Not sure I know what's happening

Hi, is it normal to feel totally out of you're depth when just been diagnosed with type 2 respiratory failure and put on 4 litres 24/7. And the doctors don't know what's wrong with my lungs ( despite loads of tests). ??? Also I feel really embarrassed with the nose tube going up my nose when I'm out in public. Is that normal too ??

7 Replies

oldestnewest
  • It's a lot to take in at first but others will be able to chat to you about oxygen, l just wanted to say welcome to you and wishing you well. Xxxxx

  • Hi Out-of-my-depth a very warm welcome to our friendly and informative community.

    For someone who is on oxygen 24/7 I would have thought that you would have been given some sort of diagnosis of your condition. It must be very frustrating for you not knowing especially as you say you have had loads of tests. Usually a CT scan can tell whether you have COPD/Emphysema, Bronchiectasis, Asthma, Pulmonary Fibrosis etc. I for one would keep asking my Doctor/Consultant until I got some answers. Hopefully you are getting good treatment for your condition.

    Please don't feel embarrassed about walking anywhere with your oxygen tube on. Most people wouldn't even notice it and those that do are merely curious. If you just get on and do what you normally do, you will soon become less self conscious of anyone looking at you. It would be a shame if it stopped you going out and living life as fully as you are able. I go supermarket shopping, into cafés, garden centres, in fact anywhere that I would normally go.

    Please feel free to ask any questions but bear in mind that being the weekend (and good weather) most members may be out so it may take a while to receive any answers.

    I wish you well.

    Regards. John

  • I've been on oxygen for more than 8 years. I was a bit self concious about the nasal cannula for the first couple of days, but I soon found that nobody ever takes a blind bit of notice of it - honestly, you'll be amazed at how quickly you forget you have it on. Young children are the only people to ever express any curiosity, but if you just explain that it helps you breath that soon satisfies them.

  • Hello there, so sorry to hear this.😕 One consolation I suppose is that they were quick to prescribe the oxygen thus helping your other organs from possible damage. It's the most natural medicine you'll ever have! and there's loads of us with plastic moustaches, you kind of, sort of , get used to it.It never stops people from returning a smile.My Grandchildren aren't bothered by it, I briefly explained why I have it and they think I'm pretty cool anyway.😉 I hope you get a proper diagnosis soon at least then you could find out your best plan of action for your wellness.Welcome to the site OOMD.😁🌼 huff x

  • Thankyou so much everyone for replying. It makes me feel happier that there's people who understand the worries I'm feeling, and who can give me very kind advice. As for the doctors, all they keep saying is " we don't know what wrong with you".... It all started 2 years ago with a case of pneumonia that left me in hospital for 8 weeks, 4 weeks on life support, and no matter how many CT's, MRI's, tests on my heart, brain, bloods etc etc etc my oxygen levels won't go above 77% unless I'm on supplementary oxygen. I'm a young Ish person, never smoked, always kept fit, got a family, but now I'm lucky if I can walk to the end of the garden and back..... It's amazing how quickly life changes. Does anyone think getting a second opinion of anoth consultant would be any help ??? Or do I just get on living with what I've got ??

  • Yes it is normal! I have type 2 and lead a good life (well most of the time!) Think all I would tell you has been covered by some of our wonderful members. I would definately go for a 2nd opinion, you have the right to know what's going on then you can deal with it. Take care and get out there complete with oxy! Xx

  • verywell.com/copd-complicat...

    I would request a second opinion if they are not continuing their investigation's . Doctors don't always get it right but I would keep asking him if there has been any development's. In this link it says pneumonia can lead to respiratory failure but I was surprised by some of the reasons and I never thought of the nervous system, complex aren't we 😉 take care, huff x🐦

You may also like...