Andi and Jeremy Wrap It Up! The Story of Our Empowering First Season

(3:14) “I had a lot of people who are not part of our Nephrotic Syndrome community, tell me that they listened to it, and just cried the whole time… good friends of mine, who know our story, but haven't necessarily heard it start to finish because nobody sits down to tell someone a story for 45 

minutes.”

(5:52) The impact of bringing up old memories…

(8:23) A shared energy from Cynthia’s episode…

(9:47) Blown away by stories like Mikaela, Jasmine, and Natalie…

(10:33) A crazy connection made between Dr. Ryan and Nicki’s episodes…

(13:39) Two Moms sitting in the same waiting rooms, needing connection…

(17:35) “I feel like the power in this is to be able to provide that information so that people can kind of pick and choose the connections that they want.”

(20:38) A golf tournament that led to amazing connections…

(22:28) “The more people that we include...who have been educated, who know in and out what nephrotic syndrome is… that's spreading awareness. And that awareness just turned us onto another family that we can help.”

(24:36) The behind-the-scenes process of producing a podcast…

(26:27) Jon Rankin’s story will start off season 2…

(29:40) An exciting new theme…

(33:38) A lot packed into Jeremy’s story…

(37:02) Siblings, fiances, spouses, and parents…

(40:32) Pieces of advice to echo, from season one…

(2:06) Feeling alone and reaching out,…

(2:55) The events leading up to diagnosis…

(6:11) “When I was in the middle of it, I just felt so uncomfortable. I felt so sick. I was so tired, and I felt so grateful that I was older and able to talk when I got diagnosed because hearing it was a kid's disease… I couldn't imagine going through it when I was younger, and I couldn't vocalize to other people how I felt.”

(8:24) Swelling, school, Covid, and a supportive family…

(11:05) Great doctors and great teachers…

(13:23) “My answer would be my kidneys hate me or my kidneys are misbehaving just cause they're doing their own thing and it was easier sometimes not getting all the way into it.”

(16:55) Plans after graduation…

(18:30) “I became so interested in how intertwined the body is, how one little thing kind of effects everything else. And that just fascinated me. So I was like, I get to learn more about that. I get to help people, which I just love doing.”

(19:41) Horseback riding…

(21:17) Finding the right meds to get to healthy kidney function…

(27:18) Losing a horse…

(29:31) Figuring out correct dosing routines…

(37:25) Talking about blood draws and IVs…

(41:53) “The attending that was on my case would make a list in the morning of things to do. So, I would stay motivated. They offered to discharge me when I was really sad. When my horse passed away, they were like, you can go home and you can just come back in a few days.”

(44:56) Boston Children’s Hospital…

(47:09) What were things that made school easier and plans for college…

(49:58) Advice from Mikaela… “You need to reach out. You need to talk to people. You're going to collapse if you try to carry this all on your own.”

(1:46) An Instagram meeting…

(3:24) Was it an allergic reaction or something more?

(7:54) Misdiagnosis, swelling, and biopsy…

(11:06) “And I’m not going to lie. I was so scared. I remember having a panic attack at that time of my life. I was quite anxious anyway. And having the phobia of needles, oh just needles, needles, needles. I was so scared of them.”

(13:11) The intensity of a biopsy…

(15:42) Where transplanted kidneys go…

(18:34) Treatment after the diagnosis of Minimal Change Disease…

(22:00) Pursuing studies and trying to find a new normal with medications…

(23:38) “I quickly learned to get over myself…” Balancing performing and the new reality of steroids…

(28:09) “I think the main takeaway I have from thinking about that time in my life is actually the only person judging you is you. No one else cares, apart from you, like really no one else cares. The agents don't care, your teachers don't care, your friends don't care, you care. And that's it.”

(32:10) “I just think your appearance never changes your personality. It really doesn't adjust if your appearance changes.”

(34:21) The impact of stress…

(36:27) Remission early on… and protein in the urine…

(40:40) Looking back is sometimes a blur…

(42:57) A longer sense of freedom…

(45:10) “So actually until I get past that point, we don't know if this treatment has worked and that scares the living daylights out of me. But I try not to let it come to the forefront of my mind because it hasn't happened yet. I just think we'll just cross that bridge when we get to it.”

(48:06) “Hopefully, every once in a while, we are just a little bit better at reminding ourselves a little sooner than we used to that anxiety can make the situation harder.”—Jeremy

(49:54) Another relapse…

(53:28) How acceptance helps mental health… And what motivates you?

(57:23) The impact of a support system…

(59:56) A piece of advice… “It's tough, but it does get better, and there will be bumps along the way, but it does get better, and you will learn to grow.”

(2:30) How Nicki got connected to the NSF Peer Team and the power of a community…

(5:11) Nicki’s nephrotic syndrome journey begins…

(9:57) A Google search reveals scary possibilities…

(11:32) A trip that revealed so much…

(14:07) “So I was wearing these compression socks, and I was in the middle of a crowded subway with all of my master's program students, and I started feeling faint.”

(17:37) Shock and then grieving sets in…

(19:48) “Nephrotic syndrome was a wake-up call to healing from that persona and that lifestyle of thinking I always needed to achieve, always needed to be perfect, always needed to be president of everything and working on something and never take a break. And I think that's what stressed my body out a lot in the first place.”

(20:46) The year after graduation and the experience with Prednisone…

(24:52) No formal diagnosis…

(26:27) An autoimmune component and a glimmer of hope…

(29:47) Several medications, side effects, and a strong desire to reach remission…

(30:44) A link between gut health and nephrotic syndrome…

(33:25) Finding an incredible nephrologist who is willing to look at all options…

(35:40) It takes the right team effort…

(38:16) “I went from sitting on the couch all day to now functioning, like a normal person, having energy to go above and beyond during my days and achieve so many things that I never thought I could do.”

(40:33) Mushrooms, coffee, and lifestyle…

(46:34) “What else can be addressed to lessen inflammation, to make me have energy and feel better and have a good quality of life through this diagnosis?”

(50:20) A trifecta for healing…

(51:48) The personal side of things…

(56:39) “It's an easy thing to do to let your life become nephrotic syndrome for a little while.” Andi, Jeremy, and Nicki comparing experiences…

(59:45) Family support, trust, and rebirth…

(1:02:52) Future goals and a piece of advice...

To reach out to Nicki:

Instagram @nephnicki  

Blog nephnicki.com

Other resources mentioned by Nicki

My root cause practitioner is Emily Morrow: @emilymorrow on Insta 

Her website is theemilymorrow.com

She is currently filled with individual clients but works with women in her group program called Root Cause Formula that accepts applications. 

She also offers courses in blood chemistry and lots of free resources to guide one’s journey. She is certified as an FNTP (Functional Nutritional Therapy Practitioner) and IHP (Integrative Health Practitioner). 

My life coach is Elise Dean, and she coaches with Blush Life Coaching: @joinblush on Insta and joinblush.com

The service was created by Kali Rogers, Founder & CEO and a life coach, and Elise works alongside Kali as Creative Director and Senior Life Coach. While the team is comprised of women, I believe they will coach anyone! Part of their mission is to promote affordable coaching/mental health options (I could see it as a great resource for the Moms out there, in addition to patients!) 

(4:09) Schooling and path towards functional medicine…

(7:31) “The whole body is interrelated. It's no longer the nephron and the

immune system and the neurology and the gut. It's all one and the same.”

Defining functional medicine…

(9:19) Dr. Ryan’s personal journey…

(12:37) Facing a major pivot in life…

(14:41) From net-zero emotional health to acceptance…

(18:07) “It is literally flipping it and believing it. And the way you believe it

is you start looking around and looking for all the great things that you do

have.”

(22:39) Swapping out expectations and attachments…

(25:51) How does nutrition tie into neurology?

(30:19) How do our habits influence our health?

(34:04) “I was just giving him his first dose of CellCept, which is a

chemotherapy medication. And I remember thinking to myself, I know

that they've told me that removing gluten and dairy isn't going to do

anything, but why wouldn't I?”

(36:49) The power of a team and a 3-tier approach…

(42:47) Simple steps to take and practical advice on implementing…

(50:36) The incredible speed at which a bad (or good) habit can form…

(53:21) “The S A V E R S protocol centers me so I can sit in silence and

understand what I'm doing.”

(58:08) Visualizations and lifestyle choices can help to overcome barriers…

(1:00:41) First steps of adding an integrative approach…

(1:05:22) The critical nature of deep sleep…

(1:07:15) A final piece of advice…

(2:17) How Natalie and Andi met…

(6:26) Natalie shares where she is now and where she grew up…

(9:45) Diagnosis and its impact on where her family settled… “My mom really saw that early on, she needed to be with her family in Los Angeles while figuring out what was wrong with her firstborn child... So that's really what I think motivated the move out west, just that bigger community.”

(14:22) Boundaries, protections, and support systems…

(16:47) Explaining an illness to a little girl…

(19:29) The theory on chewing purple bubblegum…

(25:18) “A lot of people who have a chronic illness as a child say that they don't remember being sick, but they remember being loved.”—Andi

(28:37) Cellcept, high school, and feeling good…

(29:23) Two gold nuggets…

(31:10) “It's not a no, but it's a how.” Problem-solving when you have Nephrotic Syndrome…

(35:28) Social stress and relapse…

(38:34) Telling or not telling…

(47:56) Keeping life in balance, and accomplishments despite Nephrotic Syndrome…

(52:12) Advice from Natalie…

(4:12) 10,000 foot view of Cynthia’s story with Minimal Change Disease…

(5:11) An American nomad…

(7:40) A complicated medical history…

(11:01) Strong parents and a strong support system…

(14:11) “I don't ever remember a specific time of coming to that realization. It was woven into daily life. I never remember a time of not having Nephrotic Syndrome.”

(16:14) Various treatments during elementary years…

(20:34) The changes with Cellcept…

(24:25) Weaning off of Cellcept and hoping the disease would be just a pediatric condition…

(27:21) Pivoting her life and finding horses…

(30:42) “I was at the barn all the time. I went there every day after school. I was there all weekend. It really became the place that I just invested myself in, and could absorb, and be someone, at that barn.”

(35:21) Making healthy lifestyle choices that are Nephrotic Syndrome safe…

(37:54) “I think it's really important that as people have these conversations that we don't forget the siblings.”

(41:20) Separating Nephrotic Syndrome from identity…

(44:52) The ups and downs of Prednisone, and getting into remission…

(47:45) “At a very young age, when I started hearing doctors potentially tell me how this could limit my life I was just so determined that they were wrong.”

(50:12) Hard moments and the tool of therapy…

(54:39) What do you think contributed to your remission?

(56:47) A life experience that has strengthened and ignited…

(1:03:25) Advice from Cynthia…

Intro to Show Notes

“A lot of these kids who deal with this, deal with so much that you don't even scratch the surface of it.”—Andi Callaway

The Nephrotic Syndrome Foundation was born out of the impact of this story. 

Listen in on the details of Wilson’s diagnosis, the ups and downs of treatment, and the never-ending fight for stability, hope, and health.

Show Notes

(4:07) An introduction to Andi’s family…

(5:35) Wilson starts showing symptoms that something is not right…

(7:21) The first diagnosis of nephrotic syndrome…

(12:40) “So for every single person, it's so different.” The importance of advocating for yourself…

(15:34) What happens to the siblings? And how do you explain a diagnosis to a child and extended family?

(17:20) The reality of Prednisone sets in…

(23:01) “I think something that is so hard for so many people is that hope or that expectation of, okay, well, this is what we're doing and it's gonna work.” 

(27:15) Side-effects, insurance battles, and relapses…

(30:32) “We didn't really know that there was this world of chronic illness out there that could affect kids.” The challenges in coming to an understanding of the disease and explaining it to others.

(31:56) 504 plans and school hurdles…

(35:30) Managing family dynamics in the midst of chronic disease…

(38:59) Connecting, community, and crying…

(42:43) Getting Wilson into remission…

(48:08) The difficulty and weight of so many decisions…

(53:35) Relapse on the last day of 5th grade…

(54:28) “I'm consistently inspired by Wilson. Just like all these young warriors, his strength is amazing.”

(56:29) Disruptions, frustrations, and accommodations…

(1:01:43) A balancing act and the high end of Prednisone…

(1:04:46) The impact of the 2020 pandemic…

(1:10:08) Andi’s piece of advice…

“These are just stories we're sharing, but you know, they all could trigger

a thought that maybe a parent might then be able to go follow up on and

ask a provider about...”—Andi Callaway

In this episode of The Nephrotic Syndrome Foundation podcast, we give you

a glimpse into our vision and the “Why” behind our efforts. We’re “setting the

stage” for the many future stories you’ll hear.

We believe there are many warriors in the nephrotic syndrome world—from

patients, to parents, siblings, and providers—each with wisdom to share.

Show Notes

(3:25) Andi and Jeremy sharing what it feels like to share their own stories...

(6:53) “I think that's one of our big goals of the podcast, is just to really

bring people together and show that there are so many things that we've

all had to go through.” Finding unity in shared experiences...

(11:27) Reflecting back and being in the trenches—both contribute value.

(15:04) “When you're having a great month, you don't need to tap into this.

Go enjoy your month.” A podcast is a resource that can meet you where

you’re at.

(18:43) Cynthia’s inspiring journey...

(21:34) Wilson’s and Jeremy’s experiences of not wanting one more

procedure.

(25:53) A shoutout to Dr. Orloff and Jon Rankin...

(29:01) The Just One Challenge and how it fits into the nephrotic community...

(32:27) “When I say that they are warriors, I believe it to the core of my

being.”

(35:22) What’s the vision for the podcast six months and two years from now?

(39:37) Getting something you believe in off the ground—chatting about the

challenges of starting the podcast.

(43:10) Flashbacks, PTSD, and self-care...

(47:22) All the types of guests...

(59:55) Ways to get involved...