Revisit the hope in possibility with John along his journey to HSCT (replay from S4)

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. 

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 immediately.

Resources: 
Patient care manuals for post-HSCT
Research articles

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

Meet Michelle and be inspired to pursue the decisions you feel are right

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?

Zen Jen and Michelle with some high school friends one Halloween

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.

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:
HSCT Warriors, Inc.
Northwestern Memorial Hospital

https://w.soundcloud.com/player/?url=https%3A//api.soundcloud.com/tracks/885922243%3Fsecret_token%3Ds-ZX3MaSPalQv&color=%23ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false&show_teaser=true&visual=true HSCT Warriors Podcast · Meet Michelle and be inspired to pursue the decisions you feel are right

Revisit Lydia’s journey to HSCT for Crohn’s Disease and find joy in surviving (replay from S4)

Warrior: Lydia Rosenbaum
AI: Crohn’s Disease

HSCT: August 2002 at Northwestern Memorial, Chicago
Superpower: Empathy and self-efficacy

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

Replay Lydia

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 turned 30, on medical disability, living in the hospital more than out and realizing she was on palliative care, Lydia found herself advocating for consistency and questioning the ethics of doctors and insurers.

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

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.

HSCT Warriors Podcast · Revisit Lydia’s journey to HSCT for Crohn’s Disease and find joy in surviving (replay from S4)

Revisit our catch-up with Ali and her recovery strategies that apply every day (replay from S4)

Warrior: Ali Roberts
AI: Multiple Sclerosis
HSCT: 11/6/17
Superpower: Gratitude

Do you believe in the power of self-talk?  That the words you say to yourself become the narrative fulfilled?  Where do you find yourself bringing attention?

Replay AliS4 (2)

Revisit our Season Four opener and conversation with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, stress, shingles, mindset, wellness, and personal challenges to continue promoting wellness, healing and longevity. Tune in and learn how Ali navigated wellness through the flu and shingles at two years post HSCT, then take away some valuable insights about life that she shares from her coaching perspective.

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 immediately.

HSCT Warriors Podcast · Revisit our catch-up with Ali and her recovery strategies that apply every day (replay from S4)

Learn more from Chris about the challenges of CIDP and diagnosis by exclusion (replay from S2)

Snowflake: CIDP (chronic inflammatory demyelinating polyneuropathy)
HSCT: August 14, 2018
Superpower: ability to walk again

Have you ever lingered on the brink of life? Or wondered why diagnosis by exclusion takes so long? How much energy would you have to spin your wheels?

Replay Chris

Meet Chris, a physical therapist familiar with physical movement, injury, and the understanding that when numbness, tingling, and pain consumed his abilities to move, he needed to fast-track some answers. Despite the shuffle from doctor to doctor without diagnosis, once his body completely shut down while driving to work, Chris and his wife knew they had to find their own answers and fully adorn the role of advocacy.

Tune in to learn more about the back-and-forth Chris experienced along his path of diagnosis with CIDP that led him to HSCT, the concern for others struggling to find the right diagnosis, the importance of self-advocacy, and the spirit of hope in sharing awareness.

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.

Resources noted:
GBS/CIDP Foundation: https://www.gbs-cidp.org/

HSCT Warriors Podcast · Learn more from Chris about the challenges of CIDP and diagnosis by exclusion (replay from S2)

Revisit inspiration from Tamra and find resiliency among the uncertainty (replay from S3)

Warrior: Tamra Minch
AI: MS Caregiver
HSCT: April 7, 2019
Superpower: Humility

Are you able to make time for yourself when caring for others? When faced with the uncertainties in life, what do you focus on? How does resiliency inform your outlook?

Replay Tamra (1)

When her husband was first diagnosed with multiple sclerosis, the whirlwind experience suddenly had Tamra searching for answers and alternatives to the pharmaceuticals that only guaranteed harsh side effects with terrifying probabilities. After learning more and connecting with individuals that had gone through HSCT, Tamra’s husband decided to take the leap and forgo medications to pursue HSCT. 

Tune in and learn more about their fundraising efforts to get to Clinica Ruiz, the turnabout to pursue treatment in Chicago, and how Tamra provides support to others in the HSCT family.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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.

Revisit some great reasons to smile along Tracey’s journey with HSCT (replay from S3)

Warrior: Tracey Rossi
AI: Multiple Sclerosis
HSCT: August 2018
Superpower: Motivation

Are you looking to fit all the HSCT pieces together? What is your outlook on life? How often do you choose to turn a frown upside down? 

Replay Tracey

As a former surfer, Tracey became an expert in finding balance and going with the flow. Having lived with the MS monster since 2009, Tracey was shocked when Dr. Burt was surprised enough by her symptoms to expedite her enrollment in the MOST clinical trial. Tune in and hear the latest updates from Chicago when Tracey was seen for her one-year follow-up in August.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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.

HSCT Warriors Podcast · Revisit some great reasons to smile along Tracey’s journey with HSCT (replay from S3)

Revisit Allison’s courageous journey to HSCT and her efforts to spread hope and awareness

Warrior: Allison Carr
AI: Multiple Sclerosis
HSCT: 2014/15, Northwestern Memorial, Chicago IL
Superpower: Survival

To what extent do your doctors have your best interest in mind? Does the medical community you depend on even have accurate information about HSCT? 

HSCT Warriors Podcast Ep. 47 (2)

After suffering symptoms without a diagnosis for twenty years, Allison felt completely ignored by her medical community. As a busy mom in a busy career with a busy life, Allison didn’t find much time for her diagnosis of multiple sclerosis, let alone the frightening side effects of pharmaceuticals. Despite the opinions of multiple doctors, when family friends connected her to the possibility of HSCT in a clinical trial, she did her research and pursued HSCT without hesitation.

Tune in to hear the lessons learned as Allison survived a see-saw insurance battle, challenges to her marriage, and what happened when Allison realized that the little she knew about HSCT was more than what her doctors knew or willing to learn. In listening to Allison’s journey, we hope you’ll be inspired to become your own self-advocate and join her in efforts to spread hope and awareness.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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 immediately.

 

Revisit Keri’s remarkable journey and be inspired to persist in self-advocacy

Warrior: Keri Huff
AI: Tumefactive multiple sclerosis
HSCT: July/August, 2010
Superpower: Self-advocacy

When you try to advocate for your health and doctors turn you away, how do you persist? Have you ever reflected on how much time you have? Where do you find beauty each day?

HSCT Warriors Podcast Ep. 46 (1)

At just 28 years old, Keri started experiencing odd symptoms that countless doctors ignored and dismissed. As she persisted through debilitating pain and extreme fevers, an MRI finally evidenced several masses on her brain. After persisting through additional testing and a ten hour brain surgery, she learned she was pregnant but did not walk away with a diagnosis.

When her masses eventually returned, she continued fighting for answers and connected with Dr. Burt at Northwestern. Sharing her remarkable journey battling multiple autoimmune diseases, be inspired to learn how Keri fought for ten years struggling to find answers and relief from her pain as a one in 20,000,000 statistic, only to face death with the possibility of 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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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.