IS THERE ANYONE WHO HAS IPF WHO WRITES ON THE BLOGS

i joined the BLF a few months ago and i notice that it's mainly carer's who keep in contact is there anyone who has IPF themselves who writies on the blogs. I joined as l felt very lonely and it'd nice to know who blogs that they have IPF, it seems to be mainly COPD, only one lady has got in touch, but mainly it's the husbands who have IPF, it's just nice to know how you are doing, there are so many stages of IPF it's nice to know what keeps you going.

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  • Hiya, as you may know, my dad has it and he prob wud come on here only he can't use a laptop for toffee! There is a lady, maureen on here who has it, lovely lady, havn't seen her for a while but then I'm not on here much lately myself. There are a few chaps on here who have it that you prob know too. I can also tell you what dad wud say, it is his family that keep him going and being as positive as you can. Call it a cliche but it's true xx

  • Hi Tanyamaria,

    Yes we have had contact before when I first joined and have spoken to Maureen through the forum, IPF comes through in so many forms as I have had a few replies which I will reply to, but sometimes when someone blogs I don't if it's IPF or not. I know the men don't really always do this type of thing for support, but I must say I have had so much help already, glad your dad is getting the help he needs, give him my best wishes. x

  • will do hun x

  • Hello buddygirl

    I have a form of pulmonary fibrosis and sometimes write on this blog. My fibrosis is not ideopathic because the cause is known (my own immune system is the cause through the auto-immune disease sjogren's syndrome).They have now relabelled my illness as 'non specific interstitial pneumonia' but still involves scarring on the lungs. I also recently developed pulmonary hypertension - an equally nasty condition. I was first diagnosed with PF two and half years ago. I was very shocked when I realised how serious the condition was and the poor likely outcome. I have since decided to make the best of what I have and have sought out the best treatment available. I am aiming to beat the gloomy outcome I was given at first. I am under two excellent specialist teams at the Royal Brompton and a rheumatologist consultant at my local hospital. They all liaise about my treatment. I am going in for overnight tests on 11th Dec because they are unsure why I am feeling much more breathless when the new drug I am on for PH has improved my echocardiogram results and my lung function slightly.

    At the moment I use oxygen at night (2lpm) and ambulatory oxygen (6lpm). However I am feeling much more breathless on relatively minor exertion around the house.

    It is our 50th wedding anniversary next August - I aim to be here to celebrate and my eldest grandson starts secondary school next September - I aim to see that too!!

    I think it is probably important to be as upbeat and active as you can ( will admit to finding this hard at times, particularly when at the moment am often feeling quite tired.)

    Happy to chat any time - Maggie

  • Hi Maggie,

    Thank you for replying l have had some reply's and l have seen your name a while ago when you found out it"s not idiopathic l'm so surprised that it comes from many different causes. l have just been given an oxygen concentrator this year which l keep where l sleep and have a small cylinder for taking out with me but so far haven't used it. How do you managed to sleep with the oxygen are you able to move around with it, l have just been given nasal cannula's and they smell awful l am breathing in this awful smell it's from the plastic tubing. Are you able to get around the shops or do you use a scooter. l hope you get on okay at the Brompton l wish l could get there but it's to far to travel. Do you get depressed trying to cope or are you okay.

    Mark has got in touch to say there is a pen pal section nice to let off steam. l keep as active as l can difficult when you can't breath very well l have to use a scooter but managed to park it and walk as it's the only exercise l get. Let us know how the tests go.

  • hello buddygirl, my main condition is bronchiectasis but I have also been told I have a small area IPF. I worry about how this will progress as the consultant says it is nothing to worry about at the moment. It is a lonely condition because people dont understand it. If you said you had lung cancer you would get immediate understanding.

    Nice to chat to you

    Maxer

  • Hello Buddygirl

    I also have a form of pulmonary fibrosis caused by rheumatoid arthritis. I have scarring at the base of the lungs and I am on ambulatory oxygen (6lpm). I took early ill health retirement from the Civil Service.

    I fill my time with hobbies such as dressmaking, pottery, mosaics and knitting. I go to adult education classes, breathe easy group and to U3A when I am not too tired or struggling for breath in the cold Manchester air.

    Although I have lots of young grandchildren I see them infrequently as I do not have the energy to be around them for long periods. I like this website because I can let my positive mask fall and I can tell people how it really is.

    You will get a lot of support on this forum.

    All the best

    Mandy

  • Hi I was diagnosed with early IPF a few weeks ago. I am a headteacher and thinking of going for ill health retirement . How difficult did you find it as I get the impression people don't really understand the disease?

  • Hi Buddygirl,

    I too have IPF which is not very nice, I also have pneumoconiosis from my 24 years in the south Wales coal mines, and then, at the age of 73 ,they found a tumor in my left lung and promply removed half of the lung, leaving me CANCER FREE.It is a bit of a struggle at times, many a tear shed only in frustration, at lack of being unable to do things.I keep cheerful as I wont show my wonderful wife and wonderful daughter and son and 4 grandchildren any sign of my discomfort but to them all ,who hve given me so much love, I show happiness always, my bad times done in private. I am now 1 month short of my 77th birthdayand continue to look forward with optisum?. This is the first time that I have visited this site but will keep in touch with anyone for a chat.

    Trevor

  • Hi Trevbtn,

    Welcome to this site and please keep in touch it is a hard and horrible disease isn't it and you have gone through it I am so pleased you are so positive, this year the IPF has come in and l have found it hard to adapt with the frustration of loosing my independence as l don't drive although I couldn't manage to manoeuvre to a wheel now, I have a scooter and a stairlift now and am on oxygen. l am coming up to 66 next month and have a 10 month old granddaughter and hope to be hear when she goes to school. During my bad spells l get hit by depression which comes with chronic lung disease, but l keep myself busy and my husband helps me around the house, he is very caring so l am blessed. Your family sound very loving keep well as you can during the winter weather.

  • Hi buddygirl I have ipf I also find that it's mainly copd or careers so I mainly use the Facebook group pulmonry fibrosis uk. There is lots of useful info on there and people at all different stages of ipf you can ha a good chat or just let off some steam. I also check out this site daily hope this helps.

  • Hi Alan,

    l will have a look at Face Book, Yahoo also have. group which l have joined but haven't yet done anything with it, l'm kind of getting to know the people on this site which is why l have asked if there is anyone with IPF. l read your post a while ago it must have come as a dreadful shock have the doctors any idea why you have it. My IPF started 10 years ago but l had signs before that but didn't realise what it was. Thank god is has been a slow one but this year it has started to rear it's ugly head. Are you taking any medicines l have tried them all and my body has rejected the side effects which is a shame. Keep in touch l would love to know how you are.

    Brenda

  • Hi brenda I'm hopping that my biopsy results give me some answers on the 3rd dec . My specialist won't prescribe anything he says there is no benefit and the side effects cause problems else were. Will keep in touch good luck on your journey hope you start feeling better soon .: - )

  • Hi Buddygirl

    The BLF runs a Penpal scheme - you can write/email/phone/text - go to blf.org.uk/Page/Penpals - for more detail and to complete a registration form. Or call us on 03000 030 555 - and ask to speak to Terrel or Kelly.

    We will do our best to link you up with someone who has the same condition etc.

    Thanks

    Mark

  • Hi buddygirl, I have just read your post I had P/F for 6 years then Rheumatoid Arthritis got into my lungs then I was diagnosed with IPF in Jan this year so I am still getting used to it all, I lost more than half my lung space and was told it was irreversible and my mobility was down to walking the length of my bed they were even talking about a double Lung transplant at my consultations, Now I am out there walking 3 miles a day weather permitting, the best thing you did was to come on this page you will find all the help and advice to help you and your husband at any time 24/7 there is always someone here. wish your husband all the best from Mattcass.

  • Hi Mattcass, How did you manage to improve yourself so much that you can now walk 3 miles a day? You are an inspiration and I would love to do whatever it is you are doing 'cause it certainly seems to be working. Keep on keeping well! :-) X

  • Hi Buddygirl

    We talked 8 months ago as you can see by the posts listed above. Well I am still alive and sort of kicking (though not with much energy)!!The fibrosis is still stable - have v damaged lungs but it has not progressed over last 12 months. Haven't needed to start on Rituximab as yet - they are saving this for when necessary further on. Unfortunately my breathing and mobility have worsened - even walking around the house is more difficult now and I must admit I do not go out much. However the cause is the pulmonary hypertension which often goes along with PF caused by an autoimmune illness. However the Brompton PH team are doing their best - I go every 3 months at least- I am on sildenafil which seems to be improving the pressure on the artery according to the echocardiogram. Unfortunately this doesn't seem to transpose into me feeling any better. I am still on night-time oxygen and amulatory oxygen when I do go out.

    I was in hospital in January for 2 weeks with a bad infection. Both times this has happened my overall condition seems to deteriorate. I came out of hospital unable to manage the stairs without great distress. I now have a stairlift which has made such a difference- the whole house is open to me again!

    However on the bright side - my husband and I will celebrate our 50th wedding anniversary in a couple of weeks and our eldest grandson starts secondary school in September. These were milestones I said in my earlier posts that I was hoping to reach and now am sure I will get there. I will have to try to think of more targets to aim for.

    It is difficult not to get down - life seems to have shrunk so much - living life vicariously through family and radio ets rather than engaging myself. The only thing I still retain is my school governor role at a local Infant school. This I continue with as long as I can be useful and must say I dread the day when I will have to give it up - I am so used to being part of a communtity and the staff and governors there are great and make me feel part of it all. Because of my compromised immune system I cannot have as much contact with the children as I used to do - but can work to ensure they have the best educational opportunities possible on the budget we have.

    Sorry - have gone on rather - like you I have no contact with others with my condition except through this site - can feel a bit lonely (and if I am feeling a bit sorry for myself - unfair!!)

    Maggie

  • Long may you continue Maggie! I can really empathise with you when you say life has shrunk so much. I also feel the need to feel useful and to pass on what "life experience" I can to those who may benefit from it. I do hope you can continue your work for as long as possible. Take great care. X

  • Thanks Mapal.

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