I have been diagnosed with IPF

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I have been diagnosed with IPF Am only on inhaler at the moment

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9 Replies

  • Posted

    Hi Cally262

    I don't know where you were diagnosed but if at Ipswich I would suggest you see Dr. Rabbani as she is excellent and if you need to be referred to a specialists centre she will probably refer you to Papworth Hospital. I go there now every 3 months. However, I haved digressed.

    It seem to me good that you are only on an inhaler but presumably they have done Lung Breathing Tests to see what capacity you can get into your lungs - mine was 62% in October having increased from 56% nine months ago; this has been largely due to my taking 'Pirfenidone' and losing some 10kg in weight.

    While this is enough about me although I feel talking helps ease the load - what have they told you about your prognosis?

    If you wish to talk with me I will only be too happy to respond.

    Jazztrain

    PS: I see you have been diagnosed as '2' which is the same as me.

    Kind regards

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    • Posted

      I am seeinng a Lung consultant Jazztrain but they hav'nt old me much

      i have the breathing tests before i go to see him every 6 months

      My only symptoms are an annoying cough and a ittle out of breath if i wal up a hill...

       

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  • Posted

    Hi Cally262

    Not sure what you are asking, but my OH was diagnosed with IPF in June 2015 after another xray, having previously been wrongly diagnosed and treated for Bronchiectasis  since October 2014.He was not at all well, lost alot of weight and struggled with his breathing and coughing and basically had to stop all his hobbies and activities as he had no energy/breath.

    In August he had a CT scan and saw a pulmonary consultant who arranged for masses of tests and eventually he was referred to a specialist in London.

     The biggest problem we found was the length of time between appointments, 'see you  again in 6 weeks', waiting for CT scan - 5 weeks etc. It appears there is no urgency or concern and all the while he was getting worse.

    Eventually in November 2015 he was prescribed Perfenidone which took over 4 weeks to arrive. But I feel had he had them in say August it would have been so much better as he deterioated alot in those 4 months and had to go on oxygen which he is currently on 15 hours a day.

    I have not read of anyone else on this forum losing weight. My OH was a big strong man who was lifting heavy weights at the gym until April 2015 and had large biceps. He is now skeletal and his arms are very thin. He lost his appetite, did not want to eat and says everything tastes of cardboard.

    He has also lost his confidence in going out because he cannot walk very far before he has to sit down and that is not usually possible.

    He is still on 15mg predisolone since he was diagnosed with Bronchiectasis and is struggling to wean himself off them as it makes him feel alot worse.

    Having read  letters from people using Perfenidone and are now feeling better has given him encouragement, but I still feel that had he started them earlier it would have been much better.

    I would say to you cally262 that you must push for early appointments and if necessary make a nuisance of yourself as I had to. I feel time is of the essence

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    • Posted

      I am seeinng a Lung consultant  but they hav'nt old me much

      i have the breathing tests before i go to see him every 6 months

      My only symptoms are an annoying cough and a ittle out of breath if i walk up a hll

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  • Posted

    Hi Cally262

    I worked in the NHS for over 20 years and in my experience it pays not to make a nuisance of yourself; just be firm and above all polite. In my losing 10kgs in 9 months was because when I started 'Pirfenidone' I had to cut my alcohol down to just 13 units per week which was hard for me as I used to drink about 36 cans of Special Brew weekly and at 4.5 units a can - that's a lot of alcohol But surprisingly it did not do my liver any harm as when I had my blood test done a week before I started the drug my Alk Phos was only 63 and it cannot rise above 135 as a consequence I heeded my consultants advice and kept it low ever since.

    I was prescribed Oxygen but found with the taking the drug Pirfenidone I didn't need it but I keep my oxygen bottles as my breathing will get worse eventually.

    I was advised to keep away from second hand cigarette smoke which I do and this helps. Just try and keep calm and don't panic.

    Kind regards

    Jazztrain

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  • Posted

    Hi Cally

    Have you had a CT Scan yet?

    By referring to your Consultant as 'HIM' I presume you are seeing a man! Can I ask please where you are seeing him - which Hospital?

    Normally follow-up appointments are every 3 months so 6 months seem a little excessive.

    I always feel it is best to start from the beginning so please tell em everything - I have plenty of time to talk to anyone with a condition similar to mine.

    Kind regards

    Jazztrain

    PS: If you don't want to talk to me on here we can talk privately on our private email address it is up to you.

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    • Posted

      Yes jazz i,ve had a CT scan and it shows the damage on the bottom of my lungs all they've given me sofare is clenil inhaler i'm due to see him the 28th of this month so i'm going to ask lots of questions..

      Regards Cally

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  • Posted

    Yes Ventolin I expect but read my last email please.

    Jazztrain

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  • Posted

    Hi Cally

    So where are you seeing this geezer - which hospital?  IPF is a condition where the little air sacs at the base of the lungs die and causes breathing problems. Lack of breath walking uphill is one of the effects of the condition of IPF. But I am 71 but it can occur at any age.

    Jazztrain

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