1. Community
  2. Chest and lungs
  3. Pulmonary Fibrosis

BEGGING YOU FOR YOUR SUPPORT

Posted , 11 users are following.

Abfab
Abfab

Surely there are more people out there with PF, or family members that are having to cope with this awful desease. Please please I beg you start talking to us we all need each others support, I need some sort of support.

3 likes, 13 replies

13 Replies

  • neville93106
    neville93106 Abfab

    Posted

    A most important thing to know about IPF is that for the first time this year there are two drugs that can hold it back.  Before this year there was nothing.  In May there was a big set if articles in the N ew England Journal of Medicine about a drug called Pirfenidone, which is marketed I. Europe under the name ESBRIET.   The NICE committee has approved it for use.  I have been taking it since M ay and it seems very effective, although it will not make the disease disappear.  But it makes life very bearable and the side effects in my case are minimal.  Ask your doctor to give you access to it.

    best wishes,

    Neville

  • malcolmw
    malcolmw Abfab

    Posted

    There are plenty of support groups out there. There are a number of groups on Facebook, and one on Yahoo. There are also a number of charities. I will start a separate discussion for those.
  • Remo3
    Remo3 Abfab

    Posted

    Hello, Abfab. I have already posted my testimony in this forum and I don't know if you've seen it: my mother was diagnosed with IPF in 2012. She was given a very low dose of cortisone (5mg) but it's been stopped now. In March '12 her gasometry went down to 57% (= 89 % oxygen saturation rate). The CAT-scan showed "honeycombing and thickening". She then started to take every day:

    - 7500 IU vitamin D,

    - 960,000 IU serrapeptase, an enzyme that cleans scar tissues.

    - 4 grams curcumin + peperin, a natural anti-inflammatory.

    The  October 2014 CAT-scan, 6 months into this "treatment", shows things have improved. Her gasometry has gone up to 77% (= 95% saturation rate) with "fewer ground-glass opacities [...], no increasing of reticulation [...] and no honeycombing.")! Her next scan is due next year.

    Her pneumologist told her vitamin D was excellent but confessed he had never heard of serrapeptase which, I think, has done the entire job. So don't lose hope. I'm not saying it will work miracles for you but it has shown some effect on my mother, so why not give it a try?

  • wayne63
    wayne63 Abfab

    Posted

    ask your dr about a pf rehab courses in your earier it will help you so much and deals with all the changes that will happen
  • kaitlinbkelly
    kaitlinbkelly Abfab

    Posted

    Hi Abfab,

    I came across this forum this evening and saw your post. I am sad because you posted in the very day I lost my father to Idiopathic Pulmonary Fibrosis. I am 26, he was 87. I had an older father, but you would have never know until last year when this horrible disease started to take him from me. Let me tell you, he was more of a father then most kids have. He was my best friend. He was diagnosed about a year ago, with this disease, out of nowhere. By this past April he was on an oxygen tank full time.

    I still am coping with this and trying to make sense of this turn of events that took place last month. Around the 1st of October he got sick, and within 3 days was at the hospital, within 4 he was in the intensive care unit, and within 6 he was put on a ventilator. In the end his kidneys failed while on the ventilator from all of the fluids and medications. Two days after his death, the FDA, here in the states made pirfenidone available, (a drug he prayed to be made available so he could try it). 

    Right now my mother and I are trying to pick up the prices of what is left of our lives. 

    I guess the reason I responded to your post is just to share my story. I miss him everyday. There was so much more he had left to teach me, to show me, to inspire me to do. I wouldn't miss this disease on anyone. 

    • giuila
      giuila kaitlinbkelly

      Posted

      I've just read your post and understand your devastation. I lost my Father to this disease suddenly in Feb 2014. He had been feeling out of breath for a few years but thought it was a weakness in his heart. After many tests and years he was diagnosed with IPF. He suddenly became really out of breath one morning and called his doctor who kept him in hospital and gave him an intravenous steroid for 3 days. This would apparently make him feel better and he can go home. But the IPF was getting worse. He only just had the diagnosis. After 3 days he didn't get better, only worse and then the doctor said there was nothing more they could do. So was transferred to a hospice and exactly a week later he died. I am still obviously devastated. He was just about to turn 65 and start enjoying his retirement.

      I am now worried this is hereditary, I've been having some lung problems recently. My docs think it is stress but have agreed to do more tests as my bp is really high, pulse too low and heart irregular...

      I do understand your pain. It's very very sad!!

  • pjayne549
    pjayne549 Abfab

    Posted

    My husband is 54 and has been diagnosed with IPF - I am also begging for support and more information.  I have no idea what this means.  He was told that this would take his life, but when? How? no one can answer these questions. Surely if there are drugs that slow this down then he has as much chance of death from something else as I do!  it is all very confusing and worrying.  I just want to know what to do and how to help.  Currently I see no great difference. He is under the hospital (in france where we live) and taking Esibret.  He goes every 3 months for tests.  What the hell does it all mean!!! ???
    • debbie1402
      debbie1402 pjayne549

      Posted

      Hi, I am in exactly the same position as yourself, my husband is also 54 and after various scans/tests from having chest pains back in 2007 he was only officially diagnosed with IPF following a lung biopy in Jan 2015 and his shortness of breath is more noticeable.

      When we met with the physician in Feb to confirm this and he suggested my husband was referred for a single lung transplant assessment because of his age. As you can imagine I was devastated! We have that appointment tomorrow so will hopefully fund out more as we both feel left in the dark not knowing how bad it is or anything. We also have an appointment to dicuss Perfenidone medication as we are told this is an anti-fibrotic drug thay should hopefully stop it spreading to the other cells.

      I am trying to find other forums and support like you as we both feel really confused by it all and we also want to hear from others that have had a lung transplant.

      Sorry not much help but I'm here for support if you need it as I too need someone to discuss this awful disease with.

      Take care.

      Debbie

    • malcolmw
      malcolmw debbie1402

      Posted

      Debbie, there are many other forums nowadays. I have been a member of a lot of them, since 2009. There is an email group on Yahoo, and a number of facebook groups. And please don't take any notice of the doom and gloom that is available on the net. I as originally diagnosed in 2006 and continue to confound the statisticians. I keep as fit as I can with lots of walking, ballroom dancing, a weekly exercise class, and tenpin bowling. It can really help as well if you can actually meet with other patients at events or at support groups which are starting up all over the country.
  • pjayne549
    pjayne549 Abfab

    Posted

    BTW what is your story Ab fab - how you are you associated with this disease?

     

  • giuila
    giuila Abfab

    Posted

    Hi

    I've just joined this group. Having had my father diagnosed with IPF in the summer of 2013. Sadly he died from this disease in Feb 2014 aged 64.

    I don't know if I can help other than I know how awful this disease is.

  • john15065
    john15065 Abfab

    Posted

    Hi Abfab. I was diagnosed with IPF 2 years ago but, thinking back I had the symptoms almost 4 years ago.  It's an awfully dabilitating disease but firstly try and be positive and as active as you're able to be. Activity is a good thing despite the feeling of not wanting to be breathless.

    I'm on ambulatory oxygen which enables me to mow the lawn and even cut the hedges in short doses. Maybe you could apply for this.?

    I've been accepted for treatment with a new drug which has been approved by NICE for limited distribution at present. It's called Nintedanib. I just hope I don't suffer too many side effects.I should start it in about 5 weeks and whilst it won't cure the IPF it may hold it back.

    Keep smiling!!

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.