Lori's Story: Let Her Eat Cake

Summary

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The Medical Detectives

Episode: Lori’s Story – Let Her Eat Cake

Date: September 10, 2025
Hosts: Dr. Erin Nance & Anna O’Brien
Guest: Lori

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Brief Overview

In this gripping episode of The Medical Detectives, hosts Dr. Erin Nance and Anna O’Brien guide listeners through Lori’s astonishing twelve-year medical odyssey. After the birth of her second child, Lori develops perplexing digestive symptoms that are repeatedly dismissed by healthcare professionals. Her journey is emblematic of the challenges many women face when advocating for their health, especially postpartum. Lori’s perseverance ultimately yields a diagnosis of achalasia, a rare esophageal motility disorder, but not before she endures years of pain, malnutrition, and self-doubt. The episode spotlights medical misdiagnosis, healthcare disparities for women, the power of self-advocacy, and the emotional toll of chronic illness.

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Key Discussion Points & Insights

1. Lori’s Background & Onset of Symptoms

• Healthy Start: Lori was a lifelong athlete, runner, and successful professional before symptoms began ([02:01]).
• Initial Episode: Two weeks after her second child’s birth, Lori is jolted awake by stabbing chest pain. She initially attributes it to postpartum bodily changes ([02:41]).
• Intermittent Symptoms: The chest pain recurs sporadically over months, at times relieved by drinking water. The pain is severe, migrates from jaw to chest, and can last hours ([03:31]).
• No Other Symptoms: No accompanying nausea, sweating, or shortness of breath—just unpredictable, excruciating pain ([05:14]).

2. Delayed Medical Attention & Dismissal

• Caregiver Burdens: Lori delays seeking care due to busy motherhood, husband’s work schedule, and belief doctors won’t catch it due to infrequency ([05:46], [07:43]).

• Missed Warning Signs: Dr. Nance highlights the danger of dismissing postpartum chest pain, which can sometimes indicate life-threatening embolisms ([06:12]).

  “If something kind of comes and then it goes, you're like, oh, that was nothing... And you're in a bit of the denial phase… you have now adapted to it.”

  • Dr. Nance [07:06]

  “Every mother I know has this fierce tenacity to be able to just ignore their needs...”

  • Anna [07:43]

3. Symptom Evolution & Initial Misdiagnoses

• Swallowing Difficulties: Two years in, Lori struggles to swallow certain foods, e.g., dry or dense items ([08:08]).

• Medical Consultation: At a checkup, an internist refers her to a GI specialist who rushes her through an endoscopy and diagnoses reflux, prescribing a proton pump inhibitor without thorough investigation ([10:00]).

• Dismissal & Gaslighting: The GI’s PA downplays her concerns with statements like “some patients are just sicker than others,” leading Lori to feel unheard and minimized ([11:30]).

  “What I heard was, I'm wasting your time… That really stuck with me.”

  • Lori [11:46]

• Reluctant Perseverance: Lori tries the medication (omeprazole), but it’s ineffective. She stops taking it ([11:46]).

4. Escalating Symptoms & Continued Frustration

• Self-Education: Lori learns from online research that she may be having esophageal spasms; finds some relief with peppermint and heat, but pain persists ([13:35], [14:14]).

• Normalized Distress: She adjusts her lifestyle around her symptoms, slowly realizing how much she has adapted as the disorder intensifies ([15:04]).

  “It wasn't normal, but it was my normal, so I didn't really even notice.”

  • Lori [14:36]

• First Severe Choking Episode: Twelve years later, Lori can’t swallow food or water, triggering true fear and prompting renewed medical pursuit ([15:56]).

5. Seeking New Care – More Dismissal and Alternative Medicine

• Another Endoscopy, Another Dismissal: The new GI doctor finds a minor esophageal stricture, dilates it, and offers little follow-up plan ([17:58]).

• Functional Medicine Detour: Frustrated, Lori tries alternative medicine. She’s diagnosed (without evidence) with anxiety linked to menopause and urged toward expensive hormone treatment and a restrictive diet, which doesn’t fit her situation ([19:38]).

  “That was completely not helpful.”

  • Lori [20:08]

• Hosts' Reflection: Dr. Nance and Anna discuss patient tendency to try alternative medicine after repeated failures in the traditional system ([20:10]–[22:15]).

  “I never fault anyone for trying. And listen, a lot of people... have had lots of success with these alternative medical doctors... But I see it as kind of part of the pathway of misdiagnosis.”

  • Dr. Nance [20:10]

6. The Power (and Pitfalls) of Self-Advocacy

• Researching Providers: Lori realizes the importance of vetting specialists and checking reviews—which she hadn’t done initially ([22:29]).

• Healthcare System Constraints: The hosts discuss challenges of insurance networks and referral pathways, and the necessity—and privilege—of seeking second opinions ([23:18]).

  “If you don't think your doctor's listening to you, find a new doctor.”

  • Anna [21:46]

7. Finally—A Breakthrough and the Correct Diagnosis

• Hope through Media: Lori reads about achalasia and feels, for the first time, “heard” ([26:09]).

• Key Encounter: A PA asks her to describe her pain—something no provider had done in 12 years. This leads to a prescription for hyocyamine, which provides relief ([26:09]).

• Proper Testing: An esophageal manometry and barium swallow finally reveal classic achalasia and the characteristic “bird’s beak” appearance on imaging ([36:57]).

  “As soon as I typed ‘achalasia’ and read the description, it was like—I am not crazy. I was heard.”

  • Lori [26:09]

  “The PA… said something no one had said to me in 12 years: Can you describe the pain to me?”

  • Lori [26:09]

• Emotional Validation: For Lori, getting a concrete diagnosis brings relief and validation, despite the daunting implications ([37:57]).

  “I knew this was not a fun diagnosis, but I had an answer… I knew I wasn’t crazy.”

  • Lori [37:57]

8. Treatment, Recovery, and Reflection

• Surgical Decision: Lori chooses a Heller myotomy with fundoplication—an invasive yet long-term surgical solution—over a less invasive “POEM” procedure ([47:42]).

• Obstacles to Care: Prolonged delays between diagnosis and surgery, malnutrition, and emotional distress dominate the months preceding her operation. Lori is nearly forced to adopt tube feeding ([42:17]).

• Breakthrough Procedure: After advocating for herself (and with the right doctor), Lori receives the surgery, which immediately restores her ability to swallow ([51:10]–[53:34]).

  “He was great… He said: I can save your life, I can change your life, I can give you your quality of life back.”

  • Lori [43:11]

• Symbolic Recovery: Lori’s first real meal is her daughter’s birthday cake, marking a literal and metaphorical return to life ([54:16]).

  “It was my daughter’s 14th birthday and it was birthday cake… I took one bite… and it went down and it stayed down and it felt so good.”

  • Lori [54:16]

9. Thematic Discussions & Takeaways

• Mothers Neglecting Their Health: The episode highlights how mothers often de-prioritize their health needs due to caregiving responsibilities, with Anna and Dr. Nance reflecting on personal and societal tendencies ([66:46]).

  “There's value in taking care of yourself so that you can be at your best to help take care of others.”

  • Anna [67:34]

• Malnutrition & Healthcare Fails: Dr. Nance emphasizes that extended malnutrition is unacceptable in modern healthcare, highlighting available interventions like TPN (total parenteral nutrition) ([55:47]).

  “Your description of your malnourished state is unacceptable… There are methods of getting this nutrition.”

  • Dr. Nance [55:47]

• Difficulty of Diagnosis: The complexity and duration of Lori’s diagnostic process mirrors many women’s experience—particularly in “uncommon” diseases and when symptoms overlap with anxiety or depression ([63:32]).

  “The more I do this show, the more I realize… one of our biggest problems with the medical system now is just communication between specialties.”

  • Anna [63:32]

• Self-Advocacy Lessons: Lori encourages listeners not to give up, to seek second opinions, and to lean on loved ones when advocating for themselves ([65:02]).

  “I would hope that even if someone doesn't have this condition, the things I learned… would apply to other things.”

  • Lori [65:02]

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Notable Quotes & Memorable Moments

• [07:43] Anna:
  “Every mother I know has this fierce tenacity to just ignore their needs… usually it's the mom's needs to be very real.”
• [11:46] Lori:
  “What I heard was, I'm wasting your time… That really stuck with me.”
• [26:09] Lori:
  “The PA… said something no one had said to me in 12 years: Can you describe the pain to me?”
• [37:57] Lori:
  “I knew I wasn’t crazy. …I had an answer. …This is something that’s treatable.”
• [43:11] Lori:
  “He was great… He said: I can save your life, I can change your life, I can give you your quality of life back.”
• [54:16] Lori:
  “It was my daughter’s 14th birthday and it was birthday cake… I took one bite… and it went down and it stayed down and it felt so good.”
• [55:47] Dr. Nance:
  “Your description of your malnourished state is unacceptable… There are methods of getting this nutrition.”

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Timestamps for Important Segments

| Time | Segment/Topic | |-----------|------------------------------------------------------| | 02:01 | Lori’s healthy baseline and early postpartum episode | | 05:46 | Delays in seeking care—parenting & societal factors | | 06:12 | Risks of postpartum chest pain—need for vigilance | | 08:08 | Dysphagia symptoms appear | | 10:00 | First GI consultation and dismissal | | 11:46 | The “some patients are sicker” moment—gaslighting | | 13:35 | Lori self-diagnoses esophageal spasms online | | 15:56 | Severe escalation: food and water stuck | | 17:58 | Second GI, more dismissal, stricture dilation | | 19:38 | Alternative medicine detour, misdiagnosis of anxiety | | 22:29 | Reflection on researching doctors/checking reviews | | 26:09 | Reads about achalasia, finally feels “heard” | | 36:57 | Classic “bird’s beak” on barium swallow confirms Dx | | 42:17 | Chronic malnutrition, emotional breakdown | | 51:10 | Undergoes surgery (Heller myotomy/fundoplication) | | 54:16 | First post-op meal: daughter’s birthday cake | | 63:32 | Hosts reflect on the maze of specialist care | | 65:02 | Lori’s lessons on advocacy transfer beyond illness |

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Final Reflections: Themes and Lessons

• The Invisibility of Women’s Pain: Lori’s journey is a powerful warning about dismissing women’s symptoms, especially in postpartum, and the implicit expectation that mothers must sideline their health.
• Importance of Advocacy and Second Opinions: Persistence is vital. The first answer is not always the right one.
• Systemic Healthcare Hurdles: Insurance constraints, poor communication between specialists, and lack of continuity in care delay diagnosis and compound suffering.
• Relief in Diagnosis: A correct diagnosis is not just the gateway to treatment—it is a deliverance from self-doubt and gaslighting.
• Celebrating Small Victories: Sometimes, eating cake is more than a meal—it’s a reclaiming of life.
• Support Systems Matter: Both for practical needs during illness and emotional resilience.

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For Listeners Who Haven’t Heard the Episode:

This episode walks the listener through every twist and frustration of Lori’s story—from her athletic healthy life, to her mysterious and life-altering symptoms, the many false leads, the power of finally being heard, and her ultimate return to health with a single piece of birthday cake. If you’ve ever been ignored or dismissed in a medical crisis, or found the system bewildering and lonely, Lori’s hard-won lessons—and the hosts’ compassionate, expert insights—will resonate deeply and equip you with tools for your own journey.

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Note: Skipped all advertisements, show credits, and disclaimers as per instructions.

Transcript

[A]

Hello, Dr. Nance, how are you?

[B]

I'm good. I'm coming to you live from my new apartment, although still in a state of discombobulation, but I'm excited to find my new home for the show.

[A]

I'm coming at you from the couch.

[B]

Today, but you have a lovely plant behind you.

[A]

I do have a nice plant back there. Anyway, today's episode I would like to call Let them or let her eat cake.

[B]

Yes, that is the goal at the end of this episode is for everyone to enjoy their cake. No, we have a great episode. Lori, who as I mentioned early on is another one of our guests who whose problems start right after she's had a baby. And one of the themes that we talk about is how vulnerable people are in that state. And I don't think we talk about it enough.

[A]

No, I feel the more I do the show, the more I realize that people are not supported enough after pregnancy, mentally, physically, just in general, and that our care for them really does center around. And you bring it up in the episode our around an OB gyn, which is really not someone who's looking at every part of a person's health. So it's a really interesting story and let's just jump right in.

[B]

Let's do it. Hi, Lori, thank you so much for joining us on the Medical Detectives today.

[C]

Thanks for having me.

[B]

Lori, your story is really interesting because it has to deal with postpartum, which we have had many guests like this, but no one has ever had a story like yours. So I'd like to start with before anything happened, could you tell us what life was like? Were you generally healthy?

[C]

I always was super healthy. I'm a runner. I've run over a dozen half marathons, I've done triathlons. I've always taking really good care of myself. I've always been really healthy. And when this all started, I was 33 and I had just had my second baby. I had a three year old and a two week old, both girls and married. I got married young. We just had our 30th anniversary, so things were good. I. I had. Well, I still have a consulting business. I'm a mechanical engineer. And things were good. The pregnancy went well. The delivery, like I got to the hospital an hour and a half before she was born. It was so quick, so smooth, textbook. And then one night when she was about two weeks old, in the middle of the night, I was dead asleep and all of a sudden felt this stabbing chest pain and it made me sit up and I just kind of took a few breaths and it went away. And I just kind of thought like, I don't know, maybe my organs are shifting back into place. I don't know. I just had a baby, so it seems like almost anything can happen at that point. And it was over, so I just didn't really think about it too much.

[A]

And was this your first child that you'd had?

[C]

No, this was my second. I had a three year old.

[A]

Okay, so like it was different though than your first pregnancy. Like this isn't something that happened previously, right?

[C]

Yeah, this never happened after my first daughter. Okay. So I had my postpartum visit. I didn't even bring it up because it was just a blip. It was less than a minute. It hadn't happened again, so I didn't even say anything. And then about a month later, it happened again. And sitting up in the deep breaths, they didn't help. And so I thought, I'll just try and get a drink of water. Got up and got some water and it worked, it went away. And this just kind of kept happening like maybe once or twice a month. And sometimes water would work, sometimes water wouldn't work. And it, it was like I would feel this little twinge in my jaw and my ear and then this pain would move down my throat, down my chest, and then kind of below my ribcage to the left side. And it would worsen as it went down. It kind of reminded me of contractions in that sense. And then I get a little break, like 5, 10 second break. And then it would start over again and it was just excruciating. And it could go on for hours and hours.

[B]

So it would just come primarily out of the blue.

[C]

Always out of the blue, out of the blue. Never related to the day. I still don't know what triggers it. It's out of the blue and mostly at night, but it could happen during the day. And I could be driving my kids around in car seats and just be like, mom needs a drink real bad. And I just go to the mall or whatever, just hoping they'd have a water fountain and hoping that that was the one time that the water would work.

[B]

Were there ever any other symptoms like shortness of breath or feeling nauseous or sweating? Any. Anything else?

[C]

No, nothing like that.

[A]

So it's just intense pain that comes out of nowhere that goes away with.

[C]

Water sometimes, but not always. Sometimes, yeah. Wow. Yeah. So about two years into this, I noticed that. That some things are getting kind of hard to swallow, like boiled egg yolks.

[A]

Wait, had you talked to any doctor about this over this two year period of you having this pain? Or were you just like.

[C]

I just. I had two little kids. My husband is a pilot. He was traveling four days a week. And then when he was home, that was when I would see clients. And so like a million moms everywhere. I just didn't make it a priority. And then I also felt like with it being so sporadic, it was going to be really hard for them to do any kind of test. It wasn't like they were going to be able to capture in action. And I want to say something because.

[B]

This is not what you have. I know the answer. I know what you have. But for any new mom out there, severe sharp pain in your chest after giving birth, it is very worrisome for something called a fat embolism or a pulmonary embolism. But particularly in the postpartum period, you can get either. It's called an amniotic fluid embolism, fat embolism, a pulmonary embolism, which is a blood clot. And it comes out of the blue and it's a very sharp pain in the chest. But people die. So I'm so grateful that that was not your situation. But it's very. The amniotic fluid embolism is very specific to the postpartum period. So that's why I just want to bring that up.

[C]

Oh, that's good to know. Yeah, I guess I should have brought it up.

[B]

Well, listen, when. And I think most people think about this, right? If something kind of comes and then it goes, you're like, oh, that was nothing, right? And then sometimes it'll come again, but it doesn't stick around. So you're like, okay, it's still nothing. And you're in a bit of the denial phase and it's not impacting you, at least now to the point where it's affecting your ability to watch your kids or do your work or whatnot. So you have now adapted to it, and you're like, oh, this is just something that happens from time to time, right? And then we kind of write it off.

[A]

I mean, candidly, every mother I know has this fierce tenacity to be able to just ignore their needs, especially during early years of childhood. And probably not the best for anyone, but it is oftentimes the reality because there's just too much to do, too much to take care of, and something's got to give. And usually it's the mom's needs to be very real.

[C]

That's. That's exactly what happened. So I was about two years into this and I didn't even really know at the time that these two things could be correlated. But I noticed some things were getting kind of hard to swallow and I. It was just kind of a pressure as I swallowed them. Like anything dry, like, like a bagel or rice, things like that. I just would have to chew them really carefully and follow them with water. And I could just kind of feel them moving down. And then you know how when you swallow cold water, you can feel it go through your chest and hit your stomach. I just feel that that was slow. And I didn't really think that these two things could be related, but I did finally. That's two years later. I had my yearly checkup and there was a internal medicine doctor that worked at my OB GYN clinic. So I made the appointment with her instead of. Normally I see my midwife does just like general women's care. So normally I would see her, but I went to the internist and she asked a lot of questions. Basically figured out she was, she was pretty confident this was digestive, not my heart. And she referred me to a GI for an endoscopy. And I didn't check reviews or anything. I just trusted where she sent me. We never had like a pre op visit or anything. And I went to that and he came in and talked to me and not lying, he spent less than a minute talking to me. He didn't ask any details about what was going on and got the endoscopy done. And he came back and I was still coming out of the propofol and I could think, think pretty clearly, but I couldn't form sentences yet. I couldn't even talk to him. And he said, you have reflux and that's what's causing all this. And so he said I needed to take proton pump inhibitor. Oh my prosolved. I would just have to take that for the rest of my life. And I had so many questions, but I just, I couldn't form the words yet. And then he was gone. And so I made an appointment with his pa. It was about a week and by then all the results were back from. They had done some biopsies and stuff. And my big concern was I was afraid it was esophageal cancer and also an ulcer. Those two things I was worried about, they were both negative. So I went to the PA and I told her I've had heartburn before at the end of my pregnancies and it did not feel like this. And I could prevent it by eating smaller meals, and I could get rid of it by taking tums. This does not feel like that at all. And she said, well, heartburn feels different to different people. And I was just thinking, I'm the same person, and I know how it feels to me. But she had been running late, and she had said something to me like, she apologized for being late, and I really wasn't upset. I understand this happens all the time. But then she said, some patients are just sicker than others. And I know what she was trying to portray to me is probably not what I heard, but what I heard was, I'm wasting my time. I'm wasting your time. Like, I'm not really sick. I don't need to be here. And that really stuck with me, and so I just kind of left.

[A]

So she really just said to you, like, some people are sicker than others? Like, that's wild to me. That, like, well, a. It's a no dust statement, right? Like, no. No duh. Right? Why would you. Why would. What value is there in saying that to anyone?

[C]

Yeah, it was hard to hear. And it. It was a reason why. At that point, I kind of just gave up. I was just like, I just have to live with this. And I did actually try taking omeprazole for a little while, and it didn't make any difference. So I. I stopped.

[B]

And just so people understand, kind of the pathway of how meprazole or PPI works and what acid reflux is, is, you know, your stomach is full of acid. That's what breaks down the food that you eat. And there is a sphincter, right, that you have your esophagus, which is the tube, your sphincter, which is the lower esophageal sphincter between the esophagus and the stomach. And that sphincter is supposed to close to keep the acidic contents out of the esophagus. Okay? Now, in acid reflux, either the sphincter is too loose or there's just too much acid going backwards up the esophagus. And that's why it hurts, right? Because it burns the stomach. The cells are different from the esophagus cells, right? Because they're two different purposes. The esophagus is just a muscular tube, like a toothpaste. It's just squirting food down. The stomach is a highly specialized organ that is made to deal in a very acidic environment, has different types of muscle, different types of. Call it villi absorption. So how omeprazole works is it is a PPI or a proton pump inhibitor, and it is inhibiting your stomach's ability to create as much acid. So if there's not enough acid, that it's not going to reflux back up into the esophagus. And so it's mainly to deal with the acidity. It sounds like acidity wasn't your problem.

[C]

No, acidity wasn't my problem. I didn't know that for sure yet, but. Yeah. So sometime over the next decade, I. From Dr. Google, I found out that what this was was esophageal spasms, which is not really a diagnosis. It's more like a symptom because there's a lot of things that can cause it, and one of them is reflux can cause it. But that was kind of helpful because I found online that peppermint can help with that. And also a heating pad on my chest would sometimes help. Or like a hot shower, some heat on my chest.

[A]

And did those work? Better than just drinking water?

[C]

Better than just drinking water. But there was times where just nothing worked. And I would stay curled up on the couch just crying for hours. Like five, six hours at a time in just these waves of pain.

[B]

Did you have digestion problems at this point? Like, were you throwing up? Were you? Or just the pain? Just.

[C]

Just the pain. Just pain. Okay. And. And the trouble swallowing. I think it was getting worse, but so slowly that I didn't really notice. Like, I remember one day watching my husband eat, and I was just like, how? And. And my husband used to be a paramedic, so he learned to eat really fast, but still I was just like, how is it even possible to get food from your plate to your stomach that fast? And so I think it wasn't normal, but it was my normal, so I didn't really even notice.

[A]

I think often, and we've talked about this on the show before, that when you have a symptom come on and it worsens over time, you get more and more adapted to it. So it might be 10 times worse than when you first experienced it, but in your mind, it's still the same because you've learned to deal with it at the same pace. It's gotten worse. So by the time you're actually realizing there's a difference, it's actually way worse, like, to a point where it's debilitating in your life because you just get so comfortable just ignoring it.

[C]

Yeah, that's exactly what happened. So in the summer of 2022. So I'm now, 12 years into this. Oh, gosh, 12 years. Yeah. That was the first time that I ate something, and I just could not get it to make it to my stomach.

[A]

And so when you say that, did it get stuck or.

[C]

Not? Like, stuck, stuck. I could just feel it there. And if I, I. What I eventually did is I drank so much water that it triggered my gag reflex. And I brought it back up because the water wasn't going down either. Nothing was going down. And it was. It was terrifying. It was really scary. I was afraid I was going to choke. I was home alone. And so at that point, I started thinking, I've got to see another doctor about this account, live like this. And so I. This time I researched reviews on doctors. I went to a different clinic, and. And my husband was starting to think maybe I had Ms. And that just never felt right to me because I felt like If I had Ms. Over 12 years, it's gonna affect something besides just my swallowing. Like, they could still walk and all my other muscles work just fine.

[A]

I also think it's wild that you almost had to choke before. You're like, okay, I'll go to the doctor.

[C]

Right. And my kids were pretty independent at that point, too, so I really can't even blame it on them at that point.

[A]

Life happens, you know? And, yeah, we. We've. We mentioned this all the time, but we get so comfortable just ignoring our issues because it feels uncomfortable and awkward sometimes to acknowledge that there's a problem. So it's like, oh, it's not that bad. I can live with it, right? Until.

[C]

And especially something that other people don't really deal with, like, if it's a headache or something, you can explain that to someone. But how do I explain? Like, I get these weird chest pains that knock me out for hours and I can't swallow. That's just hard to explain to people.

[A]

Oh, and if you tell somebody, they're going to tell you for about two hours their magic cure that they read on the Internet. That solves it. And if you just did X, Y, and Z, you wouldn't have this problem. Or if you switched your diet to whatever the weird diet du jour is, like, so I get it, too. You don't want to tell anybody, because then it's like, oh, I got to sit through all the advice that I don't want.

[C]

Right, Exactly. So I made an appointment with another clinic. I saw the page, and she wanted to do another endoscopy. And it was about two and a half months out, and she told Me, I take a metrozole twice a day leading up to it. And so, yeah, immediately I'm like, she has these preconceived notions, too. And it was. It was frustrating, but I was going to do my due diligence. I was going to show them, So I took it. And so now, as of today, I've had four endoscopies, and that one was the only one where I had gastritis or my stomach was irritated. And I kind of wonder if you don't need to be on omeprazole, but you take it. Maybe that caused it. It's just. It's interesting that that's the only time I had any problems with that. So I had the next endoscopy, and he said, I found just a minor stricture, which is just like a narrowing, and he had dilated it. And he said, if that doesn't work, come back. And of course, I completely ignored him because I just felt like he doesn't know either, and he. He doesn't know how to find out. And I wish that he had said, come back because I'm going to do this test to check for this condition so that I felt like he had a plan. I just felt like he was grasping at straws. So I didn't go back. I decided to try functional medicine. And that. I mean, I have had good luck with functional medicine with other things in the past, but you have to have a good doctor, I think. And she diagnosed me with generalized anxiety disorder, and she said it was because I was perimenopausal and I needed to be on hormone replacement therapy, which was $400 a month. And also. And like she said, I need to be on a low histamine diet, which means no leftovers. And the last thing I needed was to further restrict my diet at that point.

[A]

So, in short, that was not a helpful visit either.

[C]

Yeah, that was completely not helpful.

[B]

But I just want to say, because this happened in our last episode, our guest, you know, because often I find this is a pattern of. Our guests start out seeing their primary care or their MDs or their subspecialists, and when they don't get any answers or when nothing changes, they go see the functional medicine doctor, the chiropractor, the acupuncturist, and, you know, there's a lot of discourse like, why would anyone ever go to those people? You know, I go, well, it's because they haven't gotten the right answers like most people have tried. Right. They have tried talking with their primary care with their OB GYNs, and it's not working. So I. I never fault anyone for trying. And listen, a lot of people tell you that they have had lots of success with these alternative medical doctors. And so I just want to bring up that up because I find that that is a pattern I see in our guests. And unfortunately, I don't think we've had anyone really go to one of those doctors and they were the ones to solve the answer. And most times they are sold some supplements and some things that they probably did not need. But I see it as kind of part of the pathway of misdiagnosis.

[C]

Yeah, you just run out of options. You just don't know what else to do. Yeah.

[A]

I also think it's really interesting that a lot of people don't realize that going to the doctor is not like the end all, be all, like the first doctor you see. Whatever they tell you, that's not the only thing you're going to learn about medicine. Like, you can go to as many doctors as you need until you feel comfortable. And I hear so many women are like, well, my doctor says this, and I don't think he's listening to me. And I'm like, well, first of all, if you don't think your doctor's listening to you, find a new doctor.

[C]

Right.

[A]

That's the first step. And I often find that sometimes when people go to functional medicine, it's because they haven't taken the simple step to just find a new doctor or find a doctor that listens to them or. Or explore that area fully.

[C]

Yeah, I. I would say also, if you're referred to a specialist from your primary doctor, it's okay to do the reviews and not just assume that that's the place to go. Because that first doctor I went to, he has horrific reviews. And. And I wish I had looked that up and said, now I'll go to a gi, but not him. Yeah.

[B]

I'll tell you, the reviews matter. I just had a patient come see me today for the first time, and she goes, people really love you.

[C]

Yeah, I don't think I'll ever go without looking.

[B]

But, yeah, I think it does. It does make a difference. And to your point, Right. And this is not some, like, doctor conspiracy theory about doctors only prescribing to one. But, like, if you're in the Mount Sinai health system, they're going to refer you to the Mount Sinai ent purse.

[C]

Right.

[B]

They're going to. So it's just part of, like, their platform. And to be honest, there's a lot of pressure from the insurance companies to only go to doctors in the network. That's, that's part of the whole reason. Because they're like, well, we're not going to pay for it because they're not in your network. But that doesn't necessarily mean that the right doctor for you is going to be in that network, whether it's in the system or in your insurance network. And we say this all the time. It is very difficult to tell people, hey, just go find another doctor or hey, find this doctor who's out of network. That is a luxury that many, many people do not have. But if it is a choice, yes, do your homework, do your diligence. Read the reviews. For sure.

[C]

Yeah. Well, I also found out the first doctor I went to, he does clinical trials for reflux medication and he invited me to probably several dozen over the years. And I kind of wonder if maybe he had a financial reason for that diagnosis. I don't know. I'd like to think that that's not the case, but it makes me wonder.

[A]

You'll never know.

[C]

Yeah, yeah.

[A]

I mean you might know, but like.

[B]

It'S, it's actually you 100% can know. Because every doctor, okay, every penny that we are ever paid by a pharmaceutical company or medical device company is public. I cannot know that. I cannot think of the website right now. But I even one day tested it out for myself because I have no financial disclosures. I put in my name and, and it said that I had been paid like $22 and it's because I went to like a lunch. Right. That pharmaceutical rep brought. And so every penny is mandated to be disclosed so you can look up your doctor and you can see the financial disclosures.

[A]

Okay, how do you do this? How do you do this?

[B]

This, this in the show notes. I'll, I'll, we'll, we'll put it in. But yes, because you should know 100%.

[A]

This, you know, this is like mind blowing to me right now.

[B]

Yeah. When I mean there are laws, the stark laws, the anti kickback laws, there are disclosure laws where if you are. And this probably is very pertinent to these endoscopy centers because a lot of endoscopy centers are owned by the doctor, so they have to disclose if they are an owner of the center because they have an incentive to bring you to that center because they're not only being reimbursed for their services, but also for the center.

[C]

Wow, that's good to know.

[A]

I'm just processing everything you just told us. Because I feel like this is. This is one of those pro tips that really can help you get to the bottom of motivations for things.

[C]

So. Wow. Yeah. So at this point, about a year into the first time that I had not been able to swallow something and that was progressively getting worse. It was to the point where it was almost daily there was something that I just couldn't get down. And I was just reading the local news and there was a story about a surgeon who was the only one in the Intermountain west to perform this new procedure for a rare esophageal condition. And of course, I'm like all over this. And I didn't even know how to pronounce it. It looked like achalasia. And so I go to Google, I type in achalasia, and it was like I was hurt. For the first time, I was by myself. I wasn't even in a doctor's office. And it was like, I am not crazy. I was hurt. Somebody. There was somebody out there that knew what was wrong with me and knew how to fix it. And I don't even know how to describe how that felt other than just I finally felt like somebody heard me. And of course, you don't call a world class surgeon and just get right in. Right. And I knew that. I knew I needed a referral. So I went back to my GI clinic and I saw a different PA this time. And she said something that nobody had sent to me in 12 years, said, can you describe the pain to me? Nobody had asked me to do that. And I described it the way I described it to you. And she said, you're having esophageal spasms. And there's this medication called hyocyamine that works great. And this stuff has been around literally the 1800. It's like 2 bucks for 60 pills. And it had been there all along. This isn't some new state of the art thing that was just vented. As she finally asked me to describe the pain, she was able to prescribe it for me. And it has changed my life. It causes a little bit of blurred vision for me because it's a muscle relaxer. So it kind of messes with my eyes and it only lasts about three hours and I can only take it every six. So if I'm having a really long episode, sometimes I start to deal with a lot of pain. But if I have that with me and I have a spasm most of the time, it will. It will stop it. Wow. And yeah. And it's so frustrating to think 12 years, hours and hours, excruciating pain could have been stopped with this 200 year old drug for $2 if somebody had just listened to. So yeah, she prescribed that and I started taking it. And she said, I want to do an esophageal manometry. And it was about two months out and so I scheduled that. Oh, and she also wanted to do a 24 hour ph study to rule out reflux. And I don't know why that wasn't done 12 years earlier either. But in the two months leading up to that, there was one day where I was just sitting on the bathroom floor and I realized like no solid food that I had eaten for three days had made it to my stomach. And so I, I switched to a liquid diet. I would just have smoothies and blended soup and protein shakes and still I was probably regurgitating like part of every meal. And so I started losing weight pretty quick and I was at a healthy weight. I didn't have weight. I was like at the bottom end of a healthy weight. And my doctor doesn't know this. You know the people doing the manometry, nobody knows this. And so I called to see if I could get on the cancellation list and I did, but it was still a two month wait. I didn't get any earlier. So I got in finally for the manometry and it was so traumatizing. They put this tube probably like the diameter of a pencil up your nose and down your throat and then you have to lay flat and there's like little marbles that sit right on your gag reflex and they have you swallow saline And I couldn't lay flat. Like at that point I was already sleeping elevated because otherwise I would choke on my own saliva at night. And I was afraid I was going to aspirate. So as she was placing the catheter, this was a teaching hospital and the one placing the catheter was being trained. And she's telling her trainee, this doesn't look right. I don't think it's in the right spot. I don't think this is right. And all this while I'm just trying not to gag. And having a foreign body in there, your body just creates all this mucus. And I can't move mucus to my stomach. So I'm just like grabbing tissue after tissue, spinning out mucus. And I saw the trainee said, no, you're good, it's in the right spot. And I saw the student roll her eyes like she didn't think it was, but at that point, I just want to get this over with. So I did they have you swallow saline 10 times and finally got that done. And then they placed another catheter for the pH study. And Haley actually talked about this on another one of your podcasts, and I could totally relate. You have to have this. This tube down your throat for 24 hours, and it's super uncomfortable. I just had to. I had to draw on all my running skills of, like, if I'm having a bad day, I'll break it up into fractions. And I'd be like, okay, I'm a third of the way done. I'm a fourth of the way done. And got that over with, and you go back, and they take tube out. And so I got the results. The PH results, surprise, surprise, were negative. I was fine. There was no reflux, and the manometry results. So there's. There's two components to achalasia, and maybe, Erin, you might be able to be more clear about this, but the esophagus has peristalsis, which pushes food down. And then in theory, once it hits the bottom, the LES opens, food goes in, les closes. So the two components to achalasia, one is peristalsis is really weak or gone. And two is the LES doesn't open enough for the food to pass through. And so the results showed that I had no peristalsis at all, but the pressure at the bottom was fine. And so I should have at least been able to drink liquids consistently. And I just didn't understand because I could have potato soup for dinner like the consistency of milk, and three hours later still be bringing up potato soup. Liquids were not even making it to my stomach. And so I just didn't know. I was so confused. And the doctor that read the results, he never talked to me at all. He never called me. He never asked any questions. And it even said on there, basically, if I had achalasia, it had been treated already. This is news to me. I've never been treated. And so these results go to my gi, and after a week, I hadn't heard from him. And again, he doesn't know how bad things I've gotten at this point over the last two months that I'm just deteriorating, losing weight so fast. And they said, well, he has to talk to some of his colleagues, and then he'll get back to you in. In the meantime, I was just desperate. And Cleveland Clinic is where the leading experts are on this, and so they'll do a second Opinion. But insurance doesn't cover it. It's expensive, but I was just desperate. I'm so hungry and I'm so tired. And so I did it. I paid for it. And they recommended that I do another manometry with the catheter, placed under sedation with the camera to make sure it's in the right place. And that was the first time that I thought, oh, I'm not crazy. This wasn't done right. So that muscle was so tight that the probe didn't go in there. It was just floating in my esophagus. And that's why there was low pressure. Yeah.

[B]

And so for anyone who does not know what a manometry test is, it's a test measuring the pressure inside the digestive tract. So you're looking at the pressure and the force of the contractions. Right. Of your esophagus, of your stomach, small intestine. And so in Lori's case, the esophagus, it's. It's not meant to have a lot of pressure. You're supposed to just push things and then go along. And the stomach is what's really like mashing and churning things. And so it sounds like it never even made it to the stomach in that first test.

[C]

Yeah, it was. The muscle was too tight for it to go in there. So I finally got a call back from the doctor and went in, and I was able to tell her how bad things have gotten. Told her, you know, like, I am vomiting five, six times a day. I'm losing weight, I'm exhausted. Sometimes I can't drink water. And so she ordered a barium swallow study, and she also got me in for an iv. They had an IV clinic in the office, which was great. That gave me some energy back. I felt my mood was better. It helped a lot. So the swallow study, luckily, that was less than a week wait. So I went in there, and I was standing on the little plate, and I was so scared. I was like, you could hear the equipment rattling because I was just shaking. And they show me this tray with three cups of barium solution. And that made me even more nervous because I'm like, it could take me two hours to drink three cups, and even then I can't guarantee it's all going down. And I was so nervous. And I was also just afraid that they would find out I didn't have achalasia. Then what's next? So I took one swallow, and I looked at the radiologist face, and his eyes were super concerned. His brow is furrowed. And I look at the tech, and she's got, like, eyeballs the size of grapefruit. She's looking at him, she's looking at me, she's looking at the screen. And I was like, yes, they are seeing something that they don't ever see. And he said to me, has anybody ever told you you have achalasia? And I was like, no, but thank you. And he showed me the picture, and it's called a bird's beak. And you can just see where the barium just goes down to a point, point, and then it just sits there. And he had me sit there for 10 minutes and then look at it again. And it was all still just sitting there. And he said, we have to stop to study because I'm afraid you're going to aspirate barium.

[B]

And so what. What the barium study looks like is it's almost like a liquid X ray. So you are drinking contrast material that when you do a radiograph, it will show white. So in people who have achalasia, what is happening is the sphincter is too tight. The esophagus from so long trying to push, push, push, push. It loses, or the coordination of the peristalsis becomes lost. And so now you just get a big stretched out tube. It's no longer like a nice little, you know, toothpaste tube. It gets all stretched out. And so what happens is all of that barium gets collected, and then you can see where it's trying to pass through that sphincter. And that's what the bird beak looks like. So you got like a big white mound and then a little. Little bird's beak trying to pass through the sphincter.

[C]

Yeah, it was, like, textbook. You could tell. And so I hit the restroom on the way out, threw up the barium. And then I went outside and called my husband. And he probably thought I was crazy because I was elated. Like, I knew this was chronic, lifelong progressive. I knew this was not a fun diagnosis, but I had an answer. And I can't even describe, like, how good it felt to just feel like I'm not crazy. There's something really wrong with me. And also, this is something that's treatable. And, yeah, he probably just did not understand why I was so happy in that moment. And the doctor's office wanted me back the next day. And I went back in, and she walked in and she said, you're going to have to do another geometry. And I felt like I'd just been punched in the stomach. Said, we have to know what type you have in order to treat it. And in the wall study doesn't show that. And I was just like, how can I do that again? I barely made it the first time. I asked her if I could take Dalium. She said, no muscle relaxers. And I asked her if. If it was so bad the first time, they couldn't get that probe in there. How is this going to be different? And she couldn't answer me. And I just said, I feel like I'm starving. And. And I was just so desperate for her to understand, like, how bad this had impacted my life. And I'm still working, I've got kids. I. I'm still living life without ever being nourished. It's always being hungry. And she did offer me a different muscle relaxer to take before I eat to see if that would help, which didn't. It didn't work. But she said, yeah, you're just kind of doing other manometry. That's all there was. And I walked out of the hospital, started crying. I got to my car, called my husband, cried some more. He was traveling, so all he could really do was just kind of sympathize with me. And I was just trying to get my composure before I drove home. And the PA called and she said, I just talked to the doctor, and he's going to refer you to a surgeon. And she said his name, and it was the same person I had read in the article. And so I'm so relieved, so relieved. Finally, I'm moving on. This is what I've been trying to get to for, like, four months at this point. And their office called me a few days later to get some information on some, like, my gallbladder surgery and stuff. Just some. Some record information. And so I thought, okay, things are moving. And then after another week, I hadn't heard anything from them, so I called them and they said, well, we didn't get the images from your swallow study. And so we're just waiting for those. And I was like, can I please just make an appointment? I will find the images. I will come hell or eye water, I will get the images, but I really need an appointment. So this was the second week of January, and the appointment was made for February 27, and January 24 was just a really bad day. I just couldn't get water down. I. It was just a bad day. And I got a phone call from the surgeon's office, and I was so excited. I was like, I've been moved to the top of the Cancellation list. I thought that was it, and I answered, and it was just more questions about my records. And I was so dejected. I. I took my daughter to practice that night, and I just sat in my car and just cried because I did not see how I could survive like this to another. Another six weeks just to talk to him. And then I knew I had to do another manometry. And who knows long. How long until surgery. I just didn't know how long I could survive, and that was quite a low point. And around this time, I actually started seeing a therapist because I had so much anxiety, I couldn't sleep at night. And then also depression. Like, even though I couldn't sleep, I also didn't want to get out of bed. And I found a therapist who specialized in chronic illness and eating disorders, even though it wasn't an eating disorder. You know, my. My relationship with food was not normal at that point, for sure. And that was. That was very helpful.

[A]

How were you surviving, like? And it. It's also shocking to me why. Why was no one trying to find alternative ways to get you some sort of nourishment?

[C]

So I actually was offered a feeding tube the same day. I was told I need a second manometry, but I didn't feel like I could deal with the tube down my throat. After doing the ph studying, knowing how hard it was to get through that 24 hours, I just didn't think I could handle the feeding tube. But that one day that was so bad. At the end of the day, I think part of the reason I was crying is I knew, like, that it had come to that. And that just felt like defeat, especially as an athlete, as a runner, like, you just overcome hard things all the time, and I couldn't overcome this. And it felt like giving it to get a feeding tube, you thought, oh.

[A]

I can just push through it, right?

[C]

Yeah. So the next morning, I called my GI clinic to see if I could get another iv and at this point, the medical assistant and I were, like, tight, right? We're friends. And I asked her if the IV room had room for me that day, and she said, the doctor has a cancellation here in 30 minutes. And I was like, no, I just need an IV because I'm malnourished. I'm not thinking straight, right? And she's like, okay, I'm gonna go look at that schedule. And she. And in the meantime, I'm thinking, how stupid are you? Like, you've just got handed a chance to talk to the doctor. When she got back on I said, actually I'll be there and it's a 20 minute drive and I hadn't even showered yet. And I got there on time and it was so good because I had just worked with the PA and it was like the telephone game. He had to ask him questions, he had to tell her, she had to tell me, and then I had to ask a question. It just wasn't working. And so I was able to just sit down with him for half an hour and say, this is how bad things are. I had lost another four pounds in three weeks. And he saw that and he could just see that, you know, like my collarbones were sticking out. And this was the first time he had seen me for almost two years. And he said, yeah, you need surgery and you get done soon, but can't go into surgery like this, your protein storage depleted. And he said he could do a different feeding tube that would go right into my stomach so I didn't have to have the tube up my nose. And at that point it's like, whatever I have to do, I can't live like this. And then he called the surgeon's office and he got me moved to the top of their cancellations missed. So that was a Friday and I was able to finally talk to the surgeon on Tuesday. It happened that fast. And he was great. Surgeon was so great. He, he was good about managing my expectations, knowing this is not a cure, this is still a lifelong thing, but I can save your life, I can change your life, I can give you your quality of life back. And said, but yeah, you're going to have to have another manometry. And I asked him the same question, what is going to be different this time? Because I feel at this point I can do a second one, but I cannot do a third one. And he didn't really have an answer, but apparently he went and chewed on that question because by Friday of that week he had me scheduled for another endoscopy where they would place the probe under sedation with the camera, make sure it was in the right place. And it, it was like finally somebody that has the power to do something is really listening to me. And I actually, I sent him a thank you note of just what it meant to me after 12 years of being dismissed that in three days he finally made some, something happen that was going to help me. So I went in for, for that and, and the manometry was so much better without having to be awake for the placement. That's the worst part. And then they me suction So I didn't feel like I was going to drown. And they didn't make me lay flat. They let me be elevated a little bit. So it wasn't nearly as bad that second time. And I got. I got through that and two days later, finally got my diagnosis. I have type 2. So there's three types, and treatment depends on which type you have. So at that point, the surgeon called me and he said, what do you want to do? There's two surgeries. One is called a poem, and it's not as invasive. They don't have to cut into your abdomen at all, and they cut the muscle between your stomach and your esophagus, but it kind of leaves that hole open. And so then you're at risk for needing to be on PPIs the rest of your life. And I'm only in my 40s. I don't want to be on medication for the rest of my life. So the one I chose to do was called a Heller myotomy, where they. It's laparoscopic through your abdomen and they still cut the muscle, but then they do a second step where I don't really understand how it works, but they are able to use your stomach to kind of make a valve. It's called bundiplication. And that way you're less likely to need the omeprazole, which I have not needed. I don't have any issues with reflux. So I was thinking, how am I supposed to make this decision? I didn't go to medical school, but. But I felt good about. Yeah, I want. I'm. I'd rather do the harder upfront, the harder recovery for. For better results in the long run.

[A]

I'm with you. I would totally do the bigger surgery up front and not have to come back and do it again or have future issues because of it. I guess my question is, and I'm going all the way back to the beginning of this story, is was this related to postpartum or is it just came on because of the changes or how did do those two things connect at all?

[C]

So it's believed to be autoimmune and where autoimmune diseases just favor on rampant in my family, it seems to be just a really big genetic propensity toward those. And so most likely the pregnancy was what triggered it, even though it was not a hard pregnancy, since I'm kind of prone to that anyway, that's probably what caused it.

[B]

And I want to make a connection between one of our other guests. So I think you mentioned who had an esophageal story. But her condition was eosinophilic esophagitis. And in that case, it is like an allergy attack of the lining of the esophagus. Whereas in your case, it is a nerve problem that is affecting the muscles of the esophagus and the sphincter. So if we think of, like, what is achalasia? Dr. Nance's Med School 101, you can think of it like a highway and then there's a toll booth and all the cars. Normally the toll booth goes up and down, up and down, up and down, no problem. But in Akalasia, the toll booth is shut and then all the cars get backed up. And then over time, the highway becomes. No one can travel anything down the highway. And that's what happens in achalasia is there is a log jam at the sphincter. And in achalasia, it's the nervous system that is the problem. And so probably the there, who knows if it technically is related to your pregnancy, but you most likely develop some type of antibody response to the nerves that control your sphincter. Right. Of all places, it picked that place.

[A]

So how common is it for people to develop autoimmune disorders after pregnancy? Is this something that if you're pregnant or soon to give birth, that you should be thinking about or paying attention to?

[B]

I don't know any, you know, numbers in terms of propensity for people to develop autoimmune disorders after. After pregnancy. I mean, a lot of autoimmune disorders are genetic. So probably there is a genetic component and then the pregnancy is the inciting factor. Right. That's a whole shift in your hormones and your body composition, everything. So that may be. We've talked about this analogy before. It's kind of like the loaded gun and then that's what pulls the trigger. But, you know, other times it's exposure to a virus. Right. When we talked to Dr. Chevelle, she had a virus that induced a autoimmune like response. So here, you know, the timing is suspicious, right? She just had a baby, but she had a baby before and she didn't develop that autoimmune disorder. So it's something that I don't think you can say is a direct cause, but I think it's somehow related. It is a very, very vulnerable time in a woman's life. All right, so you end up having surgery. How was that process?

[C]

So this was about a month after the dilation, and in that month it had already gotten Back to the point where the morning we left for the hospital, I had to throw up all the saliva I had swallowed overnight before we could leave. So I was already back to that level of severity in just over a month. The surgery process was good, more painful than I anticipated, but they did good at keeping my pain under control. And then they did another barium swallow right after and to make sure there was no tears or anything. And that looked good. And I just remember that that night I had to spend the night in the hospital and my husband was going home and just being able to just breathe this collective sigh of relief. And we were just both crying and just. We made it. We're finally here. After the song wrote. And I hadn't really thought a lot about how it had impacted him. He's pretty stoic and hadn't really said a lot, but I think he just knew that I was falling apart. And so he, he was keeping it together. But to hear him tell the nurses that had never seen Nickel Asia before say, yeah, I've been watching my wife starve to death for the last five months. And to really feel what had done to him was hard. And later on feel what it had done to my mom. And it was. I was kind of. I had to be selfish, right, because I was just trying to survive. But once I was able to get out of that mode, then I really had to feel the impact it had on my whole family. But the surgery went well, post op went well, and now I live a fairly normal life. I'm not at any risk for malnutrition. There are certain foods I can't eat, like raw vegetables, rice. I can eat gluten free bread, which is good because we eat a lot of that at my house, but I can't eat wheat bread. But it's so far from where I was that it doesn't really even feel like a sacrifice. So I'm happy with where I'm at. My doctor's office told me that usually the surgery will last two to 10 years. I'm hoping since my initial progression was so slow that I'm closer to 10. And then they'll do, you know, either cut it again or they'll do dilations or about 5% of achalasia. Patients have to have their esophagus removed. And then the stomach kind of takes over as an esophagus. I don't really know how that works.

[A]

I have to ask you, what was it like eating that first meal when you knew you could keep the food down?

[C]

It was my daughter's 14th birthday and it was birthday cake. And at first I was really scared and I actually, along the way had met someone else who had achalasia through a mutual friend. And she texted me, she's like, did you eat yet? And I'm like, I just don't know if I can do this. I was, I was scared. And she said, maybe you just need to take one bite. And. And so I took one bite of birthday cake and it went down and it stayed down and it felt so good. And it was just. To have my life back was just amazing.

[A]

What a way to start it off to eat some cake.

[C]

Yeah, I hope it was.

[B]

Was it fun? Betty? What is it?

[C]

What was it? It was gluten free cake, but it was great. So it's still there, but it's not, it's not ruling my life anymore. It's not consuming me, not controlling my life. I've learned to live with it.

[A]

Well, I'd also say there's, there's. Once you learn to manage your condition and you're given tangible tools to improve your quality of life, it's much easier than when you're like walking around, like unsure what's happening to your body. So I think for a lot of people with chronic illness, managed conditions are fairly easy to live with. But it's just getting to that point where you know enough about what's affecting your body so you can get to that phase you're in right now where it's, it's a sometimes problem, but it's manageable.

[C]

Right. And knowing that if things go south again, I have a direct in with the surgeon now. I don't have to jump through hoops and have tests done wrong and all the second guessing, it will never get that bad again.

[A]

Yeah. And you've got contingency plans and backup protocol and all of those things. And really for a lot of people with chronic illness, that's the end goal. The end goal isn't to magically be 100% better, but to be able to live life as full as possible with the condition not completely limiting you because you just don't know how to live with it, you know?

[B]

So I want to say two things. Number one, your description of your malnourished state is unacceptable. We have tpn, we have other means of making sure that people who aren't able to digest get nutrients. So the fact that you were going months in a malnourished state, that should never happen. And for anyone who is listening and I, I know a Fair bit about this because I've done a lot of work with the Oli Foundation. They are for people who need feeding tubes or TPN for a variety of reasons. People may have stomach cancer, people may have Ehlers Danlos, which affects their intestines. Lots of different reasons, but the end goal for them is or the end treatment is feeding tube or tpn. So we have ways to get you the nourishment. If you are in the hospital and you have not eaten for more than like four days, you get on TPN day five, you're not allowed to not be digesting for more than a few days because then your body starts to break itself down and that's it. Sounds like exactly what was happening to you, right?

[C]

I was, I was down to 115 pounds when I had surgery and I'm five foot eight.

[B]

Yeah.

[A]

Oh my goodness.

[B]

So for all those people listening, there are methods of getting this nutrition. Sometimes they are temporary methods, sometimes they are more long term methods, but there are methods. The other thing I listen to, the world's expert on transplant for the digestive system, where they do intestinal transplant, they transplant part of the stomach, they cannot transplant the esophagus. Of all the organs, the esophagus, they have not figured out how to do that. And so it's just a little insight into how unique an organ it is that most people completely take for granted. Right. Like you just, you eat and then a couple of hours you poop. Right. That's kind of how it goes in an ideal situation. But it really starts with the esophagus is the first organ you have no control over. You're swallowing, that's voluntary. And then as soon as you swallow it goes down into this tube that you have no control what happens from then on. So it's just, it's so difficult. It is. Achalasia is very rare. But even, I mean, I, when I, you know, saw the show notes, I was like, I remember achalasia from when I was in med school and I was a gen surgery resident. It's not that uncommon.

[C]

I read that most GI clinics will see one case per year.

[B]

So yeah, that, that probably sounds about right. You know, it's not like a once in your career like it comes up.

[A]

So two questions that crossed my mind as you were talking, Dr. Nance. The first question is, if someone is in a state where they're not receiving proper nourishment, how can they advocate for themselves? Because I think that that's a tough position to be In. Right. Because it's. Listen, there's a lot of weird feelings and emotions around food in general for women, and then having to advocate for food becomes complicated. So. So what would you suggest someone should say if they're feeling like they're not able to get the nourishment they need to exist?

[B]

Well, I mean, one, there's objective measures, as in you're losing weight, there are some blood tests where you can see markers of, like, ketosis and your body is breaking down and protein loss. So those are things where if you feel like no one is taking that concern seriously, you ask, can you show me that I am getting the proper nutrition? And so they're probably going to do that type of workup. So I would say that's. That's the first thing. And then you can ask, because what my thought is that probably most doctors don't have experience prescribing tpn. Right.

[A]

What is tpn, by the way?

[B]

TPN is called. Called total parenteral nutrition. It's all of your nutrition in a bag and it goes through your veins, so it bypasses the entire digestive tract and goes straight through the veins to be absorbed by your muscles and your organs. So there are some people who have intestinal failure. They cannot absorb anything through their gut, so they have what's called a port in their chest. And there are hundreds of thousands of people who are on tpn, but an individual practitioner may not be experienced with it, so they may not even consider it an option because they're not the ones prescribing it. And usually it is there. There are doctors who specialize in intestinal failure. The OLI foundation is a wonderful resource O L E Y and I think again, more awareness through podcasts like this and people sharing their stories online. I'm going to look up something right now because it sounds so silly, but on TikTok, there is a syndrome called no burp syndrome. This syndrome, Lori, is kind of the opposite of your syndrome. So your syndrome is where the sphincter at the base of the esophagus is too tight, right? It won't relax versus this. No burp syndrome or retrograde cricopharyngeal dysfunction is when it's a dysfunction of the muscle on the top of the esophagus, so it doesn't allow air out. You can't burp. And so all these people, their whole life, they were having chest pain as well, and they could never burp.

[C]

And now they know why.

[B]

And now they know why. But their whole life they could never burp and could never figure it out. And now, I mean, I don't know if everyone who likes These posts on TikTok has no burp syndrome, but there's a lot more people than I would have expected.

[C]

And I would guess there's a lot of people battling achalasia that just like me, don't know that that's what they have. Correct, Correct.

[A]

We again, I feel like I keep like a little record here where I'm like, we always hear but like for most of these conditions, I think there are plenty of people out there that might also have them. We just are under diagnosing them. So knowledge is power. And honestly, hopefully shows like ours will help people get treatment for things that they've just been dealing with for 12 years. There's probably someone else out there in a very similar situation as you who's just dealing with it because that's what we've been taught to do as women is just to deal with it.

[B]

Yeah, I mean on, on this series alone we've had two esophagus cases. And I think it's just so helpful to hear a long term story. Right. Because no one presents at the end game. You know, for you it started with just pain in your chest. And as I said, when it's just the one symptom, it's a very broad differential. I was worried about you having an amniotic fluid embolism and dying. It could have been a lot of different things. So it's about keeping the diagnosis broad, having a lot of things on your radar. And then as the disease kind of progress and new symptoms arise, you narrow it and narrow it and narrow it and you're like, okay, I think this is what it is. And the hope is that you can get to that conclusion before the really troublesome symptoms start. Right. Like you, you were at a state of malnourishment. That's what it took.

[A]

I mean, candidly, I understand why people don't get diagnosed with this and lots of other conditions because what you've just explained is an exhausting process and it's a ton of work. And sometimes the thought process is. It's just easier to pretend it's not happening than to go through the tons of doctors of visits, constant blood draws, things shoved down your throat, and then trying to corral all those people to talk to each other to get to one universal diagnosis. And I think the more that we do this show, the more I realize that one of our biggest problems with the medical system now is just communication between specialties because it often feels like when we get to the bird's eye view, we get to the solution. Right. But it takes a lot of advocating for yourself to get there.

[C]

It's interesting too. So I'm on a Facebook group and I have really only seen one man get to the point that I got. And I've seen so many other women, so I don't know if they're not advocating for themselves better or if they're just not being heard. I don't know what the difference is, but I feel like there's definitely a longer diagnosis and treatment process for women. And I don't know why, but it seems unfair. Of course.

[B]

I mean, that's unfortunately the story of many of our guests. Right. They only get the diagnosis when they're near death or they're at the end game.

[C]

I also would hope that even if someone doesn't have this condition, that the things I learned, like getting a second opinion and advocating for yourself and if the doctor says come back, come back, I would hope those would apply to other things. Like I, I was on a trail run three weeks ago and I fell and broke my collarbone. And it was like all these medical decisions I had to make and I had to rely on people I didn't know for my well being and how much better I was able to handle that because of what I've been through and how much better my husband was advocating for me when I was on pain pills and couldn't think straight. So I think it's transcendent even if you don't have this condition. The things I've learned, I think other people can learn for whatever they're dealing with.

[B]

Well, Laura, thank you so much for sharing your story and absolutely the themes that you brought up are universal for people who have many different conditions and struggles. And I just, I feel the hurt in your voice as you yourself are recounting these 12 years. Right. Of just being dismissed when again, the answers were there all along. And so I really thank you for revisiting that with us and for sharing your story and yeah, just for being a real source of strength and inspiration for anyone else who, you know, is going to say, I'm not going to accept that no for an answer and I am not going to leave without having a plan.

[C]

Thank you. I felt really strongly that I needed to share this, that there's people that need to hear it. So I'm thankful to have a forum to do that.

[A]

So one thing that really stuck out to me in this episode was that Lori put her personal pain and her personal challenges to the side because of motherhood. And I just have so many friends that do this. Erin, you've been a mom. Have you ever done this?

[B]

Oh, I mean, of course. I mean, I remember after I had my daughter and I think I've talked before, I had a very large episiotomy and I just remember thinking, how in the world am I supposed to cross Park Avenue in one light? And I was like, I couldn't even imagine, but I was like, I have to take my daughter on a walk. Like this is what we're doing. And you just kind of push through.

[A]

And I think thinking about that push through and I just feel like I need to say it is that there is, there's value in taking care of yourself so that you can be at your best to help take care of others. And I know that is so much easier said than done. And I know that, that, like me, not as a mom, cannot ever fathom what it is like to have kids and to feel responsible for, for their health, their happiness. But I often feel like a lot of women ignore health problems when they have young kids because there's this expectation that their health is not as important as their child's well being. And I just want to make the argument that maybe that is thinking that needs to change and maybe it requires our people around us to be more supportive of the women with young children so that they can feel able to care for themselves at that level.

[B]

Yeah, I mean, it's the theory of put your own oxygen mask on first and listen. I think there is the ability to do both. And it is a prioritization thing for, for most people and for them, they're, they are prioritizing their children as they should be for the majority of things. But when it comes to your health, we have to put ourselves first because we're not going to be helpful if we aren't physically and mentally strong enough to do the job. And sometimes that requires asking for help. That is very hard to do for some people. Whether it's asking for more help from your partner, from your parents, your in laws, your siblings, your friends. I mean, I've said this before. I had to have one of my friends sleep over. You know, when my husband was traveling out of town, she would sleep over and I would bribe her with the use of my peloton in the morning.

[A]

Gotta love a peloton.

[B]

She would. And she would, you know, watch my daughter when I was leaving for 5am to do surgeries. So, yeah, we say this, you know, it's like a cliche, it takes a village, but it really does.

[A]

And I think one of the things that's made me realize is that for my friends who are pregnant or recently given birth, that, that maybe what I can do is offer a little bit more. So there's less of a burden to ask, right? To say, like, hey, if you ever need someone to babysit for a little bit, so you guys, you can go to the doctor or whatever, just let me know. And I think that there are opportunities for us who are not mothers to support mothers by doing things like that.

[B]

Yeah, absolutely. You know, and I think another one of the really heartbreaking parts of this story was just the, the mental toll for how long a misdiagnosis takes. And we're talking about over a decade in this case. And something that drove her to experience anxiety and depression. And we talked about this last episode about how, yes, anxiety and depression can manifest in physical symptoms, but I think it's really a. Another loop where the physical symptoms are manifesting as mental health crisis.

[A]

She was starving. How are you supposed to be sane when you are literally starving? Your body doesn't have the right nutrients to run like a solid machine. Like, you know, what it makes me think of is like, if you don't get your oil changed and your car just goes completely haywire, it's not that your car is bad, it's that it doesn't have the essential thing. It needs to run properly. Properly. Right. So I can't believe that she went that long and that they were okay with her going that long, having such little nourishment.

[C]

Yes.

[B]

And then even, you know, the very beginning symptoms of the chest pain. I know she was probably down, downplaying it, but chest pain, especially in the postpartum period. But honestly, any chest pain is worse than a discussion with your physician that is just, you know, worst case scenario, your heart rate is compromised in some way. Best case scenario, yeah, it's a blip, but let the doctor be the one to tell you it's a blip.

[A]

Yeah, I would say that. One thing I've learned on my medical journey and it's not been, the easiest thing to learn is if you clock it, you should share it. So if something happens and it feels out of the ordinary or weird, even if you think maybe, maybe this isn't important, it probably is. Because that little detail could be the difference between a 12 year diagnosis and a one year diagnosis. And I'm not saying that if had she shared that information, maybe to the full extent she felt it, things would have changed. But I would say in a lot of instances, knowledge is power, as we've said before, and giving your doctor more information will only help you get, you know, to an answer sooner.

[C]

Yep.

[B]

Well, thanks for sticking around with us and we'll see you next week.

[A]

See you next week guys. The Medical Detectives is a Soft Skills media production produced by Molly Biskar Sound designed by Shane Draus if you have a medical story you'd like to see featured on the Medical Detectives, please email it to stories themedical detectives podcast.com the.

[D]

Information provided on the Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare provider.