Rochester Hotel rooms/kitchenette/grocery suggestions

Thank you for checking in on me! I continue to be amazed by Mayo Clinic and the support all the way around.

I arrived on Oct. 3, and ended up being there through this past Saturday, Oct. 16. I am headed back for another week on the 31st of Oct.

In terms of lodging, convenience, shuttle (even to Walmart!) and taxi service, it was exactly what I needed. The very short walk to the Clinic from Residence Inn was so easy. I even walked around outside a bit on the weekend and thoroughly enjoyed being outside and felt completely safe. I found that the cafeteria at the clinic had several items on the menu I could eat with my swallowing issues, and with a little planning in between appointments, got a few things to go for my supper. I spent a small amount of time walking through some of the shops along the subway, which gave a much needed break. I actually took a rolling cart for luggage and strapped my backpack to it and rolled it everywhere I went. I read a tip somewhere on here that a rolling cart/tote of some sort is helpful. I put small insulated lunch bag and two ice packs in it so it was easy to take my smoothies or food along with me on those long days that began at 6:00 am and lasted late into the afternoon. I had a delivery from Hy-Vee arrive on the evening I got to Rochester, and made a Walmart run on on the Walmart shuttle on a light appointment day. It did not take me long at all to know my way around the different floors and buildings.

I could not be more pleased with the care and attention I received while there. The doctor in Internal Medicine who is I guess acting as my “case manager” is truly not leaving any stone unturned to get to the bottom of what is going on. I’m a bit of a puzzle, but thankfully, some of the pieces are being put together and still waiting on a few more results and consults when I go back.

In terms of what I went in the first place: even though I do not have the antibodies for Myasthenia Gravis (seronegative) both the neurologist and neuro-ophthalmologist confirmed my diagnosis of general MG. My swallowing and gastro issues are still being looked into, and I was diagnosed with MGUS from extensive blood work. I had a pet scan, and the hematologist wants to repeat all the serum and urine testing in three months to see if I need to have a bone marrow biopsy. Also looking into how this new piece fits into the puzzle of some of my symptoms. The pet scan and a few other radiology images also showed extensive degenerative joint issues which I hope will be followed up on as well.

I think the aspect of the entire visit (and future ones) that I am so impressed and pleased with it that all the doctors work together and are on the same page in figuring out and ruling out what might be going on, instead of many different doctors in many different specialties diagnosing through their own lenses rather than looking at the greater picture together. If they have found something that could be problematic, they have jumped on it and put me with the right specialties and sub specialties to check it out.

I keep thinking of things to add! The patient portal was/is a wonderful tool and a time safer in filling out forms, etc prior to appointments. My husband was with me for part of the stay, but had to go back home (he’s an ophthalmologist and thought the entire clinic ran like a well oiled machine! Was very impressed!). We were pretty sure I was going to have to be sedated for a procedure or two, which did happen, but while he was not there. I was looking into how I could find a “responsible person” to be released to after sedation (not being put to sleep) but after asking at the desk of several of the departments found that if you are staying in a hotel on the subway and did not have to drive, you could be released on your own, which was a huge relief for me, and I did not have a problem at all.

I believe I was and am in the best possible hands, believe that I am getting/will get the best diagnosis and treatment plan in the world from the best (and kindest) doctors! I feel like an echo, but every single person I encountered was helpful, kind, and went above and beyond. And I felt like a person with real needs, not simply patient to check off and move on. And I didn’t even feel embarrassed when I had to lug around a 24 hour urine collection container 😉

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