#recovery

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.

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:
Reiki
Myofascial release
Vibration plate

Learn more from Jan-Marie along her recovery rollercoaster and find hope (Ep. 78)

March 30, 2022 — Leave a comment

Warrior: Jan-Marie
AI: Multiple Sclerosis
HSCT: June 16, 2020
Superpower: Hope

What do you think is happening? How do you advocate for yourself when seeking answers?

Nearly immediately after HSCT, Jan-Marie experienced significant improvements with her balance and walking and knew in her heart that HSCT worked to halt progression. So, when Jan-Marie began experiencing new challenges, pain, and neurological issues at just 5 months post-HSCT, she became very determined to find answers. Although her doctors insisted that the multiple sclerosis had returned, Jan-Marie had a feeling that what she was experiencing was in fact very different from multiple sclerosis. Tune in to learn more about the variety of options that Jan-Marie pursued, from a top-off of chemo to spending a month in the hospital for nearly every test imaginable, including two MRIs that showed no MS-related activity.

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:

Hydrafil Feasibility Study by RegelTec

Talk to a Warrior at HSCTWarriors.org

Meet Cassidy along her journey of over-achieving before and after HSCT* (Ep. 67)

April 21, 2021 — 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: July 15, 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.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.

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

January 20, 2021 — Leave a comment

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.