Navigating the Mayo Clinic

Just like consulting a new bride is not the best person to go to for wedding planning advice, a new patient is probably not the best person to advise on how to navigate the Mayo Clinic. But I’magonnadoit anyways!

Expansive receiving area inside the Mayo Clinic and Gondo Building

Two weeks ago I was exceedingly stressed with the immense planning required for me to make an extended medical trip let alone to the enigma of the Mayo Clinic! It was all I could do while battling a serious illness to collate a pile of medical records into a tabulated notebook, make hotel reservations at a place that could accommodate chemical sensitivities AND a dog, make Clinic appointments, complete the pre-registration and questionnaire requirements of the Mayo Clinic App, clarify insurance issues, grocery shop for my special diet, oh and pack my stuff! Each person will have unique preparation tasks to consider when making the decision to go ahead and make your way to the Mayo Clinic. Here is my brain dump from our first trip in February of 2019.

Before You Go

Plan on hand-carrying any related medical records with you to each new consultation/appointment. (We overheard patients complaining that their faxed records were never received by the right place at the right time.) Condense and organize your paperwork so you can retrieve pertinent test results, CT/MRI/xray scan disks, insurance cards, etc. quickly.

While there are numerous transportation options and (limited) shopping in the underground subway, bring your favorite snacks and drinks with you from home.

Bring extra medications, treatment supplies, (dog food?) and personal products in case your stay is extended, which happens quite often.

If you are driving, consider staying in an Airbnb house/apartment or hotel with a kitchenette. Bring the first few days of groceries with you, even if healthy convenience foods, and especially if you have any dietary restrictions. Appointments can be exhausting and you will want nourishing foods to sustain you until you can get to a grocery store. Most hotels offer breakfasts but do they meet your needs? Contact the Travel and Concierge Desk at MC who can email you lists of hotels with their amenities.

Rest assured that practically everything in Rochester, Minnesota is geared towards the patients and staff of Mayo Clinic. Hotels have shuttles and shuttles-and-buses run in every configuration possible from airports to local attractions. Check with the Travel and Concierge Desk at MC for details.

Pick up a map in your hotel lobby that covers the MC and surrounding area to get familiar with things before your first day. Take a drive by the St. Mary’s and Mayo Clinic/Gondo campuses. Both campuses are huge yet there are central access doors for each to simplify things. There IS NO information desk inside the front doors of MC/Gonda building but there are 2 valet desks just inside the front doors that are very helpful.

If you are a Facebook user, reach out to others with the same medical condition who have gone to MC for tips and collaboration. Just learning from another patient that all of the buildings and hotels around the main campus are connected by an underground “subway,” eased our concerns about travelling to MN in the dead of winter.

Go in the Winter if you can. It’s less crowded and, if there is really bad weather, you may have access to more last-minute consultations due to cancellations. This helps condense your schedule to make the most of your visit. Having said this, the MC shuttles may be late in a blizzard but never stop running and the Clinic doesn’t close! And no, hotel rates are not cheaper in the winter but they can be during weekdays.

First Day

Purchase a multi-day parking pass if you plan on accessing the patient parking garage for more than 2 days.

Bring nutritious snacks and water with you. You will use them!

Wear comfortable shoes and layers of clothing to navigate the long hallways with ease.

Note that wheelchairs and transporters are available from the curb when you arrive. Just alert the shuttle bus driver or valet staff as to your needs and make arrangements ahead of time when possible.

Arrive early to every scheduled appointment. Complete Check-ins via the MC App or Online Patient Portal to save time. Alternate: Check-in kiosks at the entrance to every wing of the MC and Gonda buildings.

Note the computer desks available in the expansive waiting areas, MC WiFi that we found helpful in upper floors and internal offices, and the special check-in kiosk at the entrance to the huuuuuuge lab. Or you can wait in line at the lab.

Very likely you will receive a personalized schedule after your Initial Consultation which details everything you need to know. You can go to the front desk of any department as a “Checker” to see if they have any openings that would allow you to move or change an appointment to streamline your scheduling. Repeat this Checker periodically as things change quickly and you may or may not be notified when an opening occurs.

Gather business cards of your healthcare providers after each appointment as phone numbers and provider names are NOT ALWAYS listed on your patient schedule!

Check periodically via either the Patient Online Portal or MC App for test results, and messages from your healthcare providers. Test results and reports are processed very quickly in comparison to our local healthcare services.

Visit the subway on the lower level even if you don’t plan on stopping at the cafeteria. It’s an amazing place buzzing with activity! The glass atrium in the cafeteria is beautiful too.

Ongoing Tips

Utilize the Airbnb host or hotel desk clerks as a resource for just about everything. Meet the other folks on your shuttle who will usually and gladly share their experiences, recommendations with you. Most folks you meet will be from out of town!

Message your healthcare providers via the MC App with non-medical questions or anything that can help maximize your stay at the MC. They usually reply within a day or two.

Plan follow-up appointments as soon as the need is identified. Staff do their best to work you into the schedule of your healthcare provider when they know that 1) you are travelling to the MC from out of town and 2) when you are scheduled to leave town.

That’s it for now, end of brain dump! Take care, Gentle Reader, and fellow sojourner to the Mayo Clinic! Please contact me with your tips and suggestions and I will add them as needed.

Countdown to Mayo

I’m kind of freaking out over here. No really. You would think I was preparing to go for the biggest medical evaluation of these 8 1/2 years battling a serious illness, or something. Well maybe I am!

The little city that comprises Mayo Clinic: most buildings and surrounding businesses are connected via the underground Subway Level. You may never have to go outside in the cold!

Some of my medical conditions have flared a bit lately, requiring medication and distracting me from my primary goal at the moment: preparing for a consultation at the famous Mayo Clinic. I have SIX medical appointments this week alone, FOUR next week! Gratefully, the locations of these appointments have put me in the proximity of places from which I need to gather medical records; one of them proved to be timely in addressing the flare-up of an acute, stress-related condition: shingles! Thank the Lord I caught that one early! Ugh. And just about everything related to my care will have been updated by the time we leave for Rochester, Minnesota: the biggest snow belt of the United States of America! Not that I am stressing over that one as well? Maybe so.

My beloved is both helping and complicating the process with his energetic ideas, last-minute plans, and on again/off again pursuit of a better, new-used truck. Turns out we are letting the last one go for now. Yay! There are always extra expenses and things to do when you make a major purchase. Now is not the best time for us to buy a truck! We really need to think through this purchase a little more, focus on our trip to the “Mayos,” and get some other proverbial ducks in a row. Steve will still be off working hard and doing his various activities in the meantime before we leave . . . seeya for dinner or at bedtime when you return home my love. (Yes, we still have a very late household.)

What’s left to do:

  • Receive the medical records from the Doctor and 2 hospitals I have visited the most.
  • Organize and condense hundreds of pages of test results into about 50 pages, labeled in some meaningful way.
  • Confirm arrangements with the hotel who promises NOT to use fragranced products in our room prior to our arrival. So bummed that an Airnb didn’t work out nor the Serenity House Network.
  • Pack WARM clothing, dog food, new dog medications, numerous supplements and medications for me, and enough food to get us through the first few days in the northern tundra. Gratefully our hotel room will have a kitchenette; it’s too frigid for our usual mode of camping via our “mobile clean room.” Most important on the packing list of my beloved: cross-country skis! I may take my snowshoes as well.
  • All the other stuff you do when away from home like laundry, placing he mail on hold, watching the weather here to have the snow shoveled when we are away, watching the weather there to confirm suitable road conditions, and the like. Should be less work than camping for sure!

While this process is exceedingly stressful when still battling a serious illness with bad convulsive episodes virtually every day, I am exceedingly grateful for the opportunity to got to the Mayo Clinic. Thank you Lord! It’s rated the best hospital in America! The top Doctors in the area of autoimmunity and neuroimmunology conduct research and see patients at the Mayo Clinic in Rochester. I have heard first-hand from some of my new Doctor’s patients and they state that he provides excellent care. Yay!

I am also glad that I did not go the Mayos 3 years ago when I was looking for new answers to troubling medical questions. Since then, we have further tested and treated for Chronic Lyme disease, lowered my burden of heavy metals, healed from various dental procedures and treatments, investigated numerous other potential infections, addressed/ongoing orthopedic issues, completed a comprehensive cardiac work-up, and even received genetic testing and coaching. It’s been a busy 3 years! All of these conditions could have explained this horrible illness but they did not. Good news: I can now tolerate more of the supplements and medications that are needed to re-build my health (which was impossible to do without triggering convulsive episodes in the past).

My prayer has always been that something of value would come from over 8 years of daily struggle. The Lord has been faithful to see us through even the darkest hours where demonic influences were palpable, suffering greater than I can even describe. Both Steve and I have been tested beyond what we thought we could ever bear yet the Lord has met us, sustained us, even carried us. There were sweet moments along the way that served to encourage us. We understand that others have been encouraged by our testimony as well. Yay God! Overall, these past 3 years preparing to go to the Mayo Clinic certainly were not wasted, that is for sure. It’s time to rally for a cure.

Let’s hope so, eh Gentle Reader? We are hopeful again! JJ