Welcome to part 1 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
What Is Mayo Clinic?
“Mayo Clinic is a not-for-profit academic medical center that provides comprehensive medical care to patients from around the world. Founded in 1864, Mayo Clinic has grown into one of the world’s leading medical institutions, with campuses in Minnesota, Arizona, and Florida. Mayo Clinic is known for its innovative medical research, high-quality patient care, and patient-centered approach to medicine.“
It’s an American not-for-profit organization and academic medical center based in Rochester, Minnesota. They’re really focused on integrated clinical practice, education, and research, which means they not only treat patients, but also train healthcare professionals and conduct research to improve healthcare outcomes.
One of the things that Mayo Clinic is really known for is their expertise in diagnosing and treating difficult or rare medical conditions. People come to Mayo from all over the world because they have a reputation for being able to figure out what’s wrong when other medical facilities can’t. But because they do so much research and have so many patients, it’s really difficult to actually get accepted as a patient there. They have a pretty strict screening process and a long waiting list – usually a couple of months at least. They’re really committed to helping people who don’t have anywhere else to turn, which is why they want patients to try their local institutions first before turning to Mayo.
Why I am going to Mayo Clinic
“The Mayo Clinic is a renowned medical institution that primarily serves individuals with complex and challenging medical conditions. Patients seeking diagnosis and treatment for rare diseases, cancer, cardiovascular issues, neurological disorders, organ transplants, gastrointestinal problems, orthopedic conditions, endocrine disorders, and rare genetic conditions often choose Mayo Clinic for its specialized expertise. The clinic’s multidisciplinary approach, cutting-edge treatments, and reputation for high-quality care make it a preferred choice for cases that require advanced medical attention.”
So in two weeks, I’ll be heading over to Mayo Clinic in Rochester Minnesota for seven days. I’m really hoping that they can finally help me figure out what’s going on with my health. I’ve been to Stanford and they’ve done some tests, but they can’t pinpoint the exact autoimmune disease in my brain. They think it might be autoimmune encephalitis, but I’m not entirely convinced.
The thing is, without knowing the exact disease, we can’t really target the right treatment. And that means we could just be guessing and trying things out until something works. Plus, insurance won’t cover anything beyond a high dose of prednisone without a specific diagnosis.
If I were to go with Stanford’s approach, I’d need to have permanent feeding tube surgery and a port put in as soon as possible, and then start on prednisone and other medications a month later. But that’s a pretty major procedure, and I don’t want to go through with it unless I know for sure that it’s the only option.
That’s where Mayo Clinic comes in. They’re really good at taking on difficult cases and getting to the root of the problem. And with their integrated clinical practice, education, and research, I’m hoping they’ll be able to figure out what’s going on with me and give me the best chance at recovery.
Applying to Mayo Clinic
“To apply to Mayo Clinic as a patient, you can start by visiting their website and selecting the location that’s most convenient for you. From there, you can request an appointment online or call their appointment line. You will likely need to provide information about your medical history and insurance, and you may need to provide medical records or other documentation before your appointment.“
So, after a lot of thinking (and a few breakdowns, if we’re being honest), I decided that there had to be another way. I was determined to find someone who could help me, and that’s when I remembered hearing about other women my age who had gone to Mayo Clinic and received the answers they needed. I quickly searched for Mayo Clinic online and applied for an appointment. I also applied to other well-known medical centers like Johns Hopkins and Cleveland Clinic, just to cover all my bases.
To my surprise, the very next morning, I received a call from Mayo Clinic and spent an hour doing a potential intake interview over the phone. They explained to me that they only accept the most difficult and complicated cases that other places can’t solve. They don’t usually take on common cases, and the competition to get in is fierce. Even if you are lucky enough to get accepted, you could be waiting for months before your appointment.
I remember telling my parents that even if I didn’t get accepted, I would still drive to Mayo Clinic and beg them to take a look at my case because I was so desperate for answers.
How I got accepted
“It’s important to note that Mayo Clinic is a highly respected medical institution, and they receive a large number of requests for appointments, so it may take some time to get scheduled with the appropriate physician or specialist.“
Luckily, I didn’t have to! I got accepted three days later – the day before my birthday. Let me tell you – it was the best birthday gift I have ever received. They had an appointment for me two weeks out – which is incredibly soon. My neurologist said he would support me going to Mayo, but only if it was within the next month and a half, anything longer he did not feel comfortable waiting for. I made sure to express this during my interview and on my intake paperwork, and that played a large role in me getting an appointment so soon. We scheduled our flights and packed our bags. We leave in the morning.
Insurance, of course, has been an absolute nightmare – but after fighting with them for eight hours a day, every day, for the last week, we finally got it covered! This is a huge blessing, and I am incredibly grateful!
How It works
So the way it works and is set up is pretty unique and amazing honestly.
To start with, they schedule you with your main doctor who is kind of like a quarterback – they call the shots on which specialties you need to be seen in and with which doctors. They determine what tests they want based on all the info being given to them from other specialists and at the end of your time they are the one to diagnose you.
Mayo has a scheduling team who makes you a schedule of appointments. Based on your appointments. they may add more or change it up so you are constantly going to appointments or getting in to see a specialist. If a test or specialist does not have an appointment available, they will have you go up anyway to be a “checker”. Essentially you are on standby for an opening and they almost always find a way to get you in (usually pretty quickly from what I have been told).
The schedulers plan it out for you to see everyone the doctors need you to see, and get all your testing done within a couple days. This is a huge contrast to how it is usually done, where normally it would take weeks to see even one of those docs, or months to get one of those tests. Then, the doctors work as a team to figure out your case.
From what I can tell, it’s super efficient as they really work to get you in to see specialists and get tested so much quicker than it would be if you were to try to do it with your regular doctor. It honestly sounds amazing!
The way I explain it to people is that Mayo Clinic is kind of like Disneyland, with fast passes for tests and some of the best doctors in the country.
The hope is that by the end of your time there – they can provide you with a diagnosis or a strong direction towards one.
Here We go!
I want to be really intentional about documenting and sharing my experience here for you all, so that if you’re thinking about going to Mayo, you can get an idea of what it’s like. Here is where I will share what I have learned, as well as any tips or tricks I come across, etc.
Hopefully, you won’t have to go to Mayo, but if you do, I hope that by documenting and sharing my experience it will make it easier for you on your journey.
As for me, whatever is coming with Mayo, this signifies a next step in my journey and I am ready.
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.
