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Dad has been diagnosed with pulmonary fibrosis on xray alone.

rachmd11 profile image
12 Replies

I'm new here. I'm hoping to receive information and support following some upsetting news. My father underwent an xray and heart scan after a test at work suggested he had the lungs of an 82 year old. He received the results of the chest xray a couple of weeks ago and the Dr said that he had pretty bad scarring on his lungs and diagnosed pulmonary fibrosis. He was told he would live 3 yrs without treatment but should live 10 yrs with treatment. My father is 61 and has no other known conditions apart from asthma and is generally healthy and doesn't smoke. His Dr has referred him to specialist for a CT scan.

I'm finding the news quite confusing as I don't understand how pulmonary fibrosis can be diagnosed from an xray alone. And also I don't understand how the Dr can give a definitive life expectancy without knowing what type of pulmonary fibrosis he has.

I'm hoping someone can help.

Thanks

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12 Replies

They can't be sure on an xray alone. Your Father's doctor has done the right thing in referring him to a specialist who should carry out further tests including a ct scan. The consultant will then decide how to treat him. Don't listen to doctors' predictions.

Damon1864 profile image
Damon1864Volunteer

I totally agree with Littlepom, please let us know how your dad is getting on and remember we are always here for you. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

sassy59 profile image
sassy59

Welcome to the forum rachmd11, hoping your dad gets the right treatment and the CT scan will happen soon. Xxx

Biofreak profile image
Biofreak

Sorry to hear about your Dad. Fibrosis can be picked up on an x-ray but nobody should be making predictions at this stage. The extent of the fibrosis can be more accurately determined with a CT scan and will be analysed by a doctor with a specialism in lung conditions. Treatment will depend on the extent of the scarring and how much his breathing is affected by it. Don't worry at this stage. Fibrosis means scarring and can be caused by many things. There is information on the BLF website but don't worry unduly at this stage.

Katinka46 profile image
Katinka46

Welcome to this forum. There are many here with PF who can offer advice and support. Like the others who have replied I think your father's doctor (GP?) is jumping the gun, but (s)he has done the right thing to refer him.

All the best

K

P.S. Autotext turned 'support' into 'supper'. Maybe you would prefer supper, but support is more helpful in the long term.

Izb1 profile image
Izb1

Hi rachmd11 and welcome to the site. I would wait to see what the ct scan and the consultant says before worrying about your doctors opinion, nobody can say how long you will live x

kenbren profile image
kenbren

I was diagnosed with IPF in July 2019 after attending my GP about a persistent cough which would not go away, I eventually had a routine x/ray which indicated scarring on the lungs, I was referred to a Consultant in the Lung function clinic at my local hospital where I had a CT scan which confirmed Idiopathic pulmonary Fibrosis the Idiopathic being unknown cause. In the meantime my Consultant contacted BOC regarding help with breathing and I was given a Oxygen Concentrator which helps with breathing when walking or exercising BOC are first class in their service and attention.Last year I lost my dear Wife which was more than devastating as she was my support throughout the months since my diagnosis and made it all worth while to continue fighting this which I decided I would continue to do. I attended the Royal Papworth Hospital Cambridge where I went through a series of tests where they determined that it was Sarcoidosis.

Every 3 months or so I have attended my local Lung Function Clinic for walking/Breathing tests and X/rays.

Pulmonary Rehabilitation classes have also helped me which are with a small group who also have various lung problems. Living alone and with no immediate family I try to get to know as much as I can about my condition and treatments.

I do not contemplate how long the so called lifespan is nor has anybody mentioned it.

With all the great friends on this site you have good support. Stay safe.

Rattle profile image
Rattle in reply tokenbren

What a kind and clear message despite your own hard times...This forum is full of so much care & knowledge. Stay safe you too, kenbren

kenbren profile image
kenbren

Sorry, I omitted to say that the Consultant prescribed Prednisolone, Steroids.

mary1956 profile image
mary1956

Please do not listen to life predictions. I was told I had 2 years, after the preliminary diagnosis of fibrosis. That was 8 years ago. Treatment slowed down the progression, and it will depend on the cause of the fibrosis. Although progression has now resulted me being listed for lung transplant, I am still here, fighting. Take each step one at a tie. Do not look too far ahead. Treatments change and are different for everybody. No generalisations.

Alberta56 profile image
Alberta56

Welcome to the forum. There are several members here who have gone well past their sell-by dates, which is hopeful for all of us. Forget the GP's words for the moment; never consult Dr. Google and take on board the positive steps your dad can take with your support to minimize the effects of the fibrosis. It sounds as if he's not doing too badly at the moment if he's generally healthy.

Caspiana profile image
Caspiana

Hello Rachmd11, 😊👋

If your dad is being referred to a specialist they will carry out more tests to come to a firm diagnosis. Lung disease is not the easiest to diagnose. This is indeed unsettling and very upsetting news. He and your family will have to come to terms with it in your own time. He will be needing much support and encouragement. There are many ways to stay as healthy as possible with lung disease. It might be recommended he join a pulmonary rehabilitation class , if he has extra pounds he may have to lose some and diet of course is important. Sometimes there is a misconception that exercising causes breathlessness and that is a bad thing. Exercise in moderation is veey, very good with advice from his doctor.

As for the prognosis, I was end at end stage lung disease by the time I was diagnosed. The prognosis was grim but I surpassed it and had a transplant in 2019. I had a single lung transplant so my left lung is still diseased and I dare say kaput. 😕 Doctors tend to tell us the worse possible scenario because they cannot predict when the patient will die in reality. They would rather not give too much hope just in case they are wrong. Death is only predictable days and hours beforehand. Not years. I think most of us here are testament to that.

Although it is such a difficult time, please look around the forum. Many of us are ill with various forms of lung disease , yet we continue to live and indeed thrive within our capacity. There is still much life, love and happiness left for your dad. Do not lose hope.

Best wishes,

Cas 🍀

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