Cystic Fibrosis News Today Forums | Kathy Gunter | Activity https://cysticfibrosisnewstoday.com/forums/members/dootz/activity/ Activity feed for Kathy Gunter. Thu, 30 Apr 2026 13:40:23 -0500 https://buddypress.org/?v=2.21.1 en-US 30 hourly 2 9cbb62eb47ce24efb0aaccfec851f1d3 Kathy Gunter replied to the discussion Experiences with Alyftrek in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/experiences-with-alyftrek/#post-20039 Wed, 24 Dec 2025 20:43:15 -0600 Reply to Experiences with Alyftrek

I am very curious about Alyftrek. I am on month 4 of Trikafta and it has helped lung function and energy levels tremendously. But, there are some side effects. What side effects have you experienced get better/worse on Alyftrek? Has it helped liver functions for anyone (over Trikafta)?

]]> ccb62ab73f86a21a610ac0fee6ad83f4 Kathy Gunter 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-19364 Sun, 01 Oct 2023 09:37:58 -0500 Reply to What is your CF clinic like?

Stacy, I am so sorry to hear of your situation too (see reply to Kay below). I wish there was a way you could be seen at UNC more often? I have been very curious about their clinic as well. My brother lives part of the year in that area and loves it. It seems to me since Covid, care has slipped quite a bit. Some of that is due to fewer…

Read more

]]> 0c102d19a55d0652a78cfbe4de5a7d2c Kathy Gunter 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-19363 Sun, 01 Oct 2023 09:25:55 -0500 Reply to What is your CF clinic like?

Kay, I am so sorry to hear all that. Truly…and I can relate. I once had a horrible situation at a center and I left. I don’t think I was ever wanted there and clearly I wasn’t (as no one ever reached out to me after-the-fact). Like you, when something was wrong, I tried (as politely as possible) to request help or a change. It was…

Read more

]]> f44f23368bf5474181bad6a025c2fa87 Kathy Gunter 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-19362 Sun, 01 Oct 2023 09:14:22 -0500 Reply to What is your CF clinic like?

William, your team literally sounds dreamy! What I would give for a feeling like that from clinic! My current team is good, but small (one doctor with a new one on his way) at a very small clinic with none of the traditional “frills” of CF clinic. But the doctor, when he is available, is caring, kind and knowledgeable. However, I get…

Read more

]]> 5a530f4fd0050bb962d3220a5959e7e2 Kathy Gunter replied to the discussion A quick COVID check in in the forum COVID-19 and CF https://cysticfibrosisnewstoday.com/forums/forums/topic/a-quick-covid-check-in-2/#post-19143 Wed, 21 Jun 2023 09:39:20 -0500 Reply to A quick COVID check in

I almost never post or reply, but this one strikes a nerve since Covid seems to have dictated our lives for so long now (in large or small ways, depending on each person’s approach).  I am 53 – late diagnosis at age 12 due to rare mutations.  However, I have “moderate to severe” lung involvement now, so Covid quite literally scared me out of my… Read more

]]> a8e3118d0f40cf075446cf346e224097 Kathy Gunter replied to the discussion What do you find is the reason behind most of your hospital stays? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/what-do-you-find-is-the-reason-behind-most-of-your-hospital-stays/#post-19013 Fri, 17 Feb 2023 01:14:25 -0600 Reply to What do you find is the reason behind most of your hospital stays?

Thank you for your well-wishes.  I’m sorry.  I reread my post and I wasn’t clear.  I am not eligible for the modulators due to my mutations, not my age.  Sorry for the poorly worded sentence/confusion.

]]> 571ca82b1f74486a032b6db316e4e37a Kathy Gunter replied to the discussion What do you find is the reason behind most of your hospital stays? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/what-do-you-find-is-the-reason-behind-most-of-your-hospital-stays/#post-19011 Thu, 16 Feb 2023 22:41:08 -0600 Reply to What do you find is the reason behind most of your hospital stays?

Exhaustion from the build up of inflammation and infection?  Honestly, I really feel like I should go in more often than I do.  I have been averaging once or twice a year now for the last 3 years.  Although by sheer Grace I have been mostly stable over that time period, because of covid numbers taking up hospital rooms for so long (and my team… Read more

]]> 30da2961708bdfc3af15c988d44ba581 Kathy Gunter became a registered member https://cysticfibrosisnewstoday.com/forums/activity/p/6802/ Fri, 02 Dec 2022 14:27:42 -0600 1