cfa just seen the chest specialist today

Hi there,

I don't really know much about CFA, i didn't do much to research it as it was a very worrying/stressful time when my dad was ill, but just to give hope please read my thread 'My dad had CFA and had a lung translant'.

Its very rare for a doctor to recommend this, as the survival rates vary, but it has been very successful for my dad.

Best wishes, Alex xx

hello it sounds like its nearing a serious stage more serious and one goes on oxyegen 24/7 i have been like this for last 14 months not nice but still here and fightingall the best jim

Hello littlesis,

I suggest you read all the recent (say past twelve months) posts on pulmonary fibrosis and fibrosing alveolitis on this site. I have every confidence in my consultant but he freely admits that \"[i:4bbba25855]not a lot is known about this condition and because it is rare there is not much research either\"[/i:4bbba25855] his words to me were that \"[i:4bbba25855]what works for one patient may or may not work for another\"[/i:4bbba25855]. Always ask lots of questions and keep trying to find out more so that you can push for further treatment if you think it would help. There seems no logic regarding how well or how long patients survive after diagnosis. I was diagnosed two years ago but looking back I must have had the condition for at least three years prior to that.

I have found little strategies that help. There is lot of helpful stuff on the British Lung Foundation site - just day to day coping and HOW to breathe properly and make the most efficient use of your lung capacity. A lot of stuff is for COPD sufferers but some of it is relevant to IPF and FA. I went to a yoga therapist to be shown some useful breathing exercises and these have helped. Paying attention to your posture is also helpful. I am on steroids and carbocisteine plus oxygen 24/7 which is inconvenient but at least enables me to get about a bit using an ambulatory back pack and a mobility buggy occassionally. I prefer to walk but sometimes it is just too, too tiring and uncomfortably breathless. I find getting showered and dressed extremely exhausting but now get husband to run a bath for me and I sit down on a plastic chair covered with a towel to get dry. We are lucky having a big bathroom but I use the loo seat to sit on when at daughters and I always get dressed and undressed from a sitting position. All thse tiny things mount up and enable me to have a bit of energy to enjoy the company of friends and family. I suppose my next step would be a lung transplant but this is a huge challenge as I am afraid I am a bit hosptal phobic and am terrified at the thought of an operation. To complicate matters I have developed diabetes which seems to be the result of the undiagnosed IPF and not the usual cause of poor diet or obesity

love and prayers

Storyteller

hi all

thank you for your replies since i posted this my husband has had an hrct scan which has showed honeycombing of the lung basal and periheral and emphysema but not a lot of ground glass. what we cannot understand is the specialist from being really nice and approachable on the first visit it was like seeing dr jekyll and mr hyde on his second visit, no info whatever, and his remarks as to the honeycombing etc were dont think about it its past history come back in 3 months and we will do it all again. doesn't really give us much information does it. really don't know what to do next? do we ask for a second opinion or what? he did say tho' it is definately cfa also known as ipf. is this good or bad, when i read everything i can on line it isn't really very good is it. hubby exhausted all the time rarely leaves the house, coughing a lot of the time especially when he does anything - also consultant said probably had this for at least 3 years. anyone any info or help, please.

one very desperate and depressed littlesis

Hello littlesis,

so sorry your consultant was not more helpful after your husbands scan. Mine has never actually explained what my lungs look like, all I know is that there is lots of scar tissue which means the oxygen cannot get into my blood hence I need to breathe oxygen. If it was only inflammation and not scarring in the lungs, I believe steroids can make a significant difference. The researcch I have done and info quoted from the consultant was that patients put on a minmum of 17 hours oxygen daily did much better than those that did not have oxygen therapy. I purchased a small oxymeter which I use regularly in an attempt to keep track of my oxygen levels so that I do not \"over do\" things. Have you had a chat with your GP and asked if there is a \"breath easy\" group in your area? Most people who take advantage of the groups seem to be COPD sufferers. There is very useful leaflet to print out fromThe Australian Lung Foundation and useful booklets from Ipswich Council. Try www.lungsbreatheeasy.org Hope this helps a bit. My poor husband is very bewildered and depressed about my condition, although he tries very hard not to let it show and is as supportive as he can be. Our philosophy now is to try and get out and enjoy any sunshine and just enjoy whatever we can do as often as possible without looking too far into the future. love and prayers

stroryteller