slide or step

[blackscooter]

Hi.

thanks to COVID 19 I have pulmonary fibrosis and emphysema, diagnosis is 1 year old I am told there is 30% of my lungs still working, I was also told its a slow slide down hill from there and I have made my peace with that, but in the last couple of days it feels like I have took a step down and feel a lot worse in a short bit of time. Can anybody tellme if that is possible please.

Thanks

[Bevvy]

If you have suddenly started to feel worse then potentially you are brewing an infection. Or maybe you are affected by pollen as we go into Spring. It would be unusual to suddenly go downhill without some reason behind it.

[blackscooter in reply to Bevvy]

I have another scan this week I wil tel them Thank you

[Bevvy in reply to blackscooter]

Unless you are also seeing a doctor and scan is today I wouldn’t wait for scan. If you are brewing an infection you may need antibiotics etc sooner. Also when I have scans usually it is dealt with by technicians and I don’t see an actual doctor at the same time……

[Troilus]

Hi blackscooter. I would say that any sudden worsening is worth discussing with your doctor.

[blackscooter in reply to Troilus]

I have another scan this week I wil tel them Thank you

[raven_88 in reply to blackscooter]

Do not wait. Contact your GP. I did that thinking just a bad couple of days etc. It turned into quite a nasty exacerbation and I am in hospital four weeks later. You are far from the end of the road and I am sure there will be lots you can do to help yourself. My local hospice run a day release course where people can get physio, do arts and crafts, mindfulness and all manner of weird and wonderful stuff. There are also people to talk to who totally understand how you are feeling.

[Patk1 in reply to raven_88]

That's a great service at yr hospice.hope yr soon well enough to go home x

[raven_88 in reply to Patk1]

Thank you.

[Mavary in reply to blackscooter]

I agree with the others. If you are suddenly feeling worse you should contact your Drvas soon as you can. It’s one of these things you can’t leave. A course of antibiotics and you could be back as you were.

[CDPO16]

Hi, I would day that a sudden worsening could indicate an infection. Contact your doctor as soon as you can.

[blackscooter in reply to CDPO16]

I have another scan this week I wil tel them Thank you

[CDPO16 in reply to blackscooter]

I agree with Raven, don't wait, get in touch with him now.

[Hidden]

Hi you really need to speak to your GP right now as other people have said, the person who does your scan won’t be able to help you. And I suggest you ring the helpline they will advise you what to do.

Good luck

[Walk2424]

Hello,

There has to be a reason behind a slide so swift. It is very easy to say do not worry to a fellow pulmonary fibrosis sufferer because there is no doubt we all do. Bevvy who leaves you another remark is correct. If you have not already got a good contact with a local GP then can I suggest you cement one, a one to one relationship with your GP is good. Your Health Centre can at least try and help you at every stage of your health whether good days or bad days. Meanwhile, still try to spend a little time in the fresh air whether it is pollen filled or not just take it easier that you did previously. Stay safe and try not to pressurise your illness do not ask too much you will learn your limits. I wish we had more groups of Pulmonary Fibrosis sufferers locally to us all, we need them.

[Thepainterswife]

As others have said , it could be the start of an infection in which case you’ll need antibiotics . I doubt it is an irreversible deterioration but you’ll find that you will have flare ups ( exacerbations) at which times you’ll need extra medication. Sometimes several courses of antibiotics are needed to get you back on form , different ones work on different bugs ,and sometimes ( though rarely ) exacerbations can occur without infection . Your Gp may also prescribe steroids . It can take several weeks or , if your lucky , a week of extra meds will have you feeling much better. I hope you’re feeling better soon 😊

[Injecter1]

Hi there I also have IPF and at the moment I’m feeling so ill…. Chest infection that just won’t go….you may be having a flare up so please don’t wait call your GP, he may prescribe steroids/antibiotics…. ❤️

[shouty]

Wishing you luck with the scan but do agree with the others about it could be an infection/ exacerbation. I have Bronchiectasis & often feel suddenly unwell & have antibiotics on standby at home. Do hope you start to feel a bit better soon

[Hidden]

contact Action For Pulmonary fibrosis, they will help you.I have now joined my local support group. So helpful to speak with people who have the same diagnosis.

Good luck and get help