The internet only makes it worse. Initially, you find sites that only speak in vague generalities and appear to be copy and pasted from some unknown literary progenitor. Finally, you find and abstract written in medical jargon that offers more details, but you cannot read the whole article unless you pay for it.
Your primary care doctor make an appointment with a hematologist/oncologist, but they have only had one prior amyloidosis patient in the last 18 years. Besides, how do you know what questions to ask them? It is a very confusing week. It was for me and I am a doctor.
My sister works with cancer patients and has vast experience with chemotherapy and bone marrow transplants. I told her that my Kaiser doctors had suggested that I go to the Mayo Clinic for my work-up. Her colleague, a professor at the University of Washington said, "No, he needs to go to Boston University, they are the best at treating amyloidosis." I felt torn. Do I go back and tell my doctors that they are wrong in their recommendation? Or do I trust them implicitly?
Finally, around week two - three a groundwork is laid. The smoke clears and you find your advocates. The doctors, nurses, social workers and caregivers who light the first part of the path so that you can move forward. A plan is proposed and it feels right. You take the first step.
Every amyloidosis patient has a story of their delay-in-diagnosis. Unfortunately, this is the rule, not the exception. It is an uncommon disease with common symptoms. It is not easy to diagnose. Someone has to think about it. Notwithstanding, once diagnosed, and properly verified. We need to forget past delays, miscommunications and annoyances and move forward. This need no longer be a fatal diagnosis, and to the doctors that recommend getting our affairs in order we could respond, "with all do respect, I suggest the same for you, doctor." Doctors are terrible at predicting when someone will die if it longer than a month.
Where you receive your care is an emotional decision affected by many factors: the burden of travel, family issues, work issues, money, cost of care, insurance coverage. These limitations are set against the understandable desire to get the best care that we can. It truly can be a matter of life and death. What I have learned as a physician, and now as a patient, is the power of the team. No one person can be at the top of their game 100% of the time. With a team, each person specializes in certain aspects of the process so fewer things are missed, Teams tend to use protocols and 'best practices'; learning from the successes of others. Teams are not necessary for all diagnoses, just the really complicated ones. Often these teams are referred to as centers of excellence. They are everywhere.
Amyloidosis centers of excellence are found throughout the country. Although, we all owe a great debt of gratitude to the pioneers in our diagnosis that have laid the groundwork, done the research and written the papers so that all can learn from their collective experience. The Mayo Clinic and Boston University and others, stand out as giants in this area. We owe them our lives. Those who find new treatments for multiple myeloma also help immensely as so many drugs that start there transfer to us.
All of this knowledge, available to all and administered through centers of excellence can truly assuage our anxiety such that we know that the place that we are at is the right one for us. This is not a time for doubt, but for trust.
I no longer consider my diagnosis fatal. Yes, I will die and yes, it will likely be from complications of amyloidosis. But I am still alive and I shouldn't be. Since each day is, for me, a gift, the need to live a long life is no longer the goal. Rather, the goal now is to learn every day and to give love through service every day. This is where we go from here and the journey continues.