Lung disease, LIP,
Does anyone know anything about LIP l... - Lung Conditions C...
Does anyone know anything about LIP lymphocytic intersistial pneumonitis. My consultant doesn’t know much and not much online either
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Neffie95
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Welcome Neffie95, I’m afraid I can’t help but just wanted to say hello. Maybe someone else will know more. I think you need a referral to a specialist. Xxxx
I wish but apparently there are not any specialists in the country. My consultant has looked. There is one at the Mayo clinic but he doesn’t respond to myself or my consultants emails. We are both trying to learn together so was hoping (that sounds awful) someone else had it and could give a little but of info. So far all we’ve got is, if caught early and no fibrosis 50-66% of 2-5+ years. I have fibrosis and there’s no info given on that at all. Hence hoping someone else knew something about it
So sorry that the person at the Mayo clinic does not respond. Hope they do eventually, if you persist. Have you tried a letter or just sent emails?
We may not be able to offer anything in the way of the information you are seeking, but I'm sure we will all be here to offer you support if you stumble in the dark.
I can't really imagine what it must be like to find out that there is no one with the information you need.
I would suggest that, even though they may not know the specifics of your condition, the respiratory team should be able to help you with your symptoms at least. If you can get a referral to Pulmonary Rehab you may find it helps you to manage on a day to day basis (unfortunately, there are usually waiting lists for it and at the moment, I think it will all be on Zoom). Take each day as it comes and do what you can manage. Most of our chest conditions seem to benefit from gentle exercise and BLF have information on things you can do.
When I asked my GP about life expectancy he answered, 'I have lost two good friends this year. One knew he was dying and the other died suddenly in an accident.' In other words, none of us can really know what's ahead so must make the most of what we've got. At the time it wasn't really what I wanted to hear, but I've come to realise they were wise words.
Good luck in your search for information.
xx Moy
Welcome to this site. I'm sorry I can't help. There are people here who have lived well beyond the time they were told they had left. Exercise as Moy suggests. xxx
I hope these links are of some use to you:
From Merck and Co., Inc., Kenilworth, NJ, USA known as MSD outside the US and Canada)
The MSD Manual Professional Version
msdmanuals.com/en-gb/profes...
The MSD Manual Consumer Version
msdmanuals.com/en-gb/home/l...
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Radiopaedia Article
radiopaedia.org/articles/ly...
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European Respiratory Journal
erj.ersjournals.com/content...
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Chest (A PDF File)
Thankyou I’ll have a read through
