Re; last question I have everything mixed up I am not sure now but I went to see respiratory nurse

and she said one reading was 98 and another 38 she didnt give me much info I also have Parkinsons and getting a bit of confusion so I probably lost the plot. I was wanting to know what stage I am in as getting very breathless and find it hard to walk any distance and wondered if oxygen would help . I think I will have to make notes and take hubby with me next time. supe x

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  • Hi supe and welcome. Sorry you have a lung condition and Parkinsons. You might be best sweet to telephone British Lung Foundation tomorrow - they are very helpful. Just ring on the red balloon at the top right of the page. They will be able to explain things for you.

    Good luck

    Love cx

  • Welcome to the community Supe :) Going by the numbers, I'd guess that the 98 was referring to your oxygen saturation levels in the blood (which, if it is, is excellent), and the 38 may be the FEV1. If this is the case, and it is a very big if, then that would place you in stage 3 COPD, that's if you have Chronic Obstructive Pulmonary Disease.

    I know it's a pain being so short of breath all the time, but try and take things very slowly, and with plenty of stops to catch your breath. What inhalers are you currently on, and do you find your reliever inhaler helps at times when you are most breathless?

    As cofdrop suggests, perhaps a call to the BLF nurses would be beneficial. Take care x

  • Hi lovely, how confusing?? I would be confused with that information. Sorry to hear you have COPD and parkinsons. Good idea to make some notes and write questions down - I know that we invariably come out of the surgery without the answers we needed! Please ring the BLF helpline (click on the red balloon in the corner) I am sure they will be able to help you. Take good care, TAD xx

  • Yeah, make the call supe :)

    If as initial says (and those were my thoughts too) your fev1 is 38, then to have an oxygen reading of 98% would be amazingly good. Whenever i have lung function tests done i ask for a copy of the results - some departments/nurses/lung technicians are happy to give them to you, some not so much. Having your copies enables you to speak more easily to experts to ask for advice or interpretation e.g. BLF helpline.

    If your diagnosis is COPD, then you need to ask for a referral to pulmonary rehabilitation which is an exercise and education programme which is a standard referral for people with stage 3 COPD. Good luck.

  • Definitely good to take someone with you, supe, and take notes. Re the oxygen, with a reading of 98%, if that's what that figure is, then oxygen wouldn't be prescribed. It's given more to prevent damage to your internal organs which happens if your oxygen stats go below 88%. It doesn't tend to be given specifically for breathlessness and often doesn't help with that anyway.

    You could ask for a telephone appointment to confirm the figures if you are in any doubt.

    Maybe you need a review of your medication to look at what might help with the breathlessness. In pulmonary rehab you would learn techniques to help manage your breathing. The two main ones which you can google are huff coughing which helps bring up mucus, and diaphragmatic breathing. There are youtube demonstrations of these which you can google.

    Do hope your situation improves, take care.

  • Hi Supe, I think the best thing is to ring BLF as cofdrop said.

    As for myself I think why worry about what stage I am at I just manage my symptoms as best I can.

    If you think you need oxygen ask your doc or your respiratory nurse if they will send you for a walk test , which is literally walking up and down for a few minutes and they monitor you and from that they will be able to tell if you need it.

  • Hi Supe. Welcome. :)

  • Hi Supe. Welcome if you do what the other guys suggest. Take your Husband with you. Also maybe ring The BLF. When you know what the numbers are for. We may be able to help you. You don't say why you have a breathing problem. That may help us to share what problem you have and maybe identify with someone else. Please come back to us and let us know a little more.

  • Hi all and Thanks for the support ,here goes I phoned surgery to speak to R nurse and she is on holiday so GP.phoned me back he told me not to worry about numbers just do what I can when I can. I have been I have been referred to the rehab team,He asked me to make app next week when the nurse is in and the three of us would discuss my situation and review meds. HOW I got to this stage---.I started with M.E. around 7 yrs ago and had to stop working due to being tired, aching loss of concentration (i was a Care Manager) I did smoke and had a cough had Xrays and was given a salbutamol.inhaler told to stop smoking, I got used to feeling rubbish all the time but went back to see GP now and then hoping something (like a miracle) would come along, but no on one occasion my GP noticed my hand shaking I thought it may be nerves but she sent me to see Neurologist who checked me over and said I have Parkinsons so the tests started I was now starting on the road of medications ,I have acid reflux,a slow swallow,walking became difficult being unsteady and breathless alsorts happening,Then 3 yrs ago I was POORLY 2days before Christmas I could not breathe panicked like you do was taken into hospital put on oxygen, nebuliser ,2 or 3 antibiotics I was on a small isolation ward 5 of us all same, I was there nearly 4 weeks sent home with nurses visiting daily chair lift fitted and wet room It took 3 months to get back on my feet.I was told I had a bad case of pneumonia which left my lungs badly and was now called C.O.P.D. a little time after this I met up with a lady who had been on the same ward and family of another lady off the ward had died and coroner had said she had had Swine Flu. I went on to improve some but this last few months I am going down fast,I cannot hardly walk outside legs shake and sometimes lock and very breathless when I do anything .When I stay in and get waited on I am great but I know I have to keep trying along with my Parkinsons meds I am on Seravent evohaler 500 BD ,Spiriva OD and Ventolin inhaler P.R.N.

    SORRY ABOUT ALL THE MOANING !

    I think I am panicking about having a winter flare up( I do have my emergency pack of

    meds AND feel much better for writing it down.

    SORRY BUT THANKS

    supe xx

  • It is rather cathartic to get it all out, Supe, and although I can see the point your doctor makes about it only being numbers, it's your right to know exactly what the numbers mean! Of course, you'll then have to come back and tell us what they meant too LOL :) Do not apologise for moaning. That's why it's called a support group :) Take care x

  • Thanks again initial it has helped just put things in writing,you never know if I can get some stability back I might write a book .

    lol supe x

  • Good idea to ask you hubby along; he'll be able to support you. Perhaps you can work out together what sort of questions you could ask, especially if there are tests carried out.

    The nurse must have recorded this. Perhaps she passed these notes to your doctor. have you got a specialist doctor? go and talk to him in company of your husband. Indeed, rind the BLF helpline and discuss what sort of questions you could ask the nurse or the doctor. Good luck and best wishes.

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