Lung Function Test results

[Fennella02]

Good morning all

I have just received my most recent set of PFT results which state that my lung function is stable. This is the bit that Doctors pay attention to yet, when I look at my results, I see (over the course of a year & 3 sets of PFT's) a PEF on spirometry that has fallen from 6.5 to 4.6, TLC from 5.2 to 4.6, RV/TLC ratio from 35 to 50 (now 141% pred). My FVC, FEV1 have fallen slightly and all tests of respiratory muscle strength have fallen significantly.

Is this 'stable'? Would others be happy with this statement? I'm slim, active, non smoking and extremely determined not to give in to the demands that my chest is making on me to slow down but feeling rather concerned about this decline. I'm worried that my doctors are too complacent as my O2 SATs are good but I am struggling even to walk my dogs these days and, at the age of 48, had anticipated staying active for a little longer . . . My GP openly admits to not understanding these tests although she is very supportive in all other ways.

Thanks for reading. Clare

[Hidden]

Hi Clare I must admit I don't understand the figures in decimals, only in percentages, so am struggling to understand them.

Good on you though for doing your best to stay active and live a healthy life. A positive and determined attitude is the best way to manage your lung condition so you control it rather than it control you. Keep on trucking. Hugs x

[mmzetor]

I am like cough I only know by percentages but if its only a slight fall I wouldn't worry to much about the numbers if you had the test tomorrow it could go up a little , I think a lot of gps could do with more training where reading the results are concerned

[Fennella02 in reply to mmzetor]

Thank you to you and Coughalot.. I've had another look at my figures and I see that the PEF has dropped from 100% pred (04/14) to 69% at the past two sets of tests, whilst the RV/TLC has increased from 100% pred to 141% (this is not a positive increase).

I'm not too caught up with a certain amount of fluctuation but these figures have worsened steadily and consistently. I'm mostly concerned about the possible misuse of the term 'stable'.

Many thanks for your input. Clare x

[O2Trees]

Do you have a respiratory team in your area that your GP could refer you to? We tend to forget that GPs are generalists, they can't know about everything in detail. So their job is to be a referral gateway to others like specialist respiratory nurses or consultants who do know. You are entitled to an explanation.

I too understand results better when they are in percentages. I just looked at my last LFT results to see if i could work anything out, but mine are so different i don't think trying to make a comparison would help. Sorry, not much use!

The BLF helpline nurses are great at explaining; try phoning them 03000 030 555 office hours. Take care

[Fennella02 in reply to O2Trees]

Hi O2. I have a resp consultant in my local hosp and do my PFT's in a a teaching hosp in another health authority 120 miles away . . . It's complicated and inefficient as he defers to my rheumy who in turn defers to my resp Dr. There's a risk of getting caught in the middle of a game of ping pong which worries me.

Thanks for replying. Clare x

[O2Trees in reply to Fennella02]

Im sure you realise that because of the various consultants you are seeing, you may need to be the gatekeeper of your information. Hope you keep copies of every test you have, take them to every appointment and also use the cons' secretaries who are usually very helpful, when you have queries.

I see below you have dx of lupus. I know a little about that as my father had it very badly - he was in and out of hospital during my teens. He had a lot of rheumatic issues.

St Thomas's hospital in london is the world centre of excellence for lupus - Professor Hughes runs the clinic there. Because of my family history I've been referred there twice, first time found lupus, second time when they had better tests they ruled it out.

Do you think your GP or one of your cons would refer you for second opinion? Im sure they would be able to give a better joined-up picture of all your symptoms.

Also, have you thought of doing pulmonary rehab? Most there have copd but there are others with less common illnesses and everyone seems to benefit. The physios work with individuals who may find some of the exercises difficult because of e.g. pain. Sorry if this isn't appropriate.

[Katinka46]

What is your diagnosis? The numbers will be relevant to your condition.

All the best

Kate xx

[Fennella02 in reply to Katinka46]

Dx is Lupus/UCTD with unexplained weakness- particularly respiratory. My Rheumy watches for associated fibrotic conditions but isnt so familiar with my set of problems. It is the decline that hasn't stopped yet that concerns me. From no respiratory problems in 2012 to quite some difficulty now. I have a respiratory appt in Feb but this is in a different hospital/health authority from the one that has done the tests . .

Many thanks for your reply. Clare x

[Katinka46 in reply to Fennella02]

Curious because of the complexity of your condition(s). Tricky when there are two consultants involved. And maybe there is a degree of buck passing? I have had a bit of that as there are two things going in my lungs and two hospitals. Now been discharged by one as the chronic thromboembolic disease is stable (and I agree).

However my resp consultant has said that my airways disease is also stable. My husband (he is good at numbers) and I disagree.

You seem to have hyperinflation? What is the cause of that? I think you should ask your resp to explain. I believe that I have a fibrotic condition. I am very breathless, more so than can be explained by PFT numbers, which leaves it open for doctors to think that I am exaggerating, and that things are better than they are. I have none of the symptoms that would be associated with COPD or asthma: no cough, no wheezing, no mucus production. There is evidence of air trapping, and hyperinflation. But it is over two years since the last PFT. I think that my lungs were damaged by the PEs I had six years ago after hip replacement surgery. Lungs can go into an overenthusiastic repair mode and go on creating scar tissue after the healing has been done.

I think that rheumatoid/autoimmune conditions can cause the same effect? Out of my depth here, apologies if i have got that wrong.

Please let me/us know how things progress. Use the PM service on the site is you would like to continue our conversation.

All the best

Kate x