Interstitial

[Mavary]

I was wonder if anyone can give me an answer.

Does interstitial lungs mean PF or IPF. Or can there be other reasons for scarring and is it going to get worse.

[Katinka46]

My understanding is that interstitial lung disease is scarring in the kind of ‘fabric’, the tissues of the lungs. Pulmonary fibrosis (PF) is an interstitial lung disease. IPF is idiopathic pulmonary fibrosis. The difference between them is that PF usually has a cause. IPF doesn’t, it just happens. ILD presents as a restrictive lung disease rather than an obstructive disease, like COPD. The scarring encroaches on the lungs and makes more difficult to inhale, with obstructive diseases it is more difficult to exhale. But I am not a doctor, there are members here who are more knowledgable than me.

K x

[Mavary in reply to Katinka46]

Thanks Katinka. I love that name. All I know is I’ve got interstitial scarring but nobody has said the words PF or IPF. I’ve just been left in the dark. I’ve had my fingers checked for clubbing a couple of times. and I was supposed to go back to see the consultant but then we had covid. I asked my practice nurse and she said she saw the X-ray and couldn’t see anything to worry about. But I know from old when my Husband had IPF they tried to keep it from us. He told us the name of it and I asked what is it. His reply was oh you dont want to worry about that. I looked it up when I got home. He should have explained it. I never told my Husband for a long time. He one day said he couldn’t up understand why he couldn’t shake his cough off. I then told him. I didn’t say about the prognosis at the time. I’ve not got a cough which is good but I’ve had a lot of breathing problems which they said was caused by fractures in my back. I’d just like to know is it or isn’t it. Nobody is saying. I need to see the consultant but there’s no way I’m going to get there. Covid has picked up yet again. Anyway thank you for replying.

[katieoxo60]

Hello Mavary, nice to see you back on site. I share a similar confusion as yourself I have some fibrosis of the lung according to a letter from the hospital consultant following investigation for cancer which was inconclusive also. After several years of observation it was concluded that there was no cancerous element present . Since which time I have been treated for Asthma / COPD as the cough , breathing and spirometry tests are inconclusive for one particular lung condition but typical of COPD, so treated as thus. If the top lung consultant can't define it what hope is there for us. Just have to accept we have a dodgy lung that works poorly and take drugs to calm the symptoms. As for Xrays they can only detect faults in the structure of the lungs not come to a diagnosis just a suggestion of a possible cause. Only CTs can give a more clear suggestion of the problem and things like Bronchoscope. In days gone by we would have been treated as a poorly chest , now I fear we expect better than that with all the technology available and correct explanation can often help the patient come to terms with their long term chronic illnesses don't you think. I for one do not want to take unnecessary drugs that make me feel iller unless its absolutely , diagnostically required . what about you ? Have a good day and enjoy the sun. x

[Mavary in reply to katieoxo60]

Hi Katie. How are you? It’s been a long time hasn’t it. it’s nice to chat to you too. So you have some fibrosis too. I don’t think I would have even thought about it if it hadn’t been for my Husband. I was going to see the Consultant yearly after a bout of pneumonia and aspergillosis but then Covid came along and I didn’t go back. And then I happened to read my discharge sheet one day after being in hospital. . I couldn’t believe what it said. Interstitial scarring of the lungs. I do think about it because my Husband died of IPF. If it wasn’t for that I would let the world go by and not know any difference.

[katieoxo60 in reply to Mavary]

Nice to chat Mavary, Hope you had a good day yesterday. Are you doing anything for Mothers day ? I have a pile of cards and presents to open as its my birthday too. I feel cheated like those whose birthday is at Christmas. Glad you gave the DR an opening to tell you but as you found it does not work with some , its amazing what comes up when we read actual records. Recently we lost family with an illness that no one knew about only sort of suspected so appreciate your concerns. I agree with Alberta56, many of us would prefer to be told and most diagnosis are only what a particular medic decides based on info available plus experience. Take care xx

[Mavary in reply to katieoxo60]

Hi Katie. My Son has asked me to go over for dinner tomorrow but I’ll have to wait and see what the others are doing. At least it will be lighter tomorrow night and I’ll be able to stay later. I don’t drive in the dark. My eyes don't see very well. I’ll only drive locally when I’ve really got to.

Back to interstitial If you know what is what you can arrange your life around it. I don’t think it works with everyone to know but there are some like me that are more matter of fact and to be warned is to be forearmed.

[katieoxo60 in reply to Mavary]

Totally agree Mavary , forearmed is forewarned and the old adage of be prepared. So enjoy your day tommorrow what ever you do, and I understand what you mean about your eyes mine are getting worse and worse and then I get consultants saying my eyes are fine. I'm getting double vision a lot of the time now besides the visual impairment in one eye and the age deterrioration . But I can still see large objects and fortunately I don't drive as I cannot pass the sight test to drive. It is worse after dark so the longer light nites will help wont they . Got a freind calling soon so must go take care x

[Mavary in reply to katieoxo60]

You enjoy your day too Katie. I’ve already had a lovely bunch of flowers from one Son who said he can’t be with me tomorrow. I had a bag with something in from another Son which I’ll open tomorrow. It was my Grandsons Birthday today so I went over and was given the bag to come home with. I’ve got macular degeneration that’s why I can’t see at night. I’m ok in the daytime. I haven’t been told I can’t drive yet. I’m sure that will come one day. It sounds like that’s what you’ve got. It’s not necessarily because of age. Even young people can get macular disease. I think it is more prevalent in older people though. I will be driving up my Sons tomorrow. for dinner but I will be back before it’s dark.

[Mavary in reply to katieoxo60]

I forgot to say Happy Birthday 🥳 🎂. For tomorrow. Xx

[katieoxo60 in reply to Mavary]

Thank you. xx

[Alberta56]

Medical people do tend to treat us like children. They only tell us what they think is good for us. They really ought to ask- ' how much do you want to know at this moment in time?' Of course they are often in too much of a hurry with other patients to see, BUT many/ most? of us would prefer to know what is going on.

[Mavary in reply to Alberta56]

Hi Alberta. I gave the Dr in hospital the chance to tell me. He was checking my fingers for clubbing. They’ve done it a couple of times and I thought it strange. I said to the Dr no I haven’t got Pulmonary fibrosis. He replied that I know too much. I said I ought to my Husband had IPF. I think that was an opening to tell me what was going on. I never thought any more about it until I read the discharge letter saying I had interstitial lungs a little while after.

[Debs_ALUK Partner British Lung Foundation]

Hello Mavary.

You can give us a call at the helpline if you wish and have a chat with one of our Clinical Nurse Team. They will be able to give you advice and help answer any question's you may have have. Call us on 0300 222 5800 Mon - Frid 9am -5pm

Take care

Debs

[Mavary in reply to Debs_ALUK]

Thanks Debs. I did ring once before and I was told I had to ask my Dr. Which as you can see I did.

[Hidden]

With the caveat that I’m not medically qualified. My understanding is that both PF and IPF fall under the interstitial lung disease (ILD) umbrella, however there are literally hundreds of others conditions also classed as ILD, ranging from sometimes self-limiting, relatively mild conditions, to the more severe and progressive ones. Interstitial changes as a term tends to simply mean that there is evidence of scarring (fibrosis) on imagery, but those changes could be associated with any of the ILD conditions, not just PF or IPF, or even stable damage due to past, historical infections. The only way to confirm for sure would be to ask a doctor, but on the balance of probabilities, and unless they’ve massively cocked up, I think it’s much more likely to be that the term is being used to indicate the presence of scarring in your lungs generally, than as a reference to the specific, underlying condition causing it. If you had PF or IPF, there are now antifibrotic drugs to be considered (subject to meeting specific criteria), so it would be a monumentally huge failure in care if you had either and they haven’t done anything about it.

[Mavary in reply to Hidden]

Thank you for the info. I just would like to know their thoughts on what it is. They were obviously concerned enough to have me back two years running. They were going to have me a third but like I say Covid came along. I think there are going to be lots of people just dropped. Now it’s got a lot worse for Covid especially in the hospital I go to so there’s not much hope of finding out anything.