Was diagnosed yesterday with U.I.P - Lung Conditions C...

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Was diagnosed yesterday with U.I.P

Chillout profile image
21 Replies

Finding it hard to take in at the moment, any advice or help from a similar person in the same condition would be helpful. I am 54/Male/Marriedwith two children still at home.

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Chillout profile image
Chillout
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21 Replies
Toci profile image
Toci

Hi, I have COPD so am not much help to you. I just wanted to say hello and welcome to the site. I am sure there will be someone else along who can help more.

Chillout profile image
Chillout in reply toToci

Hello to you Toci and thanks for the welcome.

peege profile image
peege

Im so sorry to hear your news . Someone will be along shortly who will be better able to help.

You could ring the helpline tomorrow, 03000 555 030. They have experts and also counsellors. Just the cost of a local call. Keep in touch, let us know how it's going. Peeg

Chillout profile image
Chillout in reply topeege

Thanks for the advice peeg, Will ring the number later. Thx Chillout

Chillout profile image
Chillout

Thanks flibberti for the sites. I will go to them in a while to see what they have to offer. Thankyou for responding to my question. Chillout x

silversurfer profile image
silversurfer

I have copd so I cant help you but there are a lot of friendly helpful people on here who will,

Chillout profile image
Chillout in reply tosilversurfer

Thanks silversurfer its good to know that peeps without my prob will still make contact

sassy59 profile image
sassy59

Welcome chillout and hope you get to chat with someone who has similar problems to you. I am carer for hubby Pete who has copd and sarcoidosis among other things. Just wanted to welcome you to the site anyway. Good luck xxxx

Chillout profile image
Chillout in reply tosassy59

Thanks for the welcome...xx

Hi Chillout ,So sorry to read about your diagnosis . Although I have never heard of it ( but have just googled it ) I can understand what you are going through - my husband was diagnosed just over two years ago with IPH. a very rare lung condition . We still haven't come across anyone else who has experienced it so feel totally alone - apart from the Health Professionals of course ,although they can't tell us much either . Anyway , welcome to the site and keep your chin up .Helen .

Chillout profile image
Chillout in reply to

Hi Helen. Its still early days for me but I am hoping that this site will solve the loneliness problem. You and I could form a loneliness group..Thanx Chillout

Offcut profile image
Offcut

Hi Chillout

I have just been told I have Restrictive Lung Disease Due to scaring on the inside and outside of my lungs. I have also had Reflux for many years. Plus AF and a few other ailments to help things along.

Be Well

Chillout profile image
Chillout in reply toOffcut

Hi Offcut. Sorry to hear of your problems. You take care.....Chillout

appyalison profile image
appyalison

Hi Chill out, I have a few health issues but do not have UIP. All i can do is welcome you and let you know we are here for you. This is a very supportive site and we manage to have a laugh as well. Sometimes we need to offload as it can be difficult to say some things to loved ones. If you click on the large balloon near the top, you can ring the blf help team between 9 and 5 Mon to Fri. They know loads and they have counsellors. Good luck. :-) :-) Alison

Chillout profile image
Chillout in reply toappyalison

Hi Appyalison. Thanx for the welcome and its good to know that I could offload any issues I have, on here......Chillout

BugsBunny profile image
BugsBunny

Hi Chillout

Its a bummer being diagnosed with a serious lung disease at an early age. I will be 53 tomorrow and I have been ill for 5 years. I do not have UIP but I have another form of interstitial lung disease which also causes scaring. My suggestion to you is to find yourself a good consultant at a specialist hospital. Let me reassure that life as you know it isn't over. I still manage to be a pal to my grandchildren. I am not longer the football kicking grandma but the arts and crafts grandma. I wish you all the best.

Kind Regards

Mandy

Chillout profile image
Chillout in reply toBugsBunny

Hi Mandy Its still new to me and will have to follow the path of my consultant at the moment. He is now trying to find out if Rheumatoid Arthritus is present which could be the cause of mine, but until that appointment arrives I am back in Limbo, just waiting and hoping.....Thanx for the response...Chillout

in reply toBugsBunny

How right you are Bugs Bunny about life not being over - when my husband was diagnosed just over two years ago with IPH we really thought life as we knew it was over , but he is doing really well & we are going to the USA for the second time ( at Christmas ) since his diagnosis .We never thought we would be able to fly again initially - he also still does a few days at work as required as a H&S trainer ( he is 72 !!!!!!!!!! )

pulmonaria profile image
pulmonaria

Hi Chillout, my husband had IPF - there is huge complexity around the interstitial lung diseases especially differentiating around UIP/IPF/NSIP. In the early days we found the BLF helpline really helpful and reassuring - I really do recommend calling. I would also recommend the BLF Online Surgery on the IPF section of their website - it is really clear, helpful and informative. This early period of initial diagnosis is so hard as there is so much to get to grips with. We did find it settled and developed a good relationship with our consultant and then did our best to manage treading the line between keeping informed, accepting that there was nothing to do at first, we went through quite an extended period of 'watchful waiting' before eventually going on medication and checking out about trials whilst keeping focussed on living life and adjusting where we needed to. All my best wishes to you.

onamission profile image
onamission

Hi Chillout welcome to this site and if you ring BLF someone will help you they are a great bunch. I have severe COPD I was diagnosed when I was 42 but I still go swimming and try and keep myself fit that is the most important next to your flu jab, don't give up just yet I plan to celebrate my 100th birthday

poppyval profile image
poppyval

Hi Chillout, welcome to the site. Sorry to be late, but I do not get on the site too often, but then I have loads to read when I do lol. I have Pulmonary Fibrosis which was brought on from my Rheumatoid Arthritis, as apparently RA unlike Osteo Arthritis causes damage to the body organs too. My eyes are also affected and I use drops and ointments every day. This site is very helpful and so are the members. Good luck. Cheryl

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