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I know that this is a terrible disease and that there is so little known but I do know that a positive attitude and a desire to fight it helps.

I know that people feel so lonely with this and depression is a side effect.

We need to talk; to post.

I got down graded to NSIP and have to be careful as CFA is a possibility but I was helped by other forums, five - six years ago. (Just found this one)

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  • Posted

    Good Afternoon. Back at work, can have the dog with me for a couple of days then he goes into kennels on aday care basis.

    I developed suspected CFA in 2002 and had ten months off work. As I said previously I was down graded to NSIP snd I attempted to go back to teaching. Was not physically up to the job and had to retire but they gave me a sit down job in the office. I took a pay cut (£10,000) but my life is now my own without the stress of the classroom.

    My GP knew very little about CFA and I took a lot of information from the internet into them. I go to hospital very year to see someone, at the moment its the respiratory nurse and we have a chat and do peak flow. My lung function is getting better and I am up to 66% normal.

    I have to avoid certain chemicals, the reprographics room makes my chest tight and the stuff they do the floors with here, when they are applying it. Will drop in for a chat every now and then and perhaps post a few jokes and comments.

    Take care everyone. :D

  • Posted

    I have just read your very interesting post and it has done a lot to cheer me up. I hope you will continue to post your experiences. I have Idiopathic Pulmonary Fibrosis also known as alveolitis. I thought it was me reacting badly to stress because initially - for two years GP could find no significant reason for my severe and increasing breathlessness. Now I have diagnosis but am told nothing much is known about the condition they do not know specifically why some folk get it or what will help it!!!! I am currently on oxygen therapy 24/7 which has helped considerably and makes me feel a lot better. Steroids have been brought dowqn to lower level now and immunosuppressants abandonned as they really did not agree with me. I have found like you that certain chemicals have detrimental affect when I am near them. Thought it was my imagination that some glossy brochures and mags seem to start me coughing when I am tryiong to read them. Hope to hear from others with info about this awful condition being rare it is so difficult to compare notes with anyone.


  • Posted

    I believe that a positive attitude helps considerably. Got that from my father who had non Hodkins Lymphoma and after a major operation was told he would never work again but he said nuts to that and went back to working in the iron and steel industry.

    Hobbling around at the moment on a stick. Had a bad bout of coughing in April and had a groin strain as a result. That got better but happened again in June. Walked around far too much in Scotland and then slipped on a polished floor at work. On major pain killers. Told bed rest and icepacks. Who will wash up, pay the rent, hoover etc...

    Chest is doing fine at the moment and I go to see the respiratory nurse next week. My lung capacity is getting bigger and will continue to do so. I will never run a marathon (Walking hundreds of yards is difficult at the moment but that's another matter) Dog is coughing more than me on a morning (congestive heart failure)

    Something to enjoy

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  • Posted

    Hi Jeanou,

    thanks for posting your current situation.

    Are you on medication?

    I have never been told what percentage my lung capacity is. I have had three lung function tests so far, over about 18 months, and all I have been told is that there has not been much change.

    I am a very positive person - glass is always half full. I do believe in trying to find a solution to problems and try to keep record of what seems to make me better or worse. I still try to do as much gardening as possible even though it is a bit complicated organising the oxygen and having to be attached to the machine. The oxygen service chap is very helpful and I have a very long pipe which enables me to get someway into the garden. Obviously I can only do light weeding and planting and usually function from a sitting on the ground position or a very low stool.

    I have some bad days when any exertion has me totally out of breath. Have not worked out why some days are worse than others. I think sometimes it is because I am tired from doing too much or sleeping badly. I have a small oxymeter which helps me monitor how I am doing. The main reason is to ensure I don't push myself too far when oxygen levels have dropped into the low 70's. At rest, when connected to the oxygen, my sats are quite respectable 96 over 64 but as soon as I move about, even with oxygen, it drops to low 8o's and with any exertion ie talking and walking down to 70's. :oops:

    I have some coughing. Always feel better after a good cough. Sniffing karvol drops on a tissue seems to help keep airways clear and sucking cough sweet of some sort. Energy levels mostly mental energy has improved greatly with homoeopathic treatment. Breathing has been helped by breathing lessons from a yoga practioner.

    JA smile

  • Posted

    I too did yoga breathing and am a big fan of benylyn. I had a whole series of inhalers the last ones being orange and containing steroids.

    I think that you gardening is wonderful. Mine needs a local guide and a machete at the moment.

    I think I have been left with asthma. I used to get wheezy when it got damp but it hasn't happened as much this summer.

    When I was ill I went on holiday and my sister kindly borrowed a wheel chair. However it was a self propelled chair so had no arms and my families solution to kerbs and other obstacles was to bump it up them and when it went along the edge of pavements they really had no idea how wide it was, so in the interests of my own safety I used to get out and walk.

    Hospital tomorrow, worst is when they weigh me and tut. Oh well will let you know how I get on. Am still asking questions and sometimes get answers. Take care.

  • Posted

    Really good news the hospital are discharging me into the care of my GP so I have to see him for my check up next year. My Lung function tests were the best i have ever done. I have had to swear that I will go and see him if there is a problem.

    Over the moon with this. Have to wait for a letter from the consultant or one of his minions more like and its a done deal.

  • Posted

    Well done Jeanou, that is great news. You must keep your promise to see him if you suspect a problem but otherwise that is so good. I bet it's all down to your wonderful positive attitude.


  • Posted

    What exelent news Jeanou. What do you think was the most successful aspect of your treatment?

    I have just posted a long post under Malcom's thread of Pulmonary Fibrosis and exercise. But wanted to reply to you regarding 1. gardening and 2. the wheelchair.

    Gardening has always been a big part of my life and I cannot envisage a life without a garden even if I did need a machete and a compass to get through it. I have a husband who is not a natural gardener and who does not like being 'instructed' by me on what to do or not to do, but slowly we are making some progress. I cannot bend over without getting out of breath, so I slither along on a mat pulling my oxygen behind me and a bucket containing the tools I might need. Husband has to mow lawns and collect barrows full of weeds. We like to grow our own veg and husband is getting a lot better at doing this and I am pleased we have some garden produce to show for our efforts this year. We have very large hilly garden as we live in the countryside and lots of 'projects' which we were anticipating completing in our retirement. We are determined to continue with these but it is hard going. A lottery win would help 'cos then we could \"get a man in\"!

    I have resisted persuasion to get a wheelchair. Although I did resort to one at a hospital appointment last January when I was suffering from a chest infection and the corridors appeared to go on for miles and miles. We visited our eldest daughter last week and the three of us went to Ely cathedral. I was having a bad day, feeling very weak and breathless and resorted to being taken round the cathedral in a wheelchair. This time daughter was in charge and as she has nursing background and lots of wheelchair experience, I had every confidence in her ability. The upside was that I had reserved my energy and was able to get to the Stained Glass museum which was my reason for going to Ely. We found, when we arrived, that it was on the first floor gallery up a stone spiral staircase of 40 steps. It took ages for me to negotiate the steps, I had to get breath back every five steps but was well worth it. Daughter wheel-chaired me back to the car. Good exercise for her as she had to take the wheel chair all the way back to the cathedral again.

    Our daughter had been nagging me to get a small shopper rider, electric buggy thing but I had resisted because I did not want to get lazy, as I know just how important it is to exercise. But the day after the Ely trip, a one day sale in Hatfield Galleria and a little ride around the mall soon had me parting with my money. I hope it is a wise move and will enable me to get out more and give a great deal more freedom and choice than a wheelchair. I have been assured the model I have chosen will take me around the garden so surprisingly as it may seem, I think it will increase my exercise opportunities



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