Newly diagnosed with IPF (idiopathic pulmonary fibrosis)

[kibera]

I only found this site a few days ago. Was in hospital as an emergency (abdominal disorder) end of July and a CT scan showed up partially collapsed lungs (and other things I am being investigated for) - I had been seeing my GP for breathlessness, cough and extreme fatigue since February and it was just being monitored but this was a surprise. Had a chest Xray last week and was told this morning this is what I have - amount of collapsed lung has increased especially in left lung. GP told me this is 'scaring of the lungs'. From previous gynae operations I have very extensive 'bowel adhesions' - which is scar tissue. So I am wondering if the scaring of my lungs has any connection with this. I have an appointment for a lung function test in two weeks and then will be referred to the relevant hospital department.

[sassy59]

Welcome to this friendly, informative site kibera. Hope you get some more replies soon. Xxxxx

[cofdrop-UK]

Hi kibera and a very warm welcome to you. I a sorry to hear of your health issues. I have a different condition to you but there are friends on here and I hope they will be along soon.

Cx

[Kittykat2]

Hi welcome some lovely people on here.

Im sure people will respond.

Lots of older posts all with different lung conditions.💕x

[Caspiana]

Hello kibera . 👋

A very warm welcome.

You have had such a tough time of it lately. I am sorry to read your story. It is such a trying time when first diagnosed. I really cannot say if scar tissue or adhesions had anything to do with your IPF diagnosis , did they tell you if It was Idiopathic? Some people may be genetically predisposed to it.

You will no doubt have quite a road ahead figuring this all out, but please know this is a great place to come and share, vent or just read. I hope you will keep us up to date with your journey. You are not alone.

Sending happy thoughts.

Cas xx 🌼🌱☕🍀

[Meg52]

Hello Kibera, sorry to hear of your diagnosis. When you are referred to the respiratory clinic do not be afraid to ask the consultants questions. The consultants will probably be the only people who can give you the correct information. You are very wise to stay away from Dr google. I have pulmonary fibrosis, for a long time they didn’t know what was causing it, but now know mine is caused by lupus. There’s been a lot of research into IPF in recent times and the outlook is much more optimistic nowadays.

Good luck with your lung function test and hospital appointments. Let us know how you get on.

Meg xxx

[Aingeful]

Hi Kibera,I was diagnosed with IPF two years ago following what seemed like a permanent cough for years! It was diagnosed by CT scan.I was also referred to a Rheumatologist to see if there was a link etc. Scans and tests up to now haven't established a link so what has caused it I don't know. I'm not having any treatment and have been stable for 2 years. My Fev 1 is 59% which I think is classed as moderate. Stay away from Google!! My consultant has told me to take no notice of it! 😁 Get Pulmonary Rehab if you can.

I take each day as it comes and am still enjoying doing the things I enjoy.Ask loads of questions, I print a long list out!😀 xx

[Nevvik]

Hi best suggestion I have is to enquire about Pulmonary Rehabilitation course - made a significant to myself and others I have spoken to.

My understanding of Idiopathic PF is that the cause is of the disease is indeterminate.

My best wishes to you - stay positive!