New member

[Janeforpaul]

Hi I'm Jane my hubby Paul was diagnosed with ipf two and half years anyone else in same situation.Would love to chat share experience

[Helen6]

Hi Jane, I was diagnosed with IPF about 3 years ago. I don't know whether that will mean that I am at a similar stage to Paul as the situation at diagnosis seems to vary. I continued to work up until a year ago when fatigue meant that I had to take early retirement. Apart from the tiredness and coughing, I manage quite well and don't use oxygen. I have recently started to use a drug called Nintedanib (or Ofev) which is supposed to slow the progress of the disease but is only suitable for people who meet strict criteria e.g. Lung function within certain parameters etc. If you want, you can send me a private message by clicking on the symbol above next to my name. Think I've bot that right.

Best Wishes,

Helen

[Janeforpaul in reply to Helen6]

Hi Helen Paul only uses oramorph carbositine tablets vermilion in nebulizer and in oxygen two hours a day. He also has heart disease angina diabetic type two and rheumatoid arthritis which he takes all sorts of medication for. The worst is the depression and anxiety it's like sitting on a bomb and you don't know how long you have left

[Helen6 in reply to Janeforpaul]

Hi Jane, I think it is best to ignore predictions with regard to life expectancy - in truth, no one knows. There are many people on this site who have lived many years longer than they were told by doctors or Google. Most of Paul's conditions although uncomfortable to live with are not life threatening. Has Paul received any psychological support? If not, I would ask his doctor about this. His quality of life is important and anxiety and depression will prevent him from enjoying the things he can do. I know you both have a lot to deal with and it sounds as if talking to a professional about your worries might help you both.

Take Care

Helen

[y_not]

Hi Jane,

Just a note to say hi & welcome - COPD for my sins.

Best wishes

[Janeforpaul in reply to y_not]

Hi

[Hidden]

G'day Jane

I am a carer for my wife Susan, diagnosed in May 2014 with IPF.

Susan's DLCO at present is 25% and she is on the waiting list for a bilateral lung Tx at the Alfred hospital in Melbourne. Susan is on o2 at 6lpm and suffers badly with coughing fits,tiredness and panic attacks.

Our journey has not been good with the Dr's advising in Nov 2014 that I would lose her within a few months. Wrong, she is still with ,me albeit weakening.

Susan attends rehab exercises twice weekly, a major requirement to keep lungs working and maintain muscle tone.

Welcome to the "family"

Will (Australia)

[Janeforpaul in reply to Hidden]

No chance of lung transplant as Paul has other long term illnesses

[katieoxo60]

Welcome to the site Janeforpaul,sorry don't have IPF but there are lots on here who do , and a lot of interesting up to date data available. So Hope you find a few chatty freinds ,which I am sure you will.

[hufferpuffer]

Welcome to the site I don't have IPF either but just wanted to say hello, huff x

[Dedalus]

Welcome Jane & Paul

[romfty]

Hi Jane , I have IPF, was diagnosed in Feb 2015 but am sure have had it much longer than that, still mobile but use O2 during the day........... Paul is welcome to pm me for info, good luck.

[Janeforpaul in reply to romfty]

Are you from Britain what treatment have you been offered if any please

[adb11]

Hi Jane, I have IPF, diagnosed Feb-June 2014! I am on ambulatory O2 for exercise, and have been on nintedanib for a year. I care for my husband who has severe COPD, and we are both active with BLF! Message me if you want, or talk on here.

[bonniemillie12]

hi there ive been on this site for 2yrs and only ever posted once dont know why i read the posts every day so i know how everybody is i was diagnosed 2yrs ago with copd but have other problems so when i read what people write i dont feel i am on my own i know there is plenty of people who are suffering i have in silence but this site helps so keep reading it and it really does help you you can get advise and just company when and if you want or like me the secret reader ha ha take care

[brainyone]

A good way to speak to and meet other sufferers and carers is to call the helpline of BLF for contact details of Support groups,Breathe Easy in your area. Sharing experiences is a good way to help come to term with is awful illnes

[brainyone]

Really earlier message of mine we should all include carers for those who can help with experiences and to help the feeling "it's not happening to just me"

[yesilkedi]

Hi Jane, my husband has severe COPD, was diagnosed 10 years ago. It's hard to be a carer as you need to be strong for the person you care for but I am sure you will find a Lot of support here. Look after yourself too!