Pulmonary Fibrosis

Sorry, shelflife, just reread that and realise it sounds patronising. What i meant to say was that you could be forgiven for missing things as you have such a lot to cope with.

Hi shelflife, I am sorry about your diagnosis. I have no experiences to share but I do hope you are accessing all the available help for your husband - which will in turn help you.

Thank you all , I do appreciate your posts.
Consultant in September, so will wait and see what he / she has to say. In the meantime I am focusing on trying to relax! I feel fine. DH is having a good day !'

I am so sorry to hear this, you have my best wishes, that it do progresses slowly.♥️
What a terrible shock for you.

As a patient , with R,A,, COPD and a cystic fibrosis gene carrier, I am at high risk, I have twice been investigated for pulmonary fibrosis. It was a scary time.

💐

It is hard enough to be caring for your DH without health problems of your own, but the lung function test results sound very positive which must be a relief. Sending a hand hold.

I can imagine your day to day loneliness Shelflife so it’s heartening to hear your adult children are being so wonderful. A trouble shared and all that … 💕

Yes FGT. Our 3 adult children are in the picture and are amazing!
The situation is complicated because of my DH s Alzheimers Disease. He is now not fully ' there' to support me. Its a bit lonely 🙁. He has good days and I appreciate those but the situation makes me feel sad, but feeling better after yesterday's appointment.

The relief in your post is palpable Shelflife! That’s good to hear. Did you share your concerns with your adult children?

A quick update. Had an in depth breathing assessment in hospital yesterday. I was told my lung function was within the normal range. Feeling more positive now, consultant appointment early September.
Thankyou all for reading and to those who have responded. Much appreciated.

Thankyou Pamela. Dont think I will be waiting too long for my hospital appointment- it was put through as an urgent referral. My sister will come with me. I feel sad because I would normally have ny DH beside me but his Alzheimers gets in the way!

You are very welcome Shelflife I’m glad you got some comfort from my post. I came home from DH’s consultation feeling very unhappy and almost felt we had better order the coffin. Am in a much more optimistic state now. DH is 74 now and still doing the things he has always done.
He will absolutely not sing, which is a shame as it is really good exercise for the lungs.
Sadgrandma I will tell DH to ask about that medication. Thank you.

I thought you might find this support group useful - Action for Pulmonary Fibrosis actionpf.org/

I appreciate your response Sadgrandma,
I will speak to our chidren . My DH diagnosis has already placed a huge amount of stress on me and now this!
Such a shock as I always felt how lucky I was to be well. I really don't know if I am being over dramatic although I fully recognise I have a serious condition. I must try and be positive! I have always been a happy and relaxed woman but for the first time I now feel despondent.
I need to woman up !!!!!

Shelflife
I am so sorry for your situation, especially with your husband’s illness too. I’m pleased that you have two close friends and your sister but please also tell your children asthey will want to support you too. I can only stress that my DH is fine, he’s slowed down a bit but he’s nearly eighty so to be expected. However he’s still managing his allotment and going for walks. Do chase up your consultant appointment but if you are worried and can manage a private one go for that.
Thinking of you. 💐

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.