Idiopathic pulmonary fibrosis

[Debs6129]

hello everyone. I was recently was diagnosed with Idiopathic pulmonary fibrosis. I'm 57 none smoker and my oxygen level drop between 80 84 86 do i need to go to hospital

[Caspiana]

Hello Deb,

That is very low. I think you need to call for advice. Are you on oxygen? And your heart rate is quite high if that is reading at rest. I don't know how it works in the UK. but could you call the ambulance service and explain your situation to see if they suggest going in to A and E?

Please let us know how you get on.

Cas xx

[Debs6129 in reply to Caspiana]

hi Caspiana I'm laying down on my bed at mo . I have been having a little pain on my left side. no I'm not on oxygen yet .at mo im seeing a lung specialist I'm not on med yet

[mrsmummy]

I think you need to be assessed for oxygen use because those numbers are very low. And you have some chest pain? Why not call 111 and ask for some advice?

[Debs6129 in reply to mrsmummy]

himrsmummy I'm in Lewisham a&e by ambulance cos i was having trouble breathing and my left side of my chest was hurting me the medic gave oxygen and a nebulizer to help my breathing .. I'm going to have a ECG for my heart and bloods taken more x-ray...

[mrsmummy in reply to Debs6129]

I am really pleased you are being checked over. I hope all goes well for you. x

[Debs6129]

I will but im a bit scared of what they are going to say to me.. I'm trying to cope with wot I have and I'm finding very hard.

[Caspiana in reply to Debs6129]

Don't be scared. It will be okay. They will help you and it will get better. *Hug* Will you post again once you have called? I will wait.

[mrsmummy in reply to Debs6129]

Better scared and safe.

[Helen6]

Hi Debs, please do get some help/advice as everyone has suggested. It sounds like you could do with oxygen. The main thing is how long your oxygen saturation remains low. I am on oxygen 24/7. When I move about my oxygen levels go into the 70s and my heart rate into the 100s but as my levels return to what is normal for me quite quickly, my respiratory nurse is not too concerned. If you call an ambulance, the paramedics will assess you at home and only take you to hospital if they find you need this so don't worry about calling. If in doubt make the call.

Helen

[Debs6129 in reply to Helen6]

hi helen6 .

I did get help I called 999 that night and was taken to Lewisham a&e by ambulance cos i was having trouble breathing and my left side of my chest was hurting me the medic gave oxygen and a nebulizer to help my breathing .. I'm going to have a ECG for my heart and bloods taken more x-ray...

[Helen6 in reply to Debs6129]

Great stuff Debs - it's difficult sometimes to call 999 but it sounds like you made the right decision. I hope you get sorted out soon.

Helen

[Debs6129 in reply to Helen6]

hi helena thank you.

[sassy59]

I do hope you managed to get help Debs and your specialist will talk you through everything. Take care xxxxx

[Lynzilou]

Hi Debs I have idiopathic pulmonary fibrosis too. In January I was very ill and breathless but my oxygen levels did not go as low as yours . I would definitely phone for paramedics to help and get into the chest clinic. For months I had been awake through the night trying to clear mucus, as well as throughout the day and was becoming suicidial. I could not breath and had panic attacks - and was given oxygen cylinders to use and keep at home. However, - I was prescribed a steroid inhaler which has given me my life back. I now live a virtually normal life.

Go and get some help - now!

Good luck

Lynne

[Dedalus in reply to Lynzilou]

May I ask what steroid inhaler you were prescribed please Lynzilou (and how often do you use it?). Mine (Pulmicort 200) has made no difference to the mucus. Many thanks

[Lynzilou in reply to Dedalus]

Hi Yes, of course. Its Symbicort - 400/12.

It has made a huge difference to me. I know everyone is different, but it might be worth giving it a try?

Let me know how you get on.

Do you have pulmonary fibrosis too?

Regards

Lynne

[Dedalus in reply to Lynzilou]

Thank you Lynne. Seeing consultant next week so will discuss changing. I have chronic bronchitis, but mucus always present. Take care x

[Carnival567]

I too have levels like that occasionally and my GP insists I call an ambulance. Don't be afraid, I have had to call an ambulance many times and the paramedics have always been kind and helpful. If these levels continue to happen you can call your consultant's secretary, or your GP can hasten your appointment. You are ill and need care, a hard thing to come to terms with, and most of us have a wobble from time to time. Thinking of you xx

[Debs6129]

hi everyone I'm in Lewisham a&e by ambulance cos i was having trouble breathing and my left side of my chest was hurting me the medic gave oxygen and a nebulizer to help my breathing .. I'm going to have a ECG for my heart and bloods taken more x-ray...

[Titchykath]

Take care hope they sort it all out for you . 🙂