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.
Was diagnosed yesterday with U.I.P - Lung Conditions C...
Was diagnosed yesterday with U.I.P
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.
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
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
I have copd so I cant help you but there are a lot of friendly helpful people on here who will,
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
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 .
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
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
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
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
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
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 !!!!!!!!!! )
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.
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
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