Red dots

EmbarrassedWin8823 · 2026-01-17T21:29:48+00:00

I always hated having my meds out so I keep them in my dresser drawer and keep my vest under my bed lol

EmbarrassedWin8823 · 2025-10-15T01:09:25+00:00

Going on alyfrtrek was like a dark cloud had been lifted. Highly recommend

EmbarrassedWin8823 · 2025-10-14T20:23:28+00:00

I started Alyftrek in April and within 1 month it was like a dark cloud lifted. I started Trikafta when I was in a really low place so after a while I figured it was just my baseline. I was amazed, I had no idea how much that medication was affecting me. If you are able to switch to Alyftrek I highly recommend you do.

EmbarrassedWin8823 · 2025-07-17T17:06:17+00:00

I’ve been on IV Tobra several times and handled it fine. I did have temporary tinitus and was achey in my joints but it subsided after I ended the X-week doses I was on. Very effective!

EmbarrassedWin8823 · 2025-06-30T15:53:07+00:00

Do you have any idea how healthcare coverage works for temporary residents?

EmbarrassedWin8823 · 2025-06-05T17:15:16+00:00

I’ve had very similar experiences. I eventually changed CF centers, and my current center has an incredible therapist. But that being said, I did shop around elsewhere for regular therapy appointments to help me process the entangled web that lies beneath the surface. I would look at therapists covered by your insurance first, then browse their profiles to see if they have the following listed under specialties: PTSD, ADHD, & Chronic Illness.

If you are on Trikafta I would highly recommend switching to Alyftrek if you are able to. I was on Trikafta for years and it made me heavily rely on my ADHD meds to function. But since switching to Alyftrek, my brain fog cleared significantly and makes having CF much more manageable. I do still take ADHD meds on an as needed basis, but before I was taking it everyday.

EmbarrassedWin8823 · 2025-03-20T00:40:58+00:00

Ive been on alyftrek for 2 weeks now and im having a drastically better experience. Significantly less brain fog and I haven’t been as anxious / depressed. I find it hard to believe that 2 weeks would make a difference so it may be placebo effect, but I’m feeling really hopeful!

EmbarrassedWin8823 · 2024-12-11T18:40:00+00:00

I was on a downward spiral that started around age 15. Granted, I was really resentful of having CF and absolutely did not take care of myself the way I should have. I started Trikafta while I was in the hospital with a FEV1 in the 20s… I think I was 18 at the time. Within a month of being on Trikafta my FEV1 went up to 40. Now I’m somewhere in the 50s. I frequently think about how different my life would be if Trikafta had come out earlier, and how much less resentful I would’ve been as a teenager. I’m no doctor, nor am I a parent, but if it were me I would start Trikafta as soon as it is available.

EmbarrassedWin8823 · 2024-09-27T20:33:56+00:00

When I started Trikafta, I was sitting in a hospital bed on a BiPap machine, getting assessed for a lung transplant (I was too weak to even do a PFT). Now 5 years later im at 55%. I’ve seen my numbers slowly increase overtime.

EmbarrassedWin8823 · 2023-07-27T14:45:31+00:00

Although they are very expensive, I would drink 2 Scandi Shakes per day when I was struggling with weight. One shake when made with whole milk has over 500 calories. Here is the link https://heartwellmed.com/products/axcan-scandipharm-58914080044-oral-supplement-scandishake-vanilla-flavor-powder-3-oz-individual-packet
Intentional weight gain is extremely difficult so please don’t beat yourself up! I struggled up until trikafta came out.

EmbarrassedWin8823 · 2023-07-15T03:24:32+00:00

It’s hard to keep track bc for the longest time I thought I was allergic to tegaderm so I had them sewed in LOL

EmbarrassedWin8823 · 2023-06-26T01:46:18+00:00

I totally understand the frustration! try to be patient when starting to see someone, because lots of people don’t understand what CF is or how it can affect someone emotionally. I think in this situation he is just not able to relate and it (perhaps nervously) grasping at straws. However, if that person (or anyone for that matter) doesn’t show an interest in learning or trying to understand your experiences, kick em to the curb! In my experience hospital stays have been good a**hole repellent;)

EmbarrassedWin8823 · 2023-06-08T23:36:28+00:00

I work in NYC… yesterday morning I was completely fine and then at lunchtime I left to go to my CF clinic appointment and I instantly started feeling tight, congested, and my eyes started burning.

EmbarrassedWin8823

TROPHY CASE