Covid 19 and emphysema

[Trujillo]

Hi just been diagnosed with emphysema scarring on left lung ...6 months ago had covid 19 xrays etc showed no problems 6 months later xray showed hyperinflated lungs

[Katinka46]

Welcome to this forum. I am fascinated by your story and very keen to know more if you felt comfortable telling it. Loads of questions. Who has actually diagnosed you with emphysema? The reason I am asking is that some post Covid patients have lung damage that looks very similar to mine (which isn’t emphysema). My case is complex (not post-Covid), I had a Xenon gas MRI in the summer which showed extensive damage in both lungs. The same scan has used for a small cohort of post-Covid patients and the damage is similar. Did you have pulmonary emboli (blood clots in your lungs) as a consequence of Covid? Emphysema takes years to develop, it does not happen over a couple of months. One of the early and incorrect diagnoses in my case was emphysema.

Sorry, too much of an interrogation for 5:30am on Boxing Day morning!

All best wishes

Kate

[Trujillo in reply to Katinka46]

In may i developed pain in my back and shoulder I put down to bad case of indegestion but after 24 hours the pain was still there and radiating around my cheast went doctors who sent me hospital suspected heart problem was in hospital 24 hours they gave me stomache injection for blood clots as precaution had xrays myriad of tests couldn't find anything sent home with lanzaprazole got tested in work following day came back positive for covid ...no cough no temp no symptoms apart from the pain ...over 6 months pain would come and go then 5 weeks ago I developed a cough and extreme tiredness went docs again thinking long covid ...was sent for cheast xray came back with hyperinflated lungs then ct scan last sunday ..results were emphysema slight scarring on left lung ..

[Katinka46 in reply to Trujillo]

Thank you very much for your prompt reply. I obviously can’t diagnose but I think there are a lot of questions around the long term effects of Covid. The pain you describe could be PEs, which can sometimes not show on CT, especially if they are lots of small clots. Which I think can happen as a result of Covid. Who are you seeing doctor-wise? And are you in the UK? K x

[Trujillo in reply to Katinka46]

Sorry for my ignorance dont know what PEs stand for ..just local doctor ..only 2 days ago I got the phone call about the results ...was bit shell shocked even after knowing hyperinflated lungs cause cough gone breathing is more shallow and I am tired but gone from constantly sleeping to not being able sleep ankles starting slightly to swell hings just seem to be happening pretty quick doc also said mri showed thoracic and rib arthritis so that could be cause of pain and if I felt my breathing needed any diagnosis make appointment with temporary nurse ...didn't really seem that bad ...then I googled lol not right thing to do cause now I'm thinking what questions should I have asked and what treatment excersize etc should I be doing ? ...what is your lung condition?

[Trujillo in reply to Trujillo]

Sorry respiratory nurse ..just finished night shift and yes from uk

[Katinka46 in reply to Trujillo]

PEs are pulmonary emboli, blood clots in the lungs. I had extensive, multiple, PEs in both lungs January 2010, they did not resolve so I have chronic thromboembolic disease, and this is where it gets a bit head-scratching for doctors in that it appears that that injury to the blood vessels in my lungs has caused damage to the small airways. Which is why my ears prick up when I hear about post-Covid lung damage. And that airways disease was initially diagnosed —and incorrectly— as emphysema. Hence my ears pricking up doubly in your case. I think you should push for a referral to a respiratory consultant. Kate x

[Trujillo in reply to Katinka46]

Thankyou ...I hope you are coping with your illness..you sound like a positive happy person xx

[Katinka46 in reply to Trujillo]

Thank you. I am glad you got that impression! 🤔 I consider I am very lucky, I have great support from my friends and family, and after many years of being ignored I now have a brilliant consultant. I am 74, so am in a very different place from you. Kate xx

[Thepainterswife in reply to Trujillo]

I’m no doctor but my husband as has emphysema for many years. Diagnosed with copd 16 years ago which progressed very slowly until four years ago when he became considerably worse and emphysema started to be mentioned Not much ( if anything) of what you are saying sounds familiar to me so I agree you need a respiratory consultant You have to fight to see one it took a forceful talk with the GP from my daughter followed by another one from me the following week before we got a referral. Good luck and welcome to the site

[Trujillo in reply to Thepainterswife]

Thankyou for your reply yes it does seem to have progressed into emphysema very quick as I have had a couple of cheast xrays over the years due to the fact that I was a smoker and nothing has been noted until this one 🙁

[Trujillo]

Yes was a mild smoker till 3 weeks ago but am slim fit healthy 55 year old who's never had cheast problems

[katieoxo60]

Hello Trujillo, welcome to the site. It sounds like the virus has caused some mal function in your lungs, that could get better or worse given time . Hopefully better. I have COPD with more emphesemic tendency than Bronchatic . I have scaring from a past lung infection to the left lung. So understand a little of what you are saying. If we look after ourselves we can often manage the lung condition except at flare up times like in the winter. Hope to talk to you in the future.

[Alberta56]

Good luck in getting an accurate diagnosis.

[Walkwalkwalk]

There is a wealth of information being offered to you here. It would seem obvious that your GP would refer you to a respiratory consultant. You have a lot of diagnostic material which assessed together with function tests could give a more comprehensive overview of what is going on. However you may have to pursue that referral. Please don’t be hesitant in doing so.

All best wishes.

Grace

[MusicalBreath]

Hi - I am fascinated & a bit bemused - Covid & scarring I get - similarity to restrictive conditions at alveoli level - emphysema & hyperinflation (as you know if you’re a Resp nurse) , usually result of narrowed & inflamed smaller airways due to smoking. Do you think the latter was picked up while they were investigating the former? Sounds like you could do with a second opinion? Sounds complex & wish you luck with unraveling- keep moving, keep singing x

[Trujillo in reply to MusicalBreath]

Hi I'm not sure how it all works I know from what I've read that emphysema copd takes years to develop ..I had a cheast xray 6 months ago when I had the covid nothing was picked up or mentioned to me then but due to the continuing pain I went back to gp who sent me for another cheast xray and that came back with hyperinflated lungs to which doc said could be copd or asthma ..was then sent for ct scan last sunday and that came back emphysema scarring and arthritis ...so as far as I'm aware 6 months ago my lungs wer ok ..the covid could be a coincidence red herring just weird

[MusicalBreath in reply to Trujillo]

And definitely hyperinflation not hyperventilation? You mention shallow breathing & of course a world of difference between a pathology ie what is going on in the lung airways or tissues and a habitual breathing pattern dysfunction ie you can have someone with a poor and disordered breathing pattern which has nothing to do with any disease and vice versa (often both) good luck with getting to the bottom of it all - glad you are being referred

[Mikeyb955]

Hi Tru... Welcome to the forum.. I was diagnosed with Asthma COPD Overlap (ACO) (Emphasema based) by a respitory consultant after presenting similar symptoms to you... ie.. Shoulder and back pain which would come and go... Breathlessness... Shallow breathing etc... Massive weight loss... After many tests including ct scan and spiro test and xrays.. It was found I had scarring on my right lung... As someone correctly pointed out in a previous comment.. Scarring takes years... I'm guessing therefore that your Covid as already suggested in another previous comment was picked up during your visit to the hospital for test on the cause of your symptoms.. Which is unfortunate... Hopefully the Covid won't cause any further damage and as previous stated looking after yourself and taking your meds will help with your condition... also recognising signs of a flare up and quick treatment will keep it at bay... I have "just in case" meds which are steroids and antibiotics so the first sign of a flare up I consult my doctor and if agreed immediately start the medication which then gets replaced. Good luck for the future, please keep us informed of your condition and developments about your diagnosis. Take care... Mike. X

[anng18 in reply to Mikeyb955]

Hi Mikey,Do you know what causes the shoulder and back pain. I have emphysema - severe - and suffer a lot from shoulder and back pain, but only on one side. They couldn't find any nodules on a lung x-ray and I did damage my neck and shoulder some years ago - tendonitis - but I've always wondered if there is a lung related explanation for the pain. It gets better when I'm on steroids and I normally sleep better on steroids too, which is a bit unusual but good.

[Trujillo in reply to Mikeyb955]

Hi thanks for replying breathlessness doesn't seem to be a problem as yet just shallow breathing ..and no weight loss...and up till now apart from acid reflux I've had no cheast problems never even as far as I know had a cheast infection...taken antibiotics once in my life for gum infection ...just waiting now to make an appointment with respiratory nurse .x

[Mikeyb955]

Hi anng... Unfortunately I wasn't given a definite answer for that.. all my pain was on my left side mostly occasionally also on my right which is where my scarring is... but when I had all my tests all they said was there was some skeletal changes... I don't know if that was due to a motorbike accident that I had in 1990 where I broke my collar bone and some ribs... However ever like yourself once I started to take my steroids it eased off... And I take Trimbow inhalers which is a 3 in one steroid based inhaler... And also Ventolin... so I don't get the pain as much now... Unless I get a lung infection so Im thinking that their maybe some collaration between the two.. But haven't had that confirmed by the doctor as yet. I also don't have nodules... Once this Covid has died down I'm gonna ask for my doctor for a review and more spiro tests to see if my condition has improved or worsened as I've have 4 maybe 5 flare ups in the last year... Which is not a good sign... Hope you've had a good Christmas? Stay safe x

[anng18 in reply to Mikeyb955]

Thank you so much for taking the time to reply. Yes, I was also considering requesting a review, but like you said, when Covid has calmed down.

[Greenrememberedhills]

I got a diagnosis of COPD in 2017 with no prior warning. I was asthmatic but not needed to use an inhaler regularly-only with a cold every couple of years or so. Apparently it does happen like that for a few people. I was also an ex smoker, although not for quite some years previously.

[Timberman]

Fascinating read here Tru. Couple of points that may help:1 - Are you seeing or have you been seen by an actual COPD clinician? Diagnosis I am told is not easy and it takes some skill to confirm COPD without a biopsy (how i was diagnosed). .

2 - The one thing you have not it appears mentioned is any severe shortage of breath - that is a critical determinant of all forms of COPD I believe. So if not maybe diagnosis is wrong.

3 - You say that you were diagnosed with Covid AFTER spending a day in hospital - have you any idea where you may have contracted it if NOT actually while in hospital? (I ask as my brother went in for COPD related operation 34 days ago and among complications contracted Covid in the ward!

4 - Now you are 'diagnosed' as with COPD what meds are you on - inhalers etc?

5 - I assume by now you are clear of Covid but if symptoms are long Covid in fact then what meds are you on for that?

No need to respond - just issues you should consider and/ or raise with your clinicians.

One piece of advice after 10 years of this pernicious disease - ordinary GPs and nursing staff know very little about COPD - locate your local COPD team (there will be one I assure you). Good luck.

[Trujillo in reply to Timberman]

Hi I had the back pain went into hospital as my gp saw something on my ecg ..was in there 24 hours I work in a care home so was being tested regularly 2 days after being released had works test that came back positive as did lots in work so presumably was caught in work ...As for breathlessness freinds say I'm breathing alot more when talking but I cant say apart from walking upstairs if I'm carrying something that its causing me a problem just do find myself shallow breathing

I havnt been taking any meds just paracetamol if the pain got troublesome

As was only a phone call about the results of my ct scan in which he said emphasimia scarring and arthritis of thorasic spine and ribs offered me pain meds I refused and I have to make appointment with respiratory nurse ...and apparently they put me on the covid respiratory team register really after the xmas celebrations I will have to go and discuss properly with my gp which is a reason for joining this site to get as much info about treatments ,what I should be doing etc

Thankyou for your reply

[gillianTS in reply to Trujillo]

Hi Trujillo

First thing you need in my opinion is request a copy of the radiologist CT report, if your GP requested the scan then the GP should have the full report which will describe exactly what has been found by a qualified person, from here you will be in a better position to discuss with your GP. If not GP then request a copy from whoever organised it.

I say all of this based up much experience and simple things being missed by both GP's and consultants. My most recent example was having a chest CT scan for something completely unrelated to lungs etc the report went back to both GP and another unrelated lung consultant, I was advised nothing was wrong with the CT scan. As with all my medical history I applied for a copy of the CT scan and was alarmed by it's content, it said several things that were never discussed with me by the GP, it picked up 2 lung nodules, emphysemic changes, a diverticulum in my gallbladder, very rare. I am researcher so when I am sat in from of my consultant 3 months later, she is not chest related, armed with the CT report and a series of questions, she has the report up too and reading it, she turns to me and my husband and says all is ok there, so I said can you answer me some questions please based upon the report, I asked first about the emphysema changes since I have never been advised of this before, she asked had I every smoked I said yes and stopped over 20 years ago, she said well it's because of this and then tried to move on with the appointment but my husband said can you explain the lung nodules then, she really couldn't explain, because you see from my own research I could see one of the nodules was just over the size that required further monitoring which had been missed by my GP and this consultant, she immediately put in a request to get my CT scan reviewed by the Chest consultant. Within a matter of weeks I was having a second CT scan which ideally should have been carried out 3 months after the first, results were one nodule not being monitored but the other has seen some changes since the first CT 5 months earlier, an MRI a couple of years earlier showed no issues, Chest consultant called me to discuss, planned another CT in January and hoped by then I can go for full respiratory tests.

We discussed the diverticulum in the gallbladder, she had no idea it was rare and needed further looking at by gastroenterology. I was referred and the diverticulum in my gallbladder is still being investigated, had a complete review by the gastroenterology team, they organised blood tests, a nuclear scan for bile acid absorption, completed during summer this year and qll ok, upper endoscopy is still outstanding and MRI will follow after previous 2 tests completed if required.

My message to you is get a copy of your CT scan report, not just some covering letter, research everything on it and ask to be referred. Unless you are sitting in front of the right people they simply do not like to say they do not know they have not got the knowledge to fully interpret the results and given your previous Covid diagnosis it is very important to try and understand what has happened and what can help you going forward. Had I left it to my GP and other consultant the nodules in my lung would not be being monitored or emphysema changes, the diverticulum would not be being investigated.

Incidentally I was diagnosed with costochondritis a few years ago which can at times cause lots of chest and rib pain and appears to mimic other conditions including heart issues. Because I am now aware of this I try and avoid certain activities or reduce the time doing them.

Hope you can get some answers soon.

[Timberman in reply to Trujillo]

It does not sound as if the COPD is troubling you as much as other issues. Did I ask if you had been a smoker?I really think you should ask for a proper COPD diagnosis since it is a chronic and progressive disease and can be alleviated by good medicine management/ inhalers/ procedures.

Good luck

[Katinka46]

I found an article in The Guardian that seemed relevant. I sent you the link via private message on this forum.K x