Oxygen

[linda9045]

Hi I was wondering if anyone that has IPF and using oxygen ,has ever managed to get off oxygen completely

[imelda16]

Hi linda9045 I suffer with IPF and have to use 02 15 hrs minimum and my respitary team say it's to protect the other organs from damage due to not carrying enough oxygen in my blood due to the scarring caused by the desease. The only cure would be transplant or hopefully a new drug like Pirfendone if it helped but unfortunately it didn't suit me and my condition took a turn for the worst. I am now retaining co2 which needs the oxygen to keep it under control so can't see me ever stopping the 02 but I'm just glad I'm still here. Maybe others will reply with more advice good luck x

[Plumbob in reply to imelda16]

Hi Linda - Imelda is right in saying that the oxygen is there to prevent your other organs from oxygen starvation and not necessarily there to stop you becoming breathless .... I have an aggressive form of Fibrousis and under going Chemo as one of the last resorts (then possibly Pirfendone) If I improve I will be put on transplant list ASAP. I think with IPF (or similar) once you get to the level of needing oxygen, you will be on it indefinitely or until a lung transplant is carried out

Hope this helps

Owen

[imelda16 in reply to Plumbob]

Hi plumbob we seem to have much the same but do you know anything about retaining co2 ? I wondered if others have this problem and how it effects them . IMELDA

[Plumbob in reply to imelda16]

Hi Imelda - I have heard of people retaining O2 but don't have that problem myself. My issue is because of asbestosis I am only transferring 1/3 of the oxygen that my body needs from my lungs into my body. Basically I have lost the majority of the elasticity in my lungs (or as I like to say they are getting bricked up and not letting anything out ) But still smiling and living life the best I can

Take care

Owen

[meglou]

My husband had ipf once he started on the oxygen he never was free of it but it never stopped him living his life.

[Cyberpunk]

Hi there I have severe emphseyma was put on oxygen then was given a drug called uniphyllin and now I'm off oxygen completely I don't know what ipf is not familier with it but the drug uniphyllin has done wonders for me wish you all the best