End Stage usual interstitial pneumonia (UIP)

[Mrs-Spoon]

Can anyone tell me what I need to look for at end stage UIP?

My MIl has an agressive form of this diesase, she has declined rapidly, in the 4 weeks that she has been on oxygen we have had to incres this to 3lpm when resting and 4lpm when walking around (this amount does not help her at all).

We have requested an oxygen mask to cover her nose and mouth to see if this helps her more. We started her on Oramorph on Saturday.

Her Gp does not think that she has long to go, but I'm just at a loss as to wat I need to look for and what I can do to help.

Thanks for reading and helping.

[Jo_BLFHelpline British Lung Foundation]

Hi

I am sorry to read your mum in law is so unwell.

Is there palliative/end of life services in place for your mum?

Seeing someone we love go though this can be very difficult and questions about what will actually happen when the time comes can be difficult to ask.

If there is palliative care in place it may be worth having a chat with the nurses, What does your mum in law want to happen? It may also be helpful to look at our booklet about what happens at the end of life - the link is below.

blf.org.uk/Publication/Deta...

You can call us 03000 030 555.

Very Best Wishes

Jo

[Mrs-Spoon]

Thank you for your response, I requested the Palliative care nurses last week and we have them coming round on Thursday. My MIL refused to see them, so I requested them for my husband and I.

Due to the hours I work and the lovate of my work I find it difficult to call and speak to a member of staff. But the ones I have spoke to have been very helpful.

I have ordered one of the booklets and will wait for that to arrive.

[Jo_BLFHelpline British Lung Foundation]

Hi

If you would like more information we can arrange for one of our respiratory nurses to call you - we could try to arrange this around you for example lunchtime. W e are here 10am - 6pm.

Jo

[amagran]

I don't know whether to be worried or not, like your mil, my husband has ipf, his last lft showed him to have 30% lung function, that was 4 infections ago, he is to have another test on 28th nov. Nurses call and I only found out last night because I read the chart the nurse left, that he is on palliative care. He is on 4l 02 24/7 and if he takes his home oxygen off to put his ambulatory on, he is blue in a few minutes and a few steps, he goes nowhere without his wheelchair outside, and goes upstairs as little as possible. He coughs all the time which again makes him turn blue, he is on oramorph. Yesterday the nurse and us were discussing future options, such as him having his bed downstairs, commode etc, and the best way of keeping him out of hospital, but I have to say that PALLIATIVE CARE has never been mentioned to us,( I read that he is having it in his chart ) and neither has END STAGE, yet I feel that he must be if not at the end, at the beginning of the end, yet he still seems to be soldiering on, talking about, not this xmas but next xmas when our daughter is 40, and next september when he will be 70. What I am trying to say is, would it be better if someone said to us, ok, you have limited time left, or for us to be wondering all the time, and I might add worrying myself silly. an BLF understand this and offer any advice.

[Mrs-Spoon]

My thoughts are with you Amagran, we have been told that pallaitive care is put in place early.

This is so that the nursing staff get to know you know you now, rather then waiting till you need them and having to start the whole process from this point. (i hope this make sense)

We do not have much contact with the community nurse and I am furious with them for this, they were suppose to come round last week and we are still waiting.

We have not been told how much time MIL has left (we can guess, but nothing offical has been mentioned) i guess in a way we do not want a figure, as we do not want to be thinking, is this the day.

Like your husband my MIL does not go out without a wheelchair, does not go upstairs unless she has to (Now we have moved in to care for her she will not have too) MIl coughs all the time and that is why the Dr prescribed Oramorph, she said it would help to ease the coughing.

My MIL has a blue tinge to her lips and finger tips even when she is on the oxygen, she started Pulmonary Rehab, we are thinking of stopping this as she sleeps for about 3-4 hours after this. We dont want to stop it on the other hand as this time that she can get out of the house without the family.

If you would liek to PM me then please feel free.

[derrylynne]

I think we are all different. It is though hard to say how long someone can survive at end stage. Some go on for years and defy all odds to the amazement of many doctors. I hate the term 'end stage'. Which is essentially stage 4. I am at stage 4 with 25% Fev. I use 4 lpm oxygen for mobility, but not any when seated and resting. Prays that your husband improves. it can take a very long time to get over infections so don't give up hope. He may yet surprise you.. Again to end stage. I don't intend to kick off my mortal coil for a good few years yet. In practice below 16% is when it really starts to get scary.

[amagran]

thanks derrylynne, but you have to remember that we are not talking about copd on this thread, but ipf, this disease is entirely dfferent to copd both in its presentation and its progression, it would be lovely to think that richard would improve but unfortunately I know he won't, though its very possible that he maintains stability for a while which is what I'm hoping for. xx

[sassy59 in reply to amagran]

Thinking of you and Richard amagran. You are doing your absolute best and Richard sounds like he has a positive outlook on his life so you can only go with that for now and get all the help and support you can. xxxxx

[Poppypup]

My Mum is in hospital right now with this - and she can't even sip water without her oxygen sats going down fast. My heart is breaking watching her - now she is in pain with her stomach as well. The doctors say the IPF is only part of the problem, as she has a sticky heart valve, and high blood pressure as well. Her doctor told me yesterday that it is unlikely she will last another week. I would love to think she could get to a place where she was stable and aware of us - but that looks increasingly unlikely now

I hope Richard is around for a good while, Amagram.

Mrs-Spoon - I hope you get the help and answers you need at this difficult time. The doctors involved with my Mum have been very helpful, and quite honest with their reading of Mum's situation. It is hell though - my heart feels like it is shattering

[amagran in reply to Poppypup]

so sorry poppy, have strength. xxx

[Mrs-Spoon]

Poppy my thoughts are with you, it is not easy to watch someone you love in pain and suffering.

Amagran, you are right in what you are saying, this website talks about lung conditions as a whole. Everyone on here is or knows someone suffering from a lung condition of some kind.

Sadly since posting the message my MIL has taken a turn for the worse and we do not think that she has much longer to go, we are now just trying to make her as confortable as possible.