frightend

[blackscooter]

I was diagnosed with pulmonary fibrosis and emphysema. From an 8 pm phone call to the next day at 5 pm it was all sorted inhaler oxygen the lot. that was in May now in September I don't know what stage I am in or how much of my lungs have gone, I need a lot of help with oxygen to breathe there has been no aftercare, I begin to think my file was misplaced, and I don't know how to plan whatever future I have left I feel I'm walking in the pitch black and don't know when I reach the end.

[peege]

I'm so sorry to read about your plight. If you're in UK it would be an idea to call this forum's helpline on 0300 222 5800, office hours. Ax well as counselling and benefits advice they have respiratory nurse advisors who can give you qualified guidance on what you can do to help your situation.

Hopefully members with PF will be along soon (although the forum is fairly quiet at weekends).

I wish you the very very best blackscooter. Peege

[blackscooter in reply to peege]

Thank you I will do that, ifind a lot of the time people hear what I say but they dont listen.

[d0ttysslave in reply to blackscooter]

Hello Blackscooter,

I echo Peege's sympathy. It sounds like you are experiencing a lot of distress and have had some medical attention, but you need more support and some fundamental answers. With the caveat that I am certainly not a medical expert, and I know nothing about your case, I would say that you should have had tests such as a spirometry test and/or a CT scan to secure the diagnosis, and to assess the scale and damage. It may be that you are on a waiting list for these things. You certainly need support, perhaps from your GP's surgery. Please call them and request an urgent consultation with the GP, and ask if you are on a waiting list for a spirometry test and/or scan.

Please also take Peege's advice and contact the helpline.

[blackscooter in reply to peege]

Thank you very much I will do so, I am trying to see a GP after the bank holiday and take it from there

[Alberta56]

I hope you can get the support you need soon. You've had 2 pieces of sensible advice. Your surgery should be able to tell you the results and the meaning of any diagnostic tests you've already had, but I'm afraid one thing that you learn on this forum is that you have to be persistent to get your own needs met. Best wishes.

[blackscooter in reply to Alberta56]

Just to hear from you all is a great comford.

[Karenanne61]

I just wanted to say welcome to this friendly, funny and informative forum. I don't have experience of pf or emphysema but I know how frightened I was when first diagnosed, (COPD/small airways disease, asthma and being referred forlung tx) as many others would have been. As others have said, try and speak to a professional asap and get a plan of action. Once you feel more in control you will hopefully feel less frightened.

[Caspiana]

Hello Blackscooter. It must be very worrying to find yourself in this situation. I think you mentioned you will be trying to get an appointment after the holiday. I really hope that happens for you. 😔 Please let us know how things go. I really hope you get the answers you need. Best wishes to you.

Cas xx 🌿🌷

[blackscooter in reply to Caspiana]

I hope you and other people realise how helpfull this comunication is, thank you very much.

[Currygirl]

Hello blackscooter I'm new here and just been diagnosed with pulmonary fibrosis thinking of you take care x