Interstitial lung disease

[HedgehogB]

I had suspected Covid in October after attending a funeral. I am pretty sure it was Covid as 3 relatives tested positive and I had the same symptoms. I just stayed at home and a week later felt ok but I was still coughing. I went on to have 3 different antibiotics and started feeling more and more breathless. In January I was sent for x rays, then a CT which showed signs of interstitial lung disease (scarring). I was really active before this but now can’t go upstairs without becoming really out of breath. I’m still coughing all the time and my throat / windpipe are very inflamed. Lung function tests in March showed my lung capacity is 44% although probably the score is worse because my upper airway keeps tightening up. Anyone else have this ? I’m 51 !

Hello Hedgehog, think I'm in same situation - been a bit breathless for a while and has got a lot worse since this winter's cough, cold and sinus infections.

Have CT scan next week and x-ray last week showed hyperinflated lungs.

Am 53 and was very fit with PEV of 112% but now puff test at 250 (not sure how these relate).

It's my upper airways that feel tight too, but with a sore throat a lot of the time and blood oxygen a little low too.

I wonder if it's a mold allergy due to this really wet winter?

A couple of years ago an x-ray showed a little inflammation between heart and lungs and GP said it was long COVID.

I am not sure, do let me know what your CT scan shows. Mine is definitely lung damage and probably from Covid not mould or anything. I have had the sore throat for months but it’s further down the airway than a normal sore throat would feel .

Hello Hedgehog, have been a bit scared, have the CT results showing something in bottom left of lung - they've said not COPD and had another more detailed CT scan on thursday.

My PEV has gone from 112 to 70, I was doing HIIT, uphill sprints and mountain biking before this.

Just found letter on my NHS app from the first scan, so hopefully will know more next week.

Have googled ILD and it sounds really horrible - what treatments have you had and is anything helping?

Hi there, have you had another CT? I’m still extremely breathless (can’t go upstairs without having to rest, heart rate shoots up etc). I’m on inhalers called fostair and salbutamol but they don’t do a lot. My CT showed a sort of honeycomb pattern in the bottom of both lungs, something called bronchiectasis as well . GP and specialist are both blaming Covid and can’t really give me any answers. Seeing a speech therapist tomorrow who is going to help me with breathing exercises apparently. I’m so frustrated at my lack of energy. I used to mountain bike too!

@BeesForHoney@HedgehogB Be very interested to hear what breathing exercises the speech therapist suggests?

The CT scan has shown a atelectasis at bottom of both lungs.

CT scans through A&E as GP thought blood clot am now on year waiting list for respiratory consultant.

Trying to be proactive, hanging over edge of bed while husband used percussion massager on my back and trying coughing and stacked breathing exercises.

Have also just done a private Aspergillus Fumigatus Precipitins blood test.

Should have results in a couple of weeks.

Feel am making a fuss but always kept myself very fit.

You struggling to walk upstairs sounds really bad!

Bless you! I went private for the respiratory consultant as I couldn’t wait. Might be worth considering. Breathing is just so vital to everything! I feel for you x I was told to try a breathing technique called square breathing which you can google. Also when I get breathless to do this : two sharp sniffs to get lots of air in via the nose, then breathe out the mouth through pursed lips like blowing out a candle. And to do this whenever exerting myself and regularly through the day. Not too rapidly. It does help, I’m getting more air in via the sniffs!

Hi @HedgehogB @BeesForHoney

I hope you are both well. I found this thread after a panic-google!

I had a frightful cough during February and March, not diagnosed as covid although I lost my sense of taste/smell for a few days. Recovery has been extremely slow, which I assumed was a post-viral ME/CFS "crash". I have had it for about 20 years and know all about pacing using the good old pulse oximeter.

Anyway while monitoring my heartrate (shocking...135 if I dare to walk up the stairs!) I noticed my usually stable oxygen was dipping below 90 before slowly climbing to 97. I went to the GP and she sent me for a chest xray.

The result came out as normal apart from mild hyperinflation of the lungs. The GP has requested a second xray which I had this morning.

Needless to say I have been reading about COPD and other nasties, so when I saw the comment about @BeesForHoney ct scan I was interested to know if hyperinflation can be temporary? It does sound nasty.

Anyway thank you both for any advice, I appreciate the breathing stuff already!

Hi @TeaAndStrumpets , my heart rate flies up if I go upstairs. Or walk 50 yards. My diagnosis is ILD and hyperactive / hypersensitive upper airway. I can’t breathe in fully without half choking ! I hope you get some answers, mines been ongoing since October x

Thanks @HedgehogB it's rotten isn't it. I hope you have some improvement with the breathing exercises. The heartrate thing is so restricting (and scary).

When I first started getting low oxygen readings I simply couldn't believe the oximeter was working properly so bought a fancy new one which of course told me (roughly) the same figures. Sometimes I put one on each hand and let them have a race....Yes my life is that boring!

Take care.

It is rotten!

I copied you@TeaAndStrumpets 😂, my right hand won!
Maybe hyperinflated lungs are temporary? they didn't mention it on the CT scan two weeks after the x-ray.

Thank you @HedgehogB , Tried the sniffing breath exercise, think it is helping.
Will look into paying to see a consultant after the blood test results.

Have had chest infections the last two winters and don't want to get worse before seeing NHS consultant next spring.

This site has lots of information about diagnostics and self help:
asthmaandlung.org.uk

The GP has said the breathlessness and erratic high heart rate are caused by anxiety (never had it before) and not the atelectasis at bottom of both lungs and reduced lung capacity...

@BeesForHoney

I think using opposing hands is good but sometimes I put them on adjoining fingers for a change. It does while away the time.

I don't understand your GP's attitude at all, Long Covid is very similar to Chronic Fatigue Syndrome, and rapid heartrate means you are exceeding your available energy. Also obviously your lungs are very inefficient at the moment. Hopefully the breathing exercises will help your stamina.

I am praying the hyperinflated lungs are temporary, thanks for reporting back on your experience!

All the best for a smooth recovery.

Then your GP needs to learn a bit more about airway problems after Covid! I’m not anxious either and they tried that one on me in the early stages.