Diagnosed with PF on CT Scan

[Menomaniac1]

Hi I’m panicking because I received a CT scan result on the NHS Mycare app today that tells me that I have pulmonary fibrosis and Traction Bronchiecstasis. I haven’t seen a respiratory consultant yet so don’t know the severity of this. I was sent for the scan by a Rheumatologist who is investigating me for something else, he noticed that I had a crackly chest so sent me for an X-ray then a follow up CT scan. I’ve just been off work for two weeks with a chest infection and was pretty ill but anti biotics seem to have worked . I just wonder if there is any advice on where I can get info on this because everything I’m reading is really scarey

Thanks to anyone who replies 🙂

[JHutton1994]

actionpf.org/information-an...

They also have a support line which you can call.

[PaulineHM]

Hello,

What a mixed blessing these apps are when it comes to reading test results ?

Best try not to panic and worry yourself to death until the scan is read and interpreted by a respiratory consultant who is familiar with all things lung and is plan is developed to support and treat you.

So is there a referral to such a respiratory consultant in place ? If not do ask for one.

In the meantime you can speak with the Asthma + Lung UK helpline. They have specialist respiratory nurses you can speak to and talk through your concerns with.

Let us know how you get on won’t you.

Go well

Pauline

[Suzie42]

Hi, if your rheumatologist hasn't already referred you to a respiratory consultant after seeing your ct scan.....phone his/her secretary to find out, or simply see your or phone your gp and ask for a referral to respiratory consultant asap. You obviously want answers soon. I hope you get seen quickly. Take care

[Izb1]

Well done to your rheumy doctor for spotting your condition and acting quickly. If you can, get them to refer you to a specialist consultant so you are not waiting too long. I do think lung problems come with autoimmune diseases but it always comes as a shock when diagnosed. I hope you get seen to quickly and get a clear idea of what your condition is and what treatment they can offer you x

[Alberta56]

Try not to panic. You can live with bronchiectasis (some of us do) and research is starting into pulmonary fibrosis. Finding out what you've got is the first step to dealing with it, to help you live the best life you can. Best wishes. xxx

[peege]

Hello, firstly as others say its essential to have a referral to a respiratory consultant - general respiratory consultants are not experts in bronchiectasis or Pulmonary Fibrosis so you need to look up your nearest (preferably University) hospital for names of consultants who specialise in bronchiectasis and PF and request a referral to them. A call to the helpline 0300 222 5800, 09.15 to 5pm, Mon to Fri choosing option 3 would be very very beneficial for you, they're professionals who'll give you guidance on the best way forward, questions to ask etc. Do give them a call ASAP.

In the meantime the NHS website is very informative indeed with a massive list of ailments, their symptoms and British treatments (if you're in the uk)

Secondly using simple breathing techniques will help keep you calm ie Deep Diaphragm Breathing, it's marvellous at calming panic/stress - and stress is the last thing our bodies & poorly lungs need.

Thinking of you, I hope you'll come back to let us know how you get on, there are a few members with PF and more members with bronchiectasis as well as other lung diseases.

[PW_R]

Beside your current chest infection have you been having symptoms?

[Burghy]

also have been diagnosed 5years ago I have been put on medication the only one that will help and I am ok still crackles but slowing my progress but I am 75 so I don’t expect miracles good luck it’s not the end of the world asi am sure that’s what you feel.

[Ern007]

I have pulmonary fibrosis and emphysema as my lung complaints - no Bronchiecstasis as you and others have on here.

I have found my GP the fastest way toget me referred - My lung scarring I am used to, I have had it for years and has progressed slowly. try not to panic and get referred,

[Menomaniac1 in reply to Ern007]

hi thanks for this I will be phoning my gp this week to sort out a referral

[AsthmaandLung Administrator in reply to Menomaniac1]

Hello Menomaniac1

Just reinforcing what the members have mentioned, that you are very welcome to give our Clinical Team a call for a chat. They can talk through the diagnosis and advise you on the right questions to ask your Health Care Practitioners.

asthmaandlung.org.uk/helpline

Best wishes

Helpline Team

[Patk1]

All the best in getting a quick referral so u know what exactly yr dealing with+ how to proceed x