So much suffering; try not to lose hope. Easier said than done I know

Congratulations I have cystic fibrosis myself and I'm turning 32 in may feeling healthy and smashing life like urself definitely true inspiration for people and giving people an insight too cystic fibrosis respect too u Congratulations on turning 31 too 😀🥳

It sounds like you made the right decision

The nhs is useless with chronic illnesses. No one is ever truthful, there are the few good people but mostly it’s them just trying to cover their backs from everything they do wrong

I know different situation but I take an oral chemotherapy drug for a rare form of leukemia. Also a chronic, long-term disease. I'm 26, I was 19 when I was diagnosed. I mention this because of the medications I take. I understand the needing to stop medications or switch because of side effects and people giving you grief about it. They don't know unless they're in your shoes!!! Keep doing what you think you can't do!! ❤

Hospital food is meant to make you sicker. Wishing you the best, be safe and well ❤

People with cystic fibrosis must stay away from milk, potatoes, carrots, wheat, gluten, coffee, cookies, cake. Eating these can cause mucus plugs and thicken your mucus even more which makes it difficult to digest and breath. I have cf as well amd its been quite the journey. Ty for your channel. I suggest buying a chlorite quartz crystal and meditate with it daily. Ppl with cf have a cholride channel deficiency where it makes our mucus abnormally sticky. The chlorite quartz will aid you in openning your airway/ respiratory system and lungs to make it easier to breathe. This happens when you hold the crystal firmly and set intention vocally or even in your mind " chlorite quartz please help me breath clearly and smoothly, plz remove all thick mucus out of my nasal cavity, nasal passageway, my ear channels and any mucus and excess air that is causing an obstruction to my organs' function, and so it is"

Dang girly...I was hoping this would be an option for you and that you hadn't heard of it. Damn... if you can work up to 10.5 grams of myo inositol twice a day, that may bypass that reaction. Then again, maybe not. Jeez, that sucks... Edited to add: I don't have CF. I have chronic BOOP but it's a totally different thing. I know this is way old but I just wanted to tell you that your don't owe anybody anything. Everybody can't tolerate penicillin but that doesn't make the people who can't take it wrong or bad or anything else. That's not how works. Edited one more time to add: You're so chronically malnourished that you are almost certainly deficient in that vitamin. I can't remember which one it is but it's a B vitamin. Look it. It stabilizes severe mental issues that are driven by imbalance in the brain. It might be worth at least looking at it.

I’ve had way too many similar experiences with medications and I so appreciate this video. I don’t have CF but I have hypermobile-type Ehlers Danlos Syndrome and about 20 comorbid conditions. Topiramate was possibly my worst experience. Although I got down from 22 migraines a month to just 8 I was having severe cognitive issues like aphasia and slow processing speed, apathy, tachycardia, etc. and my doctor wouldn’t listen to me, telling me to just stick with it a little longer, and a little longer, and a little longer. I didn’t get instructions on how to taper off until my regular neurologist came back from maternity leave, 4 months later. Then there was Corlanor and fludrocortisone for my POTS, L-Methylfolate for MTHFR gene variation, clonidine, melatonin, and the list goes on and on. All similar stories where no one warned me about the side effects and paradoxical reactions I was having and doctors being so ignorant about what I was experiencing. I remember an ophthalmologist of all people saying the most validating thing about things like this, “even if you’re the only patient who has ever experienced this side effect, you’re still experiencing it, it doesn’t matter if it’s not listed in the leaflet” or something along those lines and as someone with a complex systemic condition that means I react differently to things than other people, I REALLY think that needs to be said more often.

You & Haggis make a lovely couple here, who's the geezer that keeps photo bombing?. Have a super Christmas there you guys x.

Oh that Nebulizer bit brought back some memories from 20+yrs ago when i used to care for my Nephew who has severe Cerebral Palsy, he would rock back 'n' forth on his knees on the floor nodding his head in excitement waiting for the mist to come through the face mask. Also loved the bit with your daughter as reminded me of my sister or nurse showing me how to get my Nephews meds prepared. It actually hit me this video but in a lovely way and will wish you and your lovely family there a wonderful Christmas and a happy new year. Thanks for sharing J...🤗

Your immune system is shot. Rebuild it. Change your diet. Medication is slowly killing you.

God bless you. Your videos help us to truly appreciate good health and to show concern for those who face daily challenges. Be well. 💕🙏

Lovely. Nice video thank you. I know lots of PWCF in solid relationships and with kids too. ❤

Wishing you and your whole troop there the very best and a great Christmas ahead. Loving your dogs name there - Haggis, when i rehomed Smudge 8yrs ago i renamed him right in front of his old owners who couldn't handle him so being Scottish i gave him his new name Baxter. I shall check out your other videos, Thanks for sharing.

Really good video

Beautiful

Aww perfect couple. Definition of real love ❤️

Lol, the menfolk keep things interesting 😅

Lol, y'all are nuts

Amazing video has always Jet, lovely to see kira has been down and the kids decorating the tree, hopefully it survives haggis 😂, an that advent calendar looks amazing!! Much love to all 💚🖤 you got this bestie

Sending you lots of love and healing from the Emerald Isle .. happy crimbo 🎄🎁🎁💝💝🎅🇮🇪

It’s great that you keep smiling. You have a load to cope with. Proud of you x

If you can get a bipap with nasal pillows, that might make you feel much, much better. The only caveat is that because your lung function is so poor, there's a possibility that being on it may make taking it off feel...unbearable... so, definitely something to keep in mind. Just, don't let it become a cascade of intervention thing because if you end up with a trach, you'll be stuck with it until you get new lungs. You get the coughing fits to puking too? Jeez, that's a bummer. I hope you feel better.

My stomach would jump out and run from me with antibiotics like that. I hope you're feeling ok.

You’re such an inspiring person Jet!

Dang girly. I thought they had come out with new treatments and therapies to prevent all of this. You take it in stride but it sucks that you have to.

EXSCUSE ME WHAT? THATS WHATS BEEN HAPPENING TO ME?

Keep your videos coming Jet love watching them regardless of what you do, keep on rocking little rockstar 💚🖤💚

It’s not tedious & boring … love the videos 💝💝

You know what? Even if you don't put on anything nice, you don't smell like onions. I mean, I like to eat onion in savory dishes but I don't want to smell them coming from my armpits.

This was such good post to watch . Xx

Rifampin, ethambutol, azithromician and Clofazimine all make for very unhappy bowels 😢 I’ve been watching you for about a month and although I can’t relate to CF, I do have bronchiectasis and non tuberculosis mycobacterium avium complex. I’ve kept the panty liner business in business for those oops coughing days 😅. Your a brave soup Jet with a wonderful family. ❤

Thanks to everyone for watching and Subbing to my channel! I’m now at 1k which is a huge milestone for me!🎉

It's been a while since I had to deal with feeds but the higher the sugar or fat the more my bowels complained. Would running it slower overnight be an option? Edited to add: Honestly, I'm impressed with the way you are handling this. You're a trooper...