Al and I spent the day at Ohio State attending the twice-yearly meeting of the Amyloidosis Support Group....which was conveniently scheduled 12 days after my diagnosis. It was great to meet other folks who are dealing with the disease and those who are in complete remission. I met a woman named Sandy who I said is my inspiration. She was diagnosed at 54 and is now in complete remission. She shared her contact info with me and told me to call or email if I ever had any questions or wanted to talk about anything. Another gift from God.
Spending the day with us were three OSU physicians actively involved in the care and treatment of amyloidosis patients. Dr. Efebera (my hematologist/oncologist), Dr Udayan Bhatt (nephrologist) and Dr. Rami Kahwash (cardiologist). These highly skilled and busy academic practitioners took more than 4 hours from their weekends to listen to each patient and answer questions with skill and compassion....regardless of how outlandish the question was. It was so inspiring to see these physicians who give equal focus to the scientific side and the human side of medical practice.
I mention the Amyloid Oasis again (my iPhone's initial autocorrect for amyloidosis) because after hearing the stories today of folks going years without a diagnosis, I had the vision of wandering in this medical desert. Once you have an accurate diagnosis and an experienced team treating you, you're in the Oasis. Until then, you are out in the desert. I know I'm now in the oasis.
Many people had their treatment at the Mayo Clinic and the support group recommends going to one of the major centers for treatment, or at least to develop the treatment plan. As frustrated and skeptical as I've been of my medical care at points on the journey, I have no skepticism with Dr. Efebera or Ohio State. Her training, her involvement in Phase 1 clinical trials, her obvious commitment to her patients gives me total confidence. And those who know me well probably find that surprising given my mantra of "In God we trust, all others bring data." Well, I have all the data I need.
After going through the process to get diagnosed, I told Alan I don't ever want to live in a city that doesn't have a major medical school and teaching hospital. I've done a lot of reading about rare diseases since my diagnosis and, as much as we think modern medicine is checklists and flow charts, its still more art than science. In my field of Customer Analytics, we talk about separating the signal in the data from the noise. That skill is especially important in medicine and it requires experience and intuition (the art part of medicine). It seems to me that its like trying to listen to about 5 different radio stations at once and slowly but surely get tuned into the one that is most relevant. That takes lot of experience and is so subject to how varied the physician's practice has been, how long they've been practicing and, the biases and assumptions that creep into any analysis.
Having an academic medical institution gives access to specialists most experienced at seeing complicated cases and they have honed the ability to diligently work through all the possible tests and results to more rapidly find the signal amidst the noise. It was a wonderful example of strong, structured, problem formulation to watch Dr. Levin order the first round of tests and then iterate through results and subsequent tests to arrive at a diagnosis. Thank God he did.
In medical education, I've learned, they train physicians that "common things are common" which means your patient with the odd collection of symptoms is most likely an atypical presentation of a common disease than a classic presentation of a rare disease. Another saying related to this that guides physicians' diagnostic process is "when you hear hoof beats think horses, not zebras." When my primary care doc couldn't find the horse, I think she thought I was imagining the hoof beats. I'm so thankful that Dr. Levin ventured out, found me on my zebra, and a brought me into the Amyloid Oasis. And, I'm thankful I've got Dr. Efebera to guide me through it.
Just another in the long list of things for which I'm thankful.
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