if you are on steroids, how are you finding it? are you like me struggling not to eat everything in sigh t?! 🤣 this video isn't meant to dissaude anyone from taking steroids (as they are extremely effective, I owe a lot of my lung stability to them !!) but to talk about the realities of being on such a strong medication. lots of love to anyone who might be finding it difficult being on them, hang in there x
Love this video!! Such a vivid insight into what it's like being on steroids and how it affects you, and so well-made. Kind of heart-breaking in moments - I so wished I could give you a hug when you got upset! I'm so sorry you have to be on steroids for so long and I hope it starts getting easier and that you're able to wean away from them soon! Sending so much love xxx
Aw thank you so much hat hat 😭 that all means a lot I really appreciate it - big hug is pending !! thank you for being so kind & understanding as always, it is slowly getting easier which is fabby 🥰 so much love x x
I have question for you over cystic fibrosis and lung transplant. 1 Why do new lungs go into rejection for? 2 what happen if people keep on leave Pseudomonas to infected new lungs what would that happen too them? 3 i have question for you over lung transplant for cystic fibrosis. Can bacterial from old cystic fibrosis lungs infected new donor lungs after lung transplant for being sill being in CF sinus? Cf patient who had lung can that happen . 4 i have question for you over lung transplant For CF .why do people get lung transplant for cystic fibrosis when it not cure CF?
sure! 1 - I don't have much knowledge about it, but your immune system can just reject any new organ that has been transplanted which can cause problems! 2 - I'm not sure what you mean?! But because of the mucus a CF patient's lungs produces, even with a lung transplant you are still at risk from infection (such as pseudomonas) as the overproduction of mucus causes this 3 - I'm not too sure! I do know that the damage caused by the infections in someones lungs will not be there anymore after a transplant has happened - as the donor lungs will not have this scarring & damage. But tbh I'm not sure whether infections can pass from one lung to the other? 4 - If your lungs have so much damage from infection & mucus that you are struggling to breathe, & your lung capacity is so low, then your only option to try & survive may be to have a transplant. Although it does not cure CF, it can help to give people another chance :)
Hello, I have Cistic fibrosis, and I was wondering if you have access to Tricafta, a reletivaly new drug, depending on where you live. For me, it's side effect free and it works really well. It's not the same for everybody, but I think it's worth trying. Keep going!!! 💛
great question! It really just depends on the person & the type of CF you have? for example, I have never had problems with my liver or kidneys (as of yet) but my pancreas doesn’t work properly without treatment. In contrast some people with CF won’t have any problems with their pancreas. The same goes for the liver, kidneys, bowel, just to name a few! You could have any combination of problems with different organs, or only a few - it really depends on the individual person & genetic strain of CF you have. Hope that makes sense! x
