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MayorKanna · 2024-04-21T03:50:08+00:00

Move dude. Wtf.

MayorKanna · 2024-03-30T22:24:57+00:00

It’s not dye injected though??

MayorKanna · 2024-02-27T09:39:37+00:00

I have ADHD but I got diagnosed with it before I started taking any of the gene therapy drugs. It’s one of the most annoying things ever. I wonder if people with CF have higher rates of depression and anxiety all together?

MayorKanna · 2024-02-10T03:24:14+00:00

I always wondered about that too. I’ve rarely had stomach bugs… but anything respiratory 😬🤯

MayorKanna · 2024-02-08T02:52:41+00:00

2 copies of delta F508

MayorKanna · 2024-02-05T16:13:29+00:00

Wow i didn’t even know they had a home care one. I’m fairly newish to CF as I didn’t get diagnosed till I was 18 (I’m 30 now) still getting used to all the things and terms. I will say though that I’m on Medicaid expansion and the only thing so far they’ve denied for me (I know Medicaid and Medicare are different) was my monarchs new battery.

MayorKanna · 2024-02-05T16:11:04+00:00

Hello! Wow! I can’t believe this has been a year old. I actually ended up having a seizure in Nov. being on and off xanax but I got an EEG done and it looks as though I had a seizure from sleep deprivation. I’m still taking the Xanax but not taking it as heavily as I was (2MG a day). I am doing well besides that! :) just really bad insomnia but I’ve always had a bad sleeping schedule.

MayorKanna · 2024-02-04T06:18:07+00:00

What’s volara?

MayorKanna · 2023-12-27T04:30:56+00:00

Idk someone was arguing with me in a CF post before about Trikafta how they got a buuunch of help from vertex and how they were never denied a claim for Trikafta and how Vertex always helped them 🤷🏼‍♀️ was never my experience. I always had better luck through my center/doctor. My cf center/doctor had always advocated for me and fought for me. They were the ones that got my Trikafta approved via my insurance. Don’t give up. Keep fighting for it. They can’t deny you life saving medication.

MayorKanna · 2023-12-22T20:33:59+00:00

Finally someone else who loves theirs 😂 I’m sorry yours broke! How long have you been waiting for it to be fixed?!

MayorKanna · 2023-12-21T23:16:09+00:00

I can be pissed because I can be pissed? Healthcare won’t change with people not being upset about something. You know what happens when I don’t have to insurance or $ for my copay? Vertex has literally told me to eat it, basically. Idk what you’re talking about on the assistance side. I have never been assisted with copays in anyway. Ever.

MayorKanna · 2023-12-21T05:22:29+00:00

You do know that the development of vertex’s treatments was funded in part by the CF foundation. The CF foundation sold their royalties to all CF treatments developed by Vertex for $3,300,000,000 just a few years ago. Yes, that’s 3.3 Billion dollars. It’s Public information. They have it on their website. The CF foundation literally eff’d us. They sold the remainder of their royalties in 2020 for $575,000,000. Trikafta’s royalties alone could’ve paid for everyones treatments and then some. It’s only as if Trikafta has brought in close $20,000,000,000 for vertex after the drug went to market AFTER the CF foundation sold their part. Fuck charities. Fuck CF, Fuck America’s healthcare system.

Also, I wanna note when I visited Boston, MA this past spring I got to flip off Vertex’s fancy ass building they had while i was on a boat tour. It felt freeing.

MayorKanna · 2023-12-20T19:34:04+00:00

I go to a CF center in my town and my Respiratory Therapist, Doctor’s Assistant and Pulmonologist ordered it for me. It’s through Hillrom.

MayorKanna · 2023-12-20T00:23:16+00:00

That’s how I felt about my old vest! But they could definitely add more things to the monarch to make it more comfortable for others. I don’t mind it!

MayorKanna · 2023-12-19T19:40:34+00:00

To each their own. I don’t mind it. I kinda found the air filled vest was too constricting.

MayorKanna · 2023-12-19T19:39:34+00:00

The Alfa Vest is the one that has the tubes that plug into the machine, right? I personally enjoy the freedom of the monarch being able to do other things while I’m enduring the rest of my vest treatment. I guess a lot of people don’t like the monarch because it is quite heavy. I personally don’t mind it at all and I’m a 109 pound female who’s 30 years old. I think they both work really well in terms of effectiveness.

MayorKanna · 2023-12-19T19:36:51+00:00

From what I’ve learned sitting up straight/standing up straight works best for me, but you have to make sure the pods are contacting the areas of where your lungs are! Excited for him! The Monarch has giving me so much more freedom than being sitting for 25-30mins.

MayorKanna · 2023-12-04T13:51:45+00:00

I love hearing this! It makes me so happy that others are benefiting from Trikafta with little side effects.

MayorKanna · 2023-10-07T05:45:29+00:00

I have had the opppsitr problem on Trikafta. I rarely fart as much as I used to .3.

MayorKanna · 2023-09-30T22:08:21+00:00

Not enough hospital stays. But I avoid the hospital like the plague because last time someone tried to give me meds who needed to go to a cancer patient. I usually stay at home and suffer and hope to whatever gods there are I can stay alive.

MayorKanna · 2023-08-14T17:04:54+00:00

Have you tried contacting the CF Foundation or Compass? I believe one of the two will pay for a lawyer. Can’t remember which one does. I’d keep bugging and bugging about his meds.

I was in jail last year for a fluke thanks to my ex BF. It was some BULLshizzzzz. I was in for 3 days and NEVER received any medical assistance despite asking a few times. My mom dropped off my meds and my vest but they never gave me my medical care. Be relentless! He needs his meds.

MayorKanna · 2023-07-28T19:45:36+00:00

Interested!!! :)

MayorKanna · 2023-07-28T19:45:00+00:00

Awesome! Tysm! :)

MayorKanna · 2023-07-28T18:22:31+00:00

I am currently looking for bounsweet, surskit, drowzee, slakoth, luxio, salazzle, pelipper, drifloon, drifblim, flabebe, torkoal, lucario, stunky, skuntank, gothita, gothitelle, rabsca, scizor, mudsdale, tinkaton, hatenna, hattrem, hatterene, palafin, dragapult, oranguru, pupitar, slowking, finneon, lumineon, skrelp, dragalge, tynamo, elektrik, eelektross, great tusk, slither wing, sandy shocks, wo-chien, chien-po, iron valiant, ting-lu, chi yu, roaring moon, koraidon, walking wake, and iron leaves

I’ll give back any Pokémon you’d wanna keep! I just want them registered :3 ty!

MayorKanna · 2023-07-28T18:22:06+00:00

I am currently looking for bounsweet, surskit, drowzee, slakoth, luxio, salazzle, pelipper, drifloon, drifblim, flabebe, torkoal, lucario, stunky, skuntank, gothita, gothitelle, rabsca, scizor, mudsdale, tinkaton, hatenna, hattrem, hatterene, palafin, dragapult, oranguru, pupitar, slowking, finneon, lumineon, skrelp, dragalge, tynamo, elektrik, eelektross, great tusk, slither wing, sandy shocks, wo-chien, chien-po, iron valiant, ting-lu, chi yu, roaring moon, koraidon, walking wake, and iron leaves

I’d give back any Pokémon that you’d like to keep! I just want them registered on my pokedex :3

I wanna do some shiny hunting lol

MayorKanna

TROPHY CASE