Oxygen : to be or not to be? A long sad tale.

[wheezyof]

BACKGROUND

I have Bronchiectasis and bronchiolitis obliterans. For 2yrs + my Fev1 was 30%.

DOWNHILL

Aug 2020 I was in hospital with an infective flare up. On O2 for 12 hrs. Strong antibiotics. A week on I insisted on a sputum test. 16 days in hospital, my blood test results showed a lessening of symptoms and with the threat of covid hanging over all I was hustled out of hospital.

For 9 months I was battling the infection, taking azithromycin and every few weeks going back on doxycyclone. Then at last a telephone appt with the consultant. He suggested 3 months straight on doxy.

That didn't work. A sputum test showed I still had the same infection!

I was given a week's supply of co trimoxyzol. This almost cleared the infection, mucus was almost 'clean'. I was put back on doxy but nagged that if it hadn't worked in a year I believed it wouldn't work now.

It was agreed and I now take the co trimoxyzol.

LIFES A SLOG

Meanwhile my Fev1 has dropped to 26% and I'm struggling to do simple tasks like a walk to the loo and back or wash and dress, MyO2 level drops rapidly and takes a long time to recover. I have reported this. It's been seen by various medics.

I was to be assessed for ambient O2 therapy.

I was looking forward to this, the thought of getting some of my life back

HOPES DASHED

A lovely O2 nurse came to see me. (Worried about my swollen legs, lots of other medics seen them and shrugged).

She agreed I need O2.

Then with O2 I started a walking test, it was great at first but I soon felt overwhelmed and the start of a panic attack. We stopped. I recovered.

At a slightly reduced O2 we tried again. I started to feel a bit shaky so she stopped.

I've been almost immobile for 18mths, I normally used a walker Suddenly I was up and walking, no walker.. I kept expecting to feel breathless but wasn't.

I think I needed more time to adjust. The nurse took the O2 and said she'll get in touch with the consultant.

Has this happened to anyone else? If so what happened next?

[_9carole]

Hi I was put on oxygen for 16 hours a day. Then in hospital for having too much. Carbon Dioxide! Then went for a blood gas test. Said I didn't need it at all. Same went for walking test . Said I needed 4 litres on walking. But find it to much. So now I take it with me out and about. And use it as and when they drop for 2 minutes or so.

[Biofreak]

Hi wheezy. Don't know if you have your oxygen yet but based on my husband's experience once they have done the walking test with and without oxygen and decide you need it you should get a letter or phone call from the Oxygen Service to arrange the supply of ambulatory oxygen. It's quite hard to figure out how much oxygen you need but they usually tell you what level to set your cylinders to. You will be monitored and you will know yourself if the level you have been advised is right for you. The level can always be adjusted.

[wheezyof in reply to Biofreak]

I've had a phone call from the oxygen nurse. She is determined that my breathing problem is mainly caused by my heart and that is shown by my swollen legs,I told her my heart was monitored when I visited hospital recently and all was well.

However nothing will happen with oxygen until I et a referral about my legs and another heart check.

My legs are swollen because I;m inactive, I;m inactive because my o2 is low.

Never mind, I'll go along for all the checks then hopefully I'll get my o2.

[Biofreak]

Oh dear. I think you are right in your assessment of yourself. Low oxygen levels put a strain on your heart and can cause pulmonary hypertension because your heart is working harder because you are struggling to breathe. Low oxygen levels in your blood causes the blood vessels to tighten making it difficult for blood to flow in your legs causing swelling. In view of the fact that your heart has already been checked I think you need oxygen. So frustrating for you.