Pulmonary fibrosis

Good morning to you all. I am posting for the first time, hope I don't mess up or sound silly. My husband was diagnosed in 2006 with pulmonary fibrosis and although we regularly attend the royal brompton for his care I feel very isolated and uninformed. Really feel as though we've just been left to guess our way through this terrible nightmare. It breaks my heart to see my lovely strong man just going from day to day living on oxygen and avoiding people in case they have a cold etc. Well enough self pity, just want to say a big Thankyou for letting me into the fold and its good to hear all your tips. Many thanks and happy St Patrick's day x

28 Replies

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  • Hi Issma, you're very welcome here.

    Sorry to hear about your husband.

    I'm afraid I don't know anything about Pulmonary Fibrosis but there are members with this condition who can answer any questions you have.

    Of course you won't mess up, just chat to us as if we're sitting next you.

    Take care ūüĆĻ

  • Thankyou jessy11 x

  • Morning Issma - Welcome to the site! I care for my husband who suffers with severe COPD but I can acquaint with all the fears. I have found this site so useful especially when he has been very ill. Lots of good advise and kindness. Lots of love to your and your husband xxx

  • Thankyou tadaw x I feel so helpless when he's really poorly seeing how others cope will help I'm sure x

  • Welcome Issma and you need never feel isolated again. Xxx

  • Hello Isma, my husband was diagnosed with Idiopathic Pulmonary Fibrosis 13 months ago and it is a horrible thing to see someone you love affected in this way. The diagnosis was later changed to NSIP, but by that time we had joined the local IPF support group and kept going. They have monthly meetings and we've been to some very good talks as well as social outings. Although we've not managed to meetings during the winter, we get a catch up email, so don't feel too out of touch. I've found it helpful to speak to other spouses/partners and it certainly helped me feel a bit more 'normal' about the situation, as well as finding out what's available in our area.

    Support groups are listed on the BLF website, so if you do have one in your area I'd definitely recommend getting in touch with them.

  • Thank you so much for your reply, I'll definitely look into a local ipf support group, I can honestly say I had no idea about such groups. Although I don't think Hubby would get involved as even after 10 years and failing health he is still very private about his problem. I on the other hand feel I need an outlet and some support. Thanks again for taking the time to reply and best wishes to you and your husband.

  • Hi Issma, i m very sorry to hear about it and i understand u very well. My husband also was diagnosed fibrosis about 1,5 years ago. I m also very scared and feeling lost.¬†

  • Hi Mendy, it's horrible isn't it. I try not to let Hubby see how I feel and I really don't think he sees how hard it is for us as a family to see him how he is. My son's and their wives are my backbone, although I try and put a rosier spin on things for their sake. I feel for you. We go to the brompton every 6 months and to our local hospital in between but I don't know about you but I feel once you're out of the hospital door you just have to get on with it. My doctor doesn't seem interested, is yours much help. Some people get loads of help and support from their doc,so give them a try maybe they have a respiratory nurse. ( mine doesn't). Anyway Mendy if I can help at all, or you just want to let off steam I'm here.

  • Hi dear Issma, thank you so much for being helpful. I am not english, so maybe i dont use correct words sometimes, sorry about that. You are right about doctors. But i dont leave the doctors room untill he doesnt answer my questions, of course i do understand they dont like explaining all the details to people who are far from medicine, not to waste their time.

    I do feel alone and lost, but i dont show it to my husband. I ll try to do everything i can. We need to be strong! I know we can!

  • Yes Mendy we can do this. I find that I think I have all the info when I leave the hospital but when things crop up I find it hard to get advice. That's why I joined this site. Everyone one seems so friendly.

  • Issma whats your husbands PF caused by? Did they do you a biopsy?

  • They don't know what caused it. He had a bronchoscopy and a biopsy. He was always a really fit man, played all sports did lots of manual work on cars our home etc. Could swim like a fish walked miles every day and suddenly realised he was getting out of puff. Put it down to getting older but it seemed too sudden and serious so we went to the doctor and got the diagnoses. Shocked really doesn't cover it eh? The rest is history.

  • Issma, really feel sorry about your husband. He was fitt all his life and now he cant do most of the things.¬†

    So does your husband have IPF or just PF caused my someth u dont know? With PF people can live longer( i hope) if they are on treatments. I dont care even if my husband ll not be back to a normal active life like before, i will look after him all the time. I just want him to live!!!

  • Oh Mendy I so get where you're coming from. He has ipf, managed guite well for the first few years. He fought giving up work but of course he had to. He has been medically retired now for 5 years and now has to be on oxygen 24/7. Yes it was such a shock because he was such a fit man. But he's still with me and I'm grateful he is. He's my life. ¬†Is your hubby at home full time now too?

  • Issma, my husband still works. His fybrosis is not IPF, its his own immune system works wrong.

  • Wow that's mad having to fly over. Hope all goes for you both. Our next app is July. Hubby has refused to discuss a lung transplant although they have tried to talk him round. Just has to take its course now. Good luck again. Good that your hubby can still work, that's encouraging x

  • Issma, why doesnt your hubby want lung transplant??? Its a chance to live and it would be excellent if he uses that chance. Not many people are offered the transplant but they wish to have that chance. I hope he will change his mind and agree while he is young enough for it.

  • Unfortunately Mendy that boat has sailed, as they say. His health is too bad now to go through a big operation. Silly eh? But his choice. If I'd had my way he would have been on the list from day one.x

  • I m sooo sorry to hear it((((¬†

  • G'day Mendy & Issma

    I have been reading your posts with interest.

    I am a carer/husband for my wife ,Susan, who was diagnosed with IPF almost 2 years ago. We are on the Tx waiting list at the Alfred hospital in Melbourne Australia.

    Issma, I am so sad that your hubby cannot have a Tx, even being on the list is pretty hard, can't leave home without the cell phone, no holidays, visits to the rehab group twice weekly, Hospital and Dr's visits weekly and waiting for "That" call. And there is no guarantee that a donor will become available in time.

    At least we all have our other "Half" today and that is a gift. I cannot look at the future,so I concentrate on today only.

    Susan can still maintain her daily requirements,albeit on o2 during the "out of bed times" but does not require it upon retiring.

    Do either of your husbands suffer with the coughing attacks?

    Will (Australia)

  • Hi BurraboyEasty, wow that's a mouthful lol. So sorry to hear about your wife, it's a hard thing to deal with eh? But sounds like you're doing a great job. M Hubby refused right from the start to consider a transplant. It was very frustrating at first as I felt he should try everything offered, but hey it's his decision. He has really bad coughing fits that sometimes ends in him vomiting. As you said live day by day. We still laugh a lot and enjoy seeing our boys and their families. They are good kids and visit often. Have to stop and think sometimes how they must be feeling, seeing their Dad as he is. Wish you the best and hope you get that call soon .

  • Hi BurraboyEasty, sorry for late reply, just seen your post. I read your story and i m very sorry that it happened to Susan. You remind me myself, how much you love and care of your partner and afraid to lose her. I wish Susan ll get that call very soon. And after a while you ll both forget about IPF , and continue a happy life together.

    My husband does have caughing atacks and always did, since i first met him, he said he got asthma( which was diagnosed by his GP, and which was wrong). And he always was allergic to flowers, birds. Especially every spring. That i think was the start of his disease.

  • Thanks for your reply Mendy

    As I say quite regularly  None of us wants to be on this rocky road,but here we are. I guess what really matters is how we adapt,accept our lot and deal with it a best we can.

    Staying positive is the goal, but at times it is very difficult,especially when one of these coughing fits occur.

    No matter what the outcome is for us, I do not think I will ever forget IPF or the "Beast" as I call it.

    I spend a fair amount of time each day researching and learning about it and I am becoming more alarmed to think the cause could be genetic, Just like prostrate cancer is in men.

    How many in past generations have passed from IPF and have been misdiagnosed.

    From the numerous testimonials I have read the common denominator seems to be ....  My brother, my sister, my mother ,uncle,father, have died from this disease. There is a university in the USA calling for blood samples  from family members of IPF sufferers, maybe some good will come of this, but how to fix the problem?,unfortunately IPF seems to be at the bottom of the money barrel with respect to research 

    best wishes


  • Thanks Issma,

     I have come across many who opted for "Quality of life" as opposed to Tx. In reality it is their decision, which path to travel on,but for the family it must be extremely difficult accepting this.

    Here in Australia we are fortunate to have one of the world's leading Lung hospitals, with 81 Tx's in 2015, only one soul did not make it. Already this year over 25 have had a new lease of life.

    I have read of some botched transplants in the USA, scarey to say the least, so you can see why some souls do not want to take the chance.

    Coughing fits are hard to take ,watching your loved one gasping for air and not knowing if they will come out of it. The one thing we have learned about this disease is that what works for one may be useless for another.

    This is a rocky road none of us sufferers or carers want to be on,but this is the hand we have been dealt. I guess all we can do is pray,hope for a miracle and to be there for our loved one.

    GOD Bless


  • Hi Issma,


    My father has been diagnosed with IPF last month. I am from India, tried to find a blog which deals with people fighting IPF, stumbled into this one.

    Sorry for the pain which your husband is going through. Hope better days are ahead.

    Currently my dad is taking Pirfenidone drug along with 16-18 hours oxygen support. I wanted to ask what drug has the Doctor recommended to your husband.

    Also have you come across this link pivotalhealth.info/new_pulm.... They claim to cure it. I am looking for more reviews on this. not sure if their claim is correct.

    Take Care!!!

  • Hi Adebrat, Hubby is on prednisolone and azathioprine,NAC, calcium tabs, alendronic acid and a few other meds for other ailments that have cropped up along the way.he is on oxygen 24/7 now. Hope this helps, best wishes to you and your family

  • Thanks Issma.

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