Been on steroids for 5 weeks due to shadow on lung . Ct scan showed signs of ILD.Was told i had 'fluffy' lungs at my hosp appointment . Had symptoms of breathlessness and fatigue for about 6 months beforehand. Got to say i was terrified, never had any problems with breathing before and a few times i thought i was going to die . So was actually happy that i knew what was wrong ! Then get even more terrified by google 😮Had another xray last week, theres just a slight difference with the 'fluffiness'. Iv to stay on steroids for another 4 months ! Tho iv got to say thank god for steroids ! I feel normal and can breathe . Im totally traumatized by the whole thing though. Iv got 2 kids and the thought of leaving them terrifies me . Of course im so grateful its not cancer . Has anyone had anything similar ? Did steroids work ? Thanks x
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You might want to ask your doctor about prescription for calcium and vitamin D3 (actually ask for a vitamin D test to make sure you are not deficient any way. I am saying this because oral steroids can affect the bones so they may need a bit of help while you are on the steroids.
Not sure how much information you have already been given but I would say you will need both the annual flu shot each year and the pneumonia vaccine, again speak with your doctor. Perhaps you have been referred to a pulmonary rehabilitation course, that is something else to ask your consultant / doctor about.
All this information and more can be confirmed by talking with one of the nurses on the BLF helpline.
Got docs app tomorrow so will ask about the test. I feel so positive after every hospital app. But then the doubt and fear creeps in . And i forget what the doctor's actually told me ,it gets all jumbled . Think a call to the helpline would def be beneficial, so thank you !
This is just the start of this journey so need all the help /advice i can get .
Can someone go with you to your appointment? If not, or if you prefer not, you could take a notebook and pen to write down what the doctor tells you. I find I can't remember things I've been told by the doctor, either it gets jumbled in my mind or I doubt myself about whether I've remembered correctly. Wishing you all the best for your appointment.
Its my gp I'm seeing tomorrow to stock up on steroids . Im just as bad when i come out of there, i forget everything hes told me ! A notepad's agood idea . My next hosp app is in sept 😮 im just hoping and praying the steroids work and i get better .I have another lung function test and a 24 hr ecg thingy .(sorry cant think what its called )🙄next month .
I cannot go back to the breathlessness and feeling so ill. Knowing that may happen is hard to take . Im usually an optimist but all this palaver has knocked me sideways. But reading on here how people live with lung conditions has gave me kick up the bum ,i need to stay positive ! And stay off google .
Don't believe everything you find out when you Google.
Do go to the British Lung Foundation site because there you will find a massive amount of help. Whilst on the site look for a Breathe Easy support group near you. If there is one you can go along and meet lots of friendly people who will help with all those worries.
Meanwhile don't say sorry for rambling, sounding off or just asking questions on here. Even if you think your question is daft or your worries trivial, we wont. We all started out not knowing anything about our lungs, how to cope. You are among friends here.
Google is the devil. I cried every night between the ct scan results and my first app at the respiratory clinic . Terrified is an understatement ! I find reading about real people on here has helped a lot.
I'll look out for the suport group. Would be good to have someone to chat to .
Ive became obsessed with my lungs ! I'll never take my health for granted again.
Thank you x
Welcome to the forum, I'm sure you'll find plenty of experienced people here ready to spring to your aid. 🙂
Don't worry about it, we love hearing about lungs and steroids here. 🤗 Actually, the more you talk about them the lesser they seem important amongst the other interesting stuff you'll find. 😉
I always print out a list of questions out for my consultant appointments. I leave a space between them so he can write any info down for me.He is always happy to do this. My brain goes to mush too!! I too am obsessed with my lungs and have learnt a lot about what damages them .I try very hard to avoid all these things and wish I'd have known all this year's ago!!
I will be doing that from now on.Brain lile a sieve!And yip ,mush is a good word!
Its an awful feeling having to think about breathing . Its hard to explain to someone who hasn't gone through it just how awful it is .
Hindsight is great eh ? I never dreamed anything like this would happen to me . Iv put off getting fit ,eating healthy for years . Its took this to make me do it .
One thing iv bought is an oil diffuser with eucalyptus essential oil. Read that eucalyptus is good for lungs . My house is so stuffy ! Dont know if it works but my house smells nice lol
Great replies above. Don't panic! If you are feeling better on the meds then you are well on the way to getting things under control! One thing to be aware of- lung problems alone can trigger anxiety and so can steroids. If you are feeling v anxious and stressed these may be part of the lung issues. Seek helping from a GP etc if the anxiety keeps increasing. Best wishes.
Hi ! Youre right,I cant stop over thinking everything ,going over it all in my head . Though the anxiety has went down the less steroids I'm taking. Im on 4 a day just now for another week ,then tapered to 1 over the next 4 months . Im hoping because its a lower dose i will be able to chill a bit. They definitely make you feel a bit jittery to say the least.
Thanks so much for all your replies , its made me feel a lot better . I just need to turn my brain off and get on with things because i do feel like my normal self(sort of ) again . Thanks x
Steroids can be dangerouse, I suffered with cronick bronchitis, 2 times a year over 5-6 yrs. I was overdosed with them,in hospital,in Thailand. Had them introvinus and tablet form. I was a big musel guy all my mustels in my legs, arms chest got eaten away, had difficulty getting up the stairs. I refuse to take steroids now. After what they did to me. But UK hospitals and the doctors are more knowledgable than Thai doctors, I believe.
Not had it since packed up smoking last September 16th. Feel new man.
That sounds so awful . A friend told me not to read about the side effects . But of course i had to . It is a scary read but i think when the good out weighs the bad they obviously do a good job . Think iv def had anxiety ,but im a worrier anyway. When i was on 40mg per day i was def feeling 'high'and very jittery and shaky. But apart from that i feel good . In a month or so i'll only be on 1 5mg tab a day . And everyone reacts differently i suppose .Im so sorry you had that experience with them ! Especially when you were so fit . Glad you now are feeling so much better as well x
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