I have been struggling for months to breath my oxygen drops so low on any type of exertion so gp referred me back to rehab but still haven’t got appointment through my husband has said my snoring is horrendous don’t know if linked as never used to snore I’m in tears at thought of having to climb my stairs to only toilet in house so have asked for social services to access house to see if I could get a stair lift my oxygen drops to 70 just walking to next room so I dread having to go to shops etc as even trying to get in my car is difficult with my breathlessness I do have number for rehab myself should I just phone them direct or is this being rude I just feel I’m not coping at all .. I can’t cough up any phlegm anymore since last year and feel that’s not helping me either I have partially collapsed lung severe asthma final stage copd and bronchiatisis ( sorry for spelling) 🙈. When I asked specialist about tablets to loosen the phlegm she said there is no such thing yet I have seen on here there is .. my legs constantly swollen I’m on tablets for that but it’s not helping much ..
Oxygen?: I have been struggling for... - Lung Conditions C...
Oxygen?
Hi
I would phone rehab, explain you situation and ask can they arrange a Ambulitory oxygen therapy assessment as soon as possible.
The problem with referrals is they are not fully explained as to the urgency of the request.
I was put on Ambulitory oxygen when sats dropped to 83, on short walk.
Thank you will phone them tomorrow
Same here, Stone! I was told that even though my sat levels return to normal (95-100) quickly, that repeated drops can cause pulmonary hypertension, or damage to right ventricle in heart. Were you told such a thing?
No I hadn’t and my daughter kept making me walk around a town and it was pure hell cos she told me if I got mobility scooter I would loose my lung function so have had lots arguments ..😢
Your daughter needs to learn some compassion Amanda. Yes, walking is good, but in your case you don't have the lung function or oxygen to help you. Every one has given you good advice. I just hope you get help soon. xx 😘
I too would phone rehab. In my area you can refer yourself direct. Even if you can't do this in your area I'm sure that contacting them would get you assessed quite quickly given your circumstances. Hope you get something sorted out soon.
Will ring them tomorrow thank you
The rehab course is generally run by physios and members of the local resp team.Having direct access to a respiratory nurse and oxygen nurse would be very helpfull for you and they can advise [but not prescribe] the best medicines and inhalers for you.They can also contact your GP if you have any prescription problems.The tablets that loosen the phlegm are called Carbocystine [or generic versions] and am very surprised they have not been prescribed to you.Do tell your GP about your swollen legs.You can contact your local social services yourself or through the the resp team or your GP.Your lack of mobilty due to breathlessness will not help your legs .Do get some help,you do not have to struggle and if your resp team is anything like the one I was eventually referred to you will feel much more supported. xx
Hi
I was initially prescribed oxygen by the head of pulmonary rehabilitation team. Used during the course.
Later transferred to the oxygen team at local hospital who do my annual review.
GPs can no longer prescribed oxygen.
My oxygen nurse is not based at my local hospital so it does makes it a little easier to get hold of her.Sadly my ever changing GP has been next to useless.
I was not prescribed O2 by my doctor but the dropping sats were spotted at the PR assessment and that set the wheels in motion [or a shopping trolley containing a cylinder in my case 
] xx
Thank you hopefully they can help tomorrow don’t know if even going to manage to get into building 🙈
Thank you Comino2 it was gp that put me on the tablets for my legs will tell gp the name of the tablets to try and the phlegm and hopefully the rehab will refer me to right place for oxygen ..
Sorry trying to text with grand daughter jumping on me
Minor point of detail, but carbocisteine is the generic name of the drug, though I see from drugs.com website that "Carbocisteine" is also used as a brand name by one UK manufacturer ("Mucodyne" is another brand name in the UK). These brand names plus the generics all contain the mucolytic drug carbocisteine. Mucolytic means sputum thinning.
[Drugs.com is a useful website if you want to check on brand names of particular generic drugs as used throughout the world, particularly for expatriates like me who buy their own drugs (in more than one country sometimes)]
Your GP is not being honest? Or doesn’t know about Carbocisteine 375mg capsules these soften the phlegm and help loosen it so that it comes up easily, I take six per day and it works, you must ask for these, Amanda, I live in Scotland 🏴 where are you located?
I am Scotland too it was my specialist at hospital that told me no such thing so will ask my GP for them .. thank you I just feel not getting anywhere unbelievable the hassle I went through for a nebuliser 4 times in 4 months app set up didn’t have it .. in end told me to keep the hospital one which means it’s not recorded anywhere for maintenance should it break down ..
Beggars belief that any specialist addressing a lung condition sufferer, particularly COPD and/or bronchiectasis denies, or is not aware of, mucolytic drugs and their importance in easing the phlegm out of our chests. I'd say it borders on negligence!
She just said there is no such thing as my lung is collapsed and they think it’s caused by me not being able to cough up the mucus so that’s why I asked .. and yes that was from specialists mouth .. I can’t believe the support I have had from this group it’s just so nice to know there’s someone to talk to ..
They got the cart before the horse. You were not able to cough up mucus because you were not getting the mucolytic thinning effect from carbocisteine or its ilk.
Can't comment on whether accumulated mucus actually causes a lung collapse - sounds a bit questionable to me having had two partial lung collapses in recent years (one due to a biopsy when my lung was being diagnosed 4 years ago and one 4 months ago during the course of a heart bypass operation).
You have my sympathies - the heart surgery-induced collapse caused me quite severe stabbing pains when trying to cough up sputum during recovery and had me arguing* for stronger pain killers with my thoracic surgeon. I'm pretty good at tolerating pain but I could see that it could be miserable if other stuff was not going swimmingly.
'arguing' too strong a word - 'taking time and effort to persuade' is closer to the mark
I agree with you Plus when you do get it make sure you have plenty of water The Oxygen Will help so much you do more things with it Really hope you see a different Respiritory Nurse
Got to wait till infection over then go back to GP for referral x
You are surely on oxygen?
No, cos they put me on treadmill at hospital a few months ago and I was fine but if I walk on normal ground it drops within a few paces went back to GP and was struggling to breath been going on months , because I was last person in surgery that day she told me to walk along corridor till I got out of breath which then a few weeks ago was 15 paces dropped to 72 after 15 paces so she referred me to rehab for assessment still waiting on app , but now I can’t do anything at all with it it dropping if I just walk few steps to next room it drops I just burst into tears last night cos I again had to face trying to get upstairs to go to toilet , I spoke to citizens advice they phoned social services on my behalf as they were helping me to fill in pip form and saw state I was in but still waiting on them told could be months and even then may not agree to stair lift due to cost .. I’m on standard care from pip so GP told me to get them told and appeal as should be on mobility too , only just got a blue badge ( applied online and added specialist report so pleased didn’t have to fight again for that .. my only income is £230 a month I’m living off hubby so have put in for universal credit ( nightmare) still waiting on assessment have filled in forms and returned .. now PIP have said haven’t received my forms luckily CAB have photocopied original I feel like I’m just fighting for everything .. I’m only 57 and feel I don’t want to go on living like this .. will phone tomorrow to try get seen quicker by rehab .. they had done assessments for me going back but my blood pressure was sky high they phoned GP immediately and got me seen straight away so got tablets for that ( which has worked) and tablets for my swollen legs sorry for long post I’m just so depressed right now
I found that I could walk comparatively easily on a treadmill because I was leaning forward holding the handles but to walk upright with no aid was a nightmare because I presume I was lugging my weight along too whereas my weight was supported by the handles of the treadmill ..... If that makes any sense? 😀
I don't understand why you are ok on a treadmill but not in normal walking, it's the same action.
I know it doesn’t make any sense at all !! Although I don’t think I would be now but was same last time at rehab okay on treadmill but dropped rapidly walking backwards and forwards to the cones
Because as she said you lean on it which doesn’t happen when walking
When i had my first oxygen assessment they had me walking around hospital corridors with a doctor altering oxygen level and using an oximeter. The doctor said i desaturate spectacularly on mobilizing.
The second one, to see if i needed oxygen full time, i had an arterial blood test, then had 1l for half an hour and a retest. He said, i think we'll skip the walking bit.
Maybe one of those would be better
Hopefully this time they will assess me properly I can’t cope like this thank you so much for your replies I really appreciate all the advice on here .. x
I take Carbosisteine also known as Mucodyne to thin out phlegm. I never cough nor do I have Mucus as the Mycodyne thinks it out. I take one tablet 4 times a day if I have a cold .otherwise just one in morning and one at night as maintenance does. They really work and most who have COPD take these as part of medication.x Sheila.
Thank you will ask my GP for them
Good luck and hope they work for you as they do for me. x Sheila
Certainly worth a try .. x
You certainly sound as if you need an oxygen assessment asap
I know this has been on since last August
Oh Dear Me Hun, You certainly need help, as for Carbosisteine, those of us on it Know they are available and do help to Liquidise the Mucus. Your GP or whoever are not trained in Lung Conditions by the sound of it. You need to have Blood gases done 1) Arterial or 2) ear Lobe to assess the Oxygen in your Blood. Yes, Rehab classes are run by Physio's who know all about Lung Conditions and can Recommend the correct Meds & Treatments to your Doctor or Consultant. Fight for your Health & Harass them, Don't be fobbed off. Sorry to sound angry, but I am with incompetent GP's who need retraining. Stay Positive Hun, Good Luck Today, Write all these things Down and take the List with You . Hugs. C. XXX
Thank you so much for your reply I have phoned rehab and they said they don’t do the oxygen assessment and to phone gp back but only got to speak to receptionist and she has referred it back to gp also said I need OT assessment for house so don’t know when the gp phoning me I’m just getting worse 😢
What a Terrible way of Running a " GP " Surgery and worse The Rehab saying that, I Know they do as That is how I initially got my Oxygen. Maybe My Area is far more "Up to Date" & Compassionate with the Needs for "Lung Diseases" . The Nurses at Rehab are Trained for Respiratory and can refer you to an Oxygen Nurse, Mine came to my Home to do an after Assessment. They are not Treating you Correctly. Please Amanda Push them, You need to be Assessed Hun. XXXX
Thank you , I think it’s cos I’m not under rehab anymore but they phoned me this morning to give me correct place for oxygen tests to pass on to GP .. GP asked to see me this morning , I now have infection so on meds for that and he was going to send me straight to hospital.. but said have to wait to see if things improve with meds’ first ,if no better in 5 days he will send me straight in... also gave me the tablets for phlegm.. ongoing saga 😩 but least I will get seen now xxx
Hi Amanda, keep us updated, seems like your moving in the right Direction, I am just getting over a Chest Infection, so My Rescue Meds are a Priority. I hope you get your assessment very soon, Take care Hun. C. XXX
Aww thank you .. had more support from this page than I could ever imagine .. hope your feeling better now .. I thought I was having hot flushes didn’t realise I had a fever 😂😂😎 xxx
If your breathing becomes really bad Call an Ambulace because your sats are dropping really low
Dear oh dear Amanda 3011 , so sorry things are really difficult for you at the moment - don't despair sunshine , there has to be another route through your problems , try some " Carbosisteine tablets , they often help me with that dam Mucus - , every morning I " Clear the tubes " as I call it ! , don't know where the dam stuff comes from " , in a week , I must shift a pint of the wretched stuff. ! Fortunately , I live in a Bungalow, so no stairs , but out side if stairs appear - I'me in trouble !! , - I try not to go anywhere outside without a friend , - just in case …. Try not to see ALL your difficulties at once - if possible , take them one by one …. I use a large Nebuliser when things get a bit difficult . - I have been in hospital 32 times in ten years , so I do appreciate the problems your going through , and certainly Rehab may direct you in another direction to help you - don't panic sunshine …. and try to look on the positive side of things .. yes, this dam disease can't be cured , but it can be MANAGED - so there is a way through - I promise you ...God bless - the GREAT HEALER …….
Aww bless you .. it’s a horrible condition wish I had known when I lit that first cigarette but hind sight is a great thing haha 😂 take care of yourself xx
Me too but with decent help it doesn’t have to be so bad Lots of love
Your life is important - so you're not rude - frankly pushy yet polite people get a better service in the NHS .
Perhaps your specialist misunderstood about "tablets" - My mum takes Carbocisteine capsules for Bronchiectasis
Carbocisteine belongs to a group of medicines called ‘mucolytics’. It works by making mucus (phlegm) less sticky. This makes the mucus easier to cough up. Carbocisteine is used for respiratory tract disorders when too much mucus is made or the mucus is too sticky.
My mum wasn't given these for ages but they helped her condition immediately.
Hi Amanda, i have asthma only and take 4 tablets a day called carbocisteine. These help tremendously as i get phlegm in throat a lot, they dont work for everyone but i think they should have at least tried you with them. They work for me but we are all different. So sorry to hear of your struggles i hope it all gets sorted very very soon for you. Good luck. Karen. Xxx
Thank you Karen it’s very much appreciated x
Prayers for you Amanda that you can get better. My wife has the same problem & has been on oxygen now for about 8 months 24/7. Hopefully you will get some help. Blessings to you.
Aww bless you and your wife .. I know once I get the oxygen it will be easier just seems to be a battle to get it
We're very fortunate here in the US. we have no problem. Fletcher Cockrell soon to be back in Texas.
No one seems to know who does what !
Hi,im I’m on carbocysteine,it makes the mucus thinner and easier to cough it up. Can’t believe the consultant told you there was no such thing.
I also have a nebuliser provided by the respiratory service.
I think ringing rehab is a really good idea.hope all goes as well as possible
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