Learn more about HSCT amid the global COVID pandemic from Jan-Marie and the power of patience (Ep. 48)

Warrior: Jan-Marie
AI: RRMS
HSCT: 6/20
Superpower: Patience 

Do you take doctors’ opinions as gospel? How comfortable are you asking questions and conducting research? Who helps you through tough times?

Jan-Marie

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 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 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:
Calm app

HSCT Warriors Podcast · Learn more about HSCT amid the global COVID pandemic from Jan-Marie and the power of patience

 

Welcoming Season 5 with our dear friend, Ali Strong (Ep. 47)

Warrior: Ali Strong
AI: MS
HSCT: 11/6/17
Superpower: Gratitude

Have you experienced pain so severe it has robbed you of living? How do you find courage?  What choices can you make each day?

S5 Welcome Ali

Our season openers would not be the same without checking in with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, mindset, wellness, and personal challenges to continue promoting wellness, healing and longevity. Based on Ali’s experience with multiple sclerosis that included eleven years of digestive disruption, we discuss preparing for HSCT through diet and developing a healthy mindset. Join us for this informative, authentic, and engaging dialog 

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:
Genomic sequencing: https://yourgenomicresource.com/

HSCT Warriors Podcast · Welcoming Season 5 with our dear friend, Ali Strong (Ep. 47)

Revisit our chat with Jess about her myeloablative experience in Sydney

Warrior: Jess Green
AI: Multiple Sclerosis
HSCT: February 2019 at St. Vincent’s Hospital, Sydney
Superpower: Love and compassion from others

When your doctors run out of options, are you ready to suggest a course of action? Despite the scary struggle or the bad times, can you find the goodness? How strong is your support system?

Replay Jess

With a relatively quick diagnosis of Multiple Sclerosis after her first sign of an issue, Jess researched treatment options and found her doctors at a loss for how to combat her relapses after she failed three different disease modifying drugs in just two years. She encouraged her doctors to send her records to the team running the HSCT Clinical Trial at St. Vincent’s Hospital in Sydney and suddenly found herself accepted to proceed with HSCT.

Tune in and learn more about the importance of connections, compassionate caregivers, and the struggle that Jess experienced when she experienced an allergic reaction during the BEAM protocol with Dr. John Moore and Dr. Barbara Withers at Kinghorn Cancer Centre in Sydney Australia.

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 our chat with Jess about her myeloablative experience in Sydney

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)

Replay our inspiring conversation with Tamara and remember that you are enough (replay from S4)

Warrior: Tamara Netzel
AI: Multiple Sclerosis
HSCT: Dec. 2019, Monterrey Mexico
Superpower: Truth

Have you ever been close to gaining resolution, only for it to slip through the cracks? How long has it taken for you to feel supported by your doctors? What would it look like if you pledged to help just one person get to HSCT?

Replay Tamara

After a long road to securing the diagnosis of multiple sclerosis, the first disease modifying treatment that Tamara tried eventually sent her liver into failure. the first two doses of her second shot at a DMT created bladder problems and damage to her ninth cranial nerve that caused extreme pain. Over the course of ten months as she fought for answers, Tamara was introduced to cannabis and found it to be her only relief. Finally after a third DMT proved ineffective, Tamara found research on HSCT and by connecting with other HSCT Veterans about their experience with Clinica Ruiz, and was ultimately convinced to travel abroad where she found better care than she had ever before received.

Join us to kick off national Multiple Sclerosis awareness month with this deeper dive into so many aspects of life with MS and the rollercoaster ride of avoiding stress, treading feelings of isolation, fighting to advocate for yourself, and taking calculated risks to avoid desperation in order to find quality care or sense of community.

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.

Resources: 

McDonald Criteria
Wahl’s Diet
CruelConsequences.org
Dateline NBC
HSCT Warriors, Inc. 
IG blondewndrwmn

HSCT Warriors Podcast · Replay our inspiring conversation with Tamara and remember that you are enough (replay from S4)

Revisit the power of patience and persistence with Craig (replay from S4)

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 on to hope? 

Replay Craig

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.  After changing careers, he spent some time without any sign of the disease until Craig was suddenly blind-sided by an experience while driving that left him nearly paralyzed. Without much explanation other than progression of his MS, he started on another disease-modifying-treatment that didn’t touch the continued progression and caused additional unwelcome 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 enough to leave him ineligible for the study criteria. Not willing to give up hope, Craig traveled from Chicago to Texas for a presentation about Clinica Ruiz and was sold on the possibilities that HSCT at Clinica Ruiz offered.

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.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 the power of patience and persistence with Craig

 

Celebrate scleroderma awareness and revisit our chat with Meghan (replay from S4)

Warrior: Meghan Newell Davis
AI: Scleroderma
HSCT: 1/22/19 at Duke University
Superpower: Unbreakable

Have you ever watched a doctor google your symptoms to find help? How often do you take the little things in life for granted? As you move through life, do you take caution not to ‘poke the bear’?

Copy of Replay Jess F

Celebrating a son just one year younger than her new immune system, Meghan offers our listeners a glimpse into life with a very aggressive form of scleroderma and her experience with HSCT at Duke University. The highly competitive-Ironman-Nutritionist suddenly found her body to be suddenly sore, stiffening and stonelike. As she continued struggling to hide invisible symptoms that were physically shutting down her body, she spent weeks visiting doctors, researching her symptoms, and experimenting with various alternative remedies to find some relief.

Tune in and hear more about the freight train that wrecked Meghan’s capacity to function in everyday life despite not looking sick. Once she was connected with a rheumatologist, Meghan finally had diagnoses of multiple autoimmune diseases and was fast-tracked to HSCT at Duke University. Through HSCT Meghan gained lifelong warrior friends and family, including her doctors, nurses and care team and shares so many valuable insights!

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.

Resources:
Meghan’s race to HSCT
Meghan_fit4life on Instagram
Dr. Twining, Myrtle Beach
Dr. Baker Frost, Medical University of South Carolina

HSCT Warriors Podcast · Celebrate scleroderma awareness and revisit our chat with Meghan (replay from S4)

Revisit our chat with Jess and her courageous journey with myeloablative HSCT in Canada

Warrior: Jess Faulds
AI: Multiple Sclerosis
HSCT: July 2019 in Calgary, CA
Superpower: Sensation and mental strength 

How do you react when people stare at you? At what age did you feel confident about managing your options with autoimmune disease? Where do you find faith in humanity?

Replay Jess F

Being diagnosed with MS at 15 years young certainly wasn’t a walk in the park for Jess, but it motivated her to keep active and persistent with staying informed about her options. As someone raised to value movement and nutrition, Jess was sure to incorporate these cornerstones throughout her experience with HSCT. 

Tune in and learn more about her routines that promoted a quick rebound from HSCT and the holistic approach to HSCT care and treatment at the clinics in Canada in Calgary and Ottawa.   

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.

Resources:
Wrap Me Cool wraps
Jess Faulds on Instagram: allthrightbites
MS Society of Canada

HSCT Warriors Podcast · Revisit our chat with Jess and her courageous journey with myeloablative HSCT in Canada

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.
_________________________________

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)

Revisit Barry’s journey to HSCT nearly twenty years later

Warrior: Barry Goudy
AI: Relapsing Remitting Multiple Sclerosis
HSCT: August, 2003 at Northwestern in Chicago
Superpower: Belief

How do you place a value on health? When it comes to solutions for your experience with disease, how do you determine whether a treatment is good enough? How far are you willing to go with research?

Replay Barry

Despite the devastation after initially failing requirements for the clinical trial protocol, Barry remained persistent to receive HSCT. Once he was accepted for a new study protocol, Barry geared up for halting the progression and enjoyed such a great experience that he has become an ongoing champion for HSCT. 

Tune in and hear more about how he tried his best to broadcast the hope and opportunity of HSCT with others, and even testified in front of the United States Congress. This final episode of Season 3 also offers insight to the latest at Northwestern and updates about the signature “Talk to a Warrior” program of the HSCT Warriors, Inc. nonprofit.

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 Barry’s journey to HSCT nearly twenty-years later