Need some help

[Chason]

Hi all. Ok well I had my official diagnosis today.

Moderate emphysema in both lungs evf1 74%

Problem is they told me nothing. No treatment. No prognosis. All they said is further down the line I could be put in the lung transplant list

I'm totally confused and lost. All they kept saying is you need to ask the consultant that

HELP!!!!!

[Chason]

Oh and they didn't even have any written information for me to take away and read

[stilltruckin]

webmd.com/lung/copd/feature...

[Chason in reply to stilltruckin]

Hi thanks for that great for some of my question. But I already am short of breath going up stairs. In and out the bath. Getting dressed walking a short distance. This is what I don't understand. Intact I'm just totally lost.

[Hidden]

More knowledgeable people will get back to you tomorrow, I am sure. Reading through the posts you will see quite a few have experienced what you are going through. I think the first thing to do is to stop panicing, easy to say I know. Get back to your GP Monday morning, plus I think it would do you good to ring BLF help line and speak to an experienced nurse. They are excellent. Kaye

[Minushabens]

I think you've been left in the lurch a bit there. It's one hell of a jump from COPD diagnosis to lung transplant so it seems to me that you need to find out exactly what the diagnosis & prognosis is and whether there are other bits of your personal health jigsaw that will help you understand better. the FEV-1 reading needs to be used in conjunction with other tests to give you a full picture (e.g. sputum samples, blood tests, CT scans & so on).

COPD covers a range of ailments so you need to see if somebody can talk you through what is going on & any further tests that will help your understanding of your condition. In fact it may well be that you have several things going on...many of us do.

As Kathiesue said, get back to the surgery as soon as you can & speak to your GP. You can also see if they have any sort of senior nurse practitioner or respiratory specialist who can spend a bit of time with you & translate any hospital letters into English.

Good luck & I hope you soon feel better.

[Chason in reply to Minushabens]

Hi

I've had all the tests done. Echo, lung ct and LFT with gas transfer

Echo is ok

LFT has 74% fev1

Ct shows moderate emphysema in both lungs.

But still there not telling me anything

[Minushabens in reply to Chason]

Doctors aren't always very good at explaining in layperson's language so you just have to keep asking & if you don't understand, ask for them to explain again.

As mentioned above, maybe give the helpline a call. Sometimes it's just working out the right questions to ask. It's hard when you first bump into the system & easy to feel lost & bewildered, but there is specialist support out there to look at your personal details & interpret what you have been told & help you work out the right questions to ask.

I'm not a doctor so I don't know what to say about your sympoms or prognosis, but keep nagging & don't just walk away if you're unsure about what you have been told.

[stilltruckin]

I was diagnosed at age 55 with an FEV1 of 67%, but at the time only got at all breathless when striding uphill and suchlike. It was a number of years before I really noticed any impact on less strenuous everyday activities - and before I was prescribed any medication (think they'd mislaid my diagnosis).

Now, aged 66 and with an FEV1 of 25%, going upstairs at a brisk pace leaves me breathing quite hard but, if necessary, I could immediately go down and back up again, however I'd then be incapacitated for a few minutes . . . But the extreme shortness of breath would distress me no more than any other transient physical discomfort. I'm used to the sensation because I exercise to the point of moderate breathlessness a dozen times a day, every day. Highly recommended.

Dyspnea, the subjective feeling of breathlessness, has a significant psychological component, anxiety makes it worse:

kcl.ac.uk/ioppn/depts/pm/re...

[FarmerD]

Hi Chason,I have very severe emphysema,Fev1 of 23% up 3% from last year so it can improve with exercise.The most important thing to do is stop smoking if you still do.If you don,t stop smoking your condition will rapidly get a lot worse.Talk of transplant lists at this stage is ridiculous you have many years to go before that will be considered.I,ve had Copd for ten year but went downhill quickly after a bout of pneumonia three years ago (I.m 60) and we have only talked about transplants in the last two months.My liver is messed up so probably would,not cope with the anti rejection drugs so going to try the valves instead.You should ask to be referred to a consultant or at least a doctor who knows what they are talking about.Click the red balloon at the top of this page follow the links and phone the BLF help line they are medics that know their stuff.Don,t bother consulting Dr Google it will only scare you with misinformation.Best of luck,let us know how you get on.D. Ps..You can go on

YouTube,type in Copd breathing exercises into the search bar,that will help you.

[Pietba]

How old are you? Something honestly don't add up. If you are on 74% and nothing major happens you should theoretically be fine - why already talking lung transplant?

My readings are more or less the same - age 57 - Climb mountains, Walk a lot and according to Pulmonologist should pas away of old age. Hardly ever get short of breath only when I've got a cold - I would ask a lot of questions if I'm in your situation.

[Chason in reply to Pietba]

Ok well they told me this

I have moderate emphysema in my alveolar. Gas transfer is lower than normal due to the damage

Breathless on mild exertion like walking up the stairs

There is no copd yet it's pure emphysema