I have been recently diagnosed with Interstitial Idiopathic Pneumonia with Fibrosis. I have been relatively healthy over the years (46 years old). I have had Covid twice and my second bout left me feeling really breathless (December/January 2023). I have been undergoing tests all year and I am left really shocked at my diagnosis.
My consultant called me to tell me, then I was left with the internet! scary stuff. I'm a lone mother of two, I live in Scotland and I'm not going to lie, I'm terrified. I have started a three month course of Corticosteroids .
I just wanted to reach out to see if there are any other individuals on this forum who has the same condition to chat with.
Thank you for reading 😀
Lisa
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LisaIIP
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Welcome to you Lisa. This is such a friendly, caring forum so I’m sure someone will be along soon with help and advice. I’m sorry to hear of your shock diagnosis but things are improving all the time meds wise. Thinking of you. Xxx
I have Fibrosis but not "Idiopathic Pneumonia " so I can't really help, but to wish you all the best, What a shock, internet and Dr Google really can be very scary - I know know been there,
Thank you so much for your reply. Can I ask you how old you are Ern007 and when you were first diagnosed, how are you managing your condition.
Sorry for lots of questions, its just nice to get others perspective on fibrosis.
I've joined a few Facebook pages, but I understand they're USA based? All talking about lung transplants and medical insurance 😢
This is so surreal, I wasnt hospitalised or anything, I'm actually feeling not too bad, off work but that's mainly because my mental health/shock factor xx
I am in my 70s - This happened in stages, I think first about 20 years ago mild then, and recently a CT Scan Showed more scarring while being tested for cancer.
How I manage - Well I am not the most active of persons these days - My COPD Flares are less, but I have Dyspnea (air hunger) . Probably due to fibrosis, but could in part be cardiac....
Survival with PF is very variable. it depends I suppose on the stage - There are 4 stages to PF starting with mild.
If you are feeling Ok then that's good, just keep away from smoke and other pollutants..
Take Care xx
EDIT - Littlepom sums it up and is spot on.
Ideopathic means no known cause. So you have a pneumonia with no known cause and they should have been treating you. Many of us get fibrosis in parts of our lungs due to the conditions which we have and previous pneumonias have left us with some fibrosis.We live with it. Please get off the internet. It has so much rubbish on it.
Make sure you ask the consultant to explain what he said to you. Many people who had covid were left with pneumonia and the pneumonia can cause fibrosis. Not a death sentence.
I do wish that these doctors would not drop words on to people without explaining what they really mean in your particular case.. As you were well before covid this is probably just a 'left over' that doctors need to deal with.Covid has left a lot of problems. Do let us know what the consultant says.
A suggestion when you see your doctor, record the visit. You are in a state, will not likely remember it all (who does), you can listen again when you are home. I record all my doctors now,
I have idiopathic pulmonary fibrosis, diagnosed 18 months ago I agree with you it is very scary getting a diagnosis and the consultants don’t explain. There are many meds now, I have been on an anti fibrotic drug for a year.
I always Write a list of questions ready for my appointments and have found it helpful.
Google scarred the life out of me and I try not to Google anything anymore as it’s so out of date and only gives half the information
Great advice especially about writing down a list of questions to ask the consultant - if you are able / comfortable to take a relative / friend with you that you trust -It can be helpful.I find I can focus on one answer and forget what was said afterwards.
Hi Lisa and welcome to the site. I can't advise on your condition but am sure somebody will that have the same . There is a helpline 0300 222 5800 if you need some information and am sure they can answer some of your queries. I think we are all shocked and worried when first diagnosed but the amount of knowledge that you gain from this site is comforting along with the genuine concern from members is as one member said, like having friends next door x
Thank you all so much for these replies. I genuinely had the most sleep last night since finding out. I'm so happy to have reached out to find some comforting words.Quick question, has anyone tried alternative Chinese medicine for Lung health?
A warm welcome to the forum. As Izb1 mentions, you can call our helpline to chat to one of our Clinical Team who can discuss the things you are worried about. We are here Mon- Fri 9.15-5pm.
I have COPD and asthma and a retired nurse who nursed a lot of chest infections over the years. My chest x ray and later scan showed fibrosis of both right and left upper lobes which I had no idea about. He said it was repeated exposure to patients chest infections. I am OK though.
Hi, I am so sorry you have been left scared about your diagnosis and nothing seems to have been explained to you. I am very confident someone here will be able to help you and put your mind at rest. This is a cracking forum and I wish you good luck 👍 😉
Hello Lisa…. Ask your consultant to explain everything in detail to you. If your scan is saying fibrosis then are they considering prescribing one of the anti fibrotic drugs. Your are only young and it’s really important to maintain and improve your fitness if you can, ask about pulmonary rehabilitation classes. Let us.all know how you get on 🤞
Hiya Lisa, I'd suggest reading my 2 year journey to recovery. In the end healthy eating, gradually increasing my activity levels over a 2 year period and I recovered. Note that I was critically ill with covid pneumonia and in hospital for a month. I was diagnosed with ground glass on my lungs, which is permanent scaring.
I started climbing mountains again a few months ago and can run 5km in 37 minutes.
I'm not as fast as I use to be and I have to watch my heart rate on a mountain, but recovery is entirely possible.
It just takes time
where you are now, when I was there I just could not see an end to this, but with care, you will get better, and likely with just simple good eating, good physio advice and tenacity. Breathlesness from pneumonia takes an age to improve, but exercise is very important. I was breathless for around 8 months, and had chest pain for around 12 months. It took me a year to get walking a few days a week and at 15 months I finally started running.
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