3 Questions: Diagnosis For Some... Stitches...And Cough Attacks

[Bailey Vincent]

I have 3 totally random questions to ask! : )

1) I think it's super interesting how many don't have a firm diagnosis of CF ("treated for CF") or PCD... but still suffer, take the same meds, and fall in the grey zone. How many of you would define yourself as in the grey zone? How many of you feel you are in the spectrum of CF and PCD, but diagnostics [especially for the latter] just aren't there yet?

2) Has anyone else had issues with stitches not healing? I got my port put in 1 month ago, and the "outer" stitches and glue are now gone- but when they faded off, a big long inner stitch revealed itself to be pushing out from the skin. Yuck! A doctor clipped the knot and told me it would heal... it didn't. It's only become more inflamed, painful and gross- with a hard stitch sticking out and the skin around it not healing. Looks like I'm back to hospital or ER tomorrow so someone can fix it! : ( This is my third time having issues with inner stitches post surgery... anyone else?

3) We don't think I have asthma in addition to all of this- though I'm on meds for it- but I sometime have attacks of such. Last night I started coughing and couldn't stop... couldn't clear my lungs... couldn't breathe... until I was a gasping, panicked mess (like a fish out of water). Took me a lot of treatments to get to a point where I could even remotely breathe again, and it was still minimal (as if getting air through a straw). Wheezing, the works. I am pretty sure I have another chest infection, but regardless- who else has lung attacks like this? Cough attacks? Hoping I'm not the only one even if that's twisted to say ; )

 

[Beccamom]

You are not alone. My daughter is nearly 14 and is treated for, but not diagnosed with CF. Her lung function FEV1 hit a low of 50% and that is what caused lots of retesting. She now has CF treatments vest, hypersal, antibiotics based on sputum culture and off all asthma meds and her FEV1 stays in the 90s when well.

Due to her testing as a carrier my doctor tested me and I am diagnosed now and treated for CF.

My mom experiences exactly what you describe as coughing attacks and was told reflux except the reflux meds do nothing. She has been diagnosed with asthma since she was a baby. I wonder what her CF genetics would show since she is at least a carrier as my mom.

 

[jshet]

When speaking with my sons cf specialist, Dr. Oreinstein, he said that the big guru of Cf (forgot his name) is saying that cf is a clinical diagnoisis. Even though for most peopke it can be determined thru genetics it does not apply to everyone. There are many people that have the same symptoms and respond to the same treatments and should be given the diagnoisis because it is proven clinically.

 

[Melissa75]

1) I guess I'd put myself in a light gray zone. I don't have pancreatic insufficiency and my bronchiectasis exacerbations are mostly treated with oral antibiotics. With very low sweats, no mutation in the 95 panel, high FEV1, documented allergies, and reflux that has been called severe and nonexistent by different tests, I'm pretty sure I don't have two rare mild-presentation CF mutations.

In the flip side, I get CF-typical bacteria and my BMI sometimes drops out of normal range and I have occasional hemoptysis that way surpasses streaking. So there are some similarities, and I learn so much from the CF community--the treatment protocol and research, and I get massive inspiration here to prioritize airway clearance and exercise. I believe that without the knowledge I bring to the table from this community, I wouldn't be doing nearly as well as I am.

I did go to a CF Center maybe a year ago for an evaluation, and we agreed I'm fine to keep seeing my current practice, but if/when I need meds that are not covered for bronchiectasis, I can return and their staff will try to work the system for me.

2) NA

3) I'm voting for reflux like Beccamom. Reflux can trigger spastic closing of the vocal chords, and asthma meds don't address that so well. One thing you can try is blowing out (I know, finding air for that is virtually impossible) with pursed lips to create back pressure that opens the vocal chords. Speech therapists teach this to people with vocal chord dysfunction.