IPF

[Looseloafers]

Hi all. I have been diagnosed with IPF today! Very scary! Has anyone got any tips please

[Hidden]

Hello, you have come to the right place. blf.org.uk/support-for-you/... would be a good place to start. You could ring 03000 030 555 (the BLF helpline) available Monday to Friday, 9am - 5pm. I'm sure others will be along soon to offer help and support.

[BrianTaylor]

Thinking of you Loosloafers, I was diagnosed with this last week. I’ve got an urgent appointment coming in about 6 weeks with the chest consultant. I’m trying not to think about it till I know more.

[Looseloafers in reply to BrianTaylor]

Hi Brian. My consultant is sending me to a specialist in IPF apparently there are options as far as treatment goes so will wait and see. Like you trying not to think about it too much. Hope all goes well with you. Whereabouts are you.

[BrianTaylor in reply to Looseloafers]

Glad you’re seeing a specialist, I think my appointment is for everything rather than just IPF, although I guess he may send me to someone else after that? I’m in North Wales. Thanks, we will have to compare notes 👍

[Looseloafers in reply to BrianTaylor]

Yes Brian let me know how you get on. I’m in Northumberland

[Brikel]

Ignore Google

I was diagnosed with this over five years ago first thing I did was to google it and it scared the life out of me.

I’m being monitored every 3 to 6 months

I have pulmonary function tests each time I’m in clinic to check my breathing and lung capacity

So far so good

Regards

Brian K

[Looseloafers in reply to Brikel]

Keep positive I think that’s very important x

[Mavary]

I was told the I have pulmonary fibrosis about six months ago after I passed out because I couldn’t breathe. I should have gone back to see the Consultant in December but was in hospital so couldn’t go. I had an appointment in May but I had a phone call last week asking me if I would like to go April 1st so I will know more then.

[Looseloafers in reply to Mavary]

Hi Mavary hope all goes well with you let us know x

[Mavary in reply to Looseloafers]

Thank you. I’ve been burying my head in the sand but now my appointment is looming I’m getting nervous.

[Looseloafers in reply to Mavary]

Yes I was too but the guy I saw was lovely. I said ok but I need another 10 years and he said ok we’ll work towards that!!

[Sooki]

Join Pulmonary Fibrosis Uk there are 4000 members there is nothing we don’t know it’s a wonderful supportive site.

[Looseloafers in reply to Sooki]

Hi Sooki. I tried but can’t find the right link x

[Sooki in reply to Looseloafers]

How silly I can’t find it if I google,go via Facebook and type in Pulmonary Fibrosis,I’m not that savvy about sending links,but if you have no luck I will try and ask a another member how to do it.😕

[BrianTaylor]

blf.org.uk/support-for-you/...

[Looseloafers in reply to BrianTaylor]

Thanks Brian looks interesting

[Sooki]

Apparently you do have to go via Facebook as we are a closed group.

[Looseloafers in reply to Sooki]

Thanks for that Sooki x

[Wellyboot0_0]

Sorry to hear this, we are going to Papworth tomorrow for my dads diagnosis. His file was being sent to panel from our last visit 6 weeks ago and although it looks like its going to be IPF we will get his diagnosis tomorrow. The people on here have all been really helpful and supportive. My advice as a daughter is to make sure you talk to those around you, they are as scared and worried as you. They dont want to lose you any more than you want to go. My dads hospital doctor was very open with my dad as he is not coping with having an expiry date. She told him, because he asked, that the median life expectancy was 3-5 years but that there are so many variables that can change this time for better or worse that he should try and forget that and just live each day, one at a time. I think for us this life expectancy thing has been the hardest part. My dad is 76 this year, so is no spring chicken and that may have been his life expectancy anyway, but we are trying our hardest to change his outlook so that he makes the most of every day rather than just counting them down xxx hope you keep well, we are in Essex but Im sure we will meet again on here over time xxx

[Looseloafers in reply to Wellyboot0_0]

Hi. My consultant didn’t actually come out and say IPF but waffled round it! I am waiting for a specialist appt so see what she says. I try not to think of time but it is difficult sometimes. The worst thing is being breathless hate that but I don’t stop doing what I want I just stop and wait for it to pass then carry on! Wish your dad all the best from me us oldies have to stick together x

[Wellyboot0_0]

Our consultant was the same. Gave us paperwork to read up on the two different tablets that are used for IPF and said that at least we would have an idea if it was that.

The breathlessness is definitely the worst bit. My dad gets panicky when he cant breathe (so would I!) but the doctor at the hospital is going to book him in on local rehab classes to learn breathing techniques and have local support. Its twice a week for 6 weeks. She felt certain they would be able to help. She also suggested a batrery operated hand fan can help combat the breathlessness. Failing all that there is a tablet that hoes under your tongue a bit like an angina one to combat the panicky feeling, but sounds like you are in control of that.

Hopefully at your next appointment you will get a bit more info xxxx