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I have been getting increasingly breathless over past 6 months. I attended my gp 4 weeks ago and she organised a breathing test. The upshot of this is it has shown i have a restrictive lung problem . I am awaiting an appointment at respiratory clinic . My father died from pulmonary fibrosis 5yrs ago and I help nurse him in his last months as he did not want to go into hospital. I am now worrying that I have the same. I have not told any of my family yet as I don't know how.

Just looking for someone to talk to about all this .

Thank you Jennifer

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  • Posted

    Hi Jinty so sorry to hear about your diagnosis. In truth it's terrifying and depressing (at least for me) I suffer from COPD. You've also witnessed first hand what this PF is. I don't have a lot to say that might make you feel better. But if you want to talk about how you're feeling myself and I'm sure others on hear are willing to read and offer support and shared experiences. We're still here right now and that's something. So take each moment and day as it comes and live to the best of your ability. I'll try to do the same : )

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    • Posted

      Hi Marcus thank you for your reply and support. I'm at odds with myself just now about what and when I tell my family about what is wrong with me. They all know how my dad was and they will automatically think I will be the same. My dad's pf progressed very fast,within 6mths of diagnosis, he was on 24hr oxygen passed away soon after.

      I feel I should wait till I've seen respiratory consultant but don't know how long I will have to wait for appointment.

      I'm beginning to ramble on now .x

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  • Posted

    Well in Toronto where I'm from waiting times to see a respitologist is anywhere from2-3 months and can seem so long, completely understand where you're coming from in terms of keeping this in for that long.  Perhaps if there's someone you can trust among your friends or family to keep it to themselves...I definitely understand why you would want to wait to tell before being bombarded by a bunch of questions you don't know the answer to.  I don't think anyone really understands what it feels like to have a devastating disease until they do.  It can be lonely and depressing.  Sometimes I walk by cafes or patios and look at people's faces laughing and happy and think that used to be me.  Not that I don't have moments, but in those moments I picture myself as a living ghost.  Now who's rambling?  The best thing to do if you can I think is to not get too worked up until your respiratory consultation.  Because it may not be as bad as you might be projecting.  Have you considered taking supplements ie, NAC, MSM, vit e etc?

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  • Posted

    I think what really gets to me is I'm only 61 and I feel as though I've been given a death sentence. I love my grandchildren and I want to see them grow up.

    I'm taking vitamin at the moment and have been for awhile.

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  • Posted

    Hi Jinty, yes that is young.  I'm not an expert on PF but from what I've read there are treatments that can stall the progression of PF such as Esbriet or Ofev and of course a lung transplant and there are many anecdotes people living much longer than the dreaded Google search prognosis.  Form everything I've read and been told by others.  Keep a positive attitude, change your diet and exercise daily whether you want to or not.  I say this not trying to sound preachy because I definitely have dark moments and it can be difficult for me to stay positive.  But what comes naturally to me is a spirit of survival and fight.  That's what I can offer you in terms of advice with confidence.  Keep on keeping on.  If you're here today and feeling well then look into diet changes and supplements and go for a long walk at a good pace, practice breathing.  Cause the longer we keep on the longer we can be with our loved ones and who knows what medical changes may bring.  And your grandchildren are always going to live their Nan no matter what!

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  • Posted

    Hi Marcus, thank you for your kind words. I've just had a bad week what with getting told my breathing tests showed I had restricted lung damage. I've also had problems with my 12yr old grandaughters. It just all got on top of me.

    I think I need to contact one of my friends to talk to.

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  • Posted

    Hi Jinty:

    First sorry to hear you are not breathing too good.  Second, try not to get ahead of yourself.  IPF is not heriditary as far as i'm aware but I can understand your concerns.  I assume your tests will include a C-Scan and presumably a Lung Function Test where they do several tests with you blowing into a tube.  Let's see what those results show and then come back to us.  In the spirit of making you feel a little better, I was diagnosed with IPF in February 2012 and i'm still kicking and not on any medications.  Good luck with your tests and if you feel some stress breathe deeeply, hold it and let the air out very slowly.  And think positive.

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    • Posted

      Hi Bob, thank you for your reply . I've already had a lung function test and it showed I have restricted breathing which my gp says could be a sign of pf. I'm awaiting appointment at respiratory clinic when I hope to have ct arranged.

      I think I have just felt so devastated to be given this blow.

      I'm trying to remain positive but sometimes find this difficult.

      Thanks again xx

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  • Posted

    Hi again Jennifer and I apologize for missing that you had already had a PFT.  

    You may have already done this when your Dad was ill but if not, I'd like to suggest that you make a real effort to learn about and understand IPF,  In particular learn how to interpret the results of a PFT.  There is a whole slew of articles on the internet on interpreting IPFs; some are a bit complicated but there are also several straight-forward articles.  I found this helpful when meeting with my lung specialist and enabled me to better understand the terminology.  There are also some good videos on YouTube.  I'd start there as a picture is worth a thousand words.

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    • Posted

      Hi Bob,thanks for the info . I will certainly look up what you suggest. Unfortunately my Dad's was very fast progressing. It took along time to get a diagnosis and he passed away about 6mths after.

      Thanks again for your advice.

      Jinty

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  • Posted

    Hi Jinty,

    I was diagnosed with IPF a bit over a year ago. I am on oxygen 24/7 which for me, at 67 and not working is really nothing to get too upset over. Dragging a tank around outside is, but, well, you know... The point here is that if you are short on breath aren't you low on oxygen? I mean, if you need oxygen then time is of the essence to prevent other problems. 

    As you have family and have been a caregiver yourself I guess you are your own best advisor on who and when to tell and who and when to ask for help. 

    But as you really don't know what you are dealing with yet the frustration must be tremendous. Think about going to your testing with a friend. Doing this stuff all alone is a terrific burden and may be unnecessarily so. My wife has been so helpful in scheduling things and helping me remember both what to ask and what the doctor means. 

    One more thing: Marcus mentioned the to current meds being used, Ofev and Esbriet. There is a ton of new testing being done on this area lately. But you still have more diagnosing left. 

    That's all I've got today,

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    • Posted

      Thank you Eric........sometimes I think I'm jumping the gun but for me having nursed my dad it brings all that back. We had such a short time with him .

      I have spoken to a close friend who has emphysema and she was very understanding.

      I have recently gone through separation from husband, although he remains in the house sometimes and in property we have in France most of the time. He was very controlling and I'm frightened he will try to take over again if I'm not mentally strong enough to say no.

      Thanks again xx

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  • Posted

    Hi jinty,, I'm googling this as my auntie who I am extremely close to and look at as my Nan having lost her, 

    She has had sjrogens disease since the age of 40 and has lived happy since however she is now 70 (amazing) but is experiencing breathing problems and has been told she has scaring on her lungs and the likely hood is iLD 

    (Can’t remember the name but something lung desease) 

    She is awaiting the consultant to confirm this,, but what I really want to know is,, is that what your father passed away of within 6 months? 

    She has been given nothing to take at home but steroids until she sees the consultant (8 weeks from now)

    I hate the fact of her suffering and I just want to know what I'm up against?

    Is there a life expectancy with this? 

    Or is she going to be ok with treatment? 

    I'm broken to hear this but will never let her know I just want to be there as much as possible if it's likely there is a short outcome? 

    Thank you so much for sharing and so sorry to hear of your news I hope there is light at the end of your tunnel. 

    Lots of well wishes Steph x

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  • Posted

    Send toRev Pneumol Clin.1985;41(2):91-100.[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

    Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

    Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.

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