Self help for Emphysema

[Twin1]

Hi. I'm new to this site. Can anyone offer some advice please. My gp advised me that I have Emphysema and has referred me to a specialist. I am feeling truly awful. My GP will not give me any meds to help with my breathing difficulties or to clear the mucus in my throat. Just had a letter re my hospital appointment and it states if I have not heard by 20th May call them. I am desperate. I feel I cannot wait a month to see a specialist. Can anyone suggest anything I can do to ease my symptoms. I have ordered some oxygen as suggested by a friend who is a retired nurse. Many Thanks.

[sassy59]

Welcome to the forum Twin1, you've come to the right place for friendly, helpful advice. I really don’t understand why your GP isn’t helping you. Some GP practices have special nurses for respiratory problems so check that out. Maybe you could have an inhaler prescribed but shouldn’t have oxygen unless prescribed by a doctor. Not everyone needs it. My husband has COPD but isn’t on oxygen. I’m sure you’ll get more replies soon. Take care xx

[Twin1 in reply to sassy59]

Thank you. I hv already had some very helpful and friendly advice. I am already on inhalers and other meds for brittle asthma. Am on highest doses so GP couldn't prescribe anything else he said. I was hoping for something to dry up the mucus in my throat. Was on steroids and antibiotics for 1 week but it didn't help. I shall be careful with oxygen. Maybe not my best buy in retrospect. I did see 2 asthma nurses last week but they could not prescribe or help either. Thank you for taking the time to reply. Best wishes x

[Damon1864 Volunteer]

Hi Twin1 and welcome to the site. Have a look on Amazon for a flutter valve not a dear one you can get cheap ones which are just as good that will help bring up the mucus. Is there no ot hi er GP in the practice who can see you. If you feel you can't put up with the mucus and it'making you ill please go to A&E and get checked over you might have an infection of your mucus is green. Hope this helps you and please let us know how you are doing. And be careful using the oxygen you may not need it. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

[Twin1 in reply to Damon1864]

Hi. Thank you for taking the time to reply and for the useful information. I am going to call my GP again tomorrow. I shall ask for a different GP. I am desperately trying not to go to a&e because of covid. But I may hv to. I shall be careful with the oxygen. I think maybe it was a hasty buy. I shall let you know how I get on. Thank you for your kindness. Best wishes. Jan xx

[Bevvy]

Sorry to hear this but your gp is treating you appallingly! How were you diagnosed? Unless had specific tests your gp can suspect something but can’t diagnose. Of course gp could prescribe some medications for you. They should have knowledge to be able to prescribe a reliever and emergency inhaler. Reliever inhalers are often trial and error as to which will suit you and help you best. So would be totally sensible to start process. In fact many people (in UK) are treated purely by gp and don’t see a specialist.If you look on YouTube there are examples of how to expel mucus in the throat and there is medication that can help with this.

Ask at your surgery to speak to respiratory nurse who may have some helpful suggestions and speak to gp on your behalf. Or have an appointment with a different gp because it is awful that you are being expected to go for weeks with no medical intervention.

However I would also say (as have others) that your friend has been no help and you should not use oxygen without medical support. Oxygen is a medication as any other and again you need specific tests to discover IF oxygen is required. Oxygen is prescribed if required to protect internal organs. It is not used to aid breathlessness. For some people this is a side effect of using oxygen and does help but is not what oxygen is prescribed for.

Finally if you are struggling to breathe don’t hesitate to contact 111 or 999. Paramedics can assess you and advise of you require hospital/A&E intervention.

I hope you are able to get some more proactive support in the next few days.

[Twin1 in reply to Bevvy]

Hi. Thank you so much for your very informative reply. You have helped alot. I am an asthmatic so do hv inhalers etc for this. I am at the maximum dose of all of them. I asked my GP for ventolin nebules as I hv a machine. I previously lived in Surrey and I had these on repeat prescription. I now live in East Sussex and my GP here will not supply them. Even though he put me on a nebuliser at the surgery and saw it benefitted me. I find it very frightening when I cannot get my breath. It does eventually pass. I shall phone my GP AGAIN tomorrow to say that I cannot wait a month I can't live like this for that long. I wish I had waited to order the oxygen. My friend used to run an asthma clinic before she retired so I just assumed her advice was correct .I hv just wasted £30. I was just so desperate. Thank you again for taking the time to reply. Best wishes.

[Bevvy in reply to Twin1]

Ahh. It’s a difficult one about nebulisers. Many GPs refuse to prescribe nebules for them. This must be SO frustrating when prescribed previously. I am lucky that when I changed gp practice after moving my current gp agreed to continue prescribing the nebules. Certainly that is something you can discuss with consultant when you see them.I still believe your gp should be more proactive and try different inhalers. I have asthma/COPD overlap and gp able to prescribe helpful inhalers.

Calling the helpline is good advice. They can discuss and explain different inhalers. Plus advise on rescue / blue inhaler now you can’t use nebuliser.

It may be helpful to contact PALS at hospital you are to attend. They may be able to intervene with regards appointment date.

[Twin1 in reply to Bevvy]

Thanks again. I shall call the advice line and if I get no joy with my GP I will call PALS. You really hv been so helpful I can't thank you enough. Take care.

[Thepainterswife in reply to Twin1]

My husband ended up in intensive care due to his prescribed oxygen being set at too high a level which lead to a build up of Co2 , he was given a 50% chance of survival, so do be very careful 🙏. Fortunately he pulled through , his concentrator is now set much lower and he carries a card stating he is oxygen sensitive . I do hope you’re given the meds and support you need very soon 🤞

[Twin1 in reply to Thepainterswife]

I hope your husband is fully recovered. I never realised how much damage oxygen can do. I had never heard anything like that before. Its scary to think what could happen. I hv taken heed of the warning and shall definitely not be using oxygen unless it is prescribed. You hv been so helpful. Sending you and your husband best wishes. Jan

[Thepainterswife in reply to Twin1]

Thank you 😊 Tbh he’s never fully recovered from that episode . At that time Geoff had been on prescribed oxygen for three years and no one had told us about this potentially lethal downside of oxygen . In the first twelve months he realised he constantly felt unwell in the late evening and the respiratory nurse told him to drop his oxygen from 3 to 2 but never told us why he was feeling unwell ie Co2 was building up in his bloodstream . Two years later he was rushed into hospital and we were told to prepare for the worst. Thankfully he survived but there really should be more information available regarding oxygen use . Geoff still needs to use oxygen , now on 1 but we are very aware of the need for vigilance, unfortunately the only way to detect Co2 build up is via blood tests but we know if his breathing his really bad and nebulisers and Oromorph don’t help it’s time to get an ambulance. I’m just so glad you found this site so you can benefit from our experiences and I’m sure your friend was only doing what she thought best 😊 x

[peege]

Please try calling the helpline for advice 0300 555 2800 9-5 Mon -Fri .I also think your gp has been no help at all, how did he/she diagnose you? I may be wrong but I think copd/emphysema can only be diagnosed by spirometry test. Some gp practices have these machines but not using them since covid hit.

I know you must not use oxygen without the proper assessment by experts - especially if you're a CO2 (carbon dioxide) retainer. Your friend isn't helping to suggest this.

If you smoke its a good idea to stop, healthy diet, gentle exercise, drinking plenty of fluids to keep any mucus in your lungs moist will all help as will learning lots from other patients here with copd or other lung diseases.

One thing that the doc must be commended on is referring you to a consultant thats brilliant 👏

[Twin1 in reply to peege]

Hi. Thank you so much for taking the time to reply. My GP diagnosed me using chest xrays. I just assumed this was correct. I didn't realise a specialist should hv been involved. You just assume what ur GP tells you is correct. I have been advised by others on this site not to use the oxygen. My friend is a retired nurse and used to run asthma clinics. She only wants the best for me. I shall not use it unless the specialist says to. I hv already had some very helpful advice on this forum. So pleased I joined. Thank you again.

[peege in reply to Twin1]

Yes, we trust our GPs to be right & know what they're doing, we tend to forget the G stands for general. They know a bit about many many ailments and some are experts in one field - mine is the practice expert on balance! So they know a bit about copd and asthma & not the other lung diseases. It may be worth trying to find out if there's a lung expert at your practice .In the meantime if you have mucus in your lungs there's the 'huffing technique' to get it up & out - see youtube who have demonstrations of other breathing exercises like deep diaphragm breathing (I use that to get oxygen levels up & when stressed) and pursed lip breathing which I use when breathless out & about. They could help get you to 20th May.

Which ever lung disease we all try to avoid mucus resting in the lungs as it's a perfect environment for bacteria to grow causing infections .

It's a massive learning curve so you're in the right place for understanding and support.

Best, Peege

[peege]

Yesterday a new member Zesty22 posted the exact post as you, just diagnosed with emphysema. He/she has 36 replies so please have a look in recent previous posts. Wishing you the very best. Peege

[CDPO16]

Hi, I'm so sorry that you find yourself in this situation. It does sound a bit like you have been referred to a specialist because your new GP doesn't know what else to do. I can't add to what others have said but I do hope that you get some help and advice soon.

[B0xermad]

Hi and welcome, have you considered buying an oximeter to see whether your level is at on a daily basis? Also a device to help clear the mucus, acapella or flutter because its amazing how breathless and bogged down feeling being constantly breathless can make you feel

[CDPO16 in reply to B0xermad]

Oxytetracycline? This is an antibiotic and not something you can buy. I wondered if you meant an oximeter if you don't mind me chipping in x

[B0xermad in reply to CDPO16]

Lol yes I typed oximeter but predictive text changed it😬

[CDPO16 in reply to B0xermad]

Predictive txt has a lot to answer for. Hubby turned it off on my phone otherwise lord knows what I'd have been writing!

[B0xermad in reply to CDPO16]

😂

[garshe]

Mucodyne also known as Carbosisteine tablets great for thinning mucus. Has to be prescribed by GP. Careful with oxygen as not suitable for everyone. We may all have the same condition but we are all different, what suits one doesn't necessarily suit all. I have a Respiratory Team whom I can call and speak to whenever I need to, they also make home visits to check before I take antibiotics, steroids or need my oxygen Hope you get sorted soon . xxSheila 👍💕

[Twin1 in reply to garshe]

Morning Sheila. Thank you for your advice. I will ask my GP if they will prescribe it. Hopefully I will hv proper medical support once I have seen the specialist. Take care of yourself. Best wishes Jan ❤ x

[garshe in reply to Twin1]

I also take Covonia Herbal Mucus relief cough syrup. I dont have a cough but it does help with Mucus .It contains Liquorice which I find great. Can purchase from Boots or any Pharmacy. xxSheila 👍💕

[Goto4]

As mentioned the flutter device works, need to give it a few weeks to notice. Suggest u buy the original ‘Flutter’, looks like a white clay pipe. Also try gargle with warm salt water in morning, and try Potters pastilles. (Green pack)All the best

GoTo4

[Twin1 in reply to Goto4]

Thanks so much. I really appreciate your help. I hv ordered the flutter device. I shall purchase some potters pastilles too. Take care x

[Karenanne61]

I can't add to the advice been given but please be careful using oxygen. I've been told I'm 'allergic ' to oxygen! I have to carry an "oxygen alert' card in case of emergency. I hope you get the help you need very soon.

[Twin1 in reply to Karenanne61]

Thank you for your response 🙏 I shall not be using the oxygen. I didn't realise the implications.

[Karenanne61 in reply to Twin1]

As others have said, just check whether it's appropriate for you, or not. Good luck and welcome to the forum.

[Davegt]

You should not have oxygen unless it is prescribed. Some people are CO2 (carbon dioxide) retainers and prescribing oxygen can have undesirable consequences. It should also be remembered that oxygen does not help with breathlessness. First of all you need to have, at the least, a pulse oximeter test that shows how efficient your lungs are at processing oxygen. If your oxygen levels are above 94% resting and 90% when exercising then additional oxygen is not usually prescribed. I am not a doctor, but this is how it was explained to me at the respiratory clinic. I use ambulatory oxygen for walking and more exercise biased tasks within the home. Before getting a prescription for oxygen, I had to attend the respiratory clinic and do a 6 minute walk test, with and without oxygen to evaluate whether it was appropriate. Again I emphasise it does not help with breathlessness but ensures the organs of the body get sufficient oxygen. But you can have too much oxygen and the respiratory clinic determine the appropriate level for each individual.

I think you should ask your GP why he does not feel medication would be of benefit and point out hospital appointment could be some way off.

Once again, I stress, I am not a doctor and just feel concerned that you are getting oxygen without going through the proper channels. I mean no disrespect to your friend but think you should follow the correct procedures.

[Twin1 in reply to Davegt]

Hi. Thank you for your reply. You seem very knowledgeable. I spoke with a nurse at the Asthma and Lung Foundation earlier and she said not to use oxygen too. I will obviously follow the good advice from you both. I hv tried to get thru to my GP but my call was cut off having waited 25 minutes in the queue. I shall try again. Take care of yourself and many thanks.

[Davegt]

Oh I am so glad you spoke to Asthma and Lung Foundation to confirm my thoughts. I take an interest in health issues that affect me and was very concerned about you ordering oxygen before having proper tests. Please take care and I hope you are able to resolve your issues soon. 👍🤞

[Twin1 in reply to Davegt]

Thanks again for your help. Best wishes.

[Dizzart]

I do hope you have had lots of good advice but just to say my GP was useless so I turned to here and one thing I learned was how much help 180mg. of antihistamine and 10mg. of Montelukast we’re. So I rang my doc and using British Lung Foundation as leverage got them so now I bring 3 big mugs of tea and one of each tablet back to bed every morning (which is where I am typing this) AND ...... I find clogged chest starts to clear before I take my inhaler around 10 o’clock. Good luck remember there are qualified nurses for advice here 👍🏻👍🏻🍮🍮🍮 and ps. I used to smoke but now vape , no inhaling allowed, it’s just my dummy 😊

[Twin1 in reply to Dizzart]

Good morning. This forum is amazing. I hv had so much support already. I am on antihistamines and montelukast too. I hv finally managed to get thru to my Gp so have a phone appointment sometime today. I too am gonna say hv spoken with British Lung Foundation and request suggested medication. U said ur drinking 3 mugs of tea which I hope you enjoy 🤗 is that to help clear the clogged chest?? You hv a fun sense of humour which I think helps too. I'm trying to stay positive and hv a laugh 😃 Thanks for taking the time to message. Best of luck 👍

[Dizzart in reply to Twin1]

👍🏻😃🤞

[Patk1]

If u smoke do stopDrink plenty of fluids

Read up on lung clearance techniques to get mucous up

[emphesemalema]

N-acetylcisteine 600mg for cough/ mucous is available without prescription from your local pharmacy. Speak to pharmacist.