Do I Need OXYGEN

[deedee5]

After being on oxygen for almost 4 years and completing a PFT test was told I did not need oxygen any more. I was shocked because I was told that I would be on oxygen for the rest of my life along with meds.Spirometry shows a reduced FEV!/FVC and FEV1 with normal FVC. Normal lung volume with a normal TLC and increased RV and FRC. Decreased DLCO. FVC 96 FEV1 61 FEF25-75percent 29. Did not get any. explanation. I have severe Emphysema Severe gas exchange. Air trapping. The list goes on. Does that sound like I would not need oxygen.?.

[Kristicats]

Fev1@61% is pretty good I feel . Perhaps inhalers May be a better alternative ? Could you have o2 as a back up?

[deedee5 in reply to Kristicats]

You have to have a doctor's approval or your insurance will not cover it. Since I have been on it so long, I cannot believe I would not need it.

[Caspiana]

Hi deedee5 .

Hmmm.... I see your dilemma. I have two questions. Can I ask who made the decision? And, do your O2 levels drop?

Totally understand your bewilderment. xx 😐

[deedee5 in reply to Caspiana]

After getting no help from my GP in regards to getting a PFT test that I did not have in over 2 1/2 years, I went to a pulmonary doctor for the test. Hee made the decision without even looking into all my problems pertaining to lungs. With waking and exercise like housework, showers, stairs, etc. Oxygen does go down at times to 88-90. I am on inhaler and nebulizer steriod.

[Caspiana in reply to deedee5]

Well it seems to me you need a second opinion. Have you had a six minute walk test? And how did they come to the conclusion you needed oxygen initially? I noticed you mentioned insurance in your reply to Chriskho. Are you in the States? xx

[deedee5 in reply to Caspiana]

Yes, Usa. Oxygen dropped in hospital. I am on inhaler. And other meds. Low blood oxygen. Still drops with exercise.

[Caspiana in reply to deedee5]

Inhalers can help to open your airways but that does not mean you don't need oxygen. If your sats are dropping to the eighties or lower upon exertion then I would be so bold as to say you need to be evaluated again. I need oxygen on exertion. My sats don't drop if I am immobile. But once I start to walk at a bit of a pace my O2 drops.

You clearly are not comfortable with this assessment. A second opinion is in order I think. Take care. 😀 xx

[Kristicats]

There are some effective inhalers out there nowadays 😴😴

[deedee5 in reply to Kristicats]

You are right. Thank you for your suggestion. I am not comfortable just going off without a explanation.

[deedee5 in reply to deedee5]

It should have been a 6 minute walk, but it was less than 3 minutes. They gave me a inhaler before walk. That helped but I don't think it showed a clear picture of what happens with exercise.

[Hidden]

I have been told that o2 will not help me as it is my lungs that can't get it into my blood stream no matter how much I have. My alveoli are in such bad condition that no matter how much o2 they give me my blood oxygen stays the same.

[idahokevin in reply to Hidden]

Hi Patsyann24, I too have a very low DLCO #. It was at 17% at my last PFT.I had double pneumonia and sepsis got into my lungs. I think it was the sepsis that destroyed my Alveoli. I was a smoker also. im on oxygen 24/7 3 lpm at rest and 10 lpm when exercising. How low is your DLCO? I have an appt for another PFT in a week, hoping for better results. Take care, Kevin.

[deedee5]

I was thinking that may be the reason Patsyann. I wish some one will confirm that for me. I have low oxygen blood and was told my alveoli was hanging by a thread. 4 Years has gone by, with me on oxygen with exercise. Thank you for input. It helped alot.

[Sjf129903]

I would see about a gradual release so that you know how you feel

[Hayley_]

I know you are probably really worried. I was on oxygen for 2 years and then they said my levels were ok and took me off it. I was so worried and it really stressed me out. But actually I coped without it really well and now have been off it for a year. Sometimes having severe copd doesn’t necessarily mean you have low oxygen levels. It does become more of a mental issue.