DF diagnosed with Interstitial lung disease

[Hilda44]

My parents live overseas, so this makes this even harder. My DF has just been diagnosed with interstitial lung disease. He has had some tets and is having a biopsy tomorrow. He is 70, in good health, fit, good, cholesterol and BP. The only thing he has has, is cancer twice; skin and prostate and luckily were detected early enough, to cut out. I feel terrible for my Mum, well them both as they has friends but only one of my sisters in the same area. Just wanted to hear experiences of others that have gone through this? Thank you

Hi Hilda, I couldn’t not respond to your post, as I’m scanning and searching for anything I can find on exactly this. I’m sorry to hear about your fathers diagnosis. My own DF has the same, and I am devastated about it. Has your dad been suffering with breathlessness? My DF was diagnosed earlier this year and is attending pulmonary rehabilitation classes. Sadly I’ve recently noticed his breathing hasn’t been so good and he’s coughing a lot, I’m not sure if the cold weather is making it worse at the moment. Did your father undergo radiotherapy? Mine also had cancer 6 years back and seemingly radiotherapy can be a leading cause of this disease. Please feel free to chat to me at any time. I’ve tried so much to research this condition and keep hitting a wall.

Hi life thankyou for answering. No his breathing is normal so far. Yes, my Father did undergo radiotherapy for prostate cancer years back, interesting to know that can be a cause. He has a few appointments coming up so will let you know what they are, and when. Would be nice to update each other with any information we do get it as it seems scarce. Thanks again for answering and should have more to update soon Xx

Would be great to keep each other updated Hilda, comforting to know someone else going through something similar.

Wouldn't it be a great support. My news today is my father has to have a biopsy, although when this will be is anyones guess. His specialist, although private seems a hard man to get an appointment with. I hope this is a good sign. All the best to you and DF Xx

What have his symptoms been that have led to his diagnosis? My DF has connective tissue disease and this seems to be linked to it. Although he only received a formal diagnosis this year, it seems to have been working on him for a while. As far as I understand the symptoms are breathlessness, a dry cough and fatigue, all of which my DF suffers with. However, at the moment he is generally living a normal life, working the odd day and minding my kids for me a cpl of days. Do you mind me asking where you are and your DF? We are in Northern Ireland. X

Hi I know it’s not the same but I was diagnosed with interstitial lung disease (ILD) with pulmonary fibrosis and a connective tissue disease (CTD). I was only 41 when diagnosed it was the CTD that caused the ILD. I was very breathless and ended up on ambulatory oxygen.

I was put on steroids, immunosuppressants and had 6 cycles of chemo to halt the disease. My lungs are much better (lung function increased from 30% to 50%).

@lifesbetteraftertea There’s a closed Facebook group for myositis (a CTD) it’s very good for information and there’s always someone who can answer your questions.

@Dynamodopey thanks for this. Thank goodness your treatment has been beneficial for you, I’m sure you were so shocked when you received the diagnosis. Thanks for the recommendation to that group, I’ll definitely join. All the very best x

@lifesbetteraftertea I went from fit active running around to bed ridden literally within days. To be honest I was just glad of a diagnosis as it took the doctors a while to figure out what was going on and initially I was being told it was only a chest infection that’s taking time to clear and to be patient.

@Dynamodopey sorry to hijack this, but just wondered if there’s anything you can tell me about your experience with pulmonary fibrosis? Thoracic consultant thinks my DH has it. He’s 42. I am worried sick. Google is definitely not my friend.

@Jinxed2 initially this was my dads diagnosis but it then changed, I'm not sure why because I think ultimately fibrosis or scarring of the lungs is all much the same. Google is not your friend, I found this too. Could I recommend the British lung foundation? They arranged for a fibrosis nurse to call me when my dad was first diagnosed with fibrosis of the lungs, I emailed them and they arranged it and she was extremely helpful, helped put things in perspective and to chat to somebody who was so knowledgeable was very reassuring. Wishing you and your DH all the very best x

Sorry @Jinxed2 I’ve only just seen your post. I became breathless middle of last year which became progressively worse. I was told I had a lot of scarring/fibrosis was beside myself with worry as to how much I’d recover.

However with the correct treatment and right intervention (can’t praise the NHS enough once they knew what was wrong) I am now able to function at about 75% of what I used to be able to do, with progress being made.
Walking is an still an issue especially uphill and I struggle with some things but I’m able to get on with life.

I think the key is getting the right treatment and finding the cause of the issue. For me I still can’t believe how poorly I became so suddenly. I think everyone around me (my amazing family including my siblings who while living miles and miles away rallied round me) thought I was actually dying. I on the other hand just took each breath at a time and got through the days.

With your husband has it come on suddenly? Have they told you any reason for it? I wish you and your husband all the luck. X

@Hilda44 how are you? Any more news?x

Hi everyone sorry so not updating. Some positive stories which are good to hear. lifesbetterafteratea I live in West Oxfordshire and my Father is in Perth Western Australia. He had an appointment with his consultant a week, ago after his biopsy, wno told him he doesn't know what type he has and that he is going to sent the results to Adelaide (in South Australia) or America which could take up to 3 months. Not what you want to hear when early diagnosis and treatment seem so important. I have literally just got off the phone to him now and he has spoken with a gp friend who is going to refer him to a different specialist who is apparently the best one in Western Australia. With Christmas coming he may have to wait until February to see him. He said he felt breathless, like he had cotton wool in his chest, is what lead to the diagnosis.

Good to hear you can improve Dynamodopy I hope you continue to do so. I completely agree with you a out finding the right treatment. It worries me though as they don't know yet what sort my Father has.

Wishing everyone a good weekend.

Thanks again for all the replies, it has made me feel a lot more positive than Dr Google.