A huge issue with any chronic illness is treatment compliance. Did you know that in order to listed for any transplant in the United States that the patient and their caregivers have to show their willingness to comply to treatment, any treatment prescribed or recommended by your team? Yes really, if you are not going to comply with treatment then how are you going to take the necessary steps to protect that precious donated organ that they are giving you.
In PCD care we already have such conflicting treatment recommendations from experts around the world. We have a PCD specialist right here in the states that thinks airway clearance techniques aren’t needed in PCD care because the PCD patient retains the body’s natural cough clearance. There is an equally prominent PCD and Bronchiectasis expert that says airway clearance is an absolute must to ward off early onset pseudomonas and mycobacteria infections in PCD patients. The biggest thing is that there are no scientifically proven treatments, medications, diet, and or therapies for primary ciliary dyskinesia patients, not even anything FDA approved i the United States.
Now add in the internet and the world stage of other medical systems in the world and their treatments and guidelines on how they think PCD should be treated and it’s no wonder you have patients like me scratching our heads. Scratching our heads trying to figure out what we really should be doing to help ourselves. Because so and so in this support group says do A,B, C and another person says do A & C, but doing B isn’t recommended in PCD care by their governing medical body for their country. One country uses N-acetyl cysteine (NAC) and another country says absolutely do not use N-acetyl cysteine (NAC) in PCD. It’s all very confusing to the average patient, especially the younger generation.
I truly believe this disconnect is the reason there is so much noncompliance issues surrounding treatments especially airway clearance in primary ciliary dyskinesia care. I myself struggle with compliance for different airway clearance techniques. Part of me just hates them. And part of me doesn’t trust that they work. I really struggle with am I making things worse. What does anyone really understand about PCD treatments yet? These are all the things swirling through my head as. I dread the next treatment session.
My personal thoughts are that this issue isn’t going to get any better until we have better studies that answer some of these questions. And we have experts that are consistent and maintain continuity of recommendations across the board. I mean how do we expect the youth to get on board with treatments that even some PCD experts can’t even get behind. I really think that the experts and the clinicians need to meet patients where the patient is. Some of us just can’t wrap our heads around the conflicts amongst the experts and the recommendations. If we had a set of guidelines that were across the board, no expert descent then maybe more of us would be on board with airway clearance treatments and PCD treatments in general.
I think caregivers could take a page from this thought of meeting the patient where they are. It’s okay to switch up your airway clearance. It’s okay to make it fun and relaxing or both at the same time. Airway clearance doesn’t have to look the same for every single one of us. And honestly constantly pushing us to where we aren’t ready isn’t doing anyone any favors. Try meeting your PCD loved one where they are, where they are comfortable, and then slowly working up to where you want them to be. PCD is a process, it stretches out over decades, and there is no finish line. We all, patients, caregivers, and medical professionals need to relax, try to be supportive of one another, and work together to work through the process of life with PCD.
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