"Best" Opinions - Are They Really?

Getting other opinions is nothing new for me in my pulmonary journey. I wrote an article about my experiences with second, third, fourth, and millionth opinions a while back.

For years, my doctors had encouraged me to get an evaluation at what they considered to be the "top" respiratory center in the United States. I put off the trip for just as long as I had been told to go. There were a lot of underlying reasons that dissuaded me from pursuing this respiratory center, but the most significant reason was the emotional aspect.

If this was the best place and I walked away with nothing better, I did not think I would be able to cope. I avoided this evaluation like the plague... and then I got two respiratory infections, one being MRSA that turned into pneumonia. Highly antibiotic-resistant staph infections in already compromised lungs have a way of changing one's perspective.

Seeking the "best" opinion about my asthma

Three months later, right after my first bout of COVID - I had 1 rough year - I was on a plane to what was supposed to be the center of answers, treatment, and health. As soon as I arrived, I could feel the excitement coursing through my veins at the possibility that this would be exactly what I wanted and needed.

I spent 10 days in this foreign city, 7 of which centered around my evaluation. I saw 5 different pulmonologists (that each had a sub-specialty under the specialty of pulmonology!) and 3 accessory specialists. I had more labs than I ever thought possible, underwent 2 procedures requiring anesthesia, and did Pulmonary Function Tests out the wazoo. I thought by the end of this mess, I would be walking away with fresh ideas, treatment plans, and new hopes.

The results and recommendations

The whole evaluation and subsequent recommendations were no real help. I was told things such as:

"It doesn't seem like _____, but it's not _____."

"Science just isn't advanced enough for you."

"Maybe you should look into an undiagnosed/rare disease program - it probably won't help you, but you might get an answer."

The best I got was a potentially better name for what is going on in my lungs as well as the validation that my pulmonary system is indeed damaged (likely) beyond repair.

Reflecting on my experience

It took me a minute to process. Again, there is a grieving period when you receive bad, or even just lackluster, news - especially when you were expecting much more. I had put off going to this facility for a considerable amount of time because I feared I would be no better off, exactly what indeed happened. I did not want to use up my "last resort" until I absolutely had to (which I did absolutely have to, but I try not to acknowledge) out of fear that there would be nothing left if this failed... which is now my reality.

I do not love the "answers" we walked away with - I believe it is hard to process and accept something that only remains a vague something. It is hard to be okay with the fact that I may never be entirely diagnosed, entirely treated out of pure inability to uncover everything underlying.

I would not discourage anyone from seeking out another opinions, but I think it is crucial to set realistic expectations. Even the "best" place can let you down, but this time it left me with really nowhere else to go.

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