Emphysema query

[Sunflower01]

Hi everyone, just looking for some advice or if anyone can offer ANY information I’d be very grateful. So I was recently in my local a&e after having sudden chest pains and shortness of breath, all tests done bloods, X-ray, ecg and they all come back fine other nan high d-diner levels which could have indicated a pulmonary embolism. Anyway the short of it is after having a ct scan the radiographer reported no clot, but the doctor has said he see’s emphysema changes. what is the likely hood that emphysema would cause symptoms so suddenly? And if something has shown on my ct scan can emphysema look like anything else? Sorry for the rant, I’m just a little (very) worried

[corriena]

My sudden chest pains were caused by silent reflux but took months to diagnose as all other tests were done first same as yours and came back ok. I was shocked at how bad the pain was for a reflux problem. So might be worth a ask.

[Sunflower01 in reply to corriena]

Hiya thanks for responding, that’s interesting! Out of curiosity did you have a ct scan? How did the eventually diagnose that

[corriena in reply to Sunflower01]

I ended up having a camera down my throat. Witch showd damage caused by the reflux. I also had a barium meal while being xrayed and a sensor down my throat for 24 hours. But it was my respatory specialist who referd me over to gastro apparently its quite common amongst breathy people as it can be caused/exasperated by are meds i hope you are soon sorted.

Ps i have emphcemia and bronciextacis

[Sunflower01]

Hi! I guess I’m just in panick mode a little as don’t really have any answers at the minute, you having a similar time?

[Kristicats]

Perhaps you GP could go through the findings with you. Perhaps refer you to a pulmonary physician? Sorry I know this will take time but they are the right peeps to explain re your CT scan.

As mentioned by corriena I also had worrying chest pains and sob in the evenings that turned out to be reflux.(in my case milk was the culprit) hope your chest is easier now?

[Sunflower01]

I am booked in with a consultant tomorrow evening and will hopefully know more then. I’m only in my twenties and everything I’ve read has been very negative, which then makes the anxiety increase and the chest pains of course worsen! If the doctor didn’t “see” something I wouldn’t be so worried and put it down to stress or something else less frightening! Thank you for responding though x

[Hidden]

Hi Sunflower01

Emphysema can develop gradually, I don't believe it would cause symptoms so suddenly unless it was already advanced and if it was advanced you would have had symptoms prior to your recent experience, daily shortness of breath for instance, not able to be active, fatigue etc etc. already using inhalers.

The CT scan shows the type of damage, I was told there is no mistaking emphysema on a CT scan. Emphysema affects the alveoli (air sacks), you may want to check this page out to understand a bit more about it:

blf.org.uk/support-for-you/...

don't hesitate to contact BLF helpline for more help and support, guidance on what further questions you may want to ask the doctor etc.

Hope you find the emphysema is still in the mild stage and that you recent experience is not repeated, its good news all your test results came back fine.

Take good care BK

[Sunflower01]

See I have no symptoms prior to my a&e visit. No cough, no wheeze, no shortness of breath etc I work 12.5 hour shifts on my feet and yes I’m tired afterwards but who wouldn’t be haha?! Thank you for the information though, if it cannot be mistaken on a CT there is one question answered

[Katinka46]

I am going to throw a spanner in the works. A raised D-dimer is a very good indication for PEs. All your symptoms would be explained by PEs. Your are very young to have Emphysema and it does not manifest itself suddenly. I assume the CT scan was a Pulmonary Angiogram? ie a CT scan with an injected trace of dye to look at the pulmonary blood vessels in your lungs. I don’t want to undermine the professionals who are involved in your case but on two occasions I have had CT scans that were not interpreted correctly. One was a CTPA scan in which the specialist lung radiologist failed to spot Chronic Thromboembolic Disease, A year later the scan was looked at again by a team of super experts who did diagnose CTED. On another occasion a radiologist failed to spot airtrapping on a HRCT scan. I knew there was airtrapping and tentatively asked for a second opinion on it, and the second opinion found it. So, maybe politely ask for a second opinion. Confident doctors don’t mind second opinions because it spreads the responsibility and CT scans are not as clear and simple as we patients think they are.

All the best from a spanner throwing

K

[Sunflower01 in reply to Katinka46]

Hi! Thank you so much for your reply I do really appreciate it! Yes your right the ct was done using contrast. My understanding to is that an elevated d-dimer level can indicate a PE (amongst other things of course) and this would also explain the sudden onset of symptoms. I have never hoped so much for a doctor to be wrong believe me, the appointment I have tomorrow is private just for a second opinion as some of the information I was given was a little contradicting. I was also extremely upset so couldn’t take in a lot and was feeling rubbish too. The only thing is the doctor saying he seen something that makes me think well it must be something, that and my dad has recently been told he too has emphysema so that’s got me thinking about the genetic link.

Thank you for your reply though - I appreciate anyone who wants to throw a spanner in the works xx

[zorro1]

Hi Sunflower, has your gp or consultant tested you for Alpha 1 antitrypsin deficiency? It is an inherited genetic condition that can lead to emphysema. A simple blood test will show whether your levels are low. If they are then further blood tests can be done to check the genetics. Given that you are so young and with a close relative also having emphysema this test ought to be done anyway. Possibly something to raise with your consultant. Good Luck.

[Sunflower01]

As far as I’m aware no it hasn’t been done but I’ll mention it later, thank you x

[Offcut]

If you have advanced emphysema, your lungs will appear to be much larger than they should be. In early stages of the disease, your chest X-ray may look normal. Your doctor can't diagnose emphysema with an X-ray alone. A CT scan of your chest will show if the air sacs (alveoli) in your lungs have been destroyed.

A CT Scan will basicly show anything untoward I have also have had a Nuclear CT where they put an isotope in the blood and then do a 360 scan it showed my left lung was not getting as much blood into it as I should. I am not a good benchmark as I do have multicondtions with PH being my most difficult!

BE Well

[Stephend]

Morning just to say it took about 3 three months I lost a lot of weight then sent for X-rays then sent me to Specialist who did the CT scan on me which showed emphysema and he showed me lots and lots of holes in my lungs I have a big one on my left lung and loads little holes it’s like looking into space with the stars coming closer and closer but they were the holes then I had Spirometry which then said how bad it was that’s how it happened to me

Good luck

[Blayney]

Hi I have Emphysema caused by Alpha 1 and my symptoms appeared gradually, with shortness of breathe becoming noticeable over a few years. Initially the doctors said it was my asthma then I asked for Xraysvand scans as lung disease ran strongly in my family. The Radiologist report Bronchetis and it wasn’t until I had spirometer testing and oxygen exchange tests that a Pulmonary Specialist diagnosed Emphysema. I don’t think the symptoms appear suddenly. And yes doctors can be wrong and you need more tests to confirm any lung diseases.

Alpha 1 does sadly affect young people. I have my fingers and toes crossed for you and for your initial diagnoses to be incorrect.

Good luck with your appointment. And do not Google Emphysema as some of those American sites will have you in a coffin in five years. They are so wrong.

Please stay positive

[Sunflower01 in reply to Blayney]

Thank you Blayney for your kind message, I have my fingers crossed too! Xx

[Nicholatracy]

I’m sorry I don’t have an answer for you but I’m sure someone will be along soon with some information. Stay strong 🐞

[Sunflower01]

Hi everyone just a little update! So I seen a respiratory consultant tonight who was lovely! He had a look at my ct scan and said he can see what the first doctor means that there is slight changes to my lungs but because the first ct scan wasn’t looking for emphysema and was looking for a pulmonary embolism he wants it looking at by a chest radiologist to look at the nitty gritty he said, he also said that emphysema presents itself quite differently if I did have the alpha 1 but will arrange testing. I asked him should I be worried which he replied no. He did say he wasn’t ruling out emphysema, I did query why my symptoms have come on suddenly he thinks maybe anxiety caused symptoms and it is just incidental they have come across this. Thanks everyone for your messages x