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[Abutilo]

I've just been diagnosed with ipf and finding it hard to cope with and to come to terms with

[sassy59]

Welcome to this friendly forum Abutilo. I’m sure someone will come along soon to offer reassurance to you. Please do phone the helpline during office hours on 03000 030 555. The can offer advice and support. Xxxx

[Lemon7]

I don't have any advice I can pass on but I want to wish you well and say I hope someone can pass on their wisdom to you. All the very best.

[MMaud]

Hi there Abutilo.

I was only diagnosed in October, following a scan a few months before. Right now, I'm just trying to get on with my life.

Are you well in yourself, or are you struggling with anything in particular?

I probably don't have a lot of insight or wisdom to offer you, but the members here are very knowledgeable and helpful, so my advice would be to ask any questions you might have.

[111Addie]

Hello. I’ve just joined here, and also just been diagnosed. For now it’s interstitial lung disorder, I’ll have more tests to establish PF, IPF, or perhaps progressive PF, or something else?It’s such a shock. I’m still reeling. I’ve just had all the oxygen thingies delivered and it’s like … What? I have to go out with THAT? The smaller tanks aren’t much better.

Sometimes I can’t help but cry. I feel my life is over. I’ve always been so active, involved, a solo traveller to far away places, a yoga fan, always busy.

Now ……. what?

At least I’m old, and can feel I’ve had a good run for my money. I was planning travel in March … can I? I feel weak …. is it psychosomatic?

I went out for dinner …. It exhausted me.

This ISNT me!

So I feel for you. Maybe some others can let us know how long it takes to get our heads around it.

[rossie1942]

I am so sorry to hear your news. My sister is in a similar position and so I have some understanding of how you much be feeling. It is frightening and so little information and in her case support. . Reading up it seems that each person is different so hopefully you will be able to continue to enjoy travel even if restricted to more local places.Thinking of you x

[111Addie in reply to rossie1942]

Thank you!

[Caspiana]

Hello Abutilo,

I understand the feeling well. It is a shock and it really takes time to learn to live with having a condition. It is stressful and at times very tedious. But life is not over for you. It may change a bit, but we learn to adapt. The good thing I gained from having a lung disease is that I had to slow down and when I did I began to see so much more of my life that I missed when I was well and less observant.

Do not lose heart. Many of us here lead perfectly productive lives and so can you.

Best wishes.

Cas xx 🌿

[Patk1]

Welcome to our forum

[Brikel]

Hi I was diagnosed about 5 years ago with IPF. I made the mistake of Googleing it and it scared the life out of me

Well I’m still here and enjoying life.

It takes time to adjust to this illness and you do have to take thing slower,

After a couple of years with various consultants it was decided that I didn’t have IPF but Rheumatoid related lung disease

So all I can say is hang on in there.

Accept all the advice that is given and look after yourself.

[Little-Lung-Lulu]

Hello Abutilo, Welcome to this site. I wish it was under better circumstances. I have been diagnosed with PF way back in 2008. Please search here for other members who have written in about their disease as you will get a lot of help and knowledge from people going through similar experiences. I also belong to a private group called Pulmonary Fibrosis UK who will take you under their wing and help in many ways. I suggest you join them as well. They specialize in helping PF/ IPF sufferers like us. xx

[kenbren]

I also have IPF and wanted to know why me. There is support out there as you will be aware but take one step at a time in more ways than one and if you have family this will be the best medication to have them around you There will be life changes as you well know.

There are a lot of lovely friends on this site reach out to them like I have.

I wish you all blessings there is light on the horizon.

[MMaud in reply to kenbren]

By the very nature Idiopathic PF means of an unknown cause.

My father had what would now have been be called IPF, although it is understood it was as a result of treatments for his RA. It's not always clear.

I also had a cousin unfortunate enough to be diagnosed with PF, although I don't know if he was ever fully categorised, but that was a few years ago.

Clearly, I could be in the unlucky bucket and have some weird genetic reason, and certainly as soon as a close family member has or has had PF (clearly my Father ticks that box), there is an automatic familial link.

For now, I am very well indeed. My IPF was picked up incidentally when I was a participant (ironically as a healthy person) in some cardiac research. Needless to say a slap with a wet kipper didn't cover it. Actually, it covered it even less for the researcher who was absolutely devastated by it all. (Yes, there are people out there who really care.)

I'll keep living my life in the best way I can and do what I can to remain healthy. Thus far, I'm getting along OK on the Nintedanib, so fingers crossed and put the next foot forward.

[Abutilo]

Thank you call so much for your kind replies. I was only diagnosed 2 weeks ago in hospital so I suppose it's still early days. I'm not feeling too well can only sit in chair and breathlessness is a problem I can't do much and tackling the stairs a big problem. I'm also on a high dose of prednisolone which I think is making me more worn out. It wasnt explained and given no advice so like Brikel I had to Google and scared the life out of me. I have no support. It doesn't help I have a big phobia with hospitals and medical staff although all were very good to me when I was in. I have a CT scan next week which I'm dreading. I used to do a bit in the garden which I can't see me doing any time soon

[CDPO16 in reply to Abutilo]

Belated greetings Abutilo. I'm sorry that you are feeling so unwell and have been given very little information. We will all have googled at some stage but it can be a frightening experience. As has been suggested, phoning the BLF help line to speak to one of the nurses is one way of getting good, knowledgeable advice and information.

Don't worry about the CT scan if you can help it. I have had 3 and each time the staff were very helpful and the scan is over in about 10 minutes. One tip, if you just have a t shirt on under your outer clothing you won't need to change into a gown which is a faff when short of breath.

I have stage 4 emphysema and understand how it feels to be constantly breathless and able to do very little but hopefully things will improve for you as time goes on. Best wishes xx

[Abutilo in reply to CDPO16]

Thank you for the C T tip that's helpful. The x-ray was a real faff with the clothes and breathlessness! I'm already getting stressed at the thought but that's me. Take care

[CDPO16 in reply to Abutilo]

I get easily stressed and anxious too if I have to go anywhere. Often the thought is worse than the event. I hope it will be for you too.

[Walkwalkwalk]

Hello Abutillo and welcome.

Learning to cope with IPF is not an easy process. The Pulmonary Fibrosis Foundation’s Boot Camp has been suggested and I endorse that wholeheartedly. It’s day by day hand holding and a chance to establish a routine with easy ways of self monitoring.

I will be back soon with information on a follow up book by Noah Greenspan, patients and carers involved with PF( Pulmonary Fibrosis) and ILD (Interstitial Lung Disease ) Having been diagnosed since 2006 it was a privilege to be part of this.

I wish you well and do stay in touch if difficult times need additional support.

Grace

[Katie_ALUK Partner British Lung Foundation]

Hi Abutilo,

Welcome to the forum. As others have mentioned, if you're in the UK please do give our BLF helpline a call on 03000 030 555 Monday to Friday 9am-5pm if you would like to have a chat with one of our respiratory nurses. We also have alot of useful information on IPF on our webpages here: blf.org.uk/support-for-you/...

Take care,

Katie

[Loobylu1]

me too my friend i am 41 a widow