Ham on rye, Don’t hold the Mayo

We, my wife and I, spent last week in Jacksonville, FL at the Mayo Clinic. I was simply driver and escort. This was her week of attention and an attempt to find answers.

Mayo is an interesting experience. Once they agree to see you and work out the doctors you need to see, and the initial tests you need, they tell you when to show up and how to send your records to them. They also recommend you hand-carry them if things are not scheduled well in advance. Then they send you an itinerary.

When you arrive at the information stand just before registration and check-in, the volunteers print a fresh itinerary for your use. After check-in, you’re off to the first stop on your itinerary. I don’t know how it works with other patients, but in our case our first stop was with a specialist that might be the most knowledgeable of the core of my wife’s least-easily identified issues. We spent almost 90 minutes with this doctor while she took a full history, made an examination, talked about possibilities, ordered tests, and made referrals to other doctors.

She also explained how the system worked and how to make best advantage of our time there.

After the consultation was completed, we returned to the waiting and were asked to standby for a new itinerary. Twenty minutes later we were provided one that included a lab appointment, appointments for that week, and appointments several weeks out. We were then told that some consultations had to be handled in a specific order, which ones were, and then how to talk with schedulers about trying to find openings for the week we were there as well as how to request standby appointments.

Each floor is essentially its own practice and has its own specific rules about standby appointments and scheduling. While this lack of uniformity is frustrating on the surface, I think it makes sense. The amount of time these doctors spend with patients is quite impressive and they do seem much more interested in identifying and solving problems than rushing patients through assembly-line medicine.

Tuesday morning, following an orthopedic consult that brought a great deal of needed clarity, we began a day of sitting patiently in hopes of a consult with a specialist in physical medicine and rehabilitation. By mid-afternoon we learned that the doctor had promised to see us. Just before five we were called and guided to an examination room. For more than an hour my wife was able to tell her story to someone who not only seemed to care, but who believed the reality of her pain and could explain its foundations. This doctor, as they all ended up being, was extraordinarily helpful and exemplified what I think we all wish our doctors to be.

By week’s end we had consulted with eight doctors, visited the lab three times, had three sets of x-rays, one abdominal CT scan, and an ultrasound. Along the way we had access to an online portal that allowed immediate access to her Mayo records, including her doctor’s notes – often the same day of the visit. The Mayo Clinic runs a good operation.

We came away without all the answers we wanted, but we now have greater clarity about what to pursue. Importantly, we also know some things not to do. Previously planned surgeries are now completely off the table. While these surgeries had been suggested to help her, we now know they are ill-advised for someone with her issues. So, something less to worry about over the next couple of years. All of this made the trip worthwhile.

I suppose I should make some comparison to higher education, but I am not sure I can. Colleges, four-year colleges especially those that are predominantly majority-serving, do their best  to admit people who need the least help and are most likely of success. Mayo, and other specialty clinics, do a lot of the opposite. Guess which job is tougher? Certainly there are parallels to minority-serving institutions and community colleges, but I am not sure these institutions are intentional about seeking the most challenging, the most interesting cases. They simply do not turn their backs on them if they do show up.

We still have a long way to go. Of what we have learned, some has been a relief, more is quite scary. I wish I could take this burden from her and carry it myself. It may be though that she is stronger than I as she has been carrying this burden from birth and it has simply gotten worse. My wife has been quite amazing.

“We Shall Overcome” is a protest song. It is, as I have said before, also a love song. It declaration of strength and a commitment to shared strength. It’s a song of love. It’s a protest against injustice and badness.

We shall overcome, we shall overcome,
We shall overcome someday;
Oh, deep in my heart, I do believe,
We shall overcome someday.

We’ll walk hand in hand, we’ll walk hand in hand,
We’ll walk hand in hand someday;
Oh, deep in my heart, I do believe,
We’ll walk hand in hand someday.

We are not afraid, we are not afraid,
We are not afraid today;
Oh, deep in my heart, I do believe,
We are not afraid today.

 

Be nice. It won't hurt either of us.

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