One of the special treats of my UCTD is lung disease, which has been termed "interstitial lung disease" and bronchiectasis. It wasn't clear to me how far this counted towards the "highly vulnerable" category of COPD I'd seen to date.
I've now found a much more detailed determination here on the British Lung Foundation's website. Hope it helps:
Just as an aside, I had a hi-res lung CT and lung function tests earlier this year, pre-COVID. My rheumy described the results to me verbally as "fine". But when I received the actual results in the post later, it transpired that I had "moderate bronchiectasis" throughout and an apparent 15% drop in lung volume over the last 12 months or so.
My GP was unable to interpret the LF test result (all graphs and acronyms), and was unable to access my CT images (wrong database). My rheumy team didn't respond to my request for a phone discussion.
Now that COVID's here, my questions have taken on a new significance. It would be nice to think this crisis will encourage clinicians to see that patients don't ask questions for the fun of it.
Written by
whisperit
To view profiles and participate in discussions please or .
The page includes the words: 'If you are unsure about your level of risk, please contact your rheumatology team.' ...I have your kind of rheumy, who feels finger joints and declares everything 'fine'....the kind who pressed me to take Aza with no clinical basis for it, so he would feel better (I'm nervous' he said)...and who has said advice on my hearing loss (and treatment) can wait until audiology re-opens LOL! I won't be able to hear the phone by then 🤭 💩
Curiously, I read somewhere that a 15% drop in hearing would prompt treatment...seems it's a lucky lotto number!
I don’t want to cause conflict with your country’s ratings but here in the USA if you have any underlying health issues especially lung issues and age 60-69 you are high risk as this plague attacks the lungs.
We have healthy people of all ages who’s lungs were completely destroyed by this disease.
Please with your conditions be safe stay isolated.
It's tough Whisperit in these times for us battling our illnesses!. Test resukts like that are important to us ie a change for you with lung capacity but to the clinician's it's much more clinical and 15 % to them is 'low' and ' fine'. It was bad that your Rheumy team didn't call you back to discuss it and now the dreaded virus has intervened!. You certainly do need to be shielded with those problems so stay as safe as possible and keep well. Xx😊
Thanks misty, Yes I do get fed up with clinicians paying little attention to our concerns in preference to what they think is important. In this case, the appearence of COVID underlines the point. Stay well x
You needed that reassuring phone call to talk thru your results which sadly you were denied !. Ironic that it was covid that denied you when your going to be extra worried about it and needing their advice.
Stay safe and well too. There was a glimmer of hope tonight on the news that the social distancing measures are working!. Fingers tightly crossed it keeps improving, these two weeks are crucial.Xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Inconsistent and Confusing Advice about Isolation, Social Distance and Shielding and WHY this is REALLY IMPORTANT.
Shortness of breath and wheezing
Another St Thomas update
My next step in my journey after A&E visit - few questions for people who’s been diagnosed if poss?
