Piecing it together

When our daughter Fran's situation was near it's most stressful, I began hearing stories of/from people who were struggling with their own medical situations. Many of the people, surprisingly to me, were also undiagnosed after a long string of dead-ends. And like us, they had heard the words, "I'm sorry, I don't know what else to do for you", more than once.

Today I found myself in a conversation with a work colleague, when we realized the two of us shared an acquaintance with one of the people who shared their child's story with me. I was so happy to hear that after his long, sad journey, his parents had the time and resources to take him to the Mayo Clinic for several months after his case had been submitted and accepted. He was diagnosed with a rare, but treatable disease. Though he has to follow a strict health regimen, he was able to finish high school and start college. 

The work colleague I was sharing with, is married to a doctor. He was stymied that this family had gone from specialist to specialist, only to have the same tests done over and over--a waste of time and resources. Something that frustrated and confused our family as well and made us wonder why doctors didn't take the time to read patients files.

During those dark times, I had read an author's account of her medical journey, where she suggested the best solution was to find a doctor who would act as coach. Someone who wouldn't easily give up and could sort through all of the results with a keen, forensic eye. But how does a person find a doctor like this? And why isn't our medical system set-up to deal with these situations? Would it help to have regional institutions like the Mayo or Cleveland Clinic? 

 Now when I look back on the most emotional moments, I edit letter after letter in my head to the doctors and medical professionals who not only failed to help Fran, but managed to turn the table and make it about her mental health. Claiming that she didn't really want to get any better and nothing was physically wrong with her.

Those emotional moments are still fresh and raw. I'm glad I can't see or hear the tearful speeches we made on her behalf, that appeared to fall on skeptical and seemingly unsympathetic ears. How I wish doctors could work to bring about the changes that are needed to provide medical care to help people, not try to placate, shrug or assume patients don't want to get better. Or are doctors entrenched in their own issues and unable to see where change is needed?