MIL diagnosed with UIP Fibrosis, fast decline, is this the way it is?

Evening everyone,

6 weeks ago my mother in-law was diagnosed with UIP Fibrosis, since this diagnosis, she has declined rapidly.

She only had a cough when first seen by the hospital, she now requires 2 litres of Oxygen a hour for 24 hours.

The hospital told us 10 days ago that her condition has got worse by 7% in 12 weeks. To us this sounds like a lot, they then told us that they can not tell us how much longer she has! This was a big shock to us.

She has 35% severe scarring to her lungs and a further 15% scarring that is getting worse.

How much scarring can someone have before their body gives up?

Many Thanks

Sharon

5 Replies

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  • Hi Sharon,

    My dad has Idiopathic Pulmonary Fibrosis. Like your mum in law, he has severe scarring and he has Emphysema too so double trouble. He is on 4-5lpm of oxygen and despite being seriously ill and rapidly declining too he still manages to live life to the full. So, what I would like to say is, whilst we don't know how long dad has, we are making the most of every minute we have and enjoying each others' company. We laugh together and argue together..........no change really lol!

  • my husband has the same disease, he has lost 20% lung function over the last year, leaving him with a total of 30% lung function.He also has emphysema in his upper lungs. I tried to learn as much as possible about the disease, it is very cruel, but different in every case, median life expectancy is 2-4 yrs after diagnosis, but of course some will live longer and some not as long. it is a frightening prospect, we are taking every day as it comes, A year ago he was doing everything normal albeit a bit slower, now he's on 2l oxygen 24 hours, and needs a wheelchair for going out. The blf has put a dvd on utube and I will try to get you the link, it's very informative. xx

  • Idiopathic Pulmonary Fibrosis Online Surgery recording

  • Sharon there is good advice here. Please ring the BLF helpline tomorrow for further info or if you just want to chat with a nurse.

  • Hi Mrs - Spoon

    I am so sorry to read of the difficult and upsetting situation you are all in.

    It is very difficult to answer your question regarding the scarring as it may depend on the person.

    If you can give us a call on 0300 030 555 our nurse will ne be more than happy to discuss this with you.

    Cheers

    Jo

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