JMJ ~ Husband has Ideopathic Pulmonary Fibrosis the specialist told us he has less than a year.

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Are there any support groups that anyone can tell me about. I have been going to a family Therapist, but now I don't have any insurance. I am a mess. I've gained 80 lbs since my husbands diagnosis last April I don't sleep and just want to know that I'm not alone. My husband never smoked or drank. Always very healthy and athletic, now he has lost all muscle mass and he is only 66 years old. I'm 64.

Thank you

Barbara

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13 Replies

  • Posted

    Check Griffols biotec company, they have good treatments for lung problems that sometimes doctor they are not even aware of..
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  • Posted

    Hi Barbara,

    It's been a long while since you posted but my grandfather has PF. We were told he has 9 months and it's going on two years now and he's quite well so don't give up hope smile Hope you are keeping well.

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  • Posted

    I was diagnosed with IPF about 6 months ago.  In May a new drug, Pirfenidone, which is marketed as Esbriet, became available.  It has stopped the progress of my disease almost completely.  NICE has approved it, so ask your doctor to let you try it.

    good luck.

    neville

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  • Posted

    Hi Barbara

    I don't know what treatment your husband is having BUT I was diagnosed with a Idiopathic Pulmonary Fibrosis over 12 months ago and have been to Ipswich Hospital and had Lung Function Tests done by Dr. Rabbani Chest Physician and a six minute walking test before being referred to Dr. Helen Parfrey at Papworth Hospital. My CT scan showed I had a sliding Hiatus Hernia for which I have been prescribed 'Lansoprazole' 15mg daily.

    I go back to Papworth again in February when they want me to start Pirfenidone which will take away my immune system and have to wear Sun Block 50 every time I go out. However, I have asked if they are prepared to do another CT scan to see whether the 'Lansoprazole' is doing any good?

    I have not smoked for 35 years but I do like a drink and until I start the Pirfenidone I shall continue to do so! What I have been referred for is 'Pulmonary Rehabilitation' and I start a course next week, by the end of which my muscles should be stronger and breathing easier. I am 70 years of age - so I don't see why your husband can't have the same treatment as me.

    If your husband has been told he has less than 12 months then go to your GP and when he has 6 months or less to live, he can get Terminally Ill Benefit which lasts for three years as nobody can tell the exact date when someone is going to die.

    Hope this helps but if you need to contact me then please do!

    Kind regards

    scooby-doo107

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  • Posted

    Hi Barbara

    I just read the reply sent by Neville regarding 'Pirfenidone'?

    It can only be prescribed by Papworth Hospital as the Heart and Lung Centre. It means going to Papworth once a month for the first six months for Blood Tests then these will be done every three months. This is necessary to see if there is any reaction with the Liver?

    Kind regards

    scooby-doo107

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  • Posted

    I would push for Pirfenidone.  I don't see why it takes so long to get it going.  Here in France my local hospital chest specialist was able to prescribe it at once after he had diagnosed IPF on the basis of an MRI scan and auscultation (listening to my chest).  I too have had to be careful about sunlight, but I live in the French Riviera , and even so PF 30 and staying indoors during the brightest summer sun has caused me no trouble.  I too have been having blood tests every two weeks for liver function and for glycemic because I am also on steroids and they can provoke diabetes.  But I do not have to travel to a particular hospital for blood tests.  They are done locally in village or town clinics.  Can't they do that in the UK?  I have now been on oirfenidone since May, and apart from constantly feeling slightly hung over and rather tired,  I have had no intolerable side effects.  I feel better, my cough has gone, my breathing is easier, and during the summer I swam 300 metres every day late in afternoon when te sun was going down.  Now I walk between 1 and 2 kilometers a day.  I think Pirfenidone really seems to hold,back the disease.   

    Good luck.

    Neville

    Good luck.

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    • Posted

      Hi neville

      I have had lung tests

      PVC pred 4.19 act. 2.19 52%

      PVC1 pred. 3.24 act 1.92 59%

      DLCO pred. 9.37 act. 4.31 46%

      My ecocardiogram results was not much use as according to technicians notes she could not get some readings because of my build.

      I was more than upset with the specialist who did not seem to want to explain the outcome of the the tests, she said was going to refer me to another hospital to discuss stetiods. I spent 2 weeks chasing for her notes to be sent to my doctor. While I was waiting I caught a chest infection and my ankles continued to swell, my coughing, nose dripping, phlegm etc was terrible. My doctor agreed to give me antibiotics and put me on water tables whilst waiting for these notes.

      The notes finally arrived I requested a copy and realised that the specialist reported to my doctor that she would be referring me for piriferdone but thought it unlikely I would be accepted because of my diabetes 2 and underlining liver issue. She suggested I could be given steroids but not which one. I have spent a lot if time on the Internet which has helped md understand the above figures. I don't think it is too much to ask for specialist to explain tests and options with the various medications.

      I have completed my course of antibiotics near 2 weeks, phlegm is clearer but still there frothy, sinus still booked and I am hoarse. I am due to see my doctor this week to ask about something to unblock my sinuses and if there us anything available to ease this coughing that seems to bd getting worse. 1 want to ask about nac N-acetyl-cysteine. Do you are anyone have any thoughts, I would love to hear. My notes doesn't say anything about what stage I am at but I think I might be mild to moderate but I also know I feel 10 times worse than 6 months ago. I don't drink or smoke (I smoked on and off for 9 years, 25 years ago)

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  • Posted

    Hi Barbara

    I just want to add some extra positives to those the replies already given on IPF.

    I'm 58 and over the last 2yrs have lost over half of both my lungs function and in the year before that 20% so what I have left prompted my consultant to immediately prescribe perfenidone as soon as it was released treat my IPF which was finally diagnosed Dec 2013 at the Royal Brompton London; this was in preference to them previously deciding other procedures like Biopsy and steroids would be done.

    This June 2014 was told my outlook at current rate of decline would be 2yrs. It's not too difficult to realise with repeated CT scans to track the disease progression.

    Since being prescribed Pirfenidone by the Royal Brompton, my symptoms have drastically reduced evident by a vast reduction in jinternal bleeding from lungs. The main bit of advice though is to remain with one consultant to ensure progression is tracked and to keep up the essential monthly blood tests on liver function instructed thro your GP from consultant.

    The side effects are a bit scary but they are blanket warnings and each effect typically applies to 1 in 10 - the sun screening I have done some moderate testing of my own with factor 30 sunscreen.

    One thing to remember though, Pirfenidone is not a cute, so for me survival depends on a double lung transplant.

    Any other questions I'd be happy to answer.

    Regards

    Kevin 

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  • Posted

    I am in the identical situation. My fiance was diagnoised in April 2014. We have many questions and would welcome information on support groups.

    Thank you

    Sonja

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  • Posted

    Barbara

    I was diagnosed with IPF in April 2012; I have had 3 CT Scans; numerous Lung Function and WalkingTests done at both Ipswich and Papworth hospitals.

    The important thing to remember is give up Smoking AND keep away from secondhand cigeratte smoke.

    I was put on a COPD exercise course to help me recover and increase breathing techniques but was told later this was not good for IPF sufferers?

    Have been assessed for oxygen at home for when I go out but don't use it at present as I don't feel bad enough for it. When I feel I am I will use it?

    I believe we all know our own bodies and what is good and what is bad for us!

    Papworth want me to go on Pirifendone but to date have refused it - I go back to papworth anain on 27th February 2015 but the important thing is not to get depressed about the situation.

    We all have an unknown date to expire BUT the secret is to do as much as one can for this moment in time. Of course we are all anxious about the future and many of us do not ask questions with Consultants - I do!

    At 70 years of age - I will use the Pirifendone when it is prescribed AND when I feel I need it - this will mean for me I have to give up all alcohol and wear sun block 50 every day. To date and personally I don't feel I am ready to do this - but when push comes to shove I will AS all life is sweet

    If you want to continue to talk to me then please do.

    Kind regards

    Jazztrain

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  • Posted

    Just a comment on Jazztrain's message.  He or she has of course every right to their opinion....BUT ....   We do not intuitively know how the subtle mechanisms of our own bodies work, or there would be no doctors.  In many cases, including Pirfenidone , the sooner you start on the medication the better it works.  If you delay you risk the condition becoming so bad that the medication will not work.  In my case I started early and it is holding the disease in check.  The odd glass of alcohol such as wine or beer seems to cause no trouble, wearing a hat with a broad brim, long slleeved shirts , and PF30 sunblock seems to protect me from bad side effects.  In my opinion DO NOT DELAY unless you are willing just to give in.  I agree about keeping away from smokers, bonfires, smoke from chimneys blowing into the lounge, and so on.

    I am currently trying a nonstandard medication which has not been properly evaluated, and if it seems to help I will put up a message.  Normally, being a scientist, I don't take homeopathic, naturopathic or other nonstandard medications unless I can find some evidence that they work.  If your specialist advises a medication that has been tested in clinical trials, like Pirfenidone, I think it is very unwise not to take it as early as possible.   (For example, the most common cause of people dying early if cancer is that it is not diagnosed until very late.  The same applies to most diseases.)

    good luck.

    neville

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  • Posted

    Hi Neville

    I don't know why you seem to get so angry as I was only trying to exchange views with you over this condition of IPF. I was diagnosed three years ago and still going strong? I have A.O.T. (Ambulatory Oxygen Therapy) in bottles of 2.5 hours but not used it yet! Just keeping it till I really need it!

    Papworth prescribed me Ventolin which i take mornings on getting out of bed and night-time when I go to bed. I don't have a car and have to rely on public transport but when push comes to shove I will use the Oxygen!

    I will soon be 71 and having worked in the NHS for 23 years I have learnt to question everything a health professional tells me if i don't agree with what they are telling me.

    For me Pirifendone will only become an option when all other options run out - I want quality of life - not quantity! I am on Lansoprazole 15mg

    for an Hiatus Hernia.

    Currently I drink 3 cans of Special Brew every day and sometimes good quality Whisky too. I shall be going to Scotland next month and have a tot or four of Laguvelin 16 year old Whisky at £67 a bottle - lovely!

    I cannot live the life of a cabbage and have refused to go to Papworth 132 mile return trip just for Blood Tests; my consultant says I can have these at my GP surgery and they would send the drugs to me!

    Please remember that no-one will die before their time comes and it is important to keep a good quality of life but not to over extend yourself!

    My father died at 70 so I have exceeded him but plan to go to 89 - that's my goal!

    Just keep smiling - have positive thoughts and hope for the best!

    Jazztrain

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  • Posted

    Hi Barbara

    You will see I have messaged you a few times now; however, I have been on Pirfenidone for some 9 months now and i can honestly say it has changed my life. I have done what the doctors told me and reduced my alcohol intake to just 13 units each week except when i go on holiday and allowed to increase it moderately as long as I return to the agreed amount when my holiday ends. I have also lost 10 kg in weight during this time.

    I feel much better and can do more, much more and it is thanks to the Pirfenidone - so don't delay ask your hospital consultant if you can take this drug - it will change your husband's life!

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