Devastated, I think I have IPF - British Lung Foun...

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Devastated, I think I have IPF


I’m 42 and not feeling too good at the moment, my uncle age 47 and Dad age 60 both died of IPF in 2015 with 3 months of each other. My other uncle age 60 is now also suffering with this disease. Another uncle is suffering with emphysema. Their mum died of COPD and emphysema back in 2005. I also believe their mum’s. 2 brother possibly died of some sort of lung condition.

I’m feeling slightly breathless, my heart feels like it racing most days. I’m feeling achy on both my sides and upper back. I’m just not feeling right inside and have got it into my head that I have IPF. I went to the Dr’s in December and he sent me for an X-ray, full bloods and ECG. I saw the Dr at the beginning of January and all my results were fine. But due to the breathlessness and family history he referred me to the hospital for a lung function test. The hospital had referred me for the LFT about 3 weeks ago which the reapiratory nurse said my results were fine and I did not need to do the 6 minute walking test. I have also been referred for CT scan which I’m having on Monday Night. I then have to wait an appointment with the consultant which is a 3 month wait from he End of January so it’s looking like I will have to wait until the end of April to get my results. I really don’t think I wait that long. This is really getting to me. I have a 6 year old son and feel so devastated that I could have this disease and that I’m not going to see him grow up.

Sorry for the long winded post, I can’t really speak to my husband as he seems to think it’s all in my head and that I want to have this disease.

20 Replies

I think you might be getting carried away joining all the dots

Myself have sufferd terrible anxiety AND it’s not even funny really.

Myself I have thought alsorts time I have been ill.

Am sure things will be fine AND doc’s giving you good check over AM sure if found stuff would have you In befour April.

Sorry to hear about your family relatives tho.

If was me I would clear my mind of all sadness and focus on what good in your life KIDS are blessing even tho hard work but am sure very good at districting you from sadness sufferd.

Don’t waste best part of your life worrying.

Hello Jack42

*Hug* How very worrying for you. I know IPF runs in families so, your worry is not unfounded. The good news is that the tests you have had have come back with no little red flags. Now that's very good news. Please try not to panic. Breathlessness and palpitations can have a number of causes that are not necessarily lung disease related. And certainly stress does not help. See what the CT scan reveals, then go from there and do let us know how things go.

Thinking of you.

Cas xx 🌻

Hi there.

You are doing all the right things and having all the right tests.

I have pulmonary fibrosis and I’m 46. It’s not IPF, it’s a different cause, but the prognosis and symptoms are the same.

Any fibrosis of the lungs should show up on an X-ray and will be certainly be visible on a CT scan. LF tests would also show problems.

By the time I was feeling a little breathless, my X-ray, ct scans and LF tests were all showing the disease quite clearly.

If these are currently clear for you, you can be sure you don’t have IPF. The CT scan will be the final test - if that is clear you are definitely OK.

Even if you did have it, all is not lost. I have only around 2 years left, but I’ve just been assessed for a transplant and things are looking very positive for that, so there is always hope.

It must be so scary to have lost so many people you love to this horrible disease, but try and be calm, and trust the test results.

The best attitude is to stay positive but to always be vigilant - mindfulness meditation works wonders for me, you could look into that as a way to cope.

Good luck, come back here when you have your CT results.


You've had great replies from the others, jack43. Hope you feel reassured that at the moment things are ok, but with your family history you are wise just to keep an eye on any developments. Try living in today rather than wasting your peace of mind worrying about the tomorrows. Wishing you well.

I can only agree with what others have said. In my own experience my mind can cause me more problems than my lungs and it’s so easy to start on that spiral of worry. . Assuming the ct scan is clear focus on dealing with your anxiety around your health. Keep the glass half full while it is x

Thanks everyone for the positive posts, I will try not to think about it until I have my results. I will also take myself back to the Dr’s to discuss my anxiety as I know that’s a big part of my problem. I’ve also never suffered with anxiety before so this is new to me.

I will come back with my results.

Again thank you all 🙂

in reply to Jack42

That's a great plan of action Jack42 . Anxiety is awful and often it teams up with depression and they have a party at our expense. 😑 We will wait for your news. Take good care. xx 🌹🌸

With your family history I am not surprised that you are really worried but hey so far all the results are coming back clear, so maybe you are going to be the one who breaks this horrible cycle try to think along those lines and be more positive and hopefully all will be well and you will get a complete all clear before much longer.

oioi i had ipf it showed on xrays lft scans it showed on all so dont get to worried

in reply to sibkev

Fantastic point sibkev . 👍

Why do you and others just throw out things like IPF and think we know what you are talking about? PLEASE type the words -- in this instance, Idiopathic Pulmonary Fibrosis, which I found thru google. Thank you.

Hi Rose. There’s a list of abbreviations under “Pinned Posts”. Sometimes we can’t type out each acronym. Hidden would have to type Lymphangioleiomyomatosis instead of LAM every single time!

in reply to Hanne62

😃 indeed

in reply to Hip-Hop-Rose

cus me spelling is bad

in reply to Hip-Hop-Rose

Well this is a site for people with lung conditions etc it's not Facebook! You could try asking others rather than talking at us 'others' .. We are all caring people who would tell you if you asked but just presume most people on here are ill themselves or have a loved one who is ..Like Hanne62 mentioned happy london habing lam I too have lymphangioleiomyomatosis... so I have to break it down to lam (a very rare progressive lung disease) .. hope that explains

in reply to Hidden

Didn't mean to set off a firestorm -- was just a simple request kemety.

Jack--Try to go with what you have learned so far--and live one day at a time--Don't get all anxious or apprehensive or that will make breathing worse. I understand why you are fearful -you have a right to be-But nothing at this point means you have IPF. Have you been to GP for chest x-ray in case pheumonia??I don't know how it has been where you are at but where I am a terrible year for flu and pneumonia..which leaves you weak and breathless.Just hang on to your child and love him--or he will get anxious too... As I told someone recently worrying themselves sick ":half of what we worry about never happens" Put one foot in front of the other ,and keep going--If you need to have a cry now and then or a prayer have it--but do not ruminate-Instead of thinking" Oh I bet I have it" Think how wonderful it will be to find out you don't--Visualize that everytime you start that worrying and look towards april knowing you will have answers then and quite possibly a reason to celebrate... id like to know how you turn out--Love,MmeT

Have your Dr. prescribe Buspirone 10 mg. X 2 per day for your anxiety ( it is non- addictive ) . I have used it for 3 years for my anxiety. You can look it up on Bill

I can understand why you are stressed, because it appears to run in your sounds that you are doing everything right with tests etc....I would also do a sputum test as well to cover everything...try and relax until you get all results. You might not have what your dad etc.. had. You never know..💕

***Update*** - I’m still awaiting an appointment with my consultant for my CT and LFT results. But I finally went to my own Dr today to discuss how I’ve been feeling with the possible anxiety. He had a listen if my chest, blood pressure etc and he said everything seemed fine. He has prescribed me some propranolol to take as and when needed. I hoping not to have to take them.

The thing that concerned me was that he could see my CT results but did not have my LFT. He stated the the scan seemed fine nothing of concern but then mentioned there was a little bit of scarring at the top of my right lung!!!! That has set alarm bells ringing again especially with the family history. I know not all Drs are experts.

I don’t know how I’m going to cope until my consultant appointment comes through! Looks like I will need to take the pills!!

Sorry for the long post 😕

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