Ipf

Hi. My husband has recently been diagnosed with PF l am not sure if it is IPF the doctors havent told us anything yet ,should see Consultant soon ,will find out more then ,I am trying to find out as much as I can our G P is pretty useless told us to enjoy what time we have left. Joy

[mrsmummy]

What a joyless GP! We have members with IPF and hopefully some of them will see your post soon. Welcome to the forum.

[sibkev]

i had ipf then lung tpland just ask what you need to know

[Catwoman50]

I have IPF. Diagnosed about a year ago. After many trips to gp and basic xraY's over about 4 years!. Insist on a HTCT, I think that's what it is, any not a basic one. I then had a vats lung biopsy. The best people I find to have around you, is a pulmonary nurse specialist. They have all the info and are more willing to take time to explain things than the consultant. I have only seen the consultant once but see the nurse every 3 months. The best advice I can give you, as all our stages are different, is be tenacious and don't be sidelined into thinking your being a nuisance. No one cares as much about you as you yourself, so do please stick to your guns if your not happy with what your being told or your treatment.

I found out all this the hard way by being too nice.

[Ian1369]

I have IPF.

In the summer/autumn of 2016 I had a cough that would just not go away and also picked up colds and again found it hard to get rid of them. Next I started feeling tired and short of breath SOB doing simple physical tasks. Seen my GP, puffer tests, chest x ray carried out . X Rays showed a dull shadow on lungs. Was seen for a CT Scan and then a VATS lung biopsy which confirmed I had IPF. Now on antifibrotic medication OFEV which will hopefully slow down the progression of the disease, MEDS took some getting used too due to the side effects. As you will probably know IPF is incurable and only long term hope is a lung transplant. After the initial shock, I read as much as I could about IPF because i never had heard of it before from proper internet sites like BLF, NHS, Inspire as a lot of the stupid sites will have you dead in a very short period of time. Both of you need to stay as positive as you can and trust me exercise / walking is a must to help stave of the dark days of depression.

Good luck and like catwoman said ask questions and pester people for the proper treatment.

[Lesley54]

Thank you for your comment my hubby is waiting to find out what he has