Cystic Fibrosis News Today Forums | Kay | Activity https://cysticfibrosisnewstoday.com/forums/members/dernancourt/activity/ Activity feed for Kay. Wed, 08 Apr 2026 12:58:54 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 5078686936980735bca17549f3228b75 Kay replied to the discussion Have you experienced PTSD from medical trauma? in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://cysticfibrosisnewstoday.com/forums/forums/topic/have-you-experienced-ptsd-from-medical-trauma/#post-19657 Tue, 27 Aug 2024 22:14:36 -0500 Reply to Have you experienced PTSD from medical trauma?

I hear you William. I am in the PTSD camp too…

]]> 5f40c613f504a6fe0fd54b803fffd95f Kay replied to the discussion Have you experienced PTSD from medical trauma? in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://cysticfibrosisnewstoday.com/forums/forums/topic/have-you-experienced-ptsd-from-medical-trauma/#post-19656 Tue, 27 Aug 2024 22:05:02 -0500 Reply to Have you experienced PTSD from medical trauma?

In Melbourne or Sydney?

]]> d78dd74ac519bb8c973abf08d4a6e88d Kay replied to the discussion Late diagnosis or misdiagnosis? in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://cysticfibrosisnewstoday.com/forums/forums/topic/late-diagnosis-or-misdiagnosis/#post-19627 Tue, 30 Jul 2024 23:06:43 -0500 Reply to Late diagnosis or misdiagnosis?

Hi William,

I was diagnosed at 54yrs old but sadly not by the doctor treating me for advanced pulmonary NTM (kansasii not MAC). My lungs have cavities .. bronchiectasis .. parts with “ground glass”. That’s my worst symptom. I am very thin but have decided I don’t care anymore. I cannot control it.

Actually, what I have decided – an…

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]]> f7e79ea4931b4239626cedd8ef7b32a7 Kay replied to the discussion CF is more than just lungs in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/cf-is-more-than-just-lungs/#post-19533 Thu, 14 Mar 2024 23:37:40 -0500 Reply to CF is more than just lungs

Hi Tim,

Does your wife attend a CF clinic? Does the mutations she have – are they normally tested for in the full screening? What was her sweat test result? What was the trigger for the diagnosis?

The reason I ask is…. I was diagnosed at 54yrs. I have one common mutation 5T and the other one is in the great unknown. They said it was…

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]]> a73ba09b6da94574a7eb8966dd8e5a01 Kay replied to the discussion CF is more than just lungs in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/cf-is-more-than-just-lungs/#post-19527 Tue, 12 Mar 2024 21:39:12 -0500 Reply to CF is more than just lungs

<div>Are you in a clinic in Australia? Would love to DM you if you are…</div>

]]> 22ea63112f5520324f9b85687833fe93 Kay replied to the discussion CF is more than just lungs in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/cf-is-more-than-just-lungs/#post-19526 Tue, 12 Mar 2024 21:37:56 -0500 Reply to CF is more than just lungs

Tim – Just wondering if you are in the 100 Australians?

]]> 16e5f011522a830071117c9e58b89d19 Kay replied to the discussion What are you looking forward to in 2024? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/what-are-you-looking-forward-to-in-2024/#post-19431 Thu, 07 Dec 2023 23:04:43 -0600 Reply to What are you looking forward to in 2024?

Oh wow Gina – thank-you!

I think I fall into that category of CF. Diagnosed at 54yrs old a few years ago now. What a journey it’s been indeed. I’ve got one known – common mutation (5T) that is considered to be trivial. The other one? Well…. they said,”No point testing as it won’t change your treatment”. So whatever it is – it’s the…

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]]> 6c099b6631c157dd973eff8ded646e43 Kay replied to the discussion What is your CF clinic like? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-cf-clinic-like/#post-19390 Wed, 01 Nov 2023 07:28:37 -0500 Reply to What is your CF clinic like?

Hi Kathy – Thank-you so much for your message. It means a lot to me. I’ve decided for now to forego my clinic and I have not attended early 2023. Randomly offering me Pulmozyme after 2 years in the clinic and then telling me I might find it hard to breathe while taking it…

Well, I can’t find anywhere on the internet that says that’s…

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]]> c29141768b87ae734bbda6b40fcf7447 Kay replied to the discussion What is your CF clinic like? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-cf-clinic-like/#post-19345 Fri, 22 Sep 2023 08:17:37 -0500 Reply to What is your CF clinic like?

Oh and I forgot the best part. My wonderful, pointless bronchoscopy that I collapsed afterwards and met the Medical Emergency Team (MET) … it didn’t stop there. Hospital-acquired pneumonia followed very, very swiftly and I spent 3 weeks in a hospital isolation room staring at a painting of a pathetic solitary bird on the edge of a…

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]]> 0fade77eba32341f2809b5e723636c1d Kay replied to the discussion What is your CF clinic like? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-cf-clinic-like/#post-19344 Fri, 22 Sep 2023 08:08:57 -0500 Reply to What is your CF clinic like?

Stacy – I have to say that I agree with you. I am late-diagnosed as well. I had a sweat test of 60 and then follow-up of 52 (after not eating anything salty for a week in desperation!!) The whole saga began with advanced pulmonary NTM. [Advanced is where cavities form in your lungs .. it’s end stage.]

For me, I was treated by a…

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]]> f3b5a3032f9dc5cfa51011b5344be083 Kay became a registered member https://cysticfibrosisnewstoday.com/forums/activity/p/7270/ Wed, 30 Aug 2023 13:31:03 -0500 0