Oxygen

After having walking test for rehab and being told I can only go when being monitored with oxygen, do you think I should see my doctor and let him know about my oxygen levels falling low on exercise. I am a bit worried as I get really breathless when doing anything ,and I already lost a brother last year through this awful decease, and I would really like to carry on for a few more years yet and I have loads to do.just worried because only under a doctor and they only check sats at rest .

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  • Hi Jean, a quick answer from me is YES, tell him what happened at rehab.....did the nurses there advise you what to do ?

    The BLF have a helpline too that you can ring or email if you live in the UK.

    Best wishes.

  • No was not told what to do and do not see anyone unless I need a doctor no yearly check up or anything

  • Hello jeanjt

    Good replies.

    I would go to your GP and don't take your bum off the seat until he has sorted you out with the correct treatment, and answers to your questions...Also ask him for a referral to a specialist, as your GP sounds as if he hasn't got a clue !!

    Good luck

    xx

  • Thing is we never get to see the same go twice which is annoying and if you want to see one that you think actually cares it's something like a 3 week wait . I got myself oximeter today going to keep eye on myself and book emergency appointment in morning , I am so getting fed up of not being able to walk as so out of breath and my chest X-ray should be back by tomorrow

  • Hello Jeanjt

    Have you ever read the NICE guidelines for copd ( type in your browser search box )

    It makes very good reading, and your GP surgery should be adhering to them no matter which GP you see.

    I would print a copy off and take it to your next appointment and ask why they are not following it.

    Don't let them fob you off.

    Good luck

    xx πŸ˜‚

  • Hello Jean,

    Do you have a copd nurse that you see every year? This information should really have been passed to nurse or your doctor by the rehab people and be taken forward from there. Please do take knitter's advice, and the best of luck.

  • Never seen 1 in 10 1/2 years !!!!!!!

  • You need to start pushing your surgery. This is awful.

  • I have a story on this...lol

    I took my first 6 minute walk test and when I was done the therapist checked my oxygen. She was alarmed my oxygen was 84%. She exclaimed, "You need oxygen!" Well long story short she frightened me. She hovered and walked me to the elevator like I was going to die or something. I finally get oxygen and a year later I have another test and did fine with my oxygen. The Therapist told me to use it upon exertion. During the winter my stats dropped more than normal and I told my doctor. He told me not to check my stats so often ! Well, I thought it would be a good idea to know and if it were any different why would the first lady have been so worried. So, On my net appointment with my doctor, I am going to ask him why he does not care if my 02 goes down to 84 and see if I don't get his attention...lol

    On the answer to your question, I listen to a man named Noah Greenspan. He is a pulmonary rehab DR in New York. He can be found at Pulmonary Wellness online and he has 30 videos that talks about all of our questions. FYI He turns people oxygen up as they exert. And YES see you doctor... If your level is below 90 you need to use the oxygen.

    Well maybe I helped and maybe not but you got me to say something and I rarely do,...lol

  • Thankyou

  • Hi Punkyb

    Thank you, I am glad you have told me your of your experience.

    I will be prepared if my GP comes up with such a stupid remark... it's like telling a diabetic you don't need insulin, don't check your sugar levels so often !!

    I would tell your doctor to attend a pulmonary rehab course himself, he obviously needs to be educated about COPD.

    7.0 am and l am having a Rant, l must calm down as it is my copd/asthma review in 3 hours πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

    xx

  • Best of luck with your review, velvet.

    Recently when I had a chest infection yet again, I told one of the doctors that my SATS were low.....' How do you know' I was asked ....when I said I used my oximeter I got short shrift for having one at home.

  • Thanks knitter

    What a bloody cheek your GP being off hand over something that is so important for us to keep an eye on....l have an oximeter and l take it with me to the GP's and check that it gives similar readings to his.

    I am apprehensive about my review as l feel l have deteriorated a lot over the last year...l can't run far anymore and have had to resort to a ball and chain to slow the twin toddling Terror grandchildren down to my speed πŸ˜‚πŸ˜‚πŸ˜‚

    xxπŸ˜‚

  • It makes me mad to hear such stories. One of the "modern" ideas is for people who have long-term conditions to manage their disease. In other words you know what's right and wrong with yourself and can ask for medical input when necessary.

    I was advised by the O2 assessor to have an oxymeter. My respiratory nurse and GP have made no adverse comments when I've told them.

    How can you monitor and manage your health if you don't have the tools to do so? That's my rant for the day!

  • How come Dr's opinions vary so much knitter - when my husband was diagnosed with his Lung condition almost five years ago our GP advised getting our own oximeter. I think the secret though is not to be paranoid & use it all the time.

  • Hi Helen, the GP asked why had an oximeter at all, I explained about the asthma and COPD. It was the tone of voice she used got to me.

    The others in the practice have been ok .

    My SATS are usually ok, they have only dropped low on a few occasions. It's trying to explain that when my O2 levels seem reasonable I am still struggling to breathe....that can be a problem.

  • That's disgraceful knitter. I would have felt like saying " Look at my b****y notes " although I don't usually swear !!! 😹

  • Hello Helen

    Nor me πŸ˜‚πŸ˜‚

    xx

  • Hello knitter,

    Pardon me for butting in.

    I'm a bit embarrassed. I bought one off Amazon and threw the box away so I don't know what the readings mean. The writing is small. I know to put it on the index finger and wait until the two numbers settle - but they don't. Are you supposed to take an average over a minute or two? If so it will be following the box into the dustbin.

    xx

  • Hi Jennifer

    Put it on your finger over your nail...no nail varnish as it messes up the readings...

    One set of numbers is your pulse...the other your O2 level.

    O2 readings ...100 is excellent...mid is normally about 94....not brilliant...below 90 not good see your GP.

    I am sure you can find instructions on how to use it on the internet....they will be a lot better than my explanation.

    My SATs at my review this morning were 90 not very good...and they wouldn't do my spirometry test because l had chest pains last week and had to use my under my tongue angina spray.

    Got to go back if l get the all clear from the heart consultant in September.

    It's my new surgery...brilliant...after my review in September they will get me a referral !!! πŸ˜‚πŸ˜‚πŸ˜‚

    xx

  • Well bugger me ! I wrote reply and it has bloomin disappeared. Sorry about the spiro. If you do get the all clear in September, does this mean you can have the spiro test? What surgery? An operation? You show happy faces so it must be something you are looking forward to.

    Thanks muchly for the explanation - it is very simple to use. Don't know why I bought it, but maybe it will come in handy for throwing at the tv or those flipping cats in the night.

    :-D

  • Good luck velvet. Xxx

  • Hi Sassy see my reply to J above...how l got on today !

    xx

  • Right velvet, onward and upward. Xx πŸ‘πŸ»πŸ€˜πŸ»πŸ™πŸ»πŸ’…πŸ»πŸ˜˜

  • good luck with ur tests helen

  • Hi velvet55, calm down and good luck with your COPD/Asthma Review.

    John aka The Black Sheep πŸ‘πŸ‘πŸ‘πŸƒπŸ‘πŸ‘πŸ‘

  • Hi John....πŸπŸƒπŸŽ

    Thanks

    See my reply to J above on how l got on

    xx

  • Best of British velvet. Yes, calm down dearie - it's a review.

    xxx

  • I am making a plan for the next visit. If I don't like the results I will move on to some other doctor. I think the younger doctors are beng taught weird stuff.....lol

  • Hi PB

    I have had problems with the abysmal treatment at my GP's, my husband has said to me over the last two years to move to his practice, he gets excellent treatment.

    I finally had enough of mine a couple of months ago...they told me l needed an urgent blood test....l saw the receptionist and the first available appointment was a 6 week wait !!!

    I walked out of my practice, got in my car and drove down the road to my husbands practice....filled in the forms, and that was it, l was at a new practice.

    It's brilliant, they are polite, efficient, on the ball with the latest treatments, and most of all, they care about you.

    I wish l had moved years ago.

    I urge anyone who is getting poor treatment, to do the same as me.

    PS...l though it was just me unhappy with my previous GP, but l have since found out he has lost 520 unsatisfied patients in the last 5 months to other practice's.

    How do they get away with it, my previous GP should be out on his ear !!

    xx

  • I don't know how a poor doctor survives... I could change facilities. but then I have a couple of good doctors where I am. If this guy does not shape up I will just go for a different doctor. Maybe try a lady doctor for a change..

    We have to watch out for ourselves that is for certain!

  • Yes I think it is dumb... I think I will mention that he go to rehab to check out the rules for copd...haha!

  • Horrendous punkyb; please let us know the outcome?

  • I wonder if I will ever find out..lol

  • I wonder.......

    x

  • G'day Jean

    My heart goes out to you

    Were you on o2 when you did the walking test? and if not was it given to you when your sats dropped?? This is a duty of care for any health worker!!

    I am stunned that you are not being monitored during your rehab exercises. Any Physio involved in the lung disease field must be aware of the importance of keeping your sats at a safe level.

    Are you on 02 or is this only supplied to you during rehab?

    Do you have a finger oximeter? If not, buy one, this is a very necessary item and it is the only way of monitoring your sats. They are not expensive, about $20 AUD.

    Although from "Down Under" there cannot be much difference in treating lung disorders. I would be finding a pulmonologist to take over your lung issues. Gp"s are good for colds and bumps but would you go to a plumber to have teeth extracted?

    You need to find a specialist, one who treats you and not the disease.

    I am sure someone who lives near you can help with this

    If any doctor treated my wife they way you have described, he would no longer treat Susan, and would feel very uncomfortable, probably have burning ears for some time.

    From the stories of woe I have read from over there I can only feel dismayed about how you lot are treated at times.

    I cannot speak highly enough of the manner in which Susan is cared for here. The hospital staff treat her like "Family"

    I hope things turn for the better

    Best wishes

    Will (Australia)

  • Yes from me too dear Jean. Let the doctor know. Xxxx

  • Hi jean the. I am currently on my 8th week of oxygen and was told to use it 16 hours a day. I have been writing my Sats down when resting

    and after doing minor things without it but retest a few minutes later to see how much it has increased without oxygen. Awaiting results of an echocardiograph and a visit from a a respiratory team. In the meantime I will be checking it. I had been concerned about low Sats and on advice from a nurse in a walk in centre I presented myself to AnE where I spent the next 18 nights. I am not saying this will happen to you but can't see any problem with watching you Sats. Should you have swelling in your legs or ankles you should advise your doctor, there could be a connection. Wishing you well Joyce

  • Hi

    As I mentioned in previous reply GPs no longer prescribe oxygen.

    On my pulmonary rehablitation assessment I was prescribed oxygen which was delivered following day In time for me to start the course.

    I was then referred to the oxygen team at local hospital who take over the HOOF, home oxygen order form requirements.

    I have a six monthly appointment with oxygen team, for a six minute walk test.

    Although my GP as had no involvement all the information is sent to the medical centre to be attached to my records

    I have seen my GP and practice nurse several times since and no comments have been made regarding my use of oxygen.

  • Hi stone, would a patient have to go to the GP first , as they are the gatekeepers....or would the pulmonary rehab nurses set the ball in motion , contacting the oxygen team?

  • Hi

    The pulmonary rehablitation nurse placed the initial order, I received my oxygen next day.

    I was then passed on to the oxygen team who confirm requirements, by means of six minute walk test, they then take control of your oxygen requirements. With follow up appointment every six months.

    This is only for Ambulitory oxygen not long term oxygen therapy which requires blood test.

  • Do you mind if I ask how far you were able to walk on the six minute walk test? There doesn't seem to be much information around with regards to what is "normal" so a person has a reference to compare oneself to.

  • Hi

    There is no normal, the six minute walk test is a global test usually used as a comparison before and after a event.

    You may do one before pulmonary rehablitation and then after to gauge whether you benefited from the course.

    For oxygen assessment it used to gauge your starting O2 levels. How far you walk before you need to rest, the O2 levels at that point, the time taken to recover back to your start O2 level.

    My last one start 96 after 3 minutes approximately 100 metres O2 was 92 recovery time 1 minute 30 seconds.

    The recovery time is also the time you rest for during periods of excertion. to maintain a acceptable O2 level.

    Just to clarify I am stage four 22 % lung function. Others may do better or worse, we are all different.

  • Thanks Stone. I just assumed they had a reference much like they do for PFT results. Your FEV1 and FVC are compared against a healthy individual of the same age and height and thought perhaps they had the same reference for the six minute walk test. I had one several years ago and at the time they said I did quite well but never thought to ask if there was a "normal" for my age and height to compare to so have wondered ever since. I know I wouldn't do as well now as I did then.

  • Hi Jean you should be getting at least an annual review with a respiratory nurse at your surgery and if severe it should be every6 months. You should also be under a consultant at the hospital. I presume you are in the UK so check out the NICE guidelines - google it.

    You need to demand a second opinion so ask for a consultant referral. There is also nothing wrong with using an oximeter at home, but don't get obsessive about it. Do you have anyone you can take to the surgery with you? x

  • Yr Dr needs to refer you immediately to Physiotherapy for a six min test this will bring problem to the fore. At rest my SATs are 94%, on any exercise my SATs drop to 78% and stop me in my tracks. After diagnosis I now walk etc. with O2 at 4 ltrs. This started with nothing more than an occasional cough

  • Jeanne,

  • A while ago I was very poorly so took myself to the gp.... after an hour wait I was seen and my oxygen levels were 50% she told me to go straight to A&E .... after a short ! wait I was seen and panic all round .... the young italian doctor was furious that she didn't call 999 and let me drive to the hospital which is literally only 4 minute drive .... but none the less he was mad and rang the surgery too! .... When I have my sats read they are usually early 80's which is quite normal for me but with a bit of breathing I can get them up to about 94 which is great and pleases everybody .... I only have 1 lung which was removed 10 1/2 years ago and COPD for which I have never had appointments for breathing clinics or anything .....why ?? well obviously GP didn' think I needed it ! Anyway now have heart failure and on oxygen 15/20 hours per day but still manage to go out and do stuff in my non oxygen hours ..... At the end of the day not everybody has faith in their GP but we should all have somebody on the end of a phone who can help with any problems we have ... my Oxygen and heart nurses are great .. lucky me x

  • It may be worth while ringing the PR team as they may have done a referral to the oxygen clinic for you. They should have given you some information when you were there its so frustrating being left in the dark all the time.

  • Hi my Answer would be always Talk Over Concerns With Your GP. No if Buts Or don't like bothering GP, that is what he is payed for, So Get on the Telephone and keep us in the loop. Hugs

  • Evening

    If your being tested for PR the nurses will prescribe the oxygen, its not down to the doctors. They should sort it all for you.

    Kim xxx

  • Do not test your SATs straight after waking as your lungs are laying flater whilst laying down. I am on O2 oxygen 24/7 at six litres and when I wake in the morning my SATs are normally around 84. My COPD with picked up while I went to hospital for a checkup before an operation. That was 6 years ago my records went to my GP who then gave a prescription for my 02. I also have a 6 monthly review with surgery COPD nurse.

    I have a yearly review at the hospital and normally they do a blood gas which will tell them exactly what's happening you need to find out what your FEV is so that you can see at what stage you are with your COPD.

    My GP know that he's not an expert in this field so he leaves it up to the nurse at the surgery or I can contact the hospital. I have a number that I can contact the respiratory nurse when I have a problem or a question.

    Don't be fobbed off make sure that your voice is heard this is your health that were talking about. If you are not happy with your GP then change within the surgery or change it to another surgery. Remember it's you that you've got to think about they are there for you, you pay their wages.

    Good luck xx

  • I had the same experience but the Pulmonary Rehab staff referred me for an oxygen assessment

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