause to reflect and find gratitude with our own ‘zen’ Jen and friend, Sara Leah (replay from S1)

Warriors: ‘Zen’ Jen & Sara Leah
Snowflake: RRMS
HSCT: October 18, 2017, Northwestern Memorial Hospital
Superpower: Zen

Do you embrace life’s challenges with open arms? One step at a time? As you find your way along your journey, do you pause to reflect in the moment and express gratitude for those who are along with you?

Learn more about the journey of our very own ‘Zen’ Jen, as she shares the mic for a chat with her dear friend Sara Leah and they find commonalities in their unique experiences with MS. With a fun break from the usual interview protocol, enjoy this conversation from the lens of someone curious to know more about HSCT, in celebration of Jen’s one-year HSCT birthday.

Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to host this interview live in the Belfry; especially for his efforts to create the soundtrack, record, 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 another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.

Resources:
haltmyms.com
hsctwarriorspodcast.com
HSCT at Hoxworth Blood Center, University of Cincinnati
HSCT at Clinica Ruiz, Mexico


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.

Learn from Anna’s various trials and efforts to halt her MS (replay from S1)

Warrior: Anna Wise
Snowflake: RRMS
HSCT: 2/23/17 at Northwestern Memorial Hospital
Superpower: Running

How bright is the light you shine on your present situation? What are you committed to, without any doubts or hesitation, to achieve your “next best life”?

After hearing a “no” from her first attempt at HSCT, Anna remained open to try anything (including experimenting with mesenchymal stem cell therapy) to cure her MS. She found herself on Medicare and full-time disability for two years at the end of her late-thirties and after failing four disease-modifying therapies (DMT) and facing the side-effects of yet another DMT, Anna chose to jump at the chance to revisit her application at Northwestern Memorial.

Tune in to hear more about Anna’s journey with Multiple Sclerosis and the effort she made to prevent her disease from progressing; the “rollercoaster” peaks and valleys of post-HSCT recovery; strategies to battle the chemotherapy-related fatigue, regain confidence, and embrace energy from physical exercise in simple environments; and pursue the best life possible, starting with HSCT.

Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, 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:
Jesus Calling: Everyday Devotions by Sarah Young
Anna’s blog: https://endmyMS.com

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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

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.