Spirometry non-obstructive, CT shows scarring but no fibrosis/legions/bronchiectasis so what’s wrong???

[SirCoughalot]

Hi guys,

Still looking for advice! Last September I had pneumonia. It was severe, and I was hospitalised for a week. It took five months and six courses of antibiotics to shift it. X rays showed ‘chronic atelectasis’ in right base.

I’ve been sent for CT and spirometry, and gone through the results with my GP, who has essentially said the above. My consultant appt is in October but I am really struggling so looking for answers, or ways to feel better before then!

So. Spirometry. A lot of it I can’t really decipher, but the top two FEV1 and FVC are below normal (only just at 79). The ratio is normal (99). Quite a few of the other scores are also below 80, but I haven’t really been able to decipher them, so their results might be meaningless. My Google showed that this means no obstructions present, and a restrictive pattern. My GP said the same.

CT looks really good. I have seen the notes and it states: there is scarring of the middle lobe, secular of consolidation seen on CXR. No evidence of focal lung lesion, pulmonary emphysema or pulmonary fibrosis. Large airways appear normal, as does everything else. It also notes later there is no bronchiectasis.

So I am really thrilled. But I’m also a bit confused as to me, my symptoms are getting worse, breathlessness is getting worse (I mainly stay inside but have repeated a walk inside hospital when going for testing so have that as a parameter), and pain is almost constantly in my side. Today for example it’s like someone’s been poking a knitting needle in for pretty much the whole day. Unless I’m in bed, my breath is OK when I don’t move, so it constantly ‘surprises me’ when I move, so I am certain that it’s not in my head. It also wakes me up sometimes, although I am not sure whether it’s that or the pain, or both.

My GP has advised there is nothing he can do to help, and I have to wait for consultant appt. I am normally fit and active with no history of illness or respiratory problems, so I am a bit flummoxed. I am actually not too bothered about having a label for symptoms, but I am bothered about recovery. It is also massively impacting my ability to leave the house as short walks are so difficult.

Any advice from perhaps others who have had the same??? I am hopeful it might just be the pneumonia recovery; but that doesn’t really explain why it’s getting worse. Unless it’s cyclical? I’m assuming that the scarring is minor as there is no fibrosis.

BTW I’m a 40 y o female if that’s relevant.

[Patk1]

Bad bout of pneumonia takes time to recover from.yr lungs mustve taken a battering.im not a Dr but I imagine area of scarring could be scarring/ inflammation, and is still in the healing process. I've always been advised to drink plenty of fluids + pace yrself in getting more active. Id get up ea day ,cough up any mucous - there r techniques on aluk website.also look there at controlled pursed lips breathing and use it egon getting up,going upstairs,short walks - u focus on breathing which really helps.x

[Izb1]

I am sure you are still in recovery from your pneumonia but must say your symptoms sound the same as my brother in law's when he had Pleurisy so get it checked out as its really painful x

[watergazer]

hi. I had pleurisy with pneumonia and some of those symptoms sound like pleurisy to me but I’m not a doctor so best to speak to your dr again or if really bad go to A&E Take care x

[Issy22]

Hi SirCoughalot

I have very similar symptoms to you, breathless on exertion, walking slower because Iam so breathless and pain in my lungs. I found it’s got worse every time I have a new cough or chest infection. I have had 3 different antibiotics since January, the cold weather seemed to make it worse. I don’t smoke and Iam not overweight.

One of the lung problems, I have is middle lobe lung collapse and I have had this since May last year it does not seem to want to heal and I also have scaring on both lungs which I was told was due to a covid infection or pneumonia I had the previous year.

My consultant said that whilst, most patients lung collapse heal fairly quickly it can take up to a year to get back to normal.

Thankfully you have no obstruction, lesions or bronchiectasis. Your say your spirometry result is 79%. The ratio FEV1/FVC is between 70% and 80% in normal adults. Several factors can reduce lung capacity.

This could just be your body trying to recover and you need to give yourself more time. My consultant told me to keep drinking fluids and still walk every day even if it’s only a short walk. Take analgesics and i was also told stress can exacerbate the symptoms.

Can you not see a different doctor at the surgery who can explain more. Have you had a recent blood test ?

I hope this information helps and I hope you feel better soon.

Issy X

[SirCoughalot]

Gosh sorry to hear about your slow recovery. GP was very clear that it is for the consultant to interpret the results etc. He is a partner at the practice so I don’t think it’s his lack of knowledge per se, more of a deferential nod.

My ratio (Fev1/fvc) is actually really good; 99%. The other scores are low - together this is a non-obstructive (restrictive) result apparently. But I have kind of mentally upgraded those low marks to normal anyway as it makes more sense as I am only just out. I am also a non-smoker, and nothing in family history, so no reason for a poor recovery. Your reply makes a lot of sense. I had pleurisy for a long while so recognise the difference in how I’m feeling now; I’m confident I don’t have it now but thanks to all for the suggestions.

[Issy22]

Take care of yourself and I hope you can get an earlier consultant appointment.

[knitter]

October is a long time to wait .

Contact your gp again , say you are in pain and breathless , can they contact the consultant to get an earlier appointment . Sometimes cancellations are available at short notice

Meanwhile you should be offered help.

I contracted double pneumonia years ago , when I was 47, in pain and breathless for ages , so I have some idea how you feel . But it needs sorting .

Maybe try your pharmacist , perhaps they can alert your doctor that you need help now.

October is 7 months away .

ALUK have a helpline open during the working week , try and contact them if you can

Best wishes .

[SirCoughalot]

thanks knitter. Sorry to hear you have had a bad time of it. I had forgotten that I initially had it in both lungs, but I think it was only a bit in the left lung and that resolved as expected by the first 6 week review. Just the right one that will not heal. My GP has written to the clinic asking for the appt to be brought forward, but didn’t hold out much hope! It is a good idea to ask for a cancellation, or if they run a cancellation list. Thank you