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IPF

Posted , 3 users are following.

pippinscat
pippinscat

Can someone please help?

Yesterday my husband saw the respiratory specialist after a wait of 13 weeks.  It has been confirmed that he has a mild IPF - does this mean it will develop into a more serious form of IPF?  He had an ECG, a blow test and bloods done while we were at the hospital and has been informed that he will get a further appointment in 2 months for the camera to delve more deeply.  He is pretending to be quite laid back about it all but he does suffer with anxiety and I'm afraid that this may infuse the situation.  He will be 72 next month and he still does a small gardening round and likes to walk - he only seems to get breathless walking up small hills.  He tends to use his nebulizer more often now and he has good and bad days. Other than this health he is quite good - a little overweight perhaps.

0 likes, 8 replies

8 Replies

  • neville93106
    neville93106 pippinscat

    Posted

    Your husband sounds very like me. I developed IPF in my mid seventies starting with difficulty in walking up hills. I am now 81, and much worse. If he takes Esbriet/ninetab it will slow the development if the disease, but in about 5 years he will probably be more or less housebound and will need supplementary oxygen.  It is not a very jollly life, but if you have a loving wife, as I do, and live in a nice house, it can be quite acceptable.  Make  sure he gets the medication.

    neville

    • pippinscat
      pippinscat neville93106

      Posted

      Thank you Neville - the specialist did say that there was medication to slow the progress of the condition but I guess he is waiting on the results of the tests yesterday and perhaps the 'camera' test which we have been told will be in about 2 months time before prescribing. We are very new to this and are unsure of what will happen next.

      It's very reassuring that there are these types of forums to get the answers.

      Thank you once again.

      Sue

       

    • neville93106
      neville93106 pippinscat

      Posted

      It is very important to get Esbriet as soon as is possible.  I have had only very very mild side effects, and even a few weeks delay is important.

      good luck.

      neville

    • pippinscat
      pippinscat neville93106

      Posted

      Thanks for the info Neville but who do we talk to to get the Esbriet - this information was not forthcoming from the specialist yesterday

      Sue

       

  • epictetus1939
    epictetus1939 pippinscat

    Posted

    Hi pippinscat

    I am 77 otherwise in excelent healt and  have mild IPF which was diagonsed by a high reso CT scan, test of my FVC  (108%) and gas transfer test TLCOc (66.9%).  The doctor heard "velcro crackles" in my lungs.  I have been accepted for a drug trial of Nintedanib which normally slows down the progression rate by about 50%.  i think I have about 10 years. Some chance that a better drug will be developed in time.

    I am surprised you have had a  diagnosis without some discussion on treatment.  Perhaps they are not sure yet.  This could be good and there are several types if interstitial lung diseases with varying prognoses.

    I am hopping mad because I have an early diagnosis and my FVC is above 80% I do not qualify for NHS treatment.  The UK and parts of Spain are the only countries in Europe where treatment is denied by the national rules.  In the UK case by NICE guidelines.  My gas transfer is below normal and I will probably never qualify because this is ignored by the rules  I am fortunate to have been accepted on the drug trial where I wil get the proper treatment. 

    I suggest you ask for the test results.  If your husband is below 80% and it is IPF he should get treatment on the NHS.

    Thanks for your post. Please keep in touch and best wishes.

    • pippinscat
      pippinscat epictetus1939

      Posted

      Thank you for your response.  My husband was diagnosed after a high reso CT scan and it was confirmed by the respiratory specialist yesterday as being mild IPF.  Medication was mentioned but not forthcoming and we summized that it was because of waiting on results of an ECG, blow test and bloods. He has also been informed that he will be called back for a camera examination in 2 months. This is all alien to us and because we are not in a private health scheme and rely on the NHS we don't really know what to expect and when. I am just thankful for these forums where I can seek answers to my questions

  • neville93106
    neville93106 pippinscat

    Posted

    Any lung specialist should know about Esbriet.

    tell them, or your GP, to go to www.esbriet, or go to NI

    CE..

    .

    if they don't know about Esbriet or ninetab you need a better specialist.  I live in France, which is different and much more readily available.  Can some U.K. Person tell. Pippinscat how do fibd it?

    • epictetus1939
      epictetus1939 neville93106

      Posted

      We have Ninteanib and Esbriet in the UK but NICE guidelines prevent it from being prescribed till your FVC reaches 80% of the predicted value.

      I will be geting it because I am doing a drug trial for people above 80%.  Before I got accepted I was planning to move to France.

      My sugestion to Pippinscat is to ask to see the Spirometry result and then you wil know where you stand.  

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