Understanding my Lung Function Test??

[Barbz1]

Hi. I was diagnosed in June 16 with DIP & emphysema. I have had regular lung function tests. Although I've looked online to try to understand the figures, I am still confused & don't really know what state my lungs are in. I know there's a problem with oxygen saturation. Can anyone help me with my recent results please. FVC of 2.2 98% of predicted FEV1 2.2 92% of predicted FEV1/RVC ratio of 80% TLCO 41.6 KCO 61.3 The lung volumes are within normal. The reduction of TLCO & KCO indicate restrictive lung disease. My previous TLCO & KCO had dramatically decreased. I do get breathless, when static oxygen levels read ok. But with mild exertion it's dropping to 84-5 %. Should I ask for another CT scan? Grateful for any help.

[Hidden]

Hi Barbz,

I would phone the BLF helpline and ask for more info..Difficult for me to comment on your results I am not informed enough.

Another CT scan? How long was your last one? I was told every two years for safety reasons.

I see you are still breathless, it is more a question of adapting your treatment, now that they have your sats, so you can feel comfortable.

Take good care xx

Fran

[Barbz1 in reply to Hidden]

Hi Fran

Thank you for your reply 😊

I have spoken to a nurse from BLF & she explained the low saturation, but no help with the results. Problem is that, I receive the lung function results after I've seen my consultant. So I can't ask him. I rang his secretary, who told me, that the letter is for my GP, that it's just NHS policy to send me a copy. If I need explanations, then see my GP. In the next breath, said that GP's aren't always able to understand, so they would have to contact the consultant!

I think my lungs deteriorating is due to the emphysema not my lung disease.

Take care xx

[Hidden in reply to Barbz1]

Hi Barb,

Oh that’s annoying..you are left with the web..or a society..what is your disease? Try the British Thoracic website, they explain a lot..

For me with LAM it is the Fev1 I have to watch yours is good and I watch the residual volume, so it is not too elevated then I risk a pneumothorax.

The fact the oxygen levels drop after exertion needs looking at if you feel breathless. I have to take steroids and inhalers so it all helps. I juggle with meds all the time so I can control things and still take the minimum dosage possible.

Hope you get some answers and feel better xx

Fran

[soulsaver]

Hi Barb First, check your post for typo's... or post up a scan of the results - those numbers don't compute..

[Barbz1 in reply to soulsaver]

Hi Sooulsaver

Thank you for your reply. I don't have a scan of the results & have checked for typo's. The first consultant I had was confused as the figures didn't add up. I was sent for a echocardiogram & bubble echocardiogram to rule out a heart problem. I'm now on consultant number 3 who gave me these results. I have another echocardiogram booked mid Feb, I think to rule out/check the heart problem again or (he hasn't read previous notes). My previous LF letter in July states TLCO severely reduced, mild reduction in KCO , yet again I don't understand the figures. I have spoken to a nurse BLF, who explained that not enough oxygen was going into my lungs, that although my oxygen levels will read ok whilst sitting it's not making its way through the alveoli due to ILD. I had my last CT Feb 17.

I am waiting for an appointment from the respiratory team, so I hope they will be able to shed some light on the figures.

Best Wishes X

[Hidden]

My doctor told me not to read and believe anything online and not to go on these sites as they are not realible yet i cant have a decent talk with anyone at the doctors about my fears im struggling with my breathing is it your diagonsed with this crappy disease given an inhaler and get on with it is that it its a progressive disease just go home nothing else offered im getting dizzy spells headaches trying to friggin breath im lonely and scared im only 58 my sense of humour got me over anything that this life threw at me but this disease nothing to joke about anyone else feeling like me or we all putting a brave face on 😢

[bigjimmy in reply to Hidden]

Can you talk to another doctor about it?

[Barbz1 in reply to Hidden]

Hi Kittiecat

So sorry I've not replied to you sooner. It is horrible feeling so low. What is your diagnosis? Are you under a consultant or GP? It can feel a very lonely place to be in. Unfortunately depression & anxiety hold hands with the conditions we have. Have you been referred to the Respiratory team? If not, try to contact them & they should speak to you about pulmonary rehab & hopefully explain about your condition. Also make an appointment to see you. Also contact BLF & ask a for a nurse to call you back, they help to explain & you can ask questions. I do empathise with you, as I to have fought through life & humour has helped. Sometimes, I feel ok, other times it's brave face or I'm on the brink of tears. I think so many of us feel lonely, especially if we are on our own. Where do you live? Is there a breatheeasy group near to you? I'm not sure how to contact you personally though here to speak to you personally. I'll look into it, would you like me to? Someone to share the s... with. Please reply let me know how you are. Big hug x

[Hidden in reply to Barbz1]

Hello barbz1 i went to see a lung consultant a few mths back to hopefully get a lung reduction but no empyhsemia all over my lungs dont expect to see her again she didnt seem that bothered just said come off seretide and pick an inhaler havent heard from her since cant get to rehab transport from hospital before now cutting costs cant have it so why bother i stopped smoking for 6 mths breathing was worse took antibotics no better i have about 5 ciggies a day now not helping and nobody seems bothered with me so annoyed with everyone including me doctors just dont seemed bothered anymore i know im getting worse i dont think just get on with it is good enough we are all let down by the system cutting costs changing to cheaper medication no transport great existance cos im not living sorry for negative rant but feel no hope

[Hidden in reply to Hidden]

I live in suffolk on my own at 58 and stage 3 empyhsemia i cant even date 😢

[Vonnie50]

Hi new in here and finding all very daunting we are local to each other I think maybe we could keep in touch and help each other?

[Barbz1 in reply to Vonnie50]

Hi Vonnie

Nice to hear from you. I live in Lordswood Chatham. I've been saying about meeting people more my age as well, but haven't done anything, so it's good you have! I'm a young 56, as I like to think anyway 😀 Yes, diagnosis does feel daunting & bit scary. I have a lung disease DIP & emphysema. Be great to meet up with you. Not sure how to contact you though here though.

[Vonnie50]

Found your message at last be great to meet up [edited to remove personal details].