Cystic Fibrosis News Today Forums | Stacy French | Activity https://cysticfibrosisnewstoday.com/forums/members/mayflowers/activity/ Activity feed for Stacy French. Wed, 22 Apr 2026 13:36:41 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 431ef3c1c132b7c68d23341bb63f35c2 Stacy French 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-19108 Fri, 12 May 2023 13:56:11 -0500 Reply to What is your CF clinic like?

My Cf clinic is not for the elderly with CF nor their hospital for CF anyone… the CF ward although newly redone reeks of aspergillus mold.. it is in the masks and the linens and all things that can retain smell.  The building is old and in need of a complete redo.   As a patient, I guess I phone when I think I need to see a doctor… it was… Read more

]]> 03d6a29e7e0a85f9d127d9a91a5a1105 Stacy French replied to the discussion Late CF Diagnosis in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/late-cf-diagnosis/#post-18721 Fri, 30 Sep 2022 18:32:22 -0500 Reply to Late CF Diagnosis

until DNA was found … late diagnosis was not possible.. which is why so many of we the late diagnosis due to rare CF genes were not diagnosed.  It is because I suddenly had aspergillosis grow in me.. then bronchiectasis was diagnosed, ignoring all the childhood and adult issues with sinus and lungs… it was the continual lung issues that… Read more

]]> eb1620904086ab209b03ca8451a2e6eb Stacy French replied to the discussion Aging and CF in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/aging-and-cf/#post-18700 Tue, 27 Sep 2022 19:37:35 -0500 Reply to Aging and CF

Here in the states, it was just approved for me who has a rare gene.. I too was diagnosed late in life.  I just began taking trikafta.  So far my breathing is a bit better, but I still suffer as if I just ran a marathon at times.  I have pseudomonas in my chest and sinus, pancreatitis,  bronchiectasis, aspergillus, and now osteoporosis.. what… Read more

]]> 8556e2359da44b87800aee9ef71fd893 Stacy French replied to the discussion Aging and CF in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/aging-and-cf/#post-18697 Tue, 27 Sep 2022 19:28:12 -0500 Reply to Aging and CF

Sadly for some of us who were diagnosed very late in life.  There remains no useful information for us.  We are not asked to be in studies and we have no place in this other than to aid in drug development by taking cf drugs.  It is sad that this foundation has done nothing to insure the abatement of mold in a local hospital which claims to… Read more

]]> 2019a706b17920ceb8acb58baa885d89 Stacy French replied to the discussion CF and loss of smell in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/cf-and-loss-of-smell/#post-17200 Tue, 20 Jul 2021 19:29:39 -0500 Reply to CF and loss of smell

No ability to smell since 4 yrs ago.   I have my husband season salt and pepper being careful on salt as I have basic taste.. sweet salt hot sour bitter.    It’s cooking by memory for me.  I must always tell restaurants to use minimal salt on steaks or that becomes an overwhelming distasteful event for me.

 

]]> aee3fbbff0e6de8a48bd97f0fee35ea1 Stacy French replied to the discussion Telemedicine One 'Good' Thing to Come Out of COVID Crisis, Doctors Say in the forum COVID-19 and CF https://cysticfibrosisnewstoday.com/forums/forums/topic/telemedicine-one-good-thing-to-come-out-of-covid-crisis-doctors-say/#post-15090 Tue, 12 May 2020 19:49:48 -0500 Reply to Telemedicine One 'Good' Thing to Come Out of COVID Crisis, Doctors Say

I do not believe this is a good way to examine a patient. How any times has an in person visit found an issue that was not why the patient contacted the doctor? These things would never be found via the internet. Not everyone has blood pressure equipment nor a stethoscope. One can not have blood work done. So the question then becomes who… Read more

]]> be34f771ceda36007ef2ba40a05d1dfd Stacy French posted a new activity comment https://cysticfibrosisnewstoday.com/forums/activity/p/246/#acomment-270 Sat, 12 Jan 2019 00:27:56 -0600 at this time, I have to say, many people cannot smell the mold .. it affects me on my face like a film and causes sinus pain. I did call people who could do something and requested they do an air quality test. Needless to say, no one has ever called me back or contacted me as they said they would within 2 weeks. One person said to me,… Read more

In reply to - Stacy French posted an update I am living in the south… the hospital connected to my cystic fibrosis clinic has an air quality issue of being moldy. I have been under the impression that it is dangerous for a […] ]]> ed069966d23ce7b7dbfa6ef2935b17f2 Stacy French posted an update: I am living in the south... the hospital connected to […] https://cysticfibrosisnewstoday.com/forums/activity/p/246/ Fri, 11 Jan 2019 19:14:01 -0600 I am living in the south… the hospital connected to my cystic fibrosis clinic has an air quality issue of being moldy. I have been under the impression that it is dangerous for a CF patient to be subjected to a moldy environment. I have CF and have had aspergilosis in my lung and have had aspergillus mold in my sinuses. Does anyone… Read more

]]> 2 27fdc07793cfa20e7ee7b8cf7962c326 Stacy French became a registered member https://cysticfibrosisnewstoday.com/forums/activity/p/98/ Thu, 10 Jan 2019 17:23:53 -0600 2