Reconnect with Cassidy along her journey of over-achieving before and after HSCT* (S6 replay)

November 23, 2022 — Leave a comment

*This episode contains content that may be alarming to some listeners, including mentions of suicidal ideation. Please check the show notes for more detailed descriptions and take care of yourself*

Warrior: Cassidy V. Chapman
AI: Multiple Sclerosis
HSCT: July15, 2019
Superpower: Passion for bringing awareness to HSCT

To what extent are you an over-achiever? How open are you to receiving support from others? Where do you find family?

After being diagnosed with MS her first year of law school, Cassidy was initially able to manage her disease with a variety of disease-modifying therapies. Though building a successful career as an attorney came with compounding stress that caused significant relapses which left Cassidy fighting optic neuritis and blindness, it was the fatigue and cognitive impairments that ultimately led her doctor to recommend she stop working. After waiting 33 months to be approved for social security disability, Cassidy found creative ways to stay afloat while managing her relapses and steroid psychosis. Thanks to the guidance of an eleven-year HSCT veteran, once Cassidy decided it was time to pursue HSCT, she surrounded herself with caregivers.

With frank conversation about Cassidy’s experience seeking disability about the side effects of multiple sclerosis and its’ medical treatments, including steroid psychosis that led to homicidal and suicidal ideation (skip 40:00-42:30 and 1:02:00-1:05:05 if you want to avoid these parts of the conversation), this episode offers helpful insights about MS symptoms to look out for both pre- and post-HSCT. Tune in to learn more about Cassidy’s scare at 14 months post-HSCT and how her experience with HSCT has shifted her perspective and her priorities.

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.

Reconnect with Allison to celebrate superpowers at eight-years post-HSCT (Ep. 92)

September 21, 2022 — Leave a comment

Warrior: Allison Carr

AI: Multiple Sclerosis
HSCT: December, 2014
Superpowers: hope and grit

Are you motivated to give back to others? To what extent do you recognize superpowers in others? How challenging is it for you to be optimistic?

As someone who spent nearly twenty years battling the unknown, Allison was surprised to be approached by a stranger curious about her drop foot, and even more surprised when she was finally diagnosed with multiple sclerosis. After battling with insurance to pursue HSCT outside a clinical trial in hopes to avoid the transition to secondary-progressive, and dedicating time to healing her physical body post-transplant, Allison continues to find gratitude and spread hope to others along her journey.

Reconnect with Allison (who we first met in Season 3) to learn from her personal, physical and spiritual reflections, and how she is faring at nearly eight-years post-transplant. 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.

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Resources:

Medical Medium: Cleanse to Heal by Anthony William

Be inspired by Cecilia’s resilience at four years post-transplant (Ep. 89)

August 31, 2022 — Leave a comment

Warrior: Cecilia Reyes
AI: Multiple Sclerosis
HSCT: July, 2018
Superpower: Resilience

To what extent has your view softened? To what extent are you learning as you move through life? Do you find blessings and opportunities in the challenges you face?

Check-in with Cecilia at four years post-transplant and learn from the many insights shared and be inspired to find a compassionate journey with yourself. From mindset and positive self-talk to diet and exercise, this conversation shines a light on the importance of patience, trusting the process, finding connection with yourself and community, and practicing resilience.

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

August 10, 2022 — Leave a comment

Warrior: Kristen
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.

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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)

August 3, 2022 — Leave a comment

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.

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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

Meet Stacy and learn from reflections as she celebrates her third stem cell birthday (Ep. 83)

May 18, 2022 — Leave a comment

Warrior: Stacy McNall
AI: Primary Progressive Multiple Sclerosis
HSCT: May 14, 2019
Superpower: being still

Are you someone who trusts the process? How do you handle the need to slow down? Are you able to find calm among the storm?

As a very active person who “lived in overdrive” as a nurse practitioner and marathoner, Stacy tended to set aside the symptoms she experienced for nearly 18 years before she was diagnosed. During her 14th marathon, Stacy tried her best to get moving but her legs would not cooperate and she finally went to see a doctor. After trying several disease-modifying therapies that did not seem to help, Stacy looked further into HSCT while she was hospitalized with a relapse and was successful enrolling in the clinical trial at Northwestern just before it ended.

From relapses to support from reiki masters, to issues with insurance, to reactions during the stem cell transplant including a blood clot, psychosis, and extreme nausea, Stacy seems to have experienced everything along the HSCT rollercoaster. 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 a 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.

Resources:
Reiki
Myofascial release
Vibration plate

Celebrate the start of spring and check-in with Ali at 4+ years post-HSCT (Ep. 77)

March 23, 2022 — Leave a comment

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

How happy are you with what is happening today? Where are you along the journey with acceptance? How do you live your best life?

The beginning of a new season offers the opportunity to check in with Ali at the four-year mark of HSCT recovery. Tune in to learn more about how Ali has navigated psychological and emotional wellbeing and learn how she found a way to accept all the changes that come along with the long process of healing damages incurred by multiple sclerosis including the invisible aspects of orthorexia, finding alternative exercises to promote bone and muscle strength, and exploring supplements that can support our well-being.

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Resources:

The MS Gym

Reconnect with Michelle and be inspired to pursue decisions you feel are right (S5 replay)

March 16, 2022 — Leave a comment

Warrior: Michelle Webb
AI: Relapsing-Remitting Multiple Sclerosis
HSCT: 5/19
Superpower: Compassion and understanding

Are you someone to believe that everything happens for a reason? How often does your experience with disease cancel plans with friends and family? How often are you kind to your body and mind?

After realizing the eighth disease modifying therapy she tried (since 2011) wasn’t helping her feel any better, Michelle began looking into options. As a person who doesn’t trust blindly, hear more about how Michelle – also, a high school friend of Jen’s – gained information when she found herself seeking guidance about next steps, and found the courage to move forward despite her doctor’s opinion.

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Resources:
HSCT Warriors, Inc.
Northwestern Memorial Hospital

Be inspired and find commonality in John’s appreciation for HSCT (S4 replay)

February 9, 2022 — Leave a comment

Warrior: John Taylor
AI: Multiple Sclerosis
HSCT: September 2019 at Northwestern
Superpower: Appreciation

Have you ever tried to describe the sensation of severe pain, despite knowing that you’re also physically numb? When side effects and risk outweigh the good, how do you make a choice? How do you feel when selected for the chance of a lifetime, knowing others have to miss that chance?

After years of living with symptoms considered insignificant, John finally received a diagnosis of multiple sclerosis in 2010 from his third opinion doctor. While the first disease modifying therapy seemed to work for nearly a decade, just as John began to fear a future with little hope about his new normal, his wife stumbled upon HSCT in time for him to be treated in Dr. Burt’s last cohort before sabbatical.

Tune in and learn more about John’s experience with loss of balance, shooting pains, burning sensations, optic neuritis, and other symptoms that he experienced with multiple sclerosis.

Resources:
Patient care manuals for post-HSCT
Research articles

Listen again to Lydia’s insightful journey to HSCT and be inspired by her inner strength (S4 replay)

January 19, 2022 — 2 Comments

Warrior: Lydia Rosenbaum
AI: Crohn’s Disease
HSCT: August 2002 at Northwestern Memorial, Chicago
Superpower: Empathy and belief in self

After spending time in palliative care planning to die, how do you find the right time to celebrate success with surviving? How do you find compassion for people who have never walked in your shoes? How often do you push your limits?

Despite suffering extreme complications with Crohn’s disease that kept her in and out of the hospital through multiple surgeries and dangerous fevers, Lydia woke up after surgery one day and was suddenly told “you cannot eat”. Before she even turned 30, on medical disability and living in the hospital more than out, Lydia found herself striving to survive, advocating for consistency and questioning the ethics of efforts to keep her alive.

Having prepared to face death from her aggressive form of Crohn’s, Lydia was very surprised to find herself feeling so isolated after HSCT after she realized she instead could prepare to live. Join us and learn more from Lydia about her experience and the path that led her to the Phase II Clinical Trial as one of the very first patients treated for Crohn’s Disease by Dr. Burt at Northwestern.

HSCT Warriors Podcast

Illuminating invisibilities of autoimmune disease

#northwestern #northwesternmemorial #drburt #stemcellprocedure

Reconnect with Cassidy along her journey of over-achieving before and after HSCT* (S6 replay)

Reconnect with Allison to celebrate superpowers at eight-years post-HSCT (Ep. 92)

Be inspired by Cecilia’s resilience at four years post-transplant (Ep. 89)

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

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

Meet Stacy and learn from reflections as she celebrates her third stem cell birthday (Ep. 83)

Celebrate the start of spring and check-in with Ali at 4+ years post-HSCT (Ep. 77)

Reconnect with Michelle and be inspired to pursue decisions you feel are right (S5 replay)

Be inspired and find commonality in John’s appreciation for HSCT (S4 replay)

Listen again to Lydia’s insightful journey to HSCT and be inspired by her inner strength (S4 replay)

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