Pulmonary Fibrosis sucks!

My dad is 65 and the most amazing man I ever met. I remember him teaching me to swim when I was little, playing cricket in the park on a summers day (yes we did have them!) and especially getting so excited when he bought his first car. A green Talbot Horizon back in the 80's. He worked an extra night job to buy the car so we could go out as a family and so he wouldn't have to spend over an hour walking to work every day.

Fast forward to the present day.

He cannot get out of bed without needing his oxygen and having a terrible bout of coughing. He refuses his dinner as he has no appetite. He drifts off to sleep many times during the day. Just getting up and going to the bathroom is a struggle. He manages a small bowl of soup for tea. I ask how he has been since I saw him this morning and he admits he's had a bad day. When asked why he didn't tell me this morning.......he didn't want to worry me.

Dads.

I love him and hurt for him. For the man he once was......only 6 months ago running around with his 14 month old grand daughter. This awful disease has robbed him of his independence that he so fiercely valued.

And what can we do?

My mum says laughter is the best medicine........and we laugh together xxx

9 Replies

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  • I have every faith that your sons will remember you for all the love you gave and all the laughter you shared. Plus all those silly things that you said or did that made them say.......oh dad!

  • my husband has the same days as your dad, he can give rip van winkle competition when it comes to sleeping, he is 68and was a different man a year ago. We also find that laughing is the best thing to do, there will be plenty of time for tears later. I am now a carer for the man who supported me for 40 years. You are so right, it sucks. Love to you and your family.

  • you made me smile reading your reply and if we can manage to keep each other smiling through the hard times then I think enough said xx

  • Sorry to hear this Tanya,

    I didn't know about this condition, am looking into it now

  • The problem is not many people have heard about this insidious disease yet more people die from PF than from breast cancer. I was a nurse for over 30 years and hadnt heard of it till i got it. I am in a group and we are trying hard to raise awareness of it and trying hard to raise the £5000 we need to set up as a registered charity. We're well on the way but until we get the registration we cant have a just giving page etc.

    Unlike COPD which is an obstructive lung disease IPF/PF is restrictive, which means we have problems getting enough oxygen to pass through our leatherlike lungs. We dont usually have problems getting rid of carbon dioxide thats why some of us are on quite high volumes of O2. I use up to 6 LPM when walking around and I have to be on a minimum of 3LPM when sitting. There is no cure except lung transplant and they dont have any treatment that works. We do get tired because of the struggle we have to breathe on a daily basis. Even just eating a meal is tiring :-(

    Maureen

  • I told my parents what you said and every day its like, how is this possible in todays day and age? I am so angry and I honestly feel that there is simply not enough done about this disease and there needs to be more awareness. Money needs to be spent on finding treatments so amazing people like you can live a life you deserve xx

  • Ah, so sorry. I really feel for you. Reminded me of my Dad who died a long time ago... though we didn't speak about shared memories so much, we did laugh about some memories. wish we'd spoken more about our memories. I did say 'thanks for everything' and 'I love you' ...glad of that.

  • Ah it's so so hard, your there for him and he and your mum know that. I think people do feel they are putting on to others at times, my husband is off work at the moment helping me he will be going back to work next week what would I do with out him? Every time your ill you think what next, thinking of you Val x

  • thinking of you too xx

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