Am I losing it

Hi I'm new to this site my mum has PF and I feel lost she was took into hospital on Wednesday morning with a bad chest infection and after my brother has gone reading all the stuff on the Internet instead of coming up with 1 + 1 = 2 he's come up with 1 + 1 = 999 and now my head is all over the place I don't no enough about this condition and am just wondering if someone live with it or is looking after someone with PF who is happy to talk to me many thanks for reading I wish you all a merry Christmas xxx

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  • Hi & a very warm welcome!

    I do not have PF but some members here do have the condition. I'm sure they will be along soon to advise you.

    In the meantime I would advise you not to google the condition, it is not helpful to you.

    Speak to the BLF on Monday & they will answer your questions.

    Phone your Mum's GP who may be willing to discuss her condition with you.

    Help is here & I wish you all the best.

    Have a happy Christmas & good New Year & try not to worry too much 🎄🎅🏻🎁

  • Many thanks for ur reply it's just so hard not to listen to the bad things of this condition when I no there are also lots of good things happen for people with PF she was on a tablet that helped her but then they had to stop her taking g it as it was messing with her liver they then started her on another and it was all going great until last week when she fell ill I'm just crying all the time and I no that's no good for my mum she is 53 and such a wonderful lady who will do anything for anyone and now my brother had told me what he read I'm so scared.

    I didn't think that they would be able to talk to me about it but I'm going to ring them Monday and ask for a chat.

    Thank you for your reply merry Christmas xxxx

  • Just don't despair, advice is there for you.

    BLF helpline will be happy to talk to you about the condition.

    I completely understand your worries about your Mum. You need to be strong for her.

    I know you will do your upmost to help your Mum but please don't believe everything you read on the Internet.

    Keep in touch & let us know how you get on. 💐

  • Welcome to the forum and I'm so sorry to hear about your Mum. It must be heartbreaking for you to see her unwell. But it's not too surprising for anyone with chest conditions to fall ill with infections. I've just spent the best part of three weeks in hospital with a stubborn infection. I don't have PF so can't give you any advice but there are lots of members here who do have it and seem to be managing it fairly well. Don't be too despairing. The worst case scenario is always painted on the Internet, ignoring the many shades of grey and how it affects and progresses with different people. There are so many people here who were told they had a year or two to live and lots of them are around ten years later. Best wishes to you and your mum.

  • Sending love to you and your mum. You will get the help you need so don't despair. Xxx

  • Welcome to the site, hope you get the answers soon, your mam is in the best place to be looked after, take care of yourself too for when she comes home. best wishes jan x

  • A very warm welcome to you. I am so sorry your Mum is ill and in hospital at the moment. I have a different lung condition to your Mum but agree with Jessy that you will find it helpful to speak to BLF where you will get genuine info and advice.

    Lots of healing vibes to you Mum.

    love cx

  • Sending you warm wishes for Xmas,& positive vibes to your Mum,

    Some good advice here,take care,

    Love Wen ⛄️🎅🏻🎄🍷

  • I have Restrictive Lung Disease mainly caused by empyema when I had my lungs fail which in turn scared my lungs and exposed nerves in my chest wall. If I believed all I had read on WWW I should not be here! I also have PH and that shows an even worse prognosis on the WWW. But by the very fact I am writing this shows it is not always the best information out there.

    The best advice is even though we are all very different having a PMA sure works for me.

    Knowing your limits and pushing them a little is not a bad thing but never go to far, know when to stop and rest.

    I wish your mum a quick recovery.

  • Yes, I have IPF, currently seeing a Respiratory Specialist team at Coventry & Warwickshire Hospital, after being referred by the Respiratory Consultant at Warwick.

    Thing with IPF is that she will need a number of tests to see what condition the lungs are and courses of action and treatment. Main thing is try to be positive about it, try and do as much as possible physically, don't worry about running out of breath just rest in between. I manage to walk the dog for 20 minutes twice a day for exercise.

    I am on Pirfenidone and use an inhaler first thing in the morning, have joined the local Breath Easy group (details from the British Lung Foundation website) and awaiting attending Respiratory classes at the local Rehab Hospital. The tablets are there to either stop the condition getting worse or just slowing the rate of decline in lung capacity. I seem to have gone against the trend and my lung function is at the moment slightly improving. So there is hope.

    Just I said at the start, get help, do research, always try to stay positive, let family know why she can not as active or needs rest.

    Hope this helps.

    Wish her and yourselves a good Christmas and a really good New Year full of HOPE.

    Peter

  • Yes as Petebonny says, stay positive and stay away from the internet! I too have IPF and we have our ups and down days, your mum is in the best place to treat a chest infection and a guaranteed visit from Santa as well!

    Unfortunately some of our GP's (although great doctors) know very little about IPF/PF and other chest complaints so we get little info from them and we can wander around lost for a while, do ring the helpline and if they can't help you they will put you in touch with someone who can. If you wish to pm me, or get your mum to do it when she is a little better, then that is fine.......there is also a good group on Facebook for IPF/PF which has some great members and lots of good advice. Stay calm x

  • My advice is not to listen to your brother ask your mothers doctor to tell you what you need to know. I stick only to NHS sites for reading and if I read something that worries me I ask my doctor. I am sure there are lots of people on this site who will give you good info. The internet does have good info but I think there is too much of it that is hard to understand and causes you to worry unnecessarily. Remember that each case is different and what may concern other people may not be so in your mothers case. I do hope that things go well for your mother. Please try not to worry too much.

  • Thank you all sadly my mummy passed away last Monday things didn't get better from Christmas although she came home for 7 weeks then wastook back in I miss her dearly and it's only been 8 days I'm lost xxx

  • My heart goes out to you and your family. Just try and think that she is in peace now and no more pain. I am sure that is what she would say to you. Today especially, must be difficult but I can assure you time heals. Never forgotten and think of the lovely memories you had with your Mummy, God bless xx

  • What sad, sad news. My heart goes out to you. xx

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