Idiopathic pulmonary fibrosis sufferers

How do people manage this awful disease? Coughing, breathlessness and loss of weight? Any concrete help would be gratefully received.

[Suzie42]

Hi juignac, i dont know how long you've been diagnosed. I finally had diagnosis in May this year. I just started on Ofev (Nintedanib), having minor side effects not too bad so far. I know the fitter you can get the better you can feel. When i was diagnosed Dr said i must push myself walking etc., i have oticed a difference. Its hard. Im only coughing furst thing in morning. Hope this helos a little. Take care x

[AngieB72]

Hi

The coughing I manage with cold water, Fisherman’s Friends and Jakeman’s Throat and Chest sweets. Breathlessness I just live with!!! Ambulatory oxygen helps but I’m at the stage where I just have to take things slowly and rest more. Loosing weight - I have never had that problem. I’m on steroids so initially it was the opposite. I do know that some people drink meal supplements to help but that is after discussions with their doctor/consultants. I was diagnosed 12 years ago now and it is all just part of my way of life. Good luck.

[Eilyfoley in reply to AngieB72]

12 years, wow! Great to hear.

[Ergendl]

Ask your GP to refer you to a dietitian who will be able to advise you about diet and if necessary prescribe food supplements to help.

[Hidden in reply to Ergendl]

Thanks for that. We are being referred to a dietician but it is taking time ...? Meanwhile, the kilos seem to be rolling scarily off.

[Ergendl in reply to Hidden]

In the meantime, take a look at the following BDA Food Facts PDF about malnutrition (where your diet isn't giving you all the nutrients you need). The second page will be more useful to you: bda.uk.com/uploads/assets/a...

[Hidden in reply to Ergendl]

Thank you so much. It is for my husband.

[Ergendl in reply to Hidden]

All the better - it may give you some tips to help you help himself.

[Hidden in reply to Ergendl]

Your help with the BDA Food Facts far more helpful than our conversation yesterday with a dietician. I am doing what I can. Many thanks. I see you do Breathe Easy - is this something any IPF person can do? My husband is in no state to do much at the moment and presumably the doctor's ok would have to be in place. He also had a mini-stroke and is aged 78.

[Ergendl in reply to Hidden]

I am sorry the dietitian was not more helpful. Glad the Food Facts sheet will be. Yes, people with IPF can benefit from singing for lung health. The groups will all be shut for the moment, but there are You Tube videos about diaphragm singing. Check out Breathe Better Sing Together's You Tube channel which I am in the process of setting up. Just one more singing exercise to add, and then I can get on with the fun stuff, the karaoke videos.

[Hidden in reply to Ergendl]

I feel very lucky indeed to have connected with you. I don't do much on the computer and have never done anything like this before. Many thanks indeed for your heolp,Ergendi

[Hidden in reply to Ergendl]

I think time might be running out for my beloved husband. He was just weighed by district nurse and shock, horror down to 48 kilos. (he was originally 12 stone) Plus they now say he is an invalid. Can't believe this is happening to us.

[Ergendl in reply to Hidden]

Oh, how awful for you. What does his GP say about his weight loss? They should be prescribing food supplement drinks if his weight loss has been rapid or his BMI is below 20.