Hi I've finally been diagnosed with interstitial lung disease/fibrosis. After 6 months of every test under the sun. Was in and out of the

Hospital/ER since august. I continually have low ABG levels 70, 66, 55. Have been on o2 at 2 for the last month. I feel a little better but am no where near normal. I was testing 02 saturation on finger and it was 95 -97. Dr now wants me on 02 at sleep and if saturation goes under 94. I don't get it!! 2nd day now and I already feel I'm declining. Also I'm 54 had cancer at 23 with bleomycin as a drug which is known to cause lung damage.

Any ideas??

Thank You, Happy New Year!!

11 Replies

  • It is always good to get a diagnosis, I do not have this so cannot comment, however those sats are good, I too do not understand why he wants you on O2? maybe speak to the red balloon above they will help you, I wish you all the best xx

  • Hello Tylersdad, I don't have this. As Kad says ring the BLF certainly talk it over with someone for more answers. My sats are same as yours but I have emphysema.

  • As suggested contact blf helpline.

    ABG levels indicate you do need oxygen. Saturation levels are good now you are on oxygen.

    ABG arterial blood gas is what determines when oxygen is needed.

    Hope you find things settle down soon and you can enjoy a Happy New year.

    Best BC

  • Hi TD, What are your saturations when om the move or exercising. Do they drop drastically (70s- low 80s). I have Pulmonary Fibrosis interstitial lung disease and I have overnight oxygen and ambulatory oxygen when on the move.

    I have just put the bin bags out (big load after Christmas) without oxygen and my sats were around 80, have now picked up to 92 standing still without oxygen.

    I am also 54, my lung disease came very quickly (over 2 weeks) 3 years ago and put me in hospital for 4 months but since then through exercise I have improved slowly and I am now up to 30% lung function.

    I can go without 02 for long periods now at a steady pace.

    My respiratory team tested my sats over night with and without oxygen and decided I needed overnight oxygen and a total of 15 hours a day on o2 to maintain the good health of my other organs.

    I have my own sats meter at home (around £30.00 on the net) and its a good idea to keep a diary and record sats and how you do on certain exercise routines, ready for when you talk to your consultant or GP, you then have long term information you can give them on how your disease and general health is going.

    Exercise is very important and will be your torture but your friend long term.

    Tony :)

  • Hi Tony hope you are feeling better. For now the Dr wants me on o2 at night and if it goes below 94 during the day. It is often down to 93. I can really feel it when it gets low. I use it when I'm out to the store and working around the house. I feel like I lose energy quickly get headaches and have to rest. Very frustrating!!!


  • Hi Tylersdad. My Husband has IPF. I don't really understand what your question is. If your Drs are telling you that you need oxygen it's because your lungs need it. My husband is on oxygen and has been for about three months. There is not much information from the medical profession about it. I left a message to our Respiratory nurse last week and from what I understood she was putting our prescription up to 24hours oxygen. In my message I said I am working in the dark here. There was no suggestion of any information anywhere. If you are feeling worse I would suggest you go back to your Dr. It may be you need more antibiotics or steroids. This time of year people with IPF are particularly vulnerable to all the bugs that are around. My Husband has been in hospital once and has had two lots of antibiotics and steroids in the last month. It's a degenerative illness so you need to take as much care of your lungs that you can. If you need any more information please write again. i don't know all the answers but i will try to help. Happy New Year to you too. X

  • Hi Tylersdad

    I am sorry to hear that you are unwell.I have Interstitial Lung Disease and Pulmonary Hypertension. I see 2 very good consultants (or their registrars) at the Royal Brompton Hospital in London. Do you have a good respiratory consultant you are seeing between 2-4 times a year? If not then ask your GP to refer you to a specialist hospital.

    I consider oxygen therapy as something positive as it ensures that all my major organs get the oxygen they need. I am on 4lpm of oxygen when resting and on 6-8 lpm when moving around. Have you had a 6 minute walking test to access your oxygen needs in terms of litres per minute? A respiratory nurse or physio or the hospital should be able to give you the 6 minute walking test.

    Finally please try not to worry. I have had ILD for 5 and a half years and I am still able to get out and about and enjoy life.

    Kind Regards


  • Hi Tylers dad. Not sure if I can add much more to the advice given.The way I see it your ABG levels are low and based on them you need oxygen. I am assuming your 95-97 readings were taken when you were on oxygen so that's good.

    I don't have your condition but I have been on oxygen for three months now and my first month was very scarey and uncertain. I was in denial, and shock, I think. I am on 5Lpm overnight and find it takes me about 40 mins to make the adjustment from being on oxygen to being without in the morning. My sats plummet very quickly and my body has to adjust to low oxygen mode. I just have to wake up/get up slowly.

    I have been told to use it for 15hrs per day to keep vital organs healthy. That is enough reason for me! I use overnight and make up the rest during the day. When out and about I use a cylinder and have to increase the flow to 8Lpm. My energy levels have definitely improved and I am much less lethargic. My breathlessness has improved a little ( not everyone on oxygen has improved breathlessness)

    Your consultant will have referred you to an oxygen nurse who did the assessment. You should have her name and phone number - so phone her and talk over your worries. That is what she is there for.

  • Hi you have been through the mill I have COPD so don't understand what your going through but the BLF help line is great but it just goes to show it might of been a drug that cured your cancer that caused your lung problems, were always hear

  • My days go down to 82% take photos, at night, wake feeling drunk. I'm on night O2 at 4lt. The other morning I took snaps showing waking them at 93% then walking just down stairs sats dropping in 1 min from 91 to 83%. I was told 94% with lung problems is acceptable. But I'm not a dr and only going by my advice.

  • When I first come off oxygen in the morning my sats plummet and them gradually recover. can take 30-40 mins.

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