Can it get better in time

Hi all newbie to forum.

I was diagnosed with pulmonary fibrosis about 10 years ago and now I have been diagnosed with Emphysema 8 months ago after a scan. I find it very hard to have a good nights sleep due waking up 2 or 3 times through the night and then I have to use my inhalers due to shortness of breath. I loved my gardening and cycling, but both have had to be put on the side due to getting out of breath. I am still working as a health and safety officer at an academy,but the walking around the building is also getting to me now. I just feel very aggitated and depressed of how much I have had to change my lifestyle. I have even on a few occassions broke down in tears just thinking of what I was and what I am now due to my condition. On a good note I am going to take my 2 young grandchildren to skeggy in August and have a good holiday.

Dave

6 Replies

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  • I'm sorry you've been feeling depressed Davhil, I think it happens to us all at some stage. I can't even enjoy my favourite swimming anymore, but at least we are still here and at least you can enjoy the company of your grandchildren :)

    Our condition is unlikely to get better but I'm sure you are doing all you can to make sure it doesn't get any worse.

    Keep calm and carry on ..........

    :)

  • Hi Dave

    being diagnosed 10 yrs ago you certainly are in a minority for someone with pulmonary fibrosis. I am O2 dependant, I was a nurse for 33 yrs and then clerical for 2 years after diagnosis so if you're still working 10yrs on I think you should be feeling blessed. I cant run or even walk around with my grandchildren. Please look on the positive side, you are still working you aren't dependant on oxygen and you must have a fair quality of life. Please make the most of what you have while you can. I was fiercely independant and was always the one to help others and now i depend on others to help me.I used to swim 65 lengths of the local pool 3 times per week which was 3 miles, now i cant walk 1 length of the pool :-(

    Maureen

  • By the way in answer to your original question the only way to get rid of Pulmonary Fibrosis is to have a lung transplant but they are few and far between.My consultant has told me that he has only known of one patient over 62 to have had a transplant so that rules me out by a few months. I'm a member of a pulmonary fibrosis forum if anyone is interested in joining here is the address

    health.groups.yahoo.com/gro...

    We all either have IPF/PF or are carers and share our thoughts feelings and help each other with useful advice.

    Regards

    Maureen

  • I think its amazing that you have lived with PF all this time and are still leading a pretty active life, especially working. My dad has had it 4 years roughly and would love to be as active as you and i know you will be an inspiration to everyone with PF too xxx

  • Well thank you all very much for your comments, its much appriciated. After reading some of the Q/A asked in this forum i feel that I am not on my own and will now think positive and get on with my life as much as I can and enjoy my grandchildren.

    When I was diagnosed with PF I had a great principal and set of governors whom sat me down and said when my job got to much with manual work there was a post as the health and safety officer of the academy being looked at and that I should think about applying when it came around. After 4 long years the post was advertised and I put an application form in and was successful. Now I can please myself how much walking about I dom and take my tiome which has helped a great deal.

    My consultant has said how well I have coped with my PF complaint ,but I think it has just hit home after being diagnosed with Emphysema and I just needed some support from others whom also suffer with a lung problem.

    I'm just going to enjoy life as much as I can and keep up hope.

    Thanks everyone once again

    Dave

  • It's lovely to read your positivity Dave, when I told my dad that you had PF for that long I could see the lift in his spirit and my mums too. It isn't uncommon too, according to various health professionals so please let that give you all hope. Dad also has emphysema like you and has just started a Pulmonary Rehab Course and he is finding it a great inspiration and a great benefit. Take care xx

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