Emphysema COPD

[Stu0151]

I was diagnosed with Emphysema in February and told to consider a lung transplant, I have since been for oxygen saturation tests and also a full lung function test, I am waiting for an appointment for pulmonary rehabilitation classes. Is there anybody out there who is able to advise how long you have to wait for the test results and how soon you are offered oxygen therapy.

[stone-UK]

Hi

There is no straightforward answer to your question, my test result where know within two weeks, ask your GP they are not always so quick to keep in touch.

Pulmonary rehabilitation start with an assessment then the course start shortly afters.

Again depends on our many classes they do, and how far they are into their current classes.

Oxygen therapy is not guaranteed to be part of your treatment, it is dependant on you oxygen saturation levels both at rest and during exercise .

I have be using Ambultory oxygen for the past two years, I am stage four, very severe.

[Hidden]

I heard if you smoke you have to wait stay in hospital to make sure you have stopped smoking before you given oxygen.

Dont know how tru that is tho or if myth

[janetginty1960 in reply to Hidden]

I cant say what your hospital policies are but my husband never stopped smoking even in hospital he would get a porter to take him for a cigarette .Our doctor told him once he had emphasema it would progress no matter what

[Batbara in reply to janetginty1960]

Very surprised the dr. Said that. It's almost like giving someone a pass to continue exacerbating the problem. Everything I've heard or read about copd and smoking says that quitting is one of the best things you can do to slow the progression.

[frank65 in reply to Batbara]

amen to that

[Puffthemagicdragon in reply to frank65]

I agree. Taking away the cause will stop the emphysema getting worse. Your lungs will only deteriorate through the aging process as normal peoples.

I am Stage 4 very severe and mine hasn't got any worse since being diagnosed 4 years ago.

[janetginty1960 in reply to janetginty1960]

In the later stages my husband said I should have stopped smoking when you first diagnosed it and the doctor replied you would still be here in this state if you had I'm only passing on what my husband was told and he did stop smoking for some time but it didn't make a difference and in the end we both decided if this is happening why stop one of the few pleasures he had.Maybe your case is different but he lived with it 15years and sadly passed away at home as he wanted 2 years ago I'm just passing on what he was told

[Hidden in reply to Hidden]

Myth. I smoked a cigarette moments before walking in to the clinic. I was on oxygen in less than an hour, which is how long it took for Me to get thru the ER. I thought I had a bad flu. lol 😊

[Brecksfield]

When I go for Pulmonary Function Tests, I request a copy of the results there and then. I have IPF.

[Joy123]

Hi Stu0151,

I have a lung function test and fitness to fly test twice a year. At the hospital I attend I have the tests, get told to wait 15 mins and are then handed the results, I'm usually heading to the clinic on the same day and take them with me. I know all hospitals are different, I hope yours is as good as mine. I've been to Pulmonary Rehab, I found it quite good, nice to exercise or should I say attempt to, with others in a similar position. You're only encouraged to do what you are capable of, everybody has an individual plan. I had a 'laugh' if nothing else, I feel that's all I can do somedays! The session I attended was twice weekly for six weeks, if you missed a session then your six weeks was just extended. Also, I went back for another session as I hadn't improved much and was invited to go back again but haven't taken them up on it, yet! As for oxygen therapy I'm afraid I don't know anything about that. I hope this is of some help, I wish you good luck and I hope you don't have to wait too long for attention. 😊

[FarmerD]

It strikes me as very early in diagnosis to be talking about transplant.Next time ask them to explain what is going on while you,re doing the tests and they may tell you the results there and then,All hospitals differ slightly.Are you in the UK?Oxygen is offered at end stages normally.I have very severe emphysema,Fev1 20% and oxygen would not help me.You will get lots of information at the rehab course ,good luck.D.

[aberdeenman]

hi stu

ive been treated as suspected copd for over 2 years, and was just in December I saw a consultant at resparatory clinic, where I had a spirometry test and was told there and then I had very severe copd and emphysema with a fev1 of 18%. consultant did mention to me about a lung transplant but not that I had to consider one at the moment he said was maybe an option for the future. as for oxygen therapy I was told my stats always okay so no matter how breathless I am don't need oxygen. ive just started pulmonary rehab, had 3 sessions first one was quite hard I think I did to much I felt better after 3rd one as you learn how much you can do and pace youself.

tam

[punkyb in reply to aberdeenman]

This amazes me ..Wow I thought everyone who had emphysema needed oxygen... SO much to learn!

[Stu0151]

I would like to thank every one who has replied to my posting.

I find it very hard with these headaches 24/7. It helps so much that other people who are going through the same can offer their advise and support. Does any body else suffer with headaches, if so do you know the cause and what can be done to control them. Best Regards Stuart.

[westielady1956]

Well you can ask what your FEV is that will give you some idea how bad it is. I am a smoker and on oxygen 24/7. I do turn my oxygen off before having a smoke.

I have emphysema causing my COPD, if your condition is bad they will put you on oxygen.

[Hidden]

Well, My Dear Friend, it's been My experience that the Technician doing the test has the results right then. You, the Patient, however, must wait to get the results from Your Doctor. 😊

[Puffthemagicdragon]

I got my results straight away.

Oxygen therapy is mainly for keeping the organs in good condition.

I am on 1/2 L/min. I don't always have too use it.

Oxygen percentage in the air is 21%. 1/2 l/Min is about 22.5 %, so not a lot of difference.