Dad recently diagnosed with IPF

[kepisback]

Hi, my dad has recently been diagnosed with IPF after a bout of pneumonia. He's now home on oxygen (oxygen is on the number 4 setting whatever that means) for at least 16 hours per day, but feels and looks awful. His capacity was c30% when it was last tested.

Both him and my mum are not fans of asking questions, especially when it comes to prognosis; they are also not great at remembering what medical professionals tell them (my dad definitely withholds whereas my mum gets overwhelmed).

They are also both not good at asking for help/support - in case they get told something that they don't want hear. I can understand, but it makes it very difficult for my sister and I to understand and/or help with the situation.

Dad will not do any exercise (he's not particularly mobile anyway) and he is refusing to go for any breathing support 'lessons'. He has very little appetite.

I suppose I just feel a little useless, and clueless. I know nobody wants to or can put any kind of timing on progression (dr said it looks like he's had it for a long time) but it makes it so difficult to not know what's going on.

[Biofreak]

Hi there kepisback. I would recommend that you give the helpline a call and read the information about about IPF on the Asthma and Lung UK website. My husband was diagnosed with IPF in 2020 during the pandemic at age 64. It's a progressive disease. My husband was stage 4 (end stage) when diagnosed and was on oxygen,as your dad on setting 4, 16 hours a day. He should have regular oxygen assessments so that his blood oxygen is kept at the appropriate level for him to maintain his other organs. I expect your Dad hasn't got much appetite. My husband didn't and was prescribed milkshakes (Nutra Life Foodlink Complete) to ensure his calorie intake was maintained. Try and persuade him to go to Lung Rehabilitation exercise sessions if they have been offered as they would help him and give him breathing techniques. Unfortunately it is progressive so any help offered, encourage him to take. My husband was fortunate enough to get a lung transplant in June last year but I do know how difficult life can be looking after a loved one with this awful disease. Has your Dad got an oxygen concentrator or just cylinders? I had a stairlift fitted so he was able to get upstairs more easily as he wasn't able to manage the stairs. Please don't hesitate to contact me if you would like any more information.

[kepisback in reply to Biofreak]

Thank you, I’ve read lots of the literature so feel reasonably informed on the generalities, I suppose it’s the specifics of my dad’s condition that I feel unaware of.

Thanks for recommending the helpline, I think that is a good idea.

Dad will not go to the rehab, doesn’t see the point in going to the respiratory nurses as he ‘still feels awful’ (they have been taking his oxygen levels - last time he went there were apparently suddenly loss of people in the room (according to my mum) but mum didn’t ask what the levels were or what was going on!)

I think he has concentrators but that’s a good question for me to ask. What’s the difference?

My mum is extremely anti getting a stairlift as she thinks that will make my dad even less willing to do any form of exercise than he is currently - he doesn’t want one either. Ooh they’re both so stubborn 🤦🏻‍♀️

I think he’s given up to be honest - after the last appointment (where according to both of them ‘nothing much’ was said) my mum suddenly started talking about ‘quality of life’ so I can only imagine that something was said but that neither of them want to talk about it. For context my dad is nearly 80 and has been in ill health for 15 years whereas my mum is very active and five years younger.

Sorry for the rambling post!

[Biofreak]

I forgot to say that your Dad should have been prescribed either Perfenidone or Nintendab which are two treatments to slow the progression of IPF. Not everyone can tolerate them but my husband did. Unfortunately they are the only treatments available at the moment and have to be prescribed by a specialist in lung conditions.

[kepisback in reply to Biofreak]

Unfortunately the consultant said that neither could be prescribed x

[Biofreak in reply to kepisback]

I don't know why that is. I would want to know the reason for that. I can only assume that it's because of your Dad's age. I know it's expensive. Perhaps they think it wouldn't make a great deal of difference but I would still like to know.

[Biofreak]

You're not rambling. It's a very stressful time for you. Concentrators are machines which produce oxygen. My husband needed oxygen 24/7 eventually and so although he had cylinders as well for going out, when he was in the house he used the concentrators, one upstairs and one downstairs. The oxygen cylinders would have run out in no time at all. If the hospital mentioned quality of life, I expect they have been told that it's progressive and there's no cure. Quality of life revolves round making life as comfortable as possible which is why I got the stairlift as our toilet is upstairs and he would have been confined to upstairs otherwise and I and he didn't want that. He should also have been referred to community palliative care for their area. They were a real help and sent a palliative care nurse who gave us lots of information and arranged one of their physios to come to the house and teach breathing techniques. At the end of the day you can only make suggestions and ultimately it's up to your mum and dad what they want to do. You can only do your best which you are obviously trying to do. Knowing what's available is half the battle. Remind them that it won't get easier, only harder I'm sad to say.

[AngieB72]

HiI have PF myself. Please look at information from both Pulmonary Fibrosis Trust and Action for Pulmonary Fibrosis. Alongside Asthma + Lung UK they are the British charities that are connected to PF. Also if you are on Facebook join the Pulmonary Fibrosis UK group - this is for both carers and patients and you will get lots of support if you need it.

[CDPO16]

Just saying hi and welcome kepisback

[Kcn3]

Would your parents let you or your sister go to the next appointment, or would your dad give his permission for either of you to talk to his consultant?

[watergazer]

Hi and welcome. I also feel it’s a good idea for yourself to go along to the next consultation. My son came with me and asked lots of questions for me x

[kepisback]

Thank you all. I am going to try and persuade my parents to allow me to come to the next appointment - unfortunately the last appointment my mum wasn’t allowed in with my dad, so that made it even more difficult. Someone has been in contact with my parents to see what support is required - it‘s not clear if this is palliative care team or general social care, so again I‘m going to try to find out (with permission obviously).

Thanks again all,

[Alberta56]

I'm sorry you and your sister are in such a difficult place. i hope your parents will let you help them. best wishes.