feeling down…..and still confused about diagnosis….

[Topgunele]

Hi everyone. Firstly, big thank you to everyone who have responded to my previous posts and given such good advice and support. I had full lung function test last week and 1st consultant appointment today. Diagnosis…. still nothing definite given 😔. Told it’s definitely an obstructive lung disease, but not committing to a definite diagnosis. They could see on my LFT results that my lungs have pockets of air and obstruction when breathing out. They can see my ct scan but no notes on results 🙄. So got to wait again. Inhaler has been changed AGAIN today….this time to Trimbow, but don’t know if need to use as MART. Consultant can’t understand why I have obstruction as stopped smoking 20 years ago and only 52. Given genetic blood test today as my father has COPD (diagnosed age 65) and his father had COPD. Just feeling low from all the uncertainty and not having a definite diagnosis…..so sorry for such a negative post 😔

[Ern007]

I can't help you on this - I am waiting for a diagnosis, on a CT Scan - After years I don't even know what stage I am.

[Topgunele in reply to Ern007]

I hope you get your results soon, and some answers. It’s horrible being in limbo. I don’t think they understand how much it affects your mental health, the not knowing. I hope you get answers soon x

[Ern007 in reply to Topgunele]

And you, nothing worse that waiting and wondering. x

[Topgunele in reply to Ern007]

Your consultant should be able to tell what stage you are at. Have you had a full lung function test? I would keep in at your constant, tell them how much it is affecting your mental health the not knowing. Good luck x

[Caspiana]

Hello. Lung disease is notoriously hard to diagnose. I have Bronchiolitis Obliterans. It is a type of obstructive lung disease of the small airways, very rare with characteristic features of fibrosis of terminal and distal bronchioles and spirometry showing airflow obstruction. At the time of diagnosis I was classified as "end stage" and yet seeing my scans ( CT and X-rays) my lungs looked clear. This is because the only the smallest airways are destroyed and too miniscule to see even in a CT scan. The only reason they were able to put a label on my disease was because I have autoimmune diseases that are notorious for causing this kind of lung disease. It wasn't until I had a lung transplant and they performed a biopsy on my right lung did they have 100% proof that they were right about the diagnosis.

They may advise you to undergo a lung biopsy if they cannot diagnose you. But I'd say give it some more time. Biopsies are risky and unpleasant and should only be done when all else fails.

Best wishes to you.

Cas 🙋🐶

[DizzyLiz57]

Waiting for diagnoses is really hard but the good thing is you are being treated. Like Cas I have Bronchiolitis Obliterans (and Bronchiectasis) from auto immune diseases (extremely rare) and my Consultant had to take my case to a nationwide group of Respiratory Consultants to get the BO diagnosis.Rare diseases are notoriously difficult to diagnose and you are absolutely right - the impact on your mental health is huge.

I would encourage you (if possible) to seek support from others in your area with lung conditions. They may not be suffering all the same symptoms but will understand some of what you're going through.

My Consultant basically said at one point I have a third of the lung function I should have but I don't have asthma, COPD or pulmonary fibrosis but some of my symptoms are similar to each, and the Respiratory Nurse encouraged me to join the local Pulmonary Fibrosis support group. I also join in Asthma & Lung UK's online free seated Zumba sessions weekly (called Feel Good Fridays). Even on days when I can't do much it's good to listen to the music and be encouraged by others in the group.

Asthma & Lung UK also have a regular online Breathe Easy course which includes a session on looking after your mental wellbeing and input from a respiratory nurse and physiotherapist; singing for the lungs and harmonica for the lungs sessions, all of which I highly recommend.

Do hope you can find some things to suit you that can keep you going and encourage you through the waiting.

Take care xx

[katieoxo60]

Hi Topgunele, all lung diseases are difficult to diagnose for definite. Its very downing when you have given up smoking and still end up ill. You like myself seem to have a family history , I feel thats why some of us get ill its genetics but you don't necessarily get the same lung disease , airway disease is very common and as been around since the year dot. It does generally run in families. Many of us never ever get a definate diagnosis of specific lung condition only airway obstruction disease. The biggest problem facing you is diagnosis ,then coming to terms with the illness, that often has no cure. Treatment varies according to how your DRs would normally go forward. Take care and try to be patient , pardon the pun.Hope you soon start moving forward.

[knitter]

as others have said , lung disease can be difficult to diagnose .

I have COPD / asthma ….a grey area crossover condition one GP told me .

I stopped smoking 40 years ago , but it’s only relatively recently that smoking has been banned in public places , so cigarette smoke was everywhere .

My grandmother , mother , my daughters , my OH , me , all wheezy asthmatics .

I hope you get some answers soon , sending best wishes .

[Bellaowl]

make sure you get the copy of the radiologists report of the CT scan. Ask specifically if there is hyperplasia and OT pulmonary lung nodules.

This will make sure the most senior consultant radiology doctor reads the CT scan.

Too many people with long term lung conditions are not getting CT scans of the lungs a d these conditions do not show up on an X-ray.

The treatment is different than for COPD.

Bella