Celebrate life in 3D with Kristen, nearly eight years post-transplant (Ep. 86)

Warrior: Kristen Kroen
AI: Multiple Sclerosis
HSCT: January 2015
Superpower: confidence

To what extent does stress impact you? How full do you feel life is? How well are you able to put fear aside?

As an avid runner, Kristen managed several years of mystery symptoms before receiving the diagnosis of multiple sclerosis in 2009. Despite her aggressive approach with attempting to slow the progression, including solumedrol, rituximab, copaxone, and several other disease modifying therapies, it seemed the drugs had no effect. Kristen found herself slowing each year from running marathons to speed-walking to limping with a cane to a scooter and eventually a wheelchair, unable to hold a fork by 2013. Once she was connected with someone who had received HSCT in Germany, she was convinced. She applied in Italy and Russia and was accepted while she pursued the clinical trial at Northwestern, yet was rejected. 

Tune in to hear more about how a gracious pilot on a canceled flight helped her arrive at a second appointment with Dr. Burt to be treated on a compassionate care basis, her experience with divine interventions, trust in Dr. Burt through transplant, and how she is faring seven-and-a-half years later with her new lease on life.

Be sure to visit our website, HSCTWarriorsPodcast.org 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 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: 
Glen Howard meditation and prayer books

Check-in with Ali at nearly five years post-HSCT as we launch our ninth season (Ep. 85)

Warrior: Ali Roberts
AI: Multiple Sclerosis
HSCT: November 6, 2017
Superpower: Motivation

Are you someone who feels your emotions? Do you focus on what can (v. can’t) be done? Can you find the present in each moment?

The beginning of a new season offers the opportunity to check in with Ali and how she is faring, nearly five post-HSCT. Tune in to learn how Ali is managing menopause, strategies for wellness, navigating shifts in diet, exercise, hormones, emotions, and anxiety. 

Be sure to visit our website, HSCTWarriorsPodcast.org 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 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:

Dr. Burt’s non-myeloablative HSCT protocol (not yet recruiting) will be posted at clinicaltrials.gov – contact him in the meantime by emailing burtrrmstrial@scrippshealth.org

Embodiment, fascial awakening, and emotional regulation support offered by Jess Rachel – contact her to learn more by emailing jess4embodiment@gmail.com

Revisit Vic’s inspiring resolve and determination despite the naysayers and COVID (S6 replay)

Warrior: Vic Bonilla
AI: Multiple Sclerosis
HSCT: Oct 2020
Superpower: unbreakable resolve

Have you ever felt like an observer of your life? Have you stared down the barrel of mortality? Is the patience you have with others, the same, greater, or less than the patience you have with yourself? 

Within a few months of being diagnosed with multiple sclerosis, Vic was connected with someone who was transplanted in Russia ten years ago and immediately began researching HSCT. Once he made his way to Clinica Ruiz for his treatment, he and his brother tested positive for COVID and opted to quarantine in Mexico before returning to Clinica Ruiz for HSCT. By this time, Vic’s brother needed to return to the US, and thankfully Vic was able to hire a caregiver.

Tune in to learn more about Vic’s experience with his caregiver in Puebla, his journey with the MS symptoms that caught him by surprise, his extensive research into HSCT, how things are faring nearly six-months post-HSCT, and the unexpected outcomes he continues to enjoy.

Be sure to visit our website, HSCTWarriorsPodcast.org 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 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.

Revisit Chloe’s inspiration to increase awareness, and stay active and sane, despite COVID (S6 replay)

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?

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.org 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.

Revisit Christy’s journey to Monterrey and learn more about the power of connections (S6 replay)

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, Qi 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.org 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

Reconnect with Ovi on her way to Puebla and learn what it means to be strong-strong (S6 replay)

Warrior: Ovi James
AI: Multiple Sclerosis
HSCT: February 2021
Superpower: mindset

How well do you navigate self advocacy?

After years of terrible headaches and issues with standing and walking, Ovi ended up losing her job and her home which caused significant relapses that rendered her disabled. As a single mother, Ovi’s goal was to focus on the positive and help her son “see the light at the end of the tunnel” even though she struggled to understand everything that was going on as her family chose not to support her. With the support of various shelters and physical, occupational, and mental health therapies, Ovi was able to focus on healing and learning how to better advocate for herself. She eventually found a rheumatologist who was able to see she was struggling with more than fibromyalgia and scheduled the MRI that led to her multiple sclerosis diagnosis.

Although this interview occurred the weekend that Ovi was preparing to head to Clinica Ruiz in Mexico, it is airing while she is currently undergoing treatment and could use continued support from our HSCT community. Tune in and learn more about Ovi’s journey and how she found strength in being properly diagnosed, and keep such a positive outlook on life and how she turned inward to focus on her gifts in order to actualize the possibilities of pursuing 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:
Social media YouTube: @ovijames and Instagram: @itsovijames
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors: https://HSCTWarriors.org

Reconnect with Lynn and gain insights on the nuances of CIDP (S5 replay)

Warrior: Lynn Rogers
AI: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
HSCT: hopeful 
Superpower: widened lens

Have you ever worried about asking people for help when their investment isn’t a sure thing? How do you define barriers to treatment for your autoimmune disease?

As a triathlete, crossfit-er, and marathoner preparing for an Ironman race, imagine the frustration when Lynn found herself paralyzed after two weeks of testing that led to no answers. Having a career in biomedical engineering with a focus on helping individuals with motor-recovery, Lynn was very surprised to find herself struggling with the same acute neurological issues as her patients.  

Tune in to learn more about her journey with symptoms that were not “textbook” and how the diagnostic testing not designed to pick up subtleties rendered her borderline, ultimately prolonging a diagnosis. Learn more about Lynn’s efforts to find answers and collaborate with her doctors over the course of three years to develop a plan of action that is leading her to pursue HSCT. 

Be sure to visit our website, HSCTWarriorsPodcast.org 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 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

Revisit Sagirah’s commitments in defining success with HSCT (S5 replay)

Warrior: Sagira Ahmed Norris
AI: Multiple Sclerosis
HSCT: January 2020
Superpower: flexibility

Are you someone who prefers to schedule a plan for every detail in life?

After first being diagnosed, Sagira found herself more driven than ever to complete life goals ahead of schedule while she was able, including travel to foreign countries to run marathons. Once her symptoms began matching what her doctor projected for her years down the road, she happened upon HSCT by chance while in Europe. After returning home, Sagira did more research and then talked with her doctor, only to be told that HSCT wasn’t an option for her, particularly the kind of HSCT that involved leaving the country.

Tune in to learn more about how Sagira defined her path to HSCT, the flexibility she gained throughout her experience, and whether she qualified for the Boston Marathon even before her one-year HSCT birthday.

Be sure to visit our website, HSCTWarriorsPodcast.org 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:
HSCT Warriors, Inc.

Revisit our chat with Brooke Slick about managing setbacks post-HSCT (S5 replay)

Warrior: Brooke Slick
AI: Multiple Sclerosis
HSCT: 2013
Superpower: surrender

Are you able to surrender to all that seems out of your control? How easy is it for you to allow things to just happen?

Revisit Brooke’s journey to HSCT and learn more about the setbacks she has faced post-HSCT, (including surgeries for trigeminal neuralgia) but also the influence of mindset, and the inspirations she has found with persevering in her battle with MS beyond HSCT. 

Tune in to check-in with our dear friend, Brooke and hear more about how she continues to support others along their journey to HSCT and celebrate the gifts of community and service to others. 

Be sure to visit our website, HSCTWarriorsPodcast.org 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.

Reconnect with Felicia and how she fought against the odds and COVID to pursue HSCT (S5 replay)

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.org 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.