ILD (Interstitial Lung Disease)
Posted , 3 users are following.
Good Afternoon,
l will try and keep a long story as short as possible. My grandfather for over 5 years has had a prolonged dry cough and breathing difficulties. No one done anything despite his lung function being 40% in 2014. This year he was rereferred to a Thoracic Consultant who mentioned COPD many times but needed a second opinion. In the mean time he was referred to Oxygen therapy and pulmonary rehabilitation, but we’d heard nothing from PR. So I called this morning to be told more than I had bargained for, that his referral was in line With a diagnosis of ILD.
To to say I was surprised and shocked is an understatement. After reading up about ILD it’s safe to say I’m devastated at how degenerative and awful this disease is. I’m looking for some support and guidance really from people who have been or are going through the same thing.
I don’t really want to accept anything, but I have to accept that this will never get better. My grandad and my gran raised both my sister and I from infant age, and my Grandmother passed away 4 years ago, so he’s all we have left and I’m just utterly devastated.
i hope someone is able to help me - but whenever you are in the world, I hope you are having a great day 💕🌈
0 likes, 3 replies
bob80691 Zibbidy
Posted
Hi Zibbity:
Very sorry to hear of your Grandfather's situation but right up front let me say that from your posting it doesn't appear as though you have had a formal diagnosis of (Idiopathic Pulmonary Fibrosis) IPF. You have had a comment from PR and what appears to be a diagnosis of COPD from the Consultant. So for now take a bit of comfort until a formal diagnosis of other than COPD is given.
I'm not totally conversant as to whether a Thoracic Consultant, whose specialty is lung cancer, is as conversant with IPF as a Respirologist. I think he should see the latter, who is very likely to send him for a Cat-Scan and perhaps a Lung Function Test and go from there.
There are also new medications on the market (OFEV and Esbriet) which, while not a cure, slow down the progression of IPF.
I have IPF and have had it for 10 years. So try and relax a little until you get more information. Good luck to you and your Grandfather and stay in touch.
bob80691 Zibbidy
Posted
In my earlier reply I referred to IPF and not ILD. ILD is a more general term and covers a number of lung issues. Hearing how concerned you sounded, I commented on IPF which is the ILD condition most often written about in this forum.
Reglois Zibbidy
Posted
I am 72. So sorry to hear about your grandfather. I have Emphysema + Pulmonary Fibrosis which is an ILD and sadly it will only get worse, I am determined to get myself as healthy as possible and get my lungs stronger , exercise as much as I possibly can keep away from crowds and get vaccinated against Pneumonia and Flu Keeping away from bread etc, not too much sugar nor salt. In fact a life style change, I am alone and have 4 rescue dogs I have to out live them all long lived breeds but all in their middle years. My cough is controlled by small doses of prednisolone (1/2 tablet = miracle) I am in France so might be spelt differently where you are, late August I will be put on a photo sensitive tablet so have to either cover up completely or use a complete sun block. Grandad is lucky to have you there for him.