Recent content by PennyBK

Hi Vinny - I signed up for BreatheCon 2018 today (here's a link with info: https://cff.swoogo.com/BreatheCon2018). I saw that one of the breakout sessions is a discussion for LGBTQ members of the CF community. I hope this might be at least a little helpful!

Wishing him a speedy recovery! For me, the pain was worst waking up from the procedure - it got better each day from there. Hoping for minimal pain for him, and that you'll be able to keep your travel plans.

Hi - I had a chemical pleurodesis done 4 years ago following a lung collapse. I was 24 at the time. It was my first/only lung collapse, also spontaneous, and very collapsed. They tried chest tubes for about 10 days before deciding to do the procedure, as my lung was just not "re-sticking" as it...

I switched from Kalydeco to Symdeko a month ago. I have a very rare class IV residual function mutation (not included in any Vertex studies) in addition to DF508, and had been off-label on Kalydeco since 2014. My insurance company surprisingly approved the switch very quickly - getting Kalydeco...

I had a similar experience starting Kalydeco - I also have a residual function mutation and am nearly pancreatic sufficient, though not entirely so. I gained about 10-15 pounds in the months after starting Kalydeco (this was more than 3 years ago), but have settled closer to 5 pounds above my...

I'd recommend doing some reading on modifier genes in CF. I don't know much about it, but my understanding is that researchers believe that environmental as well as genetic factors can lead to very different outcomes in people with the same mutations. Here are a couple links for example...

Incredible results! Does anyone know if they also intend to study the triple combo in people with gating and residual function mutations, plus one copy of df508? I realize the het/min population is the more urgent priority, but it seems to me the triple combo will likely be beneficial to all...

Jeannie85: Talk with her doctors, but I'd suggest doing a sweat test before and after starting it. It's a quantitative measure of improvement that might be useful if you have any issue with insurance companies in the future, and is generally good to know! That's great she is so healthy. Ideally...

I see - check out this link from Vertex (the manufacturer) that lists the 23 additional mutations that it was recently approved for: https://www.kalydeco.com/additional-mutations/ I'd suggest discussing further with your doctor if your mutation is already approved!

I've been taking it since 2014 - I'm sure there are a number of other people on here too. I heard they expanded the label for Kalydeco recently so I assume you have one of those mutations? I have a very rare residual function mutation and am unfortunately still off label (my mutation is too rare...

I've had several PICCs and have not been able to even feel them being removed - definitely has not hurt at all for me and it takes about 5 seconds for them to pull it out. Most recently they put a largish bandage over the site afterward (gauze covered by a sticky, maybe 3-4 inches square) that I...

Thanks! I haven't tried nebulized vanco. I've done nebulized gentamicin which hasn't been easy to tolerate (tightness, hoarseness, etc), but I know that differs for each person and each drug. I get a horrible rash from IV vanco, which we treat as an allergy, but inhaled might be different. I'll...

Thanks for the suggestion. I know my doctor works with ID when I'm in the hospital/doing IVs, and the ID doctors stop by to see me daily when I'm inpatient. But, I've never interacted with them outpatient and I'm not sure whether they're consulted on oral/inhaled options. So I'll ask about that...

Hi all - Hoping for some insights on your experiences with treating MRSA. I'm 27 and have been culturing MRSA for 10+ years. It's the only bug I culture consistently. I've become resistant to most/all oral antibiotics except for Zyvox. Recent cultures have shown resistance developing to Zyvox as...

Hi Martha - I really appreciate your sharing this detailed information. I sent you a PM - let me know if it didn't go through. Thanks! Anna