I have idiopathic pulmonary fibrosis(... - Lung Conditions C...
I have idiopathic pulmonary fibrosis(uip)...my age is 39...dey say my lung is 53%damaged...how long can i live....and wat r d precautions ??
I would ring BLF helpline they will answer all your questions. But if you smoke try and stop that's the biggest thing, take your medication and exercise and a good diet will benefit you.
Kim xx
Everyone is different so you really need to discuss this with your specialist. I know many people though with your condition who were on drugs for lots of years and then had lung transplants. They are still doing well. I agree with Kim though. It is important to look after yourself as if you get to need a transplant you will need to be as fit and well as possible.
Hi I was told that I had IPF with all concerns you are having. I asked for some further tests as I also have other medical problems. I have now been told I sarcoidosis which affects the lungs in the same way so ask could it be this. As I had 3 years of very little treatment. Good luck and keep positive.
Thanx fr d reply...Im from india...n i have very little idea obout where to get treated..
I was diagnosed wit IPF aftrr an open lung biopsy which is i guess the best way to get diagnosed
Morning.
I would ask your doctor to refer you to Pulmonary Rehab course, they are run by respiratory nurses who will teach you to exercise safely.
Gook luck
Kim xx
That's how I was diagnosed in 2010 after a open lung biopsy. Since then I was having 3 monthly chest xrays and lung function. then in 2013 my blood disorder but me in hospital on 4 occasion resulting in 3 ct scans bone biopsy and a lymph node biopsy which did not show anything. I was then put on steroids as this was the only thing that could control my blood disorder, because steroids cover what's happening and how I was feeling and the length of time I was told I would have I wanted to know how I would be if I stopped taking the steroids (I would not suggest that anyone does this) so i stopped for 3 months and then had a ct scan that showed enlarged lymph nodes in my chest. I had a lymph biopsy just before xmas which showed that I had sarcoidsis which can affect your lungs in the same way. When I asked why it did not show up before I was told that you have to take the biopsy from just the right place. So I am now back on steroids to get under control but the damage to my lungs cannot be undone. You may wish to suggest this to your doctor or if you have not been referred to a specialist hospital that deals with IPF ask if you can. I do not blame anyone for the length of time it took to get the right diagnoses but it don't hurt to ask as it is your condition.
Hi, I was DX in 2009 and waste a lot of time worrying after reading the net and people suggesting 2.1/2 years life expectancy. Since then I have met people who were DX 15 years ago,
I think it effect us all differently and even the medics don't know with any real degree of certainty how things will work out for each individual. My advice would be to make sure your GP refers you to an IPF specialist who has experience and knowledge of working with it. My first consultant claimed he was experienced in dealing with it but I was able through researching information on the net to establish he was being less than honest, his prescriptions were not only out of date but put me at unnecessary risk of developing lung cancer.
There are some really good support net works out there with lots of information and advice from people who like ourselves have had to work hard to inform themselves but are more than willing to share their knowledge.
Trying contacting the British lung foundation and the American Lung Association they have lots of info plus some good discussion groups where people exchange knowledge and experiences. Good luck try to enjoy each day as it comes, stay as fit as possible doing whatever excirse you can manage, eat a good healthy diet and stay positive (it's not always easy) you may have many years ahead of you.
There is a site called Patientslikeme with a stream dealing with IPF
All the very best
Thanx a lot...!!!
