Pulmonary Fibrosis

Thanks for the info. Sadgrandma. I will bear that in mind. Will wait to see the specialist first.
I am feeling very down about my diagnosis and dont know how to tell our children. I have always been a well woman and now hit with this ! DH tries to understand but is failing to grasp the reality . His Alzheimers means he is unable to fully understand and keeps saying " if you are not well you need to see the GP." He can not retain the knowledge that I have been there , done that and now waiting to see the specialist. Caring for my DH is very difficult at times and puts me under great stress. So this diagnosis is not helping my mood!
Sorry to rant on !!

My DH was diagnosed with PF just over two years ago and he is on tablets called
Nintedanib. They are not a cure but stop the disease from progressing and, so far he is doing well. These are only able to be prescribed by certain hospitals, Oxford Churchill in my DHs case , but others around the country. Why not ask your GP for a referral.
All the best.

Thanks FGT.

Another here sending a big hug and the hope for some reassurance for you going forward that progression is slow xx

Thankyou all. My appointment on Thursday with a GP was very depressing! He was all doom and gloom I came out thinking I hadn't much time left. I recognise how serious this is and will endeavour to remain positive. Thankyou Pamela you post has made me feel better. My big concern is for my husband , his dementia will not improve, it difficult already and will get worse. He needs me to be well and here and to be one step ahead all the time.
Pamela, I will read your post whenever I feel anxious, you have lifted my mood.
Louisa, you are correct. I have not and will not ask Dr Google.
Fingers crossed my appointment date will arrive soon . If not I will consider a private appointment.

When my DH was diagnosed about 6years ago I thought he would be dead in a year or two. He’s still fine and doesn’t appear to have deteriorated too much.
He saw the specialist who basically said that there wasn’t much that could be done and he hasn’t been back since.
Just keep as fit as possible. My DH still plays tennis although he’s not running about like he used to but then neither am I.
He’s 74 now.
Sending hugs

It’s a rather scary diagnosis but it might not progress at speed

Sending you biggest virtual hug 🤗🤗

Also sending positive vibes as things may look brighter when you find out more

Hugs for you 🤗

My mum was diagnosed with this at 86 ( shes 90 now) .....like you diagnosed after persistent cough....the condition has progressed...but not as fast as we were first led to beleive....try not to Google as the prognosis will all take you to the worst case scenarios....my mum walked 3 miles with us the other day...no problems.....its just inclines she can't do any more .....but its not all doom ....everyone is different....take care...I wish you well

No advice, I'm afraid, but I wish you well.
The charity Action for Pulmonary Fibrosis, where you might get some online support from others with the same condition.

Sending a huge hug x