Hello. My Dad has IPF. He is on 02 24 hours a day, 4 litres an hour (I think that's how it's measured?).

[anniediv]

He has recently been getting very muddled and his mobility has gone right 'off'. Is there anyone on here who can give me an honest account of what I can expect next. I know the signs are not good but I can't envisage what's going to happen next. I'm sorry this is a gloomy question : ( professionals I have asked are so reluctant to commit themselves to stating an opinion.

[amagran]

hello annie, my husband also has ipf and emphysema, we are in the same position in that nobody will tell us what happens next, though it is probably because they don't know for certain. Everybody reacts differently. If you google ipf prognosis it will give you a general idea, complications etc. Does he have pulmonary rehabilitation, often the nurses there can advise, or the respiratory nurses. This is a hard one, and not a pleasant one either. keep me informed if you earn anything, or what to ask.

[Hidden]

Hi Annie, I don't think any one can say for sure as it depends on many things and each individual patient, with any of the lung conditions. I think you need to consult with your Dad's doctors or respiratory nurse about his current situation, especially if this loss of mobility and muddled intellect is a recent development. I think they need to know this and check things out with your Dad.

Keep in touch and let us kinow how your Dad is getting on.

I guess you have read BLF's page on IPF (link below)

blf.org.uk/Conditions/Detai...

Also don't hesitate to call the BLF helpline for further advice and guidance.

Good wishes

[tanyamarie]

Hello hun!

Well, we joke that my dad is losing his marbles cos he does get confused and has the memory of a gnat at the moment but we would rather that than him be annoyed or angry or upset that he forgets things you know. My dad used to be very sharp (still is sometimes) but I can see regularly that he asks the same question a few days apart even hours sometimes and simply cant remember from before. Don't know if its the IPF or if he got dementia. Maybe neither but at the moment its not causing problems.

He is on O2 when he needs it, not 24/7 yet. He uses it on 4lpm like your dad and on 8lpm when excercising. He just finished rehab which he said was excellent and has started today the follow up course. He is very independant and goes out alone and drives. He is fully compus mentus on that score.

After his specialist sent dad home to die in May, saying there is nothing that cud be done for him, he has seen a private specialist who has put him on a very high dose of prednisolone for 2 months. He has follow up appoint next week where the doc will say either it has worked and stalled the progression or done nothing so we will know more then.

He did say cos of his age that a transplant is out but i argued with him to keep the option open. Hopefully I can use age discrimmination if it doesnt go to plan but I am no push over and after my dads lack of care in the early stages I am more than prepared to fight all the way for my dad now.

I have had a few emails from people in the same boat and one from a son who lost his dad a few years back to IPF. I was in tears as I read it and it is a horrible way to die, one which I would not want for my dad but he said that his dad was in a good hospice and the care was excellent and they made sure his dad did not suffer as alot do. So that is in the back of my mind for when the time comes.

However, since May, I am finally now 'not' asking my dad how he is every day as I do not expect him to die soon and I am rather hopful for the time being. My mum and I are treating dad like we always have, like there's nothing wrong in a way so 'its' not there in his face all the time if you know what I mean. He has his reminders......his meds....O2......SOB.........he doesn't need us reminding him so we just make sure he doesn't have to do much by either doing it ourselves or getting there before him! Today, he went down town to get a bit of shopping and was perfectly fine. The real test will be in 2 weeks, we are due to go to South Devon on hols and he will be driving for 3 hours or so. Hopefully he will be ok.

Keep your chin up hun, thinking of you xx

[mcevoystone]

i have pf and been diagnosed since 2006. if your dad is muddled and mobility is off this points to needing more o2. do you have a pulse oximeter. this shows if the oxygen sats are above 90 where they should always be.

sometimes we can become deconditioned if we have had a cold or not moved for a bit. we need to be as fit and strong as is possible to be with our capabilities. sometimes we are at our most muddled just before we use o2 24/7. usually that improves after we are getting adequate o2 for our needs. call the respiratory nurse team.

can i also say its strange to need 4litres sometimes when not exercising and then none the rest of the time. there are people on 15litres plus btw going on holiday and doing normal things and many people live over 15yrs. do not believe the time-lines on the net. these are out of date or only true for a small minority.

pulm rehab and meeting others (online if not possible live) is the best thing for pf, patients and carers. carers can learn the exercises and encourage their loved one to do them at home. most are possible from sitting on a chair.

not nice thinking your loved ones and sitting wondering when its all going to end. we dont have date stamps on our rump.

although in answer to your question. pf people can have heart attacks if they dont slow down - they can get pneumonia or infections that tip them into deteriorations - they can sometimes get a cancer but if they avoid all that they will use their lungs until there is no healthly lung tissue left and run out of o2. they will be on 25litres by that time and probably bed bound (but they dont need to be bed bound until then). if people get to that stage then they have done well. buy a finger pulse oximeter if you dont have one and learn what it means.

[mcevoystone]

tanyamarie

before you go fighting for a transplant try and understand the system first. in the past they gave transplants to people who werent healthy enough to survive the operation. sometimes a transplant is not the best option and can actually give you less life than you would have. also its swopping one set of conditions for another.

a lot of pf people would have benefitted from o2 24/7 earlier than they start using it. that being said pf and emphysema is a very tricky combination as 02 for emphysema needs such careful handling.

although it might not seem he needs o2 for driving, he probably will.

[tanyamarie in reply to mcevoystone]

I fully understand the system and know that my dad has been neglected for many years and he should have been offered a transplant at first diagnosis. Everyone when diagnosed with IPF should be discussed the option with your consultant and I bet many are not.

When your father is told that nothing can be done and not even oxygen will do any good, pallative care will be arranged (said as an afterthought) you do whatever it takes to give your dad the best possible chance. Why should transplants be age related? You can have a healthy and fit 65 yr old and a 50 yr old going on 70 if you know what I mean.

My father should have had O2 earlier but know one was looking after him really so his condition deteriorated uneccessary really. And its not swapping on set of conditions for another. They dont transplant damaged organs and a double transplant can give a patient an extra 20 years compared to dads specialist saying he needd pallative care.

And as for him being on 4lpm now and agin and not continuously............everyone is different I am sure you will agree and he is being closely looked after by a wide team of health professionals and does nothing without checking with them first. My dad is finally gtting the care he needs and I will fight tooth and nail to get my dad the best chance of life. He doesn't want to give up. he is a fighter and I love him.

[mrWheezy in reply to tanyamarie]

hi TanyaMarie, i know i have been away for a few days and missed this post but doing a bit of catching up here, in reference to the transplant issue, as you know i am now on the active list for full lung transplant and believe me when i say this it IS swapping one lot of problems with another. The difference is I have less than a year to live now and with the transplant i may have 10. I will not be short of breath but i will have a very low immune system(lower than anyone with COPD) i cannot get sunburned at all ( not even a drivers arm) due to the risks of skin cancer, renal failure, there are so many foods i will not be able to eat and the toll on the rest of my body usually means it gives up long before the new lungs do. Over half of lung transplant patients within the first 5 years have to have a kidney tranplant because of the drugs needed to keep the lungs from rejecting.Some people develop cancer and other serious illnesses from the transplanted lungs as not every lung is from a healthy 20 year old non-smoker.

I understand your situation and unfaltering dedication to your dads cause, I would be exactly the same if my dad was still alive( he died 8 years ago) but having gone through the draining process to just be on the list and knowing the selection process im not sure i would want him to suffer what i potentially will have to go through(assuming i get a transplant) so the management of the disease in slowing down the progression may be the best option for a lot of patients.

I dont mean to upset you, I know you are a compassionate person but please think very carefully about the massive implications of transplant before pushing the specialists as even privately they would probably advise against it due to the risks.

Always your friend

Tony XX

[tanyamarie in reply to mrWheezy]

Ah thanks Tony, your feedback is sooooo appreciated. I know a transplant is not without its risks, believe me.......My dad is a fighter and wants to live and if he wants to have every possible chance then all we can do as a family is support him and do whatever we can to help.

Hopefully when we see doc next week he will say some positive things, mainly the progression has halted and that is the best outcome we can hope for I think.

Tony, you are going through so much at a young age and deserve evry possible chance and just because my dad is a certain age, I don't think it should go against him thats all i'm saying you know. I think he deserves as much chance as anyone else, or at least not to be refused point blank. I don't want the hope to be taken away from dad.

[maureenv]

Hi

I have IPF and was diagnosed 6 yrs ago although i think i had it for at least a year before I did anything about it. I carried on working for a year as a nurse but had to give that up but still carried on in a clerical capacity. I eventually retired I found i was picking up all the germs that you get in hospitals because of my immune system being compromised by the immunosuppressants. I've been stable for 3 years now and I'm on 3LPM (litres per minute) 24/7 but when ambulent or doing anything which exerts me I turn it up to 5/6LPM. I find even just eating needs extra O2.

I find when I go away anywhere for a few days it takes me ages to pull myself together again. Just recently we went to Kent (6 hour drive) and that really tires me out I was home for a week and went to Center Parcs in Cumbria and I still feel like i want to sleep everytime I'm sitting down.

The only thing your dad can do and I'm sure he's already doing it is let his body dictate his limits.

I cant tell you what is going to happen in the future with your dad or with me, the only thing we have in common is the disease and everyone reacts differently, some people manage it and carry on for years but others go downhill rapidly. I have known people have a sudden exacerbation and decline rapidly. We'll never improve, all we can hope for is stability. I dont even think I would have a lung transplant if offered one because I am 63 and would like to think someone younger with a greater life expectancy should be given the chance, plus at my age they would only let me have 1 lung and I'm greedy I like a full set or nothing ;-).

Keep a close eye on your dads sats, he might need more O2, his confusion may be caused by lack of oxygen.