Lung Function Tests

[mary1956]

Is the progression of IPF determined by changes in Lung Function Tests. My lung function has decreased by 12% in 4 months but I don't know the implication of this. It is now 54%. Consultant mentioned having oxygen in the home but as SATs recover quickly when I rest he's not absolutely sure if I need it yet. I'm getting really confused as have seen a few Consultants now and nobody can agree on anything?

[Mavary]

Hi Mary1956. They still don't really know much about the disease that's why you get conflicting diagnoses. If your sats are dropping when walking about they may suggest ambulatory oxygen. Which means just when you walk anywhere. As you probably know by now it is a progressive disease and things will change from time to time. If you notice there is any difference. Like you maybe feel more breathless. Get it checked out. If your lung function is dropping it does mean the disease is progressing. My Husband has had IPF for more than four years. Probably five or six. He was only diagnosed just over four years ago. X

[Hidden]

Hi Mary, It is so difficult when you hear conflicting things from the "experts". I would advise you ring the helpline and ask their advise. Take care, TAD xx (click on the red balloon in the corner)

[naturelover]

Hi Mary, been ill so only just trying to catch up on here. Was in the hospital for 10 days recently. I have pulminary fibrosis and would not wish it on my worst enemy. I have oxygen in the house now and have to have it on continuous. Before that it was just now and again, I also have bottles to carry outside. Insist on the oxygen in your home. I got mine at a good time which prepared me for this stage.(sort of) I have an excellent consultant but he did not agree with the previous one. They do not know what has caused this, my daughter and I will always say the hairspray I had been using for years, together with the parakeet I had. The first consultant blamed him, the second one said it was not...but he doesn't know what caused it. I asked my consultant how long I had left to live, and he said 6months min and 12 months maximum. I got a shock but I did ask! I am not taking it as gospel though because they are just guessing. Everything about this disease is guesswork. My breathlessness is sure getting worse by the week though. I don't know what meds your husband is on. I am on a maintenance antibiotic Azithromycin. but not sure it is working. I hate steroids with a vengeance. but, sometimes I have to have a short boost. I have osteoporosis and they take the minerals out of your bones. I am indeed in a catch 22. I do hope you find the right answers for your husband.

[mary1956 in reply to naturelover]

Hi, Thank you for replying. It is me that has IPF, not my husband. On reflection I think I have had it for 4-5 years as that is when I started to get breathless when trekking. (Did a lot of treks for charity and I believe the high altitude may have damaged my lungs). I am taking 10mg of prednisolone daily and my SAT's at rest are 92. Down to 78 when I walk but go back up quickly. I still work 2 x 12 hour shifts as a midwife. I know I will have to stop soon, but want to avoid that decision as long as possible. Do you mind my asking how long you have had IPF for and at what stage you had to have oxygen? My lung function seems to be getting worse quickly and is now 54%, again I do not know how relevant that is. (it was 70% in September). Regards Mary.

[naturelover in reply to mary1956]

Hi Mary, so sorry to get it wrong, so it is you who has the lung problem. I think you are marvellous working the 12 hour shifts and especially in such a rewarding role. I am trying to remember when I had oxygen put in. It must have been summer time because I remember being out in the garden with the portable oxygen tanks and the nurse remarking how much further I could walk with the tank than without it. I was just using it for a little bit at first and not outside at all, then all of a sudden it got worse and worse, I am now attached to the oxygen all the time (sometimes feel like a prisoner, big long lead that can go upstairs) but can't breath for long properly without it now. I am frightened to go upstairs at all, even slowly. I have a chairlift on order and will be glad when it can be fitted so I can have a nice soak in the bath. I am not feeling so good now, nausea all the time and do not feel like eating.Was pleased tonight enjoyed my tea for the first time in three days. Am very breathless now even going into another room, and that is with the oxygen on.

[mary1956 in reply to naturelover]

Hi, Gosh it's you who is marvellous, coping as you do. My latest news is that my new Consultant disagrees with my diagnosis of IPF and thinks I have chronic hypersensitivity pneumonitis. They are trying to pinpoint the cause. Treatment will be low dose chemo and steroids and should halt further damage. If that is the case then I should be able to continue living as I do now. It is such a shame that treatment wasn't started earlier and my lung function has worsened considerably. Wishing you all the best for the future. Reading the posts on this site has made me realise how lucky I am. Take Care. Mary x

[Jummie in reply to naturelover]

Hi I also have IPF. I was diagnosed with COPD 12 years ago then IPF 2 years ago. This year I've been in hospital 7 times sometimes 3 day stay other much longer. I've been out now since 14 Sept longest of been out so far this year. I've been on 24 hour oxygen since end of October. It's not easy I'm on 2 litres but can go to 3litres when showering etc. Takes a lot to get used to losing my independence I have carers in twice a day. Just trying to get my head around it.

[Salmo]

Progression is determined largely by lung function tests. There are 2 key lung parameters in IPF - FVC and DLCO (transfer factor). Both are subject to measurement errors - DLCO can be as much as 10% in some cases, FVC 5%. FVC tends to be the parameter that most consultants focus on for progression as it's the parameter that been more clearly linked to disease progression, outcomes and beneficial effects of drugs. The other tool used to assess progression is obviously HRCT (scans).

It's difficult to say much about the 14% decline as it depend on whether its in FVC or DLCO and how stable you were before that (i.e last year or so). I have had these rapid declines and in my case they probably resulted from acute exacerbations of the disease. You mention you are on prednisolone. This is not usually given for IPF (but is for other forms of ILD) but sometimes may be given during an acute exacerbation or severe chest infection - have you had either of these recently ?.

I would say that you do need ambulatory oxygen if you desaturate below 80 on exercise.

There is a school of thought that says that you are doing huge damage to every organ if sats fall below 88-90 even for short periods. I'm not so certain of this and cannot find any scientific evidence to support this belief but I feel it's always best to err on the safe side when you have a serious progressive illness like IPF where you do not want to make things worse.

Since your disease progression may be one of sudden unexpected falls in lung function I would push for ambulatory oxygen now as it can take a long time to get it sorted out and you dont want to be house bound while they sort it out. Took me 6 months and the difference when I got it was amazing.