HALEY JAMES

The Mayo Clinic Diaries: Part 4 Days 5-9

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The Mayo Clinic Diaries: Part 4 Days 5-9

Welcome to part 4 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 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

The Mayo Clinic Diaries Part 6: Days 14-16

The Mayo Clinic Diaries Part 7: A Diagnosis & Reflection

Day 5 & 6

WEEKEND

EXPLORED ROCHESTER

  • it’s our first official weekend here after a week of appointments, tests, and insurance battles! We were more than ready to get out and explore the city!
  • It is BEAUTIFUL!! The leaves are all bright orange and it has the most PERFECT fall vibes and aesthetic!
  • We spent the day just walking around and taking it all in and seeing what was in the city outside of the hospital – and to be honest, not much haha. I hate to say it, but the main attraction IS the hospital. There really aren’t a lot of activities you can do here. I tried looking up events we could go to or popular shopping places, really anything, but we couldn’t find anything. 
  • If you are going to Mayo, try to do some research beforehand and see if you can find any fun things to do on the weekends because I wish I had planned that part a little more – obviously, we had no idea if we would have time or how long we would be here so I didn’t. But if you know you are coming, try to look at things you can do on the weekends to get your mind off everything at Mayo – trust me – you will need a break!
  • We both went to church this morning and that was a fun experience! She went to one and I went to another and I even made a few friends my age that work at the hospital so that was fun! It was nice to get out and talk to other people that, you know, aren’t telling me all the things that could be wrong with me haha. But honestly, it was nice to get regrounded and also see how they do church over here. 
  • We walked around a bit more this morning and then made it back to our hotel to dive back into insurance and research. Both heavy things we didn’t want to do, but knew we had to in order  to be prepared for this upcoming week

Day 7

APPOINTMENT WITH DR. CHAREONTHAITAWEE

CARDIOLOGIST

REVIEW EKG & HOLTER

  • Dr. Chareonthaitawee was so kind and helpful!
  • She said the EKG was abnormal, but taking into consideration POTS and Dysautonomia it’s fine.
  • The Holter Monitor results showed an abnormality as well, but taking into consideration the POTS and Dysautonomia it’s fine.
  • Sudden chest pain and all other heart issues are most likely from the POTS trying to adjust the heart rate so quickly.
  • Overall: Feeling really happy and relieved to know that all the weird heart stuff going on is explained away with the POTS diagnosis. Appreciated her taking her time to explain to me exactly why certain things are happening the way they are. She was great and I highly recommend her to any other POTS patients!

APPOINTMENT WITH DR. MCKEON

NEURO-IMMUNOLOGIST

TOUCH BASE

  • Dr. Mckeon was so encouraging and kind!
  • He started the whole appointment off by asking me what I was thinking it could be and what tests I wanted to run. I have never had a doctor ask me what I wanted to be tested for, while also being so intentional about including me in the process. Normally as the patient you have to kind of force yourself into the conversation, but he willingly included me and it meant so much!
  • We decided to do all the testing that we felt like we hadn’t done yet like an MRI, some more blood tests, an EMG and more.
  • He mentioned that after reviewing the tests, he had theories but didn’t want to say anything until we had done more testing.
  • Overall: I am so grateful I could cry. He is such an incredible doctor and I am just so so happy he is the one heading up my care here.

INSURANCE ISSUES

  • Currently, we are waiting to find out if my insurance was extended or not. Since I turned 26 earlier this month (technically on the 31st), I should lose my parents’ insurance coverage (which would be awful and terrifying, as without it, I have no coverage).
  • My doctors and I wrote a 30-page letter asking them to keep me on as a disabled child. So far, they lost the letter 3x, AND we are only a few days from the 31st, at which point if not approved, I will lose insurance coverage immediately – halting anything I can do at Mayo. So yeah, no pressure.

Day 8

MORE BLOOD TESTS

TESTING FOR MORE RARE CONDITIONS

  • And we’re back for more bloodwork. They want to dive deeper and see if I come up positive for any rare conditions they can catch on labs. 
  • It’s pretty cool how it works in that they take your labs and put them on this conveyer belt thing and from my understanding, they process the labs right there so you can get results back as quickly as possible. 
  • Waiting in the waiting room is hard in that you see just how many people are here – all desperate for answers, treatment, help, anything. You’ve got people from all walks of life, ages etc. and it’s just sad to see so many people hurting. 

ELECTROMYEOGRAPHY (EMG) TESTING

NEUROPATHY TESTING

  • Let me tell you – this was probably one of the top painful tests – only second to the esophageal manometry.
  • There was a neurologist that performed the test and when she went to start it, she tried to get reflexes…and couldn’t…so that was weird. She said she would message Dr. Mckeon to let him know as well and put it in my chart.

Day 9

CHECKER FOR MRI

DOUBLE SESSION BRAIN & SPINE

  • The MRI test was booked out so they had me on standby as a checker. We knew it was really important for me to get an appointment today because we couldn’t really move forward until we got the results of this scan. The problem was that they needed an extra long session, roughly 2 hours, and that was hard for them to find a slot for.
  • I’ve had MRIs before, but this one was SO long and I just laid there thinking about all the worst things they could be finding. I think anyone would; after 2 hours of laying there, thinking the worst and being so uncomfortable, I couldn’t do it anymore. I began to hyperventilate, feeling trapped not just in the machine, but also in my mind, my body, and in this reality that I never anticipated.
  • They took me out and then put me back in once I could catch my breath and stop crying. I went for another 15 minutes and then they were done. I was so exhausted mentally that I just went back to the hotel in silence, unable to talk about every possible reality my mind had had to sit with during those 2 painful hours. 
  • At least it’s done.

G.I. CHECK-IN & UPDATE (OR LACK THEREOF)

  • Waiting to see if Dr. Fox left any notes… she never got back to us on what GI testing she wanted done, and tomorrow is our last approved insurance day…
  • We have been checking in with her office every day, multiple times a day, and every time they say she still has not left a note.
  • I cannot stress enough how hard of an experience it has been working with her.

INSURANCE ISSUES

  • So tomorrow is our last approved day to be at Mayo Clinic AND my last approved day of coverage on my parents’ insurance – so not only will I be losing coverage for Mayo, but also for everything else too. 
  • It’s been something we have been fighting for for the last few months and after they lost our papers more times than I can count, we are now in this position of not having any answers and having to also ask for more time at Mayo. 
  • The odds of getting not just one, but both of these approved is slim to none if I’m honest. I know this is going to be a battle and lots of phone calls and lots of tears, but we have no choice – we are here and are so so so close – so if you pray – prayers would be appreciated for those two things to, by some miracle, get approved.

So close, but so far

Going into what was supposed to be our last day, feeling like we are so close and yet so far from answers is heartbreaking. It’s taken an emotional toll and I’m doing my best to cope with it, but it is hard. 

As always – thanks 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 California-based purpose-driven, multi-passionate entrepreneur, chronic illness & rare disease advocate, speaker, podcaster, designer, YouTuber, content creator and really, at my core, just a woman who wants to love & help support people in creating lives they love!

How did I get here? Well, after getting really sick in my early 20’s and spending years fighting for my life, I realized I not only was fighting to live, but to live a life I truly loved! 

Now I’m on a journey to creating that life for myself and want to bring you along so you can create a life you love too! I hope you’ll join me!

Hi! I'm Haley James!

I’m a California-based purpose-driven, multi-passionate entrepreneur, chronic illness & rare disease advocate, speaker, podcaster, designer, YouTuber, content creator and really, at my core, just a woman who wants to love & help support people in creating lives they love!

How did I get here? Well, after getting really sick in my early 20’s and spending years fighting for my life, I realized I not only was fighting to live, but to live a life I truly loved! 

Now I’m on a journey to creating that life for myself and want to bring you along so you can create a life you love too! I hope you’ll join me!

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I love connecting with people in this community! It’s my favorite thing that I get to do and this is one of the places I love to do it!

I only ever want to send you things I truly believe in my heart will serve you, support you, equip you, empower you and make you feel seen, heard & loved! Which to me means 0% spam & 100% all good things!

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