Royal Brompton Second Opinion | Cystic Fibrosis life

Im back after a longggggg hiatus from KZbin. It’s just a small taster video for now to see how I get on with making videos and having the energy and time to edit them but short little vlogs will suffice for now! I want to continue to document my life on KZbin not just for you guys but for my future self (hopefully!) and for my son to look back on.
I will do a video soon outlining why I needed the second opinion in the first place but it’s a long story that started back in 2022! Thanks for watching if you do and please like & sub to support my channel in raising awareness for cystic fibrosis.
Jet xoxox

[@MattJohnathan1987]

Bless you Hun you really are an absolute trooper and inspiration to us all we all love you Jet 💙💚💙💚

[@toploaded2078]

Love the bipolar hair!

[@Tel34542]

So glad your home, little P is such a Mini me! I love your vidoes for insight and to see your resilience and strength. But obviously hate what your going through. Please take it easy at times lol its so hard though when you want to live and make memories with little P. Thoughts and prayers. X

[@LGfan1974]

Hi Jet. So interesting to hear about your experience at the Brompton and with Kaftrio. You truly have been through the wars but are a true warrior, so keep up the good fight and kick CFs ass! I am a 49year old CFer who also suffers from chronic cluster headaches, migraines and IIH, which is a form of Hydrocephalus. I have been with the Brompton since 2006 and have just moved to Exeter and had my 1st appt with the Exeter CF team today. I was amazed at the lack of CF signage anywhere in the Royal Devon and Exeter hospital (the very opposite of what you experienced at Brompton). I watched/listened to your KZbin video abt the difficulties you have had with Kaftrio and I have had some strange things happening to me too but had put it down to the issues I have with my head. But after listening to your issues I wonder if Kaftrio might be adding to the intensity of what is going on. I would very much like to talk to you about your experiences as I have been looking for any CFer who might have major problems with migraines, cluster headaches and/or Hydrocephalus (build up of liquid and pressure around my brain...my head doesn't like my body coughing much). Unfortunately, prior to taking Kaftrio, my CF and my IIH were always at war with each other to see who would get more attention...my head or my lungs...my head ALWAYS won and still does.) If you wouldn't mind chatting/messaging with me on Facebook DMs to begin with, just look for Lisa Streak and that's me. I do tend to sleep during the day and night to help manage my head pain, so I may not answer you immediately. I wish you luck at the Brompton. And I hope and pray that the new changes to your treatment help give you a new lease on life and give you more quality of life to spend with your little one, family and friends. God bless and as I said earlier...keep kicking CF's butt...HARD!!!😉🙃👍

[@b19bst55]

I am under the Brompton and I can’t fault them at all. I’m actually in here now for treatments. I have been under them for 30 years now since I was 14. I really hope you’re on the mend . I am pretty advance in cf problems like yourself . Diabetes for 15 years now , liver issues , bone issues , on watch and wait transplant list as 18% was my functions. Now mid 40s due to kaftrio but still on an oxygen concentrator .wouldn’t even be here now if not for kaftrio as covid hit for my assessment so was a year delayed . So I totally get where you’re at . Any how look after yourself and stay strong. We are cf warriors … x