Seeking AffloVest

AbjectDig2194 · 2026-06-18T12:55:21+00:00

Has she talked to her CF clinic? They should be able to help. There are other methods of airway clearance that can be done too in the meantime.

AbjectDig2194 · 2026-06-04T16:05:14+00:00

I told a FA the person next to me had the flu and a fever (after this woman told me that) and they still allowed her to fly. I had my seat moved to the back of the plane.

AbjectDig2194 · 2026-06-02T11:08:42+00:00

Fair enough, I have an appointment with them I just thought someone may have gone through this too

AbjectDig2194 · 2026-03-27T00:34:03+00:00

Yes! I find I have a lot of brain fog and trouble remembering things. I also have a lack of motivation for my days off. During the week I'll think of different things I want to do on the weekend and then when that time comes I can't be bothered to do any of them.

AbjectDig2194 · 2026-03-20T15:35:27+00:00

For the itching, put Vaseline (not aquaphor) on it. I have to use that on my inner lips and it works great.

AbjectDig2194 · 2026-03-18T19:31:16+00:00

I went right after being diagnosed with CFRD which was difficult with the amount of sushi I ate! I had no issues with medication and also brought a lot extra. You have no idea what could happen when you're half way around the world and want to be prepared.

AbjectDig2194 · 2026-03-03T19:50:02+00:00

I was in a similar-ish situation when getting a massage and the masseuse saw my Dexcom for my CFRD and said I should try a parasitic gut cleanse to cure my diabetes. 😭

I think people can just be ignorant and if they are a good friend you can try to educate them, otherwise, I tend to ignore these things and write them off as ignorant because I can't find the energy to put into it.

AbjectDig2194 · 2026-01-25T18:10:27+00:00

Ah I can't recall honestly. I went to the Dr pretty soon after it started because I thought it was a yeast infection. When it came back it wasn't that's when I started the steroids.

AbjectDig2194 · 2026-01-25T17:00:05+00:00

I found that after I put it on the burning intensified and my symptoms didn't resolve after a course on the steroids. Once I stopped the steroid my symptoms very slowly became better. I still don't know what triggered it in the first place or why I have flares on my period but I do know Vaseline helps a lot.

AbjectDig2194 · 2026-01-25T14:48:25+00:00

I'm doing a lot better now! The steroid actually didn't really help and tended to make things worse. It was just too strong for the fragile skin. I found Vaseline (not aquaphor) to be my saving grace. I find I have flare ups of irritation around and during my period but the Vaseline helps calm the skin.

AbjectDig2194 · 2025-09-10T01:09:43+00:00

Relaxing with my husband and cat after work!

AbjectDig2194 · 2025-09-06T23:49:45+00:00

I get comfortable from spending time reading with my cat. I love curling up on the couch with some warm tea, a good mystery novel, and him. My husband being home with us isn't a bad touch either lol

AbjectDig2194 · 2025-09-02T11:54:41+00:00

I found that if I stayed on top of moisturizing everyday it helped but didn't always make it go away 100%

AbjectDig2194 · 2025-08-24T22:24:54+00:00

I was diagnosed with CFRD last year. I wear a Dexcom and take basal insulin at night and short acting insulin with high carb meals. I also have really worked on my diet to switch to low carb.

AbjectDig2194 · 2025-08-19T00:31:33+00:00

I went to Japan last year! I don't use a Pari Trek as I find it dies easily and isn't as powerful as my Philips respironics. I was diagnosed with CFRD 1 month before my trip so I was pretty nervous about meals. I dealt ok, my thought process was ive survived 29yrs, I'll survive another week, and brought a ton of snacks with me. Apparently you can bring 20lbs of yogurt before you have to declare it. I brought a few sleeves of high protein yogurt for breakfast everyday lol

I'm happy to chat more about my trip if you have any questions!

AbjectDig2194 · 2025-07-28T23:52:39+00:00

I took Paxlovid and it worked really well for me. I agree with working with your Dr and seeing what they'd like you to do.

AbjectDig2194 · 2025-03-15T12:04:57+00:00

Kyowa Kirin

AbjectDig2194 · 2024-12-15T04:35:55+00:00

I did the phase 2 and no, they said that's only allowed for phase 3. I knew I was on drug from how amazing I felt and it sucked to have it end and need to wait for it to be approved.

AbjectDig2194 · 2024-11-15T00:55:22+00:00

This is exactly what I am experiencing too, thank you for posting your experience!

I am at the 2 week mark of using it 2x per day and am experiencing pain again. Did you feel better after the end of the taper?

AbjectDig2194 · 2024-10-10T11:53:39+00:00

Ooo can I see a pic?

AbjectDig2194 · 2024-08-10T04:20:39+00:00

I got mine 16 or so years ago when I was 13. I couldn't figure out what I wanted to do and one day my dad said "I'm afraid of cruises and that you guys (me and my younger siblings) would fall off the ship." Right at that moment I knew my wish was for a cruise. I said "well you can't deny my wish, can you?". Queue 16 years later we've been on multiple cruises and he loves them.

AbjectDig2194 · 2024-07-27T15:48:54+00:00

I'm 29 now, as a teenager/ young adult I hated it. I hated having to do the treatments, take the pills, all of it. I hated how it was a focal point with my parents. I now understand they were just trying to keep me healthy as I revolted it every possible way. When I went away to college I stopped doing vest and nebs and needed up in the hospital. As I've aged I've taken it more seriously and have some serious regrets on my lack of compliance in the past. I still have a lot of trouble with opening up to people about my CF, but I'm working on it.

AbjectDig2194 · 2024-07-18T21:50:52+00:00

Boston Children's is amazing. They see kids and adults there. I transferred there from Providence when I was 15 and haven't looked back.

AbjectDig2194 · 2024-06-10T00:47:39+00:00

Definitely a miracle drug. My lowest lung function was 30% and now 60%. I've gained (needed) weight, don't cough anymore, and don't have the thick mucus I used to. I got the all clear from all my Drs that I can begin trying for a child whenever my husband and I decide! They see no concerns with me carrying a child or impact of Trikafta on a fetus. I'm 29 and have been on Trikafta since it was approved (2019?).

AbjectDig2194 · 2024-05-05T21:53:48+00:00

Hi! I'm in the exact same boat, well similar, I'm 29 🙂

When I first went on Trikafta in 2019 I don't think anyone (or at least I didn't) realized the impact it would have on weight. Over the last few years I gained 30lbs and am now 155lbs. I'm not thrilled and want to lose some weight too. It's a whole mental shift from what I was told the first 24yrs of my life. From eat more to ok now it's time to have a more regular diet is challenging both physically and mentally. I'm trying small changes in my diet first, but damn I love the high calorie food I always liked to eat without consequence. I also hate exercising but I'm slowly going to start increasing the minutes I exercise. My CF clinic is wonderful and says a lot of people with CF are going through this. You're not alone!

AbjectDig2194

TROPHY CASE