The Mayo Clinic Diaries: Part 6 Days 14-16
Welcome to part 6 of “The Mayo Clinic Diaries” series, a collection of 7 posts documenting my time at the Mayo Clinic. The idea is to share my experience with others who might be considering Mayo as a part of their medical journey. All the thoughts and feelings I’ve expressed were in real-time, straight from the heart. I even named the physicians I interacted with and shared my thoughts on their approach, in the hope that it would help you make a more informed decision on whether to see them or not.
Just to be clear and cover myself here haha, what I’ve shared is my own experience, and it doesn’t mean that it will be the same for you. Hearing from others who’ve been in similar situations has helped me and I hope that by sharing my experience, it might help you in some way.
Here you’ll find all the posts linked so you can read through the series 🙂
The Mayo Clinic Diaries Part 1: Application & Acceptance
The Mayo Clinic Diaries Part 2: Travel & Lodging
The Mayo Clinic Diaries Part 3: Days 1-4
The Mayo Clinic Diaries Part 4: Days 5-9
The Mayo Clinic Diaries Part 5: Days 9-13
Day 14
FLUOROSCOPY
BARIUM SWALLOW STUDY
- Appreciating so much more now, being allowed to come back here fully covered by insurance! I don’t take this for granted in the slightest – truly. There are no words to convey the relief and hope I have, knowing I can keep moving forward here until we get an answer.
- Today is barium swallow day to test for esophageal dysmotility.
- I had to ask if the barium was gluten-free because 3 weeks ago, I did the same test at Stanford and asked, and they said it was gluten-free. My GI tract determined that was a lie. I called the manufacturer of Stanford’s barium, and sure enough, it had gluten in it!
- When I asked them today, they said they didn’t know but would find out. The next thing I know there’s a nurse with 6 bottles of barium mixtures in her hands with 3 nurses, a doctor, and a radiologist at my door asking me to tell them if it is gluten free or not. The ingredients used loophole terms such as “natural flavoring” so I brought them all in and showed them how to call the manufacturer.
- Turns out the Mayo barium is gluten free! And now they all know how to check! It’s crazy how even in a place like Mayo, there is little understanding about gluten and celiac disease.
- So this is just my PSA to always check and advocate for yourself!
Day 15
APPOINTMENT WITH DR. FOX
GASTROENTEROLOGIST
FOLLOW-UP
- Dr. Fox said all of their testing confirmed what Stanford had already confirmed. This means that she wants to run more testing now (that Stanford also has already done extensively).
- She has just now begun taking my case seriously seeing that none of my diagnoses were made up (DUH).
- I am beyond frustrated with her and overwhelmed at the thought of having to be here two more weeks. Physically, I haven’t been able to be on my feeding tube feeds because you never know which days you will have testing that needs to be fasted for, so by default, I have not been on feeds. I have just had sorbet and I don’t know how much longer my body can take that.
- Mentally & emotionally, I can’t do it anymore. I am stretched too thin. It feels like it’s been months. It’s been too much. I can’t take much more. I want to go home.
- BUT I am not leaving without answers. I really need to think about this test she is asking me to do (which I’ve already done) as I feel like I cannot do it at this point. Whatever I have has progressed too much to even do this test, which would require me to eat a sandwich, drink a huge bottle of water, eat snacks etc.
Day 16
A CHANGE OF PLANS
So today I was supposed to have a GI test to confirm diagnoses that I had already received (gastroparesis, chronic intestinal pseudo-obstruction disorder, intestinal dysmotility, and esophageal dysmotility), even though I had already received these official diagnoses via extensive gold standard testing at Stanford.
The reason Dr. Fox was trying to force this test was because Mayo Clinic does not accept outside test results and therefore wanted to do one that was similar.
The problem with this was that since I had been tested at Stanford, my condition had progressed, and I was no longer able to swallow water without feeling like I was choking on it. I had a feeding tube for months that I was already barely able to tolerate – and now she wanted me to have an entire meal, snacks, and water. THEN, lay on a bed totally awake and alert for 8 hours with a tube down my throat, into my stomach and intestines while they tested for the same thing I had already been tested for months prior.
Not only did this test feel impossible, but it also felt extremely unnecessary as I’ve already done gold standard testing at a prestigious, well-renowned research hospital at Stanford which actually showed MORE information than what we would gain from this test alone.
If I did the test, and at any point had to throw up, the test would be void and I would have to do it again another day. If I chose not to do the test at all, she wouldn’t accept the diagnoses from Stanford, and would say there was nothing wrong. I would then be forced to leave here with no diagnosis.
I cried and cried and cried over this whole experience. I felt like Dr. Fox was not listening to me (and not looking into the latest studies that I had highlighted and given her). She did not consider that these test results would not actually help me in any way; they would just cause me more physical, mental, and emotional pain when I was already at the end of my rope from undergoing medical testing for the last 2 weeks. I deeply struggled with this decision for the entire day and night, wondering what I should do.
While I was scrolling through Instagram at 2:30 in the morning trying to get my mind off of the decision on the test that was only 6 hours away, I came across this post by Bob Goff and the tears just flowed out. After I read this, I knew my answer immediately.
I knew enough. We knew enough. I’m not doing it.
APPOINTMENT WITH DR. MCKEON
NEURO-IMMUNOLOGIST
FINAL MEETING
- I messaged Dr.Mckeon to see what his thoughts were. He said to come in for an appointment and that he would work with Stanford to come to a diagnosis as Dr.Fox was making it very difficult and he felt we had enough information from valid testing.
- Dr.Mckeon was so gracious and completely understood the frustration of the current situation with Dr.Fox. Seeing that the last test I had left was something that I had already done a version of at the specialty clinic at Stanford, he was willing to move forward as he agreed there was truly no reason to redo it when it wouldn’t show us any more information than what we already had. (SUCH A BLESSING)
- He shared his theories and what he had been zeroing in on. Based on everything he heard and saw from Stanford and everything they found at Mayo, he came to a conclusive diagnosis. He said this was the one he was theorizing it could be from the get go because all the weird cases like mine ended up being that. I am going to take a beat to just research, process, and come to grips with this diagnosis before sharing it here – I don’t mean to leave things on a cliffhanger – but I also want to be mindful of giving myself time to process it too.
- Overall: Tears. Happy tears on finally having an answer and a possible idea of a path forward. Thank You Dr.Mckeon.
Wrapping It Up
It’s been a long week, and I don’t really have the right words to sum up how I’m feeling. So for now, I’ll leave you with this: thank you for being here, thank you for supporting me, and thank you for your patience as I take a moment to get acquainted with and process this new diagnosis and what it means for me before sharing it here.
I hope to have the next post up in a few days with more info on the diagnosis that was made and my overall thoughts on my Mayo Clinic experience.
As always – thank you for being here.
xx I love you, I mean it
DISCLAIMER
Please note that all content on this page, website, and any affiliated resources is for informational and educational purposes only. It is not intended to provide medical advice or to take the place of treatment from a physician. NO information on this page or website should be used to diagnose, treat, prevent, or cure any disease or condition. Additionally, please be aware that some of the links on this page may be affiliate links, from which I may receive a small commission if you make a purchase through those links.
Hi! I'm Haley James!
I’m a purpose-driven entrepreneur, non-profit founder, chronic illness, activist & advocate, podcaster, public speaker and healthy home interior designer!
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After being sick for 10 years with over 20 chronic & rare conditions, needing a feeding tube & weekly infusions to survive, I learned how short & fragile life really, really is. As I began to heal, I realized what I really wanted to do was to create a life I truly loved every little bit of & I knew that for me, that meant finding a way to take my pain and turn it into passion, purpose & positive impact so I could pay forward all the love, support, and help that others gave me in my time of need.
So that’s what I try to do here: share my story and journey to help inspire, empower, and equip others to turn their struggles into their strengths and create a life they truly love—filled with passion, purpose, and positive impact—while I work to do the same! I hope you’ll join me!
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