Can anyone help me please,I have recently been told I have fibrosis on my lungs after a routine X-ray,since then I have had 2 more X-rays,spirometer tests,lung function tests and a Bronchial wash.all the readings and the wash have either showed no abnormalities or as in the X-ray's slight scarring on the bottom of my lungs,I have no breathlessness,no coughing or wheezing so I am at a loss.my consultant wants me to have another C.T scan and if that doesn't tell him what type of fibrosis it is he then wants me to have a lung biopsy.Seeing as I have no symptoms whatsoever he said its in the early stages whatever it is,I am at a complete loss and don't really want a biopsy if I can avoid it,I am age 54,a smoker and a type 1 diabetic. can anyone help with my query please,any advice will be much appreciated,thanks.
Scotty. By all means have a HD CTScan! I am in the same boat. I feel fine. All my docs have said no biopsy until I have symptoms. But the Scan is important and not invasive. Biopsy is too invasive at this point. Stop smoking for sure. Please keep us posted. Good luck.
P.S. Any family history of lung issues?
Have the scan. Scans are completely trivial but give very powerful information. In addition, if in the end you are diagnosed with pulmonary fibrosis, get access to Pirfinidone, a drug that has been available for a couple of years. It has a powerful effect to stop the development of the disease. I have been on it for about 18 months and it definitely slows down the development of the disease. It is expensive, so your doctor may have to bully the NHS to let you have it. Few and negligible side effects.
good luck.
neville
Hi Judy,my sister died in2012 from honey combing of the lungs,it started after she was prescribed methotrexate for her rheumatoid arthritis,she was in absolute agony and her doctor prescribed morphine medicine which she accidentally overdosed on.she ended up in hospital intensive care but the damage to her lungs had gone too far and she died within three weeks of being admitted.i have been checked for rheumatoid but everything is fine.
Hi Judy,is a high definition ct scan different from a normal ct scan as I have already had a normal one?
Yes much better but you better weigh the risks. There is quite abit of radiation in scans. Check with a good doctor. Too bad it wasn't HD to begin with...
Thanks Neville,I will defo have the scan but I'm just unsure about the biopsy as I have no symptoms,and I don't want to have something as invasive as a biopsy in case it disturbs anything and it starts something off.
Rheumatoid arthritis can be connects to NSIP a disease which falls under the category of pulmonary fibrosis. My sister also died in November 2014 from IPF. She had other issues, alcoholism and possible micro aspiration etc. and general a poor health related to alcohol. She did stop finally before death. She was one special girl and I miss her terribly. I was checked just because of the disease in the family and it was found. I had a prev X-ray in 2012 which was clear. October 2014 showed some fibrosis. No symptoms. Stay positive and keep healthy. Walk walk walk
P.s. I have not had a biopsy but they feel mine is NSIP not IPF. No honey combing which is good.
I agree. I have Canada's best Dr Charlene Fell and she says no biopsy till I have symptoms! May never happen.
Thanks Judy for all the help and information,depending on the results of my HD ct scan I don't think I will bother with the biopsy,why should I put myself through that when I have no symptoms.
Exactly. Do you have any crackles heard by your doctor. Do you have any feeling of a " cold" coming on but doesn't develop? I don't have and crackles but sometime I feel like inflammation somewhere near my lungs. But I do have some longtime sinus issues. It's prob all I my head! I feel well
Yes Judy the consultant could hear crackles when I saw him 2 weeks ago,I do on the odd occasion have bouts of a runny nose for a day but no longer and I feel well also.i have had sinus problems in the past but nothing I have worried about.we sound like we have the same problem Judy,do you take any medication?
Hi Scotty. I was in a similar situation - no amount of X-Rays helped until one finally showed "something". After a CT scan I had a biopsy and that enabled a diagnosis to be made. In my case I have Idiopathic Pulmonary Fibroses (i.e. they don't know the casue).
The biopsy was invasive but nowhere near as bad as as you might think and it proved conclusively what the problem was. Ths sooner it can be diagnosed the sooner treatment can start which is vitally important.
Keep your chin up and Stop smoking!
Thanks john,did you have a high definition ct scan?and what meds are you on now?
Hi Scotty. Yes I had a HD scan which showed an abnormality.I was thern referred for a biopsy which gave conclusive diagnosis. Don't get me wrong, I'm not advocating " biopsy for everyone" but whilst it wasn't the most pleasant event it certainly wasn't as traumatic as I thought it might be.
Initially I was prescribed N.A.C. which didn't really do much for me. I was also getting frequent chest infections which really caused me problems so they put me on some permanent antibiotics called Septrin. Initial results have indicated that one of the side affects of Septrin is of benefit to IPF so that's a bonus.
I take 3 tablets a week and it's on going until I hopefully start treatment with a new drug called Nintedanib in earlyJuly. It won't provide a cure but may help to slow down progression of the fibrosis. It's been approved by N.I.C.E. and is on limited release through the NHS.
I also have ambulatory oxygen which is really useful if I have to exert myself e.g. mow the lawn, walk a distance - that type of thing.
One really important thing to do is to keep as fit as you can - even though it's not a great feeling to make yourself breathless when, as with myself, I'm often breathless anyway!
Good luck mate! Be positive: it's so much more pleasant than being negative - for you and those who care about you.
There are new medications becoming available all the time and, God willing, maybe a cure will be found.
Thank you so much john for all the info,it will all go towards my decision on whether I have the biopsy..if one is needed.i do think whatever I have it is in the very early stages because as the title of my post states I have no symptoms whatsoever..I'm still waiting an appointment for my HD ct scan,so fingers crossed I get a result from that and I won't need a biopsy.
I have been told today that I have fibrosis on my lungs?
But, I've suffered for years with shortness of breath, chest stabbing and dry cough. Like you I've had the tests too. I just think you doctor is being very thorough, my doctors have taken months and months to get a diagnosis. Not had a Bronchial wash tho, is it unpleasant? I wish you well the CT scan has much more detail on it, take a look at You Tube there's a lot of descriptions on it.
I am wondering, are broncho washes unpleasant?
Thank you, and Scotty, Good Luck, please keep us updated!