Help please 😉 newly diagnosed

[lynnie2010]

Just a question, am 41 and was diagnosed with mild centrilobur emphysema after a cock up of my ctpa report.. ( said i had dilated right heart, lungs fine) rest of scan was all good lungs looked good, this scan was done because my tlco was just 44% but my other lung function was all normal n asthma was well controlled.. my oxy levels drop to 84 and flucuate on exertion ( but can drop to 89 at rest too) and i have heavy achy chest pains and s.o.b n lightheadness... does all this add up to my disagnosis? My tlco seems rather low for a diagnosis of mild emphysema? What was ur tlco when u was diagnosed etc.. cant help think something bein missed as i am s.o.b everyday even just gettin dressed.. hills, stairs etc are a killer amd i cant walk and talk at same time lol ( which some are pleased lol 🤪) at rest i am fine and i recover relatively quick when i stop.. but on days i am s.o.b rest too x

Ps i dont have a cough n never have either.

[lynnie2010]

Since found out i didnt have dilated right heart to start with but i do have emphysema which they failed to spot at the time.. As u can imagine i am furious.. had letter xmas eve bout heart n worried myself sick, which ruined xmas!! To find out it should never have been said!! Only got looked at again as i questioned them about the tlco bein so low n not havin a lung condition to cause it, also to have right dilated heart it normally caused by a lung complaint too. So i asked doc to re refer me to question respitory doc otherwise my doc was happy to just say i was fine n nothin wrong and just manage it without actually knowin qhat was wrong!! X

[stone-UK]

Some reading for your, may explain better.

medicalnewstoday.com/articl...

[Katinka46]

Hello Lynnie

You obviously have a lot of complicated stuff going on. I see that you have fibromyalgia. You are a wee bit young to have emphysema. And, as you say, your symptoms and oxygen desaturation are much worse than you would expect for mild emphysema. I am curious about who said you had a dilated right heart and who then contradicted this. Have you had an echocardiogram to look at your heart? I am always very curious about anomalous lung conditions. I sense that your GP’s bland reassurance is not doing much to help you. I would find it very frustrating. And I have been in a similar situation. It is confusing because your symptoms could stem from either a lung disease or from a heart problem. I am the sort of person who always likes to know what is going on even if it is bad news.

Please let us know how things progress.

Kate

[lynnie2010]

Yes all that was normal only thing wrong was the tlco hence why they did a ctpa to look for clots.. n report back said lungs fine but dilated right heart.. so i asked for second opinion on ctpa scan and it came back that i dont even have enlarged heart at all but mild emphysema... but that doeant fit woth tje tlco levels n normal fev etc

[lynnie2010]

Yes had echo all normal part from trivial triscupid reguratation. N radiolist said bout heart so i questioned it and was reported on again and heart is normal should never have said it was enlarged but i did have mild emphysema.. which the ist radiologist missed. All complicated lol x n i can cope with anything long as i know what i dealin with.. x

[Katinka46 in reply to lynnie2010]

Thanks for getting back to me. It really is a puzzle and with such dramatic oxygen desaturation no one can say there is nothing the matter. Have you got the report on the echo? What were the numbers for the estimated pulmonary artery pressure? Sorry to nag you but I am genuinely curious. I had a very difficult time getting my diagnosis so I really identify with your situation.

Kate

[lynnie2010 in reply to Katinka46]

They didnt give me any artery pressure info or my ef just said it was normal with trivial triscupid regurgitation . I would like to know that too.. think i will ask what they was. X