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I finally have an appointment, but am more anxious than anticipated.
I don't quite know where to start with this post. I suppose the best place would be that after THREE years of my local care team and I trying to get me in for a second opinion at Mayo, I have finally been offered an appointment. To the kind woman on the other end of the line that offered me this, I am so very sorry that I began sobbing. This is such an answer to my support system and I's prayers.
However, I am quite anxious now that the countdown to my appointment has begun. Can a Mayo 'veteran' help alleviate some of my fears?
1. I have no idea what is wrong with me. There is not 'one diagnosis' that I am seeking care for. Over the last ten years, each system of my body has developed one issue or another (all after EBV...). I've been denied by internal med because the amount of specialists that would need to be on my care team is not feasible with their current availability & denied by specialties as my chief complaint is too broad. However, I was accepted by the autoimmune section of neurology, which I think is a great place to start. However, I can't sleep at night because I am expecting a call that says they made a mistake and can't help me. Would they do this? Or would I not find out until I am in Rochester? If this happens, will they help point me to a doctor that can help me (potentially while I am already there)? I am the epitomy of desperate at this point.
2. How do I tell my job that I will be working odd hours for nearly a week? The appointment scheduler told me to plan to be there for five business days (05/24 to 05/31), but I only have one appointment scheduled so far. What is the typical day at Mayo, if there is one? I quite literally still have to bill 40+ hours that week due to business demands, but can do so at night. However, my supervisors need to know why I will show as 'offline' during the day and be unavailable for phone calls. No one knows I am chronically ill. It is my best-kept secret. Do I talk to HR? What are my options here?
3. If this subsection of neurology can't help me, will this make it easier to see other specialties / get in with internal med with my foot in the door? I don't know why I am suddenly convinced that this trip will not be worthwhile when I have been convinced the last three years that Mayo will be the place to finally help me.
If you have read this far, thank you. As you can probably tell, I am a ball of nerves about this appointment. It has been a long ten years, so a lot is riding on this ... both physically and emotionally.
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Hi @bcboswe, I completely understand everything you've written, including that you began sobbing when the woman called to schedule your appointments.
I will bring in a few veteran Mayo patients to help calm your nerves and to prepare you for what to expect. It really helps to hear from others who have been there. Before I do that and to bring in the right members, can you share which Mayo Clinic location you'll be visiting (Minnesota, Arizona or Florida)?
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1 ReactionOh gosh, @bcboswe, upon closer reading I see that you will be going to Mayo Clinic, Rochester, Minnesota. In that case, let me start with calling upon @roch @loribmt @jenniferhunter and @johnbishop to join in this discussion. I'll continue to look for others who have experience with autoimmune neurology and immune-inflammatory diseases of the central nervous system (CNS).
Hello @bcboswe, I would like to add my welcome to Connect along with @colleenyoung and others. I'm glad to hear you have your appointment setup. I think that may be one of the hardest pieces of the puzzle. Here are some of the discussions where others have shared their experiences visiting Mayo Clinic.
-- Comprehensive Collaborative Team Approach to Care: https://connect.mayoclinic.org/discussion/comprehensive-collaborative-team-approach-to-care/
– Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
– Packing for our trip to Mayo Clinic. What to bring? https://connect.mayoclinic.org/discussion/packing/
– Tips for your first Mayo Clinic visit and tests/appt schedules https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/
I'm wondering if it might help you to plan your conversation for your first appointment. I have found that it really helps me to organize what questions I really want to get answered to ease my mind. There are some great tips on planning that conversation here - https://patientrevolution.org/visit-tools.
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3 ReactionsSo glad you got an appointment, let me see if I can alleviate some of your concerns.
1st, the provider will determine testing or additional appointments. Some testing might be done prior to seeing first provider. After seeing provider and testing, they may determine if you need to see additional specialist and coordinate those appointments.
When you go to first appointment, the desk attendant will check you in for appointment, or tell you about other appointments and testing that have been scheduled. If you have not done so, create an online portal account and download the Mayo app on your smart phone. All your appointment information will be added to portal as they are scheduled.
If you have questionnaires or forms that need to be filled out, you can do on portal before arriving. That helps streamline process and save you time at check-in.
The first day will probably be busy. They try to make most efficient use of time, but depending on availability appointments, you may have down time during day. Not sure if you can only work from your hotel room, or from other locations. Sometimes you can find a quite spot away from other people to work, but depends on type of work you do. Waiting areas can be crowded and noisy. I have seen a business area for patients at Mayo, though I have never used and could not fine on website, check with the concierge service for more info:
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
About letting work know what is happening. I do not know legal aspects, but I think you can be very vague. Just let them know you will be traveling for medical appointments and working remote. I would not share any information not necessary, If try to pry, tell them you will know more after trip. Once you arrive at Mayo and know tentative schedule, you can update them on your planned hours.
Good luck
Laurie
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