[This is an entertainment site. No medical advice is given. All readers are responsible for their own actions. All medical decisions are best made with a doctor’s advice.]
I read an article recently about a murder trial in New York. The author described the evidence in the trial as something each side, prosecution and defense, turns into a narrative they tell to the jury. The jury believes the side that tells the most compelling story with the evidence they have. I’m not doing justice to the eloquent way she described it, but that’s it in a nutshell.
Today I ask the following question: In creating a narrative from evidence, is what lawyers do that different from what CF doctors do?
Read the forums on cysticfibrosis.com. Different treatment methods fill the virtual pages, causing confusion and discussion. Some doctors prescribe steroids; some don’t. Some prescribe Pulmozyme before HTS; some don’t. Some prescribe Cipro three times a day; some don’t. You get the idea.
Remember Jack Nicholson in A Few Good Men – “You can’t handle the truth.” You’re right, Jack, I can’t. That’s because, as I’ve written before, the truth does not equal fact. Truth is a myth, often overrated and sometimes a lie. To tell you the truth, it is one’s interpretation of the evidence. When a witness offers to tell the truth and nothing but the truth, they do, but it doesn’t mean they were accurate. Witness accounts are often proven incorrect.
@CFFatboy wrote an excellent post last week describing how his doctor was going to put him on Cayston every day with no off-months and with alternating months of colistin. Cayston everyday? Not one month on, one month off? My doctor coughed up a hairball with I suggested two inhaled meds at once, even though my logic was that we do it with IV meds, why not inhaled? I’m not saying one method is right or wrong. It just shows the challenge of deciphering competing CF narratives.
If I had a dozen CF doctors taking care of me, I could cherry pick from their treatment plans and create one of my own.
Treatments for this disease vary to the same degree our genetic defects do. Each doctor works from their evidence: the medical papers, case studies and patient files. From that, he or she creates a treatment plan. And, many times they come up with something based on . . . well, who knows sometimes.
Many years ago, I told my doctor that I felt really good taking Ibuprofen. He said he didn’t think it would make any difference but if I liked it “what could it hurt?” which is “doctor talk” for “you have CF so WTF – live it up.” Now there is a page on the CF Foundation web site about Ibuprofen as a possible treatment for CF. I asked him about low testosterone. He said mine was probably fine and no supplementation was needed. Look what we know about cystic fibrosis and testosterone levels now. Treatment may be required.
As patients, we may be ahead of a trend because we have Internet access to the evidence, too. With it, we can create our own narrative or truth. And many times we discover it sooner than our doctor who hasn’t read what we’ve read or lived what we have lived.
And though I don’t recommend any therapies here, I see that situation developing now with BITC. Once again a potential treatment may be ahead of the curve. What is the truth about this chemical and its potential as a CF treatment? I don’t know. Once I figure out how to get some, I’ll discover what my truth is, so help me God.