IPF and Emphysema ,

Feeling down and depressed,saw a consultant Monday at Papworth,more tests ,and some results.It looks like I inherited the IPF from my mum,the Emphysema which I didn't know I had is significant,whatever that means,which probably means I

can't have pirfenidone as it was only tested on solely IPF patients,now awaiting more blood test results as a previous one was positive for auto immune disease,also I have partial antiptrin deficiency.I was given nac,but can't take that at the moment,because the 32mm gallstone decided to make its presence known,been chucking back heaps of strong co -codamol GP gave me,she is having to write back to the hospital to be seen again.Papworth said I need to get the gall bladder removed ASAP ,I have lost 6 pounds in a week.So I have no real treatment ,just a prognosis of a few years ,with may be the possibility of a lung transplant,so I am feeling really sorry for myself,was lying awake at 6 this morning,tears as I reached for the pain killers.As with some of you I look really healthy,but we who have these terminal diseases are still not entitled to DLA or PIP or whatever it's labelled now,perhaps when we are literally on our death beds we will get it.I am surecwevcould all do with help to buy the extra nutritional food etc,I am 63 and my hubby who is diabetic is approaching 72 we are on pension credit,so there is very little money for any extras.Is there anybody out there who has the same conditions,how are you all coping.This new site seems to lack the tags we had before.Sorry for the moans,I think I will watch Mrs Browns Boys,laughter being the best medicine.

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18 Replies

  • It's not surprising you are feeling down & depressed Sooki! I really do send my sympathy and hope that your pain will become less severe very soon. I only have IPF and IPPFE, both of which have no cure, but at the moment I am not suffering the way you obviously are. You certainly have a lot to contend with. Lets hope Papworth can come up with an effective care plan for you as soon as poss. Stay strong. X

  • Thank you,but what is IPPFE ,are u not on pirfenidone ,how long have u had it,I was first aware of my condition in about March this year,and here we re in late July still no treatment.

  • Idiopathic Pulmonary Pleuro-parencymal Fibroelastosis! That lung disease is very rare and has only recently been classified. Last time I looked there were about 12 of us in the World. It affects the upper lobes of the lungs whereas IPF tends to show in the lower lobes.

    IPF was originalIy diagnosed for me in 2009 although scarring had first been seen on X-Ray in 2007. I asked to be referred to Royal Brompton to see if I was suitable for Pirfenidone but as my FVC is not yet below 80% (NICE guidelines limit is between 50% and 80%) it cannot be prescribed. However I am fortunate enough to be able to take NAC so musn't grumble :-)

  • Hi Mapal, can you please tell me what the NAC is that you have been prescribed. Because of my Rheumatoid Arthritis I am on Steroids and Respiratory Doctor said that would be what he would put me on anyway. I go to the Hospital every 4 weeks for an Infusion for the RA and also take Methotrexate so I have been slowly reducing the Steroids because of that.

  • Sorry for the delay in replying poppyval - had rather a bad migraine but better now. NAC is N-Acetylcysteine and is used to thin & loosen thick mucus (phlegm) in the airways. I take 1 600mg tab 3 times a day. It was originally prescribed for me by Royal Brompton but I now get it on repeat prescription via my GP. However the pharmacist has to order it as a "special order" as it is manufactured in Germany. Hope that helps.

  • Hi Mapal, thanks for that. At least NAC is something I can ask my Doctor about, never heard it before. Thanks again. x

  • Hello are you still using this?

  • Why not ring the helpline Sooki? They will be aware of the different conditions and the medications available.

  • Hello Sooki. Well old girl, you have certainly been through it haven't you. With any luck they will whip you in a bit smart to get that gallstone out. I wish I could help but in the meantime if you want some to hold your hand I'm here.

    Love and hugs from

    Bobby xxxx

  • I wish I could say something that would help. I'm so sorry you have to deal with all this.

    Hope you have the gall op very soon so they can start treating you properly. Sincerely, peeg xx

  • I just hope you take you in soon. Then, perhaps, they can sort out proper treatment for you. I wish you good luck and love. :-) :-) :-) Alison

  • I was really sad for you reading your post. I would've crying too - have a good moan on here I hope you will get some helpful advise. My husband has severe Copd so can't really help But I do rember my mother in law having nutritional cartons of juice prescribed by her doctor when she lost weight - sorry cant remember name might be worth asking doc. Hope the pain subsides and you start to feel brighter. With much love and kind thoughts tadx x

  • Thank you all for your responses ,you are so kind,it has helped me feel better,to know we are not alone .Thanks again.Will keep you all informed.

  • Hi Sooki, it seems that there are quite a few of us around with IPF. I was diagnosed 3 years ago when my lungs were checked before the Rheumatologist gave me a new treatment for my Rheumatoid Arthritis. Apparently the RA has caused mine. Was initially just in my right lung but the scarring was also found in my left lung at a CT Scan a couple of months ago. Because I was already on Steroids for my RA my Doctor at the Respiratory Clinic said he will not give me anything else at the moment as Steroids are the best just now. Sooki if you get the chance from your respiratory Nurse to go to a Pulmonary Rehab 6 week course I would advise you to go. I went on it and for someone in your condition I think it would help you a lot. Unfortunately with my RA I had to give it up because the exercises were making my RA worse. Don't worry about the Gall Bladder removal Sooki I had mine out a couple of years ago after contracting Pancreatitis. It was done by Keyhole Surgery and I was home the next day. Good luck to you and I hope they find something to sort you out soon.

  • Where does everybody get their Smileys from? I cant find them on my page.

  • They're not clickable, you have to make them - semi colon and bracket, with no space will give you a wink ;) and a colon and bracket, with no space, will give you a smile :) Gordon did a blog on it, but I can't find it on this new site :)

    Sandra x x x

  • Thanks Nowheeze I will try that. Not very good with my colons and semi colons though lol. :) ;) :) ;) Got it I think. Cheers

  • Update for all who responded to my posts,had an emergency op last week,after being sent home first from A and E on morphine,gall bladder out,surgeon came and showed me photos of the awful mess it was.Home now and on the mend,so can now concentrate on the IPF /emphysema ,oh and I have been told I have a hiatus hernia,hey ho ,on we go ,smile and get on with life,maybe get away in our caravan soon,nurse still coming in to dress wounds,but feeling really good at the moment.Thank you all.

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