Hematology Mayo Florida: Looking for First Appointment Information

@yisabess, welcome. I added your question to the Blood Cancers & Disorders Support Group as well https://connect.mayoclinic.org/group/blood-cancers-disorders/

While not hematology specific, you might appreciate the comments in these related discussions:
- How to best plan and prep for my visit to Mayo Jacksonville https://connect.mayoclinic.org/discussion/how-to-best-plan-and-prep-for-my-visit-to-mayo-jacksonville/
- Visiting Jacksonville location as a first time patient https://connect.mayoclinic.org/discussion/visiting-jacksonville-location-as-a-first-time-patient/

I'm also tagging members like @loribmt @johnra @5qdeletion @lisal64 @ckscckscoville @lindes who are hematology patients or Mayo FL patients or both to share their tips.

@yisabess, you are in good hands at Mayo Clinic. If you haven't already, please download the Mayo Clinic patient portal. You will see appointments start to appear. You will also receive a detailed Patient Appointment Guide with all the details of your appointments and what to do to prepare and what you can expect.

Have you downloaded the patient portal?

@colleenyoung hello and thank you! I have downloaded the patient portal. The receptionist (I believe) said the appointment could be an hour or 2 or potentially longer depending on what the doctor says. I was curious if it's typical that the doctor would run a bunch of tests and want me to come back the next or even stay there. I'm trying to plan for work and lodging

Now that you’re signed up for the Portal, you’ll see on the Portal if you have labs prior to the Hematologist appointment. Click on “Appointments” in the Portal to see good info - your entire “Itinerary” - and to see and record your Patient ID number. Take your printed “Itinerary” to your appointment.

You’ll be going to the Mangurian Bldg, for Hematology; the only building with decent parking without a long walk. Other buildings are very full parking with long walks, but there is a roving free shuttle to each building, for example the Davis, Cannady, or Mayo Hospital buildings. If you feel you need the shuttle, call the Mayo main phone number to ask for the shuttle phone number so you can call for pickup instead of hoping to see the bus at the designated bus stop at most parking lots.

Check in at one of 3 desks on the 1st floor of the Mangurian building. If you’re asked at registration to sign an ABN - as you probably know, your signature on that document is your promise to pay out of pocket, and the ABN should estimate the amount you must pay. Registration workers are loathe to advise you about why you’re signing that “Advance Beneficiary Notice”.

There is a large waiting room on the 1st floor where you have labs done -where your blood draw is accomplished. Plan to be at the Mangurian building most of the day if you have labs plus Dr. appointment.

There is a decent cafe on the 1st floor.

Your first appointment probably will include labs - don’t worry about timing - Mayo will get results to your doctor in time for your same-day appointment. We always have labs scheduled in the morning for afternoon doctor appointments. Yes, you could run into a second day, requiring an overnight, if something is revealed in tests that indicates more tests or immediate action. Always take an overnight bag when going to Mayo. Take bottled water; there’s a water bottle fill-up station near the 1st floor rest rooms.

Hematology doctors, NPs, nurses, and clerical staff are wonderful - always helpful in every way.

There’s a new hotel - Hilton Jacksonville At Mayo Clinic- on Transformation Way just around a big curve from the crummy old too-costly Marriott on the south side of the Mayo Campus. The Hilton is on the high side for cost but very much worth it. Ask for a room that gets good wireless; lower floors were hard to connect when I was there a couple months ago.

Your first appointment will feel like a success, no matter what you learn. The experience and feedback are outstanding. Best regards to you; it will be a big day.

@marco88 Afterthoughts…
At any hotel near Mayo Jax, ask for the Mayo rate, save a little. Beach Blvd. a short distance, has a lot of hotels. Avoid the Tru hotels; they’re grubby.
Valet parking is $8.00 not including tip. Most buildings have valet.

There’s a parking structure close to the Emergency Center; you can walk interior corridors all the way from Emergency, to the Cannady building, the Mayo Hospital building, and over to the Davis Building.

The Mangurian building is not connected, and is about 1/8 to 1/4 mile away from the Davis building. Not walkable from the Cannady/Hospital/Davis buildings unless you feel robust.

You can upload documents such as scan reports and labs, anything you want to upload from your computer, on the Portal by going to “Messages”, choose your Doctor by name if Mayo has populated your Mayo providers there…. then write a title for the Message, then look at the bottom of the Message window for “upload”.

If you can scan records onto your computer, this is a game changer in terms of getting your local doctor visit notes and local lab reports to Mayo prior to your appointment. BUT you may not see a link with your doctor’s name until after you’ve seen that doctor at least one time.

@marco88 thank you for the information. I appreciate it. I have an appointment at 8:30am with the doctor I believe. If I get blood drawn will the doctor be able to look at it the same day and then can I talk to him in the afternoon again or will there likely be an overnight needed if I talk to him first then get labs done? Is it likely that he will want to run other tests besides getting blood drawn? Does it take awhile to get the results back from the blood draw? When I get there will I see a team of doctors and tell them all what is going on or just the hematologist? Is there anything that I should or shouldn't bring? Is it likely that I will be there for the majority of the day? When I talk to the doctor(s) will I be able to bring in all the people that are coming with me? I am bringing my fiancé and my parents.

@yisabess Look at that Itinerary on the Portal. It will clearly show times for labs & Dr appt. If Dr wants more labs or scans after seeing initial results, you're probably into a next day or later time - perhaps in a week or more - unless they can squeeze you in for same day.

Likely one or two people can go into the exam room with you. Three people - dunno… that’s a lot

If labs are scheduled prior to the doctor visit - you will be there most of the day.

Bring comfort items - water, snacks, backup charger & charging cords & look for the few electric outlets in waiting rooms, warm sweater/jacket - every building is cold.

There,s a nice restaurant “M” in the corridor in the Cannady building - Emergency building area. Expensive. Also a restaurant on the 1st floor of the Davis building.

Labs get to your doctor within an hour or two. You likely will see one doctor, perhaps with a trainee or NP with him or her.

@yisabess Just realized you said 8:30 a.m. doctor appointment. So no early blood draw. Maybe this is just a meet/greet appointment to review your records and history, .. with tests and evaluation to follow at a later date.

Is there any appointment time on your Itinerary other than the 8:30 a.m. doctor appointment?

You can always ask the doctor or NP to see if you can be squeezed in for labs or scans when they tell you to come back another time/day for those. Labs are easy to get in, but MRI or other scans probably are not possible to schedule same-day. Always worth a try though, so ask. You could save yourself another trip by asking for further tests same day while you’re already there. We’ve managed that in the past.

For anything you’re worried about - scheduling, navigating the system, whatever - ask for the phone number of the Hematology Social Worker. There may be one or two HSWs, and they are a fabulous resource.

Everyone you meet there will try to help you- they are the best.

We have been going to Mayo Jax for 20 years, many departments - cardiology, neurology, urology, hepatology, hematology, orthopedic; surgery, emergency…. watching the campus grow.

So I called and asked about my appointment. They said I only have an hour consult scheduled then the doctor will decide what to do next. Is it typical for the doctor to want to do tests that day? Or is it typical for them to ask me to come back the next day/another day?

I have sideroblastic anemia. Does anyone know of anyone who went to Mayo that was treated for sideroblastic anemia or does someone have experience with that? I have so many random symptoms and I don't know if its sideroblastic anemia or something else going on.

Thank you

@yisabess Oh, only the consult. Expect the doctor to order tests for a later date. A bone marrow aspiration may be ordered. I'm not familiar with sideroblast, but believe it is a bone marrow deficiency. My husband has had five aspirations; very painful for him so he asks for sedation which is performed in the Mayo building, I think in a day surgery area... he's not getting an aspiration in the clinic exam room again - it would be local anesthetic only, but can be easily done by a NP if you think you are up to it. Think about your pain tolerance before you schedule this.

A place you might start for reading material: https://mayoclinic.elsevierpure.com/en/publications/treatment-of-acquired-sideroblastic-anemias/

Be assured that your Mayo experience will result in a diagnosis that is not "maybe" or "kinda" or incomplete. They will know exactly what you have, and will walk you through beginning and later treatments. Ask many questions!

I'd want to know specifically what the bone marrow biopsy revealed. Is it acquired or hereditary; what specific treatment is advised first & how long before it's reasonable for it to "kick in"; what side effects; how often to check blood levels; can you get an order for blood tests at a lab close to home; what about iron/chelation?, what to avoid when taking vitamins, how to identify and manage fatigue caused by the condition, will blood transfusions help, food to avoid.... well I'm getting in the weeds here- but I've learned to ask every question I can think of... don't go home wishing you'd asked. But if you have questions later, you can ask through a Message on the portal to get answers that you can see and think over.

You will have a successful day at Mayo. I am confident the Heme doctors have seen your condition a multitude of times & they know just what to do!

@yisabess
It is so hard to know if you will have additional tests scheduled for the same day. Everyone is unique, and it may be based on the test results you shared from other clinics prior to the appointment. If they order blood tests, there's a good chance you can have them done the same day. Results are processed quickly and are likely available to the provider and on the portal within hours. When you see the provider, the test results will depend. They may send a portal message about next steps, or you may have an in-person or telemedicine visit to follow up. Ask at your first appointment what to expect.

Unless there is a reason you cannot fast (e.g., diabetes), I suggest fasting prior to your appointment so that, if you order a test that requires fasting, you are ready.

If you can be flexible with your travel plans, it helps. Often, hotels near Mayo locations understand that schedules change and allow you to adjust your reservations.