IPF

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HI, Im new too and would appreicate any help or advise. My mum aged 65 has just been diagnosed with IPF. Can anyone give me any advise as to what we should expect etccc. It is early days and we are awaiting her fist scan. Can anyone help with anything or an idea of what questions I should maybe have ready to ask? I'm a little overwhelmed with diagnosis at the moment so any advice would be really appreciated.

Thanks so much

Corin

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11 Replies

  • Posted

    Hello.  I am 80 years old, and I was diagnosed with IPF three years ago.  The disease is progressing  slowly and steadily, and I expect that I have at most one or two years to live.  But life is enjoyable and I am managing.

    the most important thing is to get the drug Esbriet. (Perfenidone) as soon as possible.  It was discover in 2014, and there is a detailed review of the successful clinical trials in the New England Journal of Medicine for May 2014.   I take it daily, and also prednisolone.  Together these make life tolerable. I also have two oxygen machines, one for use in the house, and another, called SimplyGo made by PhilIips, for going out and about.  I use this with three batteries, which together give me about 3 to 4 hours independence form the house.  I get very tired, and cannot do any physical exertion.  But life could be a lot,worse, and thanks to my lovely wife life is good.  You should insist on getting the drug.  It is costly but has been approved for use.  Your GO may not be able to,issue it.  Here in France I get it with. I trouble and no cost on the state medical system.

    good luck.  You should have a reasonable time and a reasonable life, though in the end we all come to the end, don't we?

    best wishes,

    neville

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    • Posted

      Dear Neville,

      Thank you very much for your kind reply. I am pleased to hear you are managing ok. I will definately take note of your advice!

      Thanks again for taking the time to respond.

      Best wishes to you and your famile

      Corina

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  • Posted

    Hi Corinaday,

    Sorry to hear of your mums diagnosis. I lost my Dad to IPF 2 years ago and he was 64. I think he had it for at least 15 years but kept getting misdiagnosed. The end was pretty quick and sudden, but I follow this thread because I am still trying to make sense of it.

    We tried to do as much with my Dad (within reason) before he passed. I wish there had been a cure. Thinking of you xxx

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    • Posted

      Dear giuila,

      Thank you so much for taking the time to respond, and I'm so sorry for your loss. I'm still trying to research and come to terms with it, I know everyone is individual but what can we hope for? Will it be extremely distressing? If you could give one piece of advice what would it be?

      Kindest wishes

      Corina

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    • Posted

      Hi there,

      No it wasn't distressing at all, apart from seeing him uncomfortable at times. I hated seeing my father so uncomfortable as he couldn't breathe very well at all. The only way to help him was to use medication which made him more relaxed so the panic of not being able to take in more oxygen wasn't too distressing. This was really at the end of the illness.

      He was still the same sharp witted highly intelligent Individual as he'd always been, it's just IPF completely prevents you from being very mobile.

      My advice to you is keep smiling. Try and make your Mother as comfortable as she can be and spend time together. I had a week with Dad when he finally got diagnosed and I felt that I had told him everything i needed too but I still wish I had done more or asked him more.

      Family is everything and I'm sure you'll have a supportive team of doctors as well.

      Best Regards

      Giulia

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  • Posted

    Hi Corinaday

    Well; having read comments from those you have already received a reply from - whether you get the drug will depend on firstly what the scan says! Secondly which country you live; and thirdly your Mother's symptoms - she must have symptoms or she would not have had a diagnosis of IPF?

    If you answer me these questions I will gladly give you the benefit of my knowledge and experience.

    Kind regards

    Jazztrain

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    • Posted

      Hi Jazztrain,

      Thank you very much for your reply. In answer to your comments, we live in London, the symptons have been a constant cough for months now, some pain in the back / side area. We have to date only visited our GP after two x-rays which she told us confirms the suspicion of IPF. We are really not sure of what lies ahead so any further comments would be greatly received.

      Many thanks

      Corina

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    • Posted

      Hi corinaday

      Your GP will have to refer you to a Thoracic Chest specialist when your mother will have to have breathing tests done and they will work out if your mother is bad enough to take the medication of 'Pirfenidone'. This medication costs in excess of £500 per week and CANNOT be prescribed by a GP. It has to be via a specialist centre. I go to Papworth Hospital in cambridgeshire and a return trip of over 130 miles from home every 3 months. 

      There is no cure for an IPF usually with an average life expectancy of FIVE years BUT it is for a specialist to examine your mother and not for her GP to try and play God!

      If the consultant approves the use of Pirfenidone your mother will have to have Blood Tests taken every month for the first six months then three monthly. She will become sensetive to strong sunlight and probably have to wear a strong suntan lotion every day she goes out to exposed areas of her skin like her face and hands. (I use Malibu Kids 50 SPF Lotion) and her alcohol level will be restricted to just 13 units per week.

      The medication cannot be collected from a Pharmacy, it is delivered to her by a company called Polar Speed and the medication has to be signed for by her AND is delivered every eight weeks.

      So my advice is to see this GP again and ask her what her plans are for your mother and whether she intends to refer her to a Thoracic Chest Physician - IF SHE SAYS NOT - Bang the desk and demands that she does!

      There is no cure for what your mother has (if an IPF) and it sounds to me it is? But at least your mother would have a minimum of 5 years reasonable life. She will eventually have to have oxygen and delivered to her home but perhaps this is a long way off.

      She needs her diagnosis confirmed and action taken through a specialist centre.

      I hope this helps both you and her and if you want to talk to me again I am always here.

      Kind regards

      Jazztrain 

       

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    • Posted

      Dear Jazztrain,

      Thank you once again for taking the time to respond. I found it very informative and obviously want to be as armed as possible for when we get our next appointment. I wish you the very best and send you my warmest thanks

      Corina

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  • Posted

    Hi corinaday

    Best of luck when the appointment comes through. Let me know what they say - and to let you know I am always here for you.

    Kind regards

    Jazztrain

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  • Posted

    Hello Corin, 

    I wish you all the best with your Mom. I was diagnosed with IPF three years ago. I had a very bad cough, very fatiqued all the time, and a lot of phlegm....I was put on oxygen 20 months ago. I found myself going down hill....Then I read Pam Grouts book Esquared and got tremoundous inspiration. Basically, the book informs us that we can affect and alter our own cellurlar structure with our beliefs. At the same time as I read this, I also discovered the wonders of Vitamin C. I started taking 3000 mg a day. I also felt that the oxygen was, although giving me more energy, it was, or seemed to be, making more mucous. So I bought a pulse/oxygen finger meter from Walmart for $50 and started monitouring myself without oxygen. Around July last year I had weaned myself off oxygen and was feeling about 70% better. In the last few weeks however my condition seems to have deteriorated after I caught the flu off a relative and I am using my oxygen more frequently if I have to walk anywhere. My cough has also recently got a lot worse....It would appear that IPF is a deteriorating state...but with the support of my lovely wife, I find life is good....I do believe that my mental state is one of the prime determinants in holding this disease at bay and may even be able to overcome it completely....Sending you love and best wishes to your Mom....Cathal

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