Everything Old Is New Again – CF, Docs, and Plans

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Six months ago we were hit with a disheartening blow to our years-long CF journey. The pulmonary doctor we’ve had from the very start of our journey was transferring all her patients on to new doctors. With plans to retire very soon, it was time to transfer her last six patients to their new forever homes.  My two kids included. So, at our last appointment we met our new (highly recommended by Dr. A) doc, Dr. M. Change isn’t easy. We were suddenly reporting on a Tuesday instead of a Wednesday. Dr. M, while perfectly nice, was making all of these suggestions and recommendations and this and that and I was honestly panicked. Mostly because he wanted to do a complete, total, sweep of the CFTR gene on K. In my blind, “this is so different, I don’t know, so I’ll smile and nod” moment I did just that. I smiled and nodded. Yesterday we returned for the next appointment and this time, not so new, it was a little different. We spent some time with Dr. M, and the respiratory therapist and got a better feel for what’s going on. And so we set new plans, a new direction. My biggest concern with the genetic tests was addressed – would we lose the CF diagnosis, and therefor the vital insurance we desperately need for treatment? No.  Because of positive sweat tests and concurrent symptoms, their diagnosis of CF will remain no matter the results of the full genetic sweep (which is, blessedly, being covered by the fantastic CFF not just for Kennedy, but for Denver as well). Then we moved onto Kennedy’s current status.  Though her weight is at an excellent place right now for a change, her functions are not. She has maintained for years just fine, but Dr. M wants to do more than maintain. He wants to attack…and so… With her functions the way they are, there is definitely some sort of obstruction, and he wants to find it. There will be a chest CT. There will also be another functions test for before and after albuterol to see if there is any asthma-like influences, and she’s being put on a nasal steroid for her constant sniffles. We’re fighting insurance for a new vest system (with the doctor’s help) since hers is old and been beat up by destructive toddlers. She will be on an increased vest rotation and possibly new meds (hypertonic saline) which will require new equipment. Basically we are now fighting to push forward and move beyond basic maintaining and into full blown attack mode. It’s terrifying and exciting. I don’t know what’s happening in the future, except increased appointments and testing for the little one, but I do know that something is happening. Change is scary, but this is proof it isn’t always bad. And that first impressions aren’t everything. Read more »