Oxygen support

[Exflex]

Almost four weeks have elapsed since being hospitalised with Covid and pneumonia and a CT scan revealed I have IPF. In which order they occurred is difficult to determine, but I’d had a persistent dry cough for about 16W before Covid and pneumonia. The thing is I’m two and a half weeks at home after hospital discharge, and I’m not getting any better and I find that disappointing to say the least.

I’m booked for both ambulatory oxygen assessment and spirometary test on the 20/9/24 and consultant clinic on the 10/10/24. If I’m offered oxygen support will my body become dependent on it making it difficult to wean off? Any experience to share with me?

[sassy59]

Hi Exflex, sorry to hear of your ongoing health issues and hope things improve soon. Pneumonia and sometimes Covid can take a long time to recover from. Oxygen is for supporting your internal organs so will hopefully be beneficial. Discuss things on the 20th and see what’s said. Hoping someone will be able to discuss their experience of oxygen support soon.

Wishing you well. Xxxx

[Exflex in reply to sassy59]

Thank you very much. Shortly after typing my question I phoned the Asthma and Lung help line and spoke with one of the very helpful nurses. She said, like you, the oxygen would be beneficial and said I probably need it to support my organs, notably the heart which is under strain if I move around from room to room and when climbing the stairs. Very hard to deal with all of this as I was a reasonably fit person 20 weeks ago.

[Patk1 in reply to Exflex]

That's understandable Exflex.x

[djbctla in reply to sassy59]

Great answer Sassy as usual. BERNARDINE xx

[sassy59 in reply to djbctla]

Thank you Bernardine xxx❤️

[KC2222]

Hi,I needed 18hr a day oxygen for 6 months after pneumonia affecting my copd. 6litres oxygen which us quite high.

Tested again by walk test and o2 sats at 6month, now off completely, been over a year now.

Good luck it us a slow recovery, but possible x

[Biker88]

I had my oxygen assessment 6 months ago and was prescribed ambulatory oxygen, my sats are fine when sitting at rest but they crash as soon as I start moving about. So I use oxygen as soon as I get out of my chair, my oxygen nurse told me to treat it as any other medication. As mentioned low oxygen levels can result in organ damage and it’s also fuel for the body so I have a bit more energy to do things when on the oxygen. My lung function is now down to 25% due to Aspergillosis destroying lung tissue so I’m on it all the time and don’t ever see me coming off it. In hospital I was on 24/7 oxygen and they weaned me off in a couple of days with no problems. I then had a six week wait for my body to fully recover before I had the oxygen assessment. I don’t need it when driving or riding the mobility scooter but I need it as soon as I get out of the car or off the scooter. If you need it go for it as it can make a difference to what you can do

[Oshgosh]

I agree with biker88 about oxygen.it helps prevent organ damage,gives me a bit more energy.

Oxygen doesn’t cure breathlessness,it took me ages to get my head round this.

[Exflex in reply to Oshgosh]

Oh that’s disappointing to learn that oxygen doesn’t sort out breathlessness. When I wake up in the night to visit the bathroom I walk about 25 yards and think I’m going to pass out until I desperately try to regulate breathing, very hard and takes me a good few minutes. I can’t wait to get back to crash on the bed.

[Alberta56]

People on here who've had pneumonia agree it takes a long time for the body to recover from it. I hope you will find that you gradually get fitter. Covid is no joke either. I know that from personal experience-it took me 4 or 5 months to get back to normal.

[Exflex in reply to Alberta56]

Thank you @Alberta56, knowing that gives a bit of encouragement understanding that things could get better, although I have been diagnosed also with PF.