I have to start by saying The Mayo Clinic is the most amazing medical center I have experienced. The focus is truly patient centered. It is not just lip service like most specialty centers. The physical lay out is enough to take your breath away. The buildings are named after donors like Guggenheim, Hilton and Don Abraham, founder of Slim-fast who built a state of the art fitness center for employees. There is incredible art work everywhere. In the main lobby of the Gonda building, there is a $50,000 donated piano being played most days. The day we were there, a small group was singing “Somewhere over the rainbow”.
One has to ask why did these people donate so much money? I have an answer after my visit . Everyone from the wealthiest to the poorest is treated with equal respect and dignity. The care is world class to everyone and the institution supports out side of the box thinking.
My client is in a wheelchair. Never did he or his friend have to worry about handicap access. The city of Rochester, MN is designed for access. There is an underground subway(walkway) linking The Mayo campus from the hotel. There are shops and restaurants easily available. Wheelchairs and walkers are a common site.
The doctor’s visit was a great experience. He spent about 1.5 hour with us. He was very clear and frank about what had to happen. He provided a diagnosis and aggressive treatment. The doctor explained there was not much research on the new area of immunoneurology and paraneoplastic syndrome. His work and research is focused on this specialty and has seen success and failure. His treatments are radical and cutting edge. It is a roll of the dice but one that is worth the risk if nothing is available.
He made it clear there would be no returning to life as before the onset of symptoms. The time lapse was too great. The success would be stopping progression and a possible a return to using a walker. He took the time to explain why he was prescribing this plan of treatment and what could be expected. He was clear on both the positive and negatives of the treatment. There was no doubt of his confidence in the treatment and his experience with the illness. He kept asking me why no one had suggested any of this. All I could do was shrug my shoulders and agree. It was clear his goal was to get my client to some better quality of life. He was passionate about it. He knows the treatment is aggressive but he believes the progression must be stopped and now. No more time must be lost. He made sure my client heard and understood what he was saying since he has increased hearing loss. My client repeated it back to him clearly and exactly.
My client was once again hopeful with the minimum of stopping the progression to the best case being able to use a walker again. The bottom line is as the doctor said, “I want you to see your son grow up.” It took 2.5 years to get this information. Some doctors in the process basically said good luck I can’t do anything. I wonder why they didn’t bother to seek out more information on what is being tried. At least give a client some options to look in other places. This is the reason patients use the internet for more information and options.
As you have guessed, I am now a fan of Mayo Clinic. As an advocate, I have a very critical eye. The only area I think that is difficult to navigate is ,of course, the billing and financial aid or charity care. Mayo doesn’t accept most medical assistance insurance outside their region. You have to get the doctor to approve financial aid before the visit and it only covers the initial consult. It often takes having a contact to get the doctor to approve the financial aid. My client had been refused a 1.5 yrs ago because of his insurance. What I found out was much of the charity care goes to area residents. It would seem to me with all the endowment money, there would be a much better system of financial aid. Without this visit, my client would be looking at continued progression of his disease. I am stating all this because Mayo offers so much and my heart goes out to those who for financial reason are refused.