Meet Mendo and the positive mindset he embraces, thanks to HSCT (Ep. 84)

Warrior: Mendo Micevski
AI: Primary Progressive Multiple Sclerosis
HSCT: June 2021
Superpower: Mindset

Are you someone who prefers to live in the shadows? How well do you notice the ‘chalk and cheese’?

After years of noticing odd symptoms that doctors could not figure out, Mendo was walking to dinner one Saturday evening when his vision became blurry and doubled in his left eye. The following day he visited a specialist’s hospital in Melbourne where the doctor noticed inflammation of his optic nerve, suggested it could be multiple sclerosis, and encouraged him to get an MRI. After receiving the diagnosis in 2005, Mendo was in a bit of shock as he was unfamiliar with the disease, aside from commercials about the medications that depicted people in a wheelchair.

Tune in to learn more about the slow decline that Mendo experienced, how he learned that HSCT might be an option for him (though not in Australia), his journey to Russia, his experience during HSCT and returning to quarantine in Australia, and how he is faring and all the differences he is noticing at 10 months 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.

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.

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

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

Continue learning from Carolyn’s insider perspective with HSCT at Cleveland Clinic (Ep. 82 part 2)

Warrior: Carolyn Deming
AI: Multiple Sclerosis
HSCT: scheduled May 11
Superpower: blatant honesty

Do you ponder problems or possibilities? What is your approach to finding the right mindset? How do you advocate for what you know you need?

Picking up where we left off last week, tune in to hear details about Cleveland Clinic’s transplant care team, facilities and gain ideas for strategies to advocate for the support you need from doctors, especially throughout the HSCT experience.

Tune in to learn more about how “the power of options” has been incredibly supportive for Carolyn, some of the latest MRI technologies at Cleveland Clinic, their reverence for stem cells, and Carolyn’s insider’s perspective. 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:

Carolyn’s blog: Mychroniclibrary.com
Cuddle clone
Matt Haig books

Continue along Joceline’s journey to HSCT in Moscow and learn how recovery is going (Ep. 80 part 2)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: March 29, 2021
Superpower: tenacity

How often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience?

Last week we reconnected with Joceline, who we first met in Season 6 while she anxiously awaited hearing about when she might be able to schedule HSCT in Moscow, as she was not eligible in her home in the UK. A bit over one year ago, she was finally able to secure a visa and travel through Turkey before arriving at the AA Maximov hospital in Moscow. In last week’s episode, we learned about her experiences getting to, and during her stay in the hospital. Tune in this week to pick up where we left off last week and learn how Joceline fared during her return home, including how “out of this world difficult” the first three months home were, and how recovery has been going since she got home.

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 to 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:

Joceline’s YouTube channel: https://www.youtube.com/channel/UC5WIASLGre2XkMgQV2LhOBA/videos

Check-in with Joceline and celebrate her journey to HSCT in Moscow last year (Ep. 80 part 1)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: March 29, 2021
Superpower: tenacity

How often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience? 

When we first met Joceline in Season 6, she shared concerns over the COVID variant in the UK that had delayed her acquiring a schedule to begin HSCT at the AA Maximov hospital in Moscow. Nearly one year since we last spoke, Joceline celebrated her one-year stem cell birthday and joined us to share details about how she finally made it to Moscow, through pre-testing, and underwent the transplant while connecting with other patients to pass the time before isolation. Tune in to hear how she embraced the chemo, despite unexpected side effects from the chemo, including dizziness and immediate onset of menopause. Learn more about how isolation did not go as planned for Joceline, and how she established gentle boundaries to support herself through the unexpected depression that ensued during isolation.

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.

Meet Eric to learn from his quick pursuit of HSCT after diagnosis despite the pandemic (Ep. 79)

Warrior: Eric Saperstein
AI: Multiple Sclerosis
HSCT: July 5, 2020
Superpower: Speed (to HSCT)

Are you someone to live in the present, or anticipate the future? How do you know what’s going to help you? Where do you find hope?

After experiencing trigeminal neuralgia and receiving an MRI that diagnosed him with MS, Eric consulted with two different neurologists. Rather than discussing the efficacy of his options, one doctor encouraged him to decide which medicine to try based on a bag of marketing materials, and another doctor suggested he choose based on whether he wanted to take a pill or give himself injections. Despite knowing several people diagnosed with multiple sclerosis and consulting with a family friend who is a neurologist, Eric only learned about HSCT by conducting his own research. 

Tune in to learn more about when and where Eric chose to pursue HSCT, the resources available to him during treatment, including a cure for the 9 hour bout of hiccups that he experienced as a side-effect of the chemo, and how he’s faring post-HSCT as he commits to supporting his gut health by eliminating mycotoxins. Please forgive the ‘ghost in the machine’ interference throughout this episode…  

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:
HSCT and Cellular Therapies for Autoimmune Diseases (Burt, Farge, Ruiz, Saccardi & Snowden, 2022).

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

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.

_________________________________

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

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

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. 

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:

The MS Gym

Revisit our chat with Jan-Marie, one of the first to receive HSCT amidst the pandemic (S5 replay)

Warrior: Jan-Marie Morgan
AI: Multiple Sclerosis
HSCT: June, 2020
Superpower: Patience

How often do you take doctors’ first opinions without questioning? How often do you take time for self-care?

Not only does Jan-Marie set a shining example to approach life with optimism and positivity, she offers insight into what it’s like to research scientific evidence to inform opinion, foster support both emotionally and financially, and gain confidence to pursue HSCT during the COVID pandemic. As a nurse practitioner by trade, Jan-Marie used her training in evidence-based medicine to be informed about her options with disease modifying therapies that ultimately did not work. After finding herself frustrated and hopeless with the progression of her multiple sclerosis, Jan-Marie was introduced to HSCT by a girlfriend and within hours completed the application, and in days secured a schedule.

Tune in to hear more about Jan-Marie’s journey to HSCT, changes to the typical experience in Monterrey at Clinica Ruiz for COVID, and how Jan-Marie is faring the first few weeks post-transplant.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 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:
Calm app

Listen again to how Craig tapped the power of patience through his journey with HSCT (S4 replay)

Warrior: Craig Witkowski
AI: Multiple Sclerosis
HSCT: September 2019 in Puebla
Superpower: Patience

Do you find it tough to maintain patience with yourself or doctors? How easily do you find a positive mental outlook? How tightly do you hold hope?

The HSCT Warriors podcast logo frames the top of the image that depicts a strong man waiting at the bottom of a tall staircase, pondering his next steps. The caption identifies the interviewee, Warrior Craig Witkowski, battling the autoimmune disease of multiple sclerosis, who received HSCT in September 2019 in Puebla, and named his superpower as patience.

After being on a first-line drug to hold off initial onset of his MS symptoms, Craig found benefit for a few years until he stopped the medication due to unwelcome side effects, which then caused issues for a couple of years. After changing careers, he spent time without any sign of the disease and then suddenly Craig was blind-sided by an experience while driving that left him nearly paralyzed. Without much of an explanation other than progression of his MS, he started on another disease-modifying-treatment that didn’t touch his disease progression and caused too many side-effects.

Craig researched more about stem cell treatments because his doctors could only offer vague uncertainties and although he found Dr. Burt’s clinical trial at Northwestern, after spending a year fighting insurance to pursue HSCT, Craig learned his disease had progressed, leaving him ineligible for the study criteria. Not willing to give up hope, Craig traveled to Texas for a presentation about Clinica Ruiz and was sold on the possibility that HSCT offered him.

Tune in and learn more about Craig’s unique challenges, fundraising efforts, power of patience, tremendous support of family and friends, and will to find his way to HSCT at Clinica Ruiz in Puebla, Mexico.

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 week 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.