Ipf where we at ?

[Vicky4]

Hya I'm writing this on behalf of my dad he's 70 years old with ipf and cpod and right failing side of the heart due to the fibrosis recently he has 3 chest infections in the last 2 months and has been admitted to hospital he's now out we went to see the consultant a couple of weeks ago and was told he only had 23% lung function left and prescribed some more medication to make him feel more comftable oramorph , but doesn't feel too good after he's took it he is on nintenadib but was only aloud start that 3 weeks ago due to blood test results will this help with the progression even though he has quick progressing ipf ? And he so tired all the time and can't sleep because of the dry hacking coff was just wondering if anyone had any advice for this ? He is on ambulatory oxygen for walking which he's not doing much of as he can't even walk upstairs sometimes and when he does takes half hour to and hour they are pushing for full oxygen but have wait 6 weeks till he's off the antibiotics I just feel so helpless but want to do my best for him and would really appreciate any advice from others who have ipf and I want him here as long as I can I want him see my two baby's grow up as my youngest is only 4 months sorry probley sound morbid but I just want to do my best for him .

[skischool]

Gosh you have given us quite a lot of issues to look at here,Firstly there are other members on this site who do have IPF who are better qualified to address the IPF issue than i am.

There are only 2 medications that i am aware of that are prescribed to try to slow down the progress of IPF in this country,you have mentioned one of them and i have forgotten the name of the other but it would easily be found by a quick search.Not all patients are given these medications and it is for your dads consultant to follow the NICE guidelines on their introduction in the management of your dads condition.

Without knowing your dads O2 saturation at both resting and exertion and also not being qualified to give a diagnosis as to his requirement nobody on this site can determine his O2 therapy regime,although i would be surprised if there was any reason why he would be denied long term O2 therapy because he was on a course of antibiotics?

You do really need to arrange a meeting with his consultant and Gp to discuss his future health management and the way that they are going to maintain the best quality of life for him.

If it is any consolation my present lung function/capacity is currently 21% i am on ambulatory O2 with severe Emphysema but i lead an almost normal lifestyle.My dear wife who passed away recently had amongst other health issues IPF so i do know and have done quite a bit of research on this lung disease.I might add that many people with IPF are well managed and although you are obviously very concerned these people are testimony that this condition is to some degree manageable,Please seek professional advice..............best wishes skis x

[Vicky4]

Thanks for the reply it's pirdifidon or something like that which he was on but had to be took off it due to side effects , they are really good the team we have and are at hand when ever we need them but sometime u just want a bit off advice from someone who knows what it feels like and is going through the same thing , the o2 they said antibiotics can have a false reading and have to wait 6 weeks before they do the artery test he has had this for a couple of years and been leading a completely normal happy life but in the last 4 months things have started to go dramatically worse and he's gone from walking round southport eating fish and chips to not being able walk to the toilet upstairs and eats very little now and has been prescribed shakes I now I babble lol but just trying do my best for him and hours of research just reading the same thing wasn't getting us knowhere so I thought I'd try here x

[skischool]

Vicky i am aware that i have not given you any practical advice in my reply.Is your dad at home alone?if so have you involved social services in assisting with care in the community.Also you will need to establish a long term care plan with his Gp and his current respiratory team in his local hospital.In order to help you i and other members of this forum will need to know the baseline from which we are to give advise and support. Exacerbations such as chest infections can really knock people suffering with IPF and make them quite frail and loss of appetite is one of the many issues that they suffer.Try to get your dad to eat lots of little meals and snacks as opposed to larger meals and ensure he has plenty of fluids,You will have to wait for members on this site suffering from IPF for first hand experience but please try to stay calm it is a frightening time for you and for your dad and we will do our best to advise and support...................best wishes skis and his cat xx

[Billiejean_2]

Hi Vicky, I don't have any advice but just wanted to wish you and your dad well. As Ski mentioned above there are a few members herewith IPF and maybe they will be able to give you the benefit of their personal advice. Ringing the BLF helpline would also be a good idea and might set your mind at rest to some extent as regards what you can best do for your dad.

Very best wishes to you both.

[sassy59]

Morning Vicky, good replies from skis and BJ and l just want to welcome you to the site.

BLF helpline number is 03000 030 555. Give them a call xxxx

[Vicky4]

Thankyou no my mum lives with my dad and I am on maternity atvthe moment so has support from us we have been in contact with a stair lift company and coming out wed thankyou everyone for your kind words and will pass them onto my dad will defently give blf again as only got information booklets last time x

[Salmo]

Nobody ever really prepares people for this very common decline that people get with IPF. Its a pity that there is not something akin to the Macmillan nurses they have for cancer to help people with IPF at this really traumatic time. So many things to address at one time.

You have to get chest infections sorted out - good to hear your Dad is on long term antibiotics - better tretament than I have ever had with chest infections and exacerbation. Also great news he is on nintedanib - means they still have hope. It might help - there is not much info but some people who have not been helped by pirfenidone can be helped by nintedanib. Effect is not dramatoc - perhaps a stabilisation or even slight (very slight) improvement but better than nothing. In some places in UK they would have just taken him off all meds and sent him home.

Once they get chest infections sorted try to prevent this re-occuring. Make sure he steers clear of people with colds - no hugging - damn hard with grandchildren but worth it till he gets stabilised. Lots of washing hands - cleaning surfaces etc. Face masks may be a bit far but some people say it can work at bad times (flue times) of the year.

The cough is a real pain. I find nose breathing (pursed lip breathing) helps me but imagine he would have found this out by now if it was going to help. I also found reflux was causing my cough and reflux meds helped my cough. Wonder if the pirfenidone gave him reflux or if he has a problem with reflux ?.

The american inspire website has had lots of articles on cough - so many things peole have tried but not certain any work - fishermans friend original may work

Ask why he cant have oxygen at rest (are his O2 levels low at rest?). May be down to COPD and CO2 retention which can make oxygen dnagerous but worth asking as I find I cough a lot more when my O2 levels fall and oxygen helps.

[Vicky4 in reply to Salmo]

Thankyou for the advice I'll defently be go getting some fisherman friends give anything a go and he's not had a problem with reflux but been feeling sickly at night I'm hoping when they do the artery test he will then be prescribed long term because I really do feel he needs it thankyou salmo and hope ur okay x