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Frightened new member

Domino101
Domino101

Hi just joined the forum today.

I was diagnosed five years ago but took Very short of breath on a long haul flight home. On arrival in the uk I was hospitalised for 10 days. Got home on 17.04.18.

Took ill again last week and back on antibiotics and steroids. My o2 levels low. 85 to 87 and I have been given a nebuliser to use at home.

Feel I am not getting any better. Still breathless with no energy.

I do not want to go back into hospital as I am terrified of being put back on a cpac mask. I hated it.

Any advise please?

14 Replies
oldestnewest

Welcome Domino, you are in the right place for help and advice. Maybe you need a review of medications. I’m sure others will be able to help soon. Take care xxxx

Hello Domino101 .

I am sorry to hear about your nightmarish time. I do sympathise. 😐 What did the hospital diagnose you with and what is your on going course of treatment? Are you on oxygen? And are those readings you shared taken at rest or on exertion?

Sorry for the many questions. I think more background would help us to understand better. Hang in there. 🌷

Cas xx 🍀

Domino101
Domino101 in reply to Caspiana

Hi Cas

Was told it was a flare up of my COPD. No not on oxygen and my co2 readings were taken at rest. 85 and then 87 after using the nebuliser.

At the moment on antibiotics and steroids. 2 inhalers and the nebuliser, using combivent, 4 times a day.

Feeling better at the moment and can take a deep breath in.

Thank you for your reply. Was feeling scared this am.

D xx

Caspiana
Caspiana in reply to Domino101

Hello D.

I think your oxygen levels are rather low. If your levels are at 85, 87 at rest, I'd imagine On exertion they'd be even lower. This is not ideal. Please point this out to your doctor as you really do not want to starve your organs of oxygen. I hope you can get assessed for oxygen therapy.

I know it's very scary and can be so isolating with our conditions. Please do keep us updated and reach out to the community whenever you need to talk. 😊

Take very good care.

Cas xx 🌞🐞

Sounds as though you should have maybe not flown without oxygen you need to check your fitness to fly before doing it again.

Hi Domino could I ask what a CPAC mask is ?

Think Positive Domino and Good Luck

Damon1864
Damon1864Volunteer

Welcome Dominion, I am sure you are going to be ok. This heat is certainly not helping any of us, and you worrying won't be helping. Please try to stay calm and positive, but if you feel you need medical advice or assistance please get some straight away. We are also here to give you support so do please osteoporosis. Take care. Keep posting love Bernadette 😳 xx

Hi thank you all for your advice. My GP sent me to hospital on Tuesday as I was not getting any better. Kept in overnight and sent home yesterday with new antibiotics and to continue the steroids and nebuliser. My O2 had gone up to 91 and heart rate down to 112. Had my CO2 checked and it was not low enough for oxygen at home. Still very short of breath.

I live alone and not managing housework etc. I have no family living near me. sometimes it is very scary. Will give the helpline a call today.

Hi Domino & Welcome, You mention your GP, I have found they do not know enough for our Condition, hence why we have Respiratory Nurses who are the Best, do you have the "Pink Card" ? If I need advice I phone them, I am also going to my Rehab twice a week so they are all on hand. I am on Oxy, and do my sats every Morning, I can be as low as 87 and come up to 91 without my 02 attached. I am on List for Lung transplant. I will be having a Procedure to open up the Aliviola( spelt wrong I know) by Valve inserts on June 7th, this should help me Breathe Better.

Our Condition gets worse, but we can help ourselves with exercise and I must admit without Oxygen I couldn't do a thing, You must Ask again and get a Resp, Nurse to visit you at home. Living alone is scary, Yes, you must call the Helpline and ask for a home Visit. Good Luck and Try and stay Positive. keep us updated Please. XXXX

Hidden
Hidden

Hi Domino 101 ..... I just wanted to say a big Hello and wish you all the best. You have had lots of very good advice from some of the members on this excellent site . To be alone and afraid isn't a lot of fun but by joining this you will now be less lonely with always someone to talk with . I am married to a great guy so I'm very lucky but without him I know I would be afraid as there is no one else I could turn to for support.

Once again Domino all the very best and I look forward to reading your posts in the future.

Anna xx

Domino101
Domino101 in reply to Hidden

Thank you. Feeling a whole lot better now. New antibiotics working. I was so scared that was the best I was going to be. Breathless all the time.

Getting my energy back too. Now got oral thrush! But that is just annoying.

Thank you all once again.

Hidden
Hidden

Glad you are feeling a bit better. Pity about the oral thrush though ....typical huh? Lol

Take care x

Hidden
Hidden

Hi Domino.....I'm being nosey and wondering how you are now? I hope you are well and coping confidently. All the best X

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