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Can anyone tell me what happens next please

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11 years ago•9 Replies

I am being referred to the Royal Brompton as there is some shadowing on my lungs in keeping with 'early' fibrosis (shown on chest xray). I had a lung function test at my GP surgery which turned out pretty well. I wondered what will happen when I get to see a specialist. Appreciate an insight. Thanks all.

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9 Replies

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PositiveThoughts11 years ago

Hi, No one can answer the why's and whats next but the main thing is to stay calm and your in very good hands at the Brompton, they have the top accademia in the world of Dr's and Chests I am sure they will advise you and look after you x

11 years ago

Thanks Positive Thoughts. Hard to stay calm. One minute I'm fine and thinking this isn't necessarily PF and then I panic. I am wondering if they do the tests twice to get a baseline and then do another to see if it's progressive. Or can they just tell.

Gidge11 years ago

They can tell a lot from a High Resolution CT scan - if it is early fibrosis,then make sure you take a look at the NICE guidelines issued in June last year, and that they follow up with Pulmonary Rehab and possibly Pirfenidone. Good luck ! Gill

11 years ago

Thanks Gill. I will take a look at the Guidelines. Hoping that it won't be too long before I get an appointment. Not knowing is blooming awful, but knowing could be a lot worse. I need to get my head straight about this. I have spoken to a BLF nurse who was great and pointed me in right direction - I need to keep reminding myself what she said. It's really good to have such kind and knowledgeable people to talk to!

Cressie11 years ago

Hi Rozi,

You'll also almost certainly have a different set of lung function tests to the ones you had at the GP surgery, plus a 6 minute walk. Do hope you get an early appointment and that things will go well for you. Chin up and take care.

Margaret x

11 years ago

Thanks Margaret. It says on Choose and Book it should take 7 weeks which is longer than I thought it would be but it seems to be well worth waiting for the Brompton. What does the 6 minute walk do? What kind of measurement is that?

maggie4411 years ago

Hi Rozi

When I went for my first outpatient appointment at Brompton for Pulmonary fibrosis I underwent a whole bank of tests that morning before seeing the consultant at about 12.30pm where they decided they had a plan. Part of the plan was to have me back in the respiratory investigation ward for 3-4 days to do some further tests which were more time consuming- some overnight. By the end, they had a good idea of what was wrong. After the second visit they had decided that my fibrosis is non specific interstitial pneumonitis (caused by my immune system), rather than idiopathic pulmonary fibrosis (no known cause).

The treatment plans for the various forms of fibrosis are rather different, so these initial tests are pretty important.

All the staff with whom I have had contact have been brilliant- kind, professional & caring.

Good luck with your appointment - you will get the best of treatment.

Maggie

11 years ago

Hi Maggie

That sounds really thorough! The BLF nurse said there was lots of different diagnosis of fibrosis. I am very glad I asked to go to the Brompton - I've only heard good things. I hope your treatment is going well and that you are feeling well. Thank you so much, good luck for the future to you too. x

Linnie137 years ago

Hi Roxie, you can't help but panic , I have a fibrosis it's progressive ,but can be slowed down mine is caused by the environment,I need oxygen when mobile ,wishing you luck xxthat doesn't mean to say yours is progressive just eat well I've gone organic and don't eat meat or dairy or bread ,I feel better for this diet x

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