Emphysema

[Lina-61]

Just been diagnosed with Emphysema not been referred by a consultant by the gp just managed by him my inhaler is being changed how do I find what stage I'm at with Emphysema

Thank you

Lina61

[Lol1944]

First port of call is a respiratory specialist asap

[Lina-61 in reply to Lol1944]

I saw a lung respiratory physio on Monday and he is changing my inhaler to a blue one and a green one my oxygen levels were fine blood pressure and chest ok don't think the gp will refer me due to covid can't get a face to face appointment with him xx

[Ergendl in reply to Lina-61]

I'm on a blue one and a green one. They work very well for me.

[Lina-61 in reply to Ergendl]

Thank you the green one I will get you spray a fine mist and breathe it in

Lina61

[CDPO16]

Hi Lina, it is fairly common practice not to be referred to a specialist unless your GP is unable to manage your condition.What stage your emphysema is at could be gauged by a spirometry test but these aren't being done at the moment because of covid. The stage isn't relevant when it comes to treatment and management of the disease. At any stage the emphasis is on staying as healthy as possible, eating well, keeping up an exercise routine and treating a flare up or infection promptly.

Lots of information about all of these on the BLF website as you may already know and your lung physio will be a great source of advice and information too.

[Lina-61 in reply to CDPO16]

Thank you so much glad I'm in the loop the pharmacist rang to see how I was getting on with the inhaler I have she will continue to keep in touch with me about my new inhalers not sure if lung respiratory physio will discharge me or keep me on their books .

Lina61

[CDPO16 in reply to Lina-61]

Sounds like you are getting pretty good support so far. It's really good that your pharmacist has been in touch with you about your change of inhalers. It may be that if your lung physio discharges you, you will be able to self refer in future if you need more help. Certainly worth asking if that time comes.

[Lina-61 in reply to CDPO16]

Yes I've self referred myself all the time

Lina61

[hypercat54]

Hi Lina sorry to hear you have emphysema. However unlike heart disease or cancer you aren't automatically referred to a consultant on diagnosis. This is one of the thing BLF is fighting for as lung disease is the 3rd biggest killer but has one of the lowest budgets for research and treatment.

As for your stage ask your doctor.

[Lina-61 in reply to hypercat54]

Thank you he did say when I get my flu jab might be able to have a spirometry test will get in touch with him in a few weeks

Lina61

[hypercat54 in reply to Lina-61]

Well that's good news. I haven't been able to have my annual spirometry since January 2019 and none of us have this past 18 months or so.

[Lina-61 in reply to hypercat54]

Yes due to covid and not have anyone to do the tests it's a no go

Lina61

[Lol1944]

I am beginning to think I am very lucky in my neck of the woods. Since last September I have had a full respiratory study, three 3 monthly ct scans, echocardiagram, three face to face consultant visits, all between Southport and Ormskirk hospitals.Are other hospital trusts hiding behind covid?

[CDPO16 in reply to Lol1944]

Depends on individual circumstances. Not everyone needs a specialist referral for their condition to be treated or monitored if they have good support from their extended primary health care team. Other, possibly more complicated conditions, may need specialist assessment and tests beyond the scope of a GP. A GP will usually refer if he/she feels it is appropriate.

[Lina-61 in reply to CDPO16]

Thank you so much just put the bins out felt really tired and stressed doing and the fresh up my nose didn't help

Lina61

[Lina-61 in reply to Lol1944]

My gp won't see anyone unless necessary he said until he can get a full waiting room of patients he won't see anyone yes think he's hiding the surgery behind covid

Lina61

[Lina-61 in reply to Lol1944]

That's really good my lung respiratory physio said also breathing tests are not being done at the moment.

Lina61

[Annie31]

@ stargazer!

I too have had a couple of instances like that recently, admittedly they didn't last as long as yours but were very scary! That may well be because I'm well versed in breathing exercises to calm down because of panic attacks in the past and suffering from anxiety. I was beginning to think it was the start of panic attacks again, they need no rhyme or reason to come on sometimes but also wondered about the extreme weather conditions we have had in the last few weeks causing this. Lots of things can affect emphysema on a day-to-day basis so sometimes it's hard to attribute any one thing to an attack of breathlessness. I have found the humidity very hard to cope with and then the heat last week just about finished me off! Try not to over worry about this and the fact you felt the urgent need to strip your clothes off sounds like a 'fight or flight' aspect of a panic attack. Try to take it easy! I've no doubt other members will come along with some good advice. Best wishes!

[Annie31]

Sorry, my reply above won't make any sense to you as the member seems to have removed the reply on your post! Either that or I am in the wrong place and going do-lally!

[Lina-61 in reply to Annie31]

Lol

[Lina-61 in reply to Annie31]

Was it from Stargazer I got notification of a reply yes looks like it's been removed

Lina61

[Annie31 in reply to Lina-61]

Yes, weird!

[Lina-61 in reply to Annie31]

Definitely maybe posted in wrong group x

[Annie31 in reply to Lina-61]

Just noticed about five minutes ago, member has started a new post about emphysema flare-ups. I think she thought she was hijacking your post or something! All's well that ends well!

[Lina-61 in reply to Annie31]

That's good Annie

Lina

[garshe]

My Respiratory team are always a great help ,they have continued working through Covid. Unlike the Doctors I can contact them everyday. They even come to my home Need be.and are always a great comfort. I live in Wales so dont know if they are as helpful elsewhere They are more knowledgeable than the GP and work closely with the Consultant. Just having reassurance helps so much. Good luck xxSheila 👍💕😘

[Lina-61 in reply to garshe]

Thank you so much I can keep in touch with them if I need them

Lina61

[garshe in reply to Lina-61]

The Respiratory Team can get you on one of their Pulmonary Rehab courses. This is for 6weeks, twice a week. They will assess you by tests etc. Great advice and you will get to know them. I never go to my GP ,havent been to my surgery for years. My Respiratory team arrange if I need to see my Consultant and constantly monitor my condition .this is why after 11yrs of being diagnosed with severe COPD I am as active as ever. Good luck and remember COPD is not Terminal its Progressive, you can control this and slow it down. Always be grateful for what you can do and not dwell on what you cant. Dont rush ,go at your own pace ,this stops you getting breathless.Be Positive and you will be fine. Good luck xxSheila 💐💕😘👍