The Mayo Clinic Diaries: Part 5 Days 10-13
Welcome to part 5 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
Day 10
APPOINTMENT WITH DR. MCKEON
NEURO-IMMUNOLOGIST
FOLLOW-UP
- This was supposed to be my final appointment at Mayo, but it’s not.
- Dr. Fox messed it all up; she never got back to me or Dr. Mckeon on what she wanted done until we were in our final appointment, during which she requested 3 different tests to be done. Without those tests, she would not give Dr. Mckeon anything to go off of. Therefore, he said he can’t diagnose me because they have to work as a team. Even though it’s frustrating, she is just telling us this now.
- The problem is that today marks the last day of insurance coverage under my parents’ care. We’ve never received any response regarding our petition to keep me on their insurance due to disability. Therefore, as of tonight, I will be completely without coverage.
- The other problem is that when insurance approved me to go to Mayo, it was under a strict timeline which ended on the 31st.
- In order for me to stay and do more testing, BOTH of those things have to be approved to be longer. It took weeks to even get what I did approved, so the odds of this are just extremely low.
- Dr.Mckeon complained to Mayo administration, but they will probably not do anything to fix it.
- He says he can’t even give us a guess of what he thinks it is because he has to have her input. He is rushing to try to get the testing done today, if possible, but some of them can’t be done on the same day and all of them are big tests.
- He wants us to go be a checker at the endoscopy suite and see if they can take me today even though I had not been fasting.
- Overall: feeling really just sad and angry that Dr.Fox has just completely made this Mayo trip a nightmare on so many different fronts. Dr.Mckeon said he will meet with me tomorrow, insurance or not.
ENDOSCOPY
(RESCHEDULED)
- So I got into the endoscopy clinic with an appointment, got all the papers signed, changed into the gown, got the IV in my hand anddddd then they started debating whether or not they should do it.
- They argued that they didn’t think it was safe to do the procedure since I had not fully fasted (even though I hadn’t had anything by tube or mouth for hours). They said that given my conditions, the odds of me aspirating are higher and they did not feel comfortable doing it.
- Honestly – feeling a HUGE relief not doing the procedure today. It all felt too fast, like we were going to miss something, and the risk seemed too high. Also, the surgeon was just not nice at all so just all in all a good decision to reschedule for tomorrow afternoon – even though I will most likely have no insurance or coverage since my insurance expires tomorrow… If this is the case then we are going to have to cancel and figure out what we are going to do.
INSURANCE
- Came back to the hotel feeling relieved that I didn’t have to rush into the procedure, but also feeling at a total loss. Now what?
- Insurance still hasn’t gotten back to us on whether my coverage under my parents has been approved or not. Even if it was, our coverage approval for Mayo was only until today – the 31st. This was supposed to be our last day here and we are far from done. I’m not sure what we are going to do.
- We spent the entire rest of the day calling and trying to get everything approved and cleared so I could continue to move forward with my journey here at Mayo – but it’s not looking good.
HALLOWEEN
- Also random, but it’s Halloween and I keep telling my mom – it’s probably my best costume and scariest Halloween yet!
- Chronically ill girl with no health insurance – stuck across the country at a hospital with the people that can help her – but no way to get it covered. Honestly – can’t think of a scarier Halloween for me.
- Rochester gives cool Halloweentown vibes honestly. The movie theater, the orange leaves everywhere, the pumpkin contests – it’s really cute, but I wish more than anything I was just home with my family.
HONEST CHECK IN
- It’s midnight here and while I could leave this part out, post some nice pics about Halloween and make some jokes – I have to be honest. This is my reality. This is how I feel.
- Broken, angry, upset, frustrated, heartbroken, tired, sad, hopeless. Honestly – D.O.N.E.
- I want to scream and hit the wall and just cry. I feel like I am just here begging, screaming, crying out for someone to help me save my life.
- I know this is not optimistic, not uplifting, not positive – but it is real. I just wanted to share this so that if you are thinking about going to Mayo Clinic – you know the reality.
- Doing medical tests or having multiple doctor’s appointments every single day wears on you physically, emotionally, and mentally. It is a lot, and it is a piece of my Mayo journey that I want to make sure I convey clearly. Anyone deciding to go to Mayo and reading this should know the reality of how hard it is.
- When you are desperate for answers, you will pretty much endure anything and that is how I felt going into this, but I didn’t realize just how hard it would honestly be.
Day 11
INSURANCE APPROVAL?!
- We woke up this morning and began calling insurance – trying everything to try to get it all approved and in order before my endoscopy and after a few hours – I don’t know how this happened. God is so good. Somehow, someway at the very last minute – insurance APPROVED ME TO STAY ON MY PARENTS INSURANCE FOR ANOTHER YEAR AND TO STAY AT MAYO LONGER!!! THERE ARE NO WORDS – ONLY HAPPY TEARS!!! GOING OFF TO AN ENDOSCOPY AND TUBE CHANGE NOW!
ENDOSCOPY
LOOKING FOR EOSINOPHILIC ESOPHAGITIS, TAKING TUBE OUT AND PUTTING NEW ONE IN
- Endoscopy went well and they definitely did not see EoE! and everything looked normal to them (which it should and that’s good, meaning that everything not working well is at least still functional)
- Tube change also went fine! Super sore, but it went well and they kept my tube at the length I wanted and did it the way I requested (the other surgeon said it was “impossible” for him to make it the length I wanted, while this surgeon had absolutely no problem doing it that way!)
IT SNOWED
- We were in such a rush this morning with insurance and the endoscopy that I forgot to mention that it SNOWED!!!! Right on November 1st! It was perfectly timed! Even though it is SO cold – it is also SO beautiful and I am just trying to take in the beauty of it.
- I am in such a different place from even this morning, mentally knowing we have insurance coverage, knowing I was right and do not have EoE which means Dr. Fox has to actually listen to me now, and that the week is over and we get two days of a break.
- It is so needed and I am so ready!
Day 12 & 13
WEEKEND
EXPLORING ROCHESTER
- After such a whirlwind of a week, and especially the last two days, Mom and I are totally tapped.
- We both knew that we had to get outside, even though it was only 25 degrees. We needed to get out of the hotel, out of the hospital that it’s literally connected to, and just go do something else outside of having to think about my spiraling health.
- Since it had snowed, we decided to walk around Rochester and enjoy how beautiful it looked!
- We also went to the other hospital location and scoped it out in order to be prepared for next week’s appointments.
- After that, we went to the grocery store to get more groceries for Mom to be able to eat as we had been relying on the hospital cafeteria and the restaurant in the hotel.
- It honestly was such a nice break for us and we tried to not talk about possible diagnoses, or do any research, nor talk about insurance or anything related to that because we both just truly needed a breather and I am so glad we got that!
- After spending a day walking around, enjoying the snow, and scoping out where our next appointment will be so we won’t be late, we decided to spend the day in our hotel: resting for the week ahead, changing our flights, and, of course, doing lots of research.
- I share the point about doing research because it’s something that I think has helped me the most in my medical journey. It has continued to help me here, as I am able to have conversations about their theories, tests, what they are looking for, etc. This helps me to not be caught off guard and, for the most part, to know what they are talking about. Then, I can make better decisions in the moment, which allows me to advocate for myself best.
- It’s not easy. It’s heavy, hard, scary and overwhelming, but someone has to do it and I have found that for me, it actually helps me mentally prepare for what could be coming. Today, I spent the day digging into this really new concept of Autoimmune GI Dysmotility (A.G.I.D.) as well as a variety of other possibilities that could be on the table.
- Reading about the possible diseases you could have, what the progression and treatments (if there are any) all look like is rough and exhausting. So, we decided that we needed a break. We have spent so much time focused on appointments, tests, research, insurance, etc. To recharge, we booked some cheap massages that were down the street.
- Honestly, not the best of massages, but so so so needed and really did help get us in a better place.
Heading Into The Week
Going back into a week of Mayo, I have no idea what to expect. I’m hoping this is our last week and that we can just move forward and get answers quickly. We’ve been here for a while and it’s starting to wear on us in every way. I could not be more grateful for the opportunity and would never take it for granted, but being real, it’s been more exhausting than I could have anticipated. I know we are getting closer, I just hope they can figure it out.
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 purpose-driven entrepreneur, non-profit founder, chronic illness, activist & advocate, podcaster, public speaker and healthy home interior designer!
BUT – that’s not really who I am, it’s what I do.
While that gives you some context, it doesn’t show you my heart or story or how I can help you – and that’s WAY more important – so let me tell you!
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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THESE EMAILS I SEND – I PROMISE – FEEL LIKE LETTERS FROM A FRIEND
Come Be Part Of The Bloom!
What is The Bloom? The Bloom is my personal letter to you, dedicated to supporting your growth and flourishing in all aspects of life – from your health, well-being and entrepreneurial pursuits to overcoming obstacles, discovering passions, stepping into purpose and finding avenues for positive impact – The Bloom is all about helping you create a life you truly love – whatever that looks like for you!
I like to think of The Bloom newsletter as the water, soil, or sunlight I hope to be able to give you to help you grow and bloom in your own life! That’s why as a member of The Bloom community, you’ll get heartfelt personal letters from me sharing stories, resources, tools, inspiration and support to help you on your personal growth journey.
THANKS FOR BEING HERE – I LOVE YOU, I MEAN IT ♡
THANKS FOR BEING HERE – I LOVE YOU, I MEAN IT ♡