I know this is unconventional and this isn’t a medical advice site, but I’m at wits end. I’m posting a link to a low dose CT I had in July. It opens in Weasis on computer. I can open the scans on phone with IDV app.
I’ve been told there are signs of ILD on CT but doctor doesn’t agree with radiologist. I just can’t get anywhere. and I continue… Read more

Thank you for your comments Charlene and hope you’re as well as you can be. Sadly, every time I call an ambulance or visit a doctor my sats remain above 94. They occasionally dip for a few minutes but I’ve had a doctor say even at 90 it’s not a concern if they go up. I think I somehow compensate and over breathe in those situations. Maybe cos… Read more

So, I had a low dose CT privately.

It showed a 6mm nodule in my right lung middle lobe. That’s the area where I could originally feel pain and discomfort (which I now have all over chest, along with breathlessness and low sats, dizziness and high pulse etc). The nodule wasn’t present on High Res CT in September. I need to somehow get the NHS… Read more

Yeah I keep reading things about zinc. So I’ve been taking it. Guess it can’t help. Although I’ve been taking haritaki and serrapeptase for ages too and neither help. Worth a shot.

Despite continually worsening S.O.B, low O2 sats and severe restrictive pattern on spirometry, a Pulmonologist I saw this week refused further investigations and suggested I have dis functional breathing.  Again, all because they couldn’t see anything other than a tiny bronchiectasis on an HRCT last year. She recommended physiotherapy – I had… Read more

I don’t understand the spirometry results but the consultant told me the results (in September 22) were I had 20% lung capacity. He kind of ignored it. Said “it’s very low, but going on how you’re presenting I’m not concerned and I can’t see fibrosis on your CT scan”. Although they saw two Bronchiectasis close together, they said were tiny.… Read more

Hi Scott. That would be very useful. My number is 07772044038. I’m in the UK. So if abroad you could WhatsApp me?
I’m supposed to be having a 24 hour sats monitor device but that is taking forever and I’m fearful I’m not going to be able to wait much longer.
My breathing is so bad.
kind regards,

Gavin

Thank you Silvain and GiGi.
I’ve tried a hand held fan and it doesn’t seem to help me unfortunately.
Yes, I too think I need oxygen. And my sister (a nurse) thinks c-pap or bipap too because my involuntary breathing doesn’t seem to work. As soon as I stop concentrating on taking breaths, my oxygen sats plummet, so falling asleep is really… Read more

Thank you Monica. I hope your journey is comfortable as possible.
I’m getting worse as each day passes. My chest and back is aching and my legs are weak. My sats drop to 89 now unless I’m forcefully breathing. If I stand up or walk my pulse shoots to 140. It’s unbearable. I just wish I could find someone to help. xx

I’ve ordered some haritaki online. I’m dearly hoping it makes some kind of difference before it’s too late.

Hi,

I’m Gavin, aged 46 and diagnosed with restrictive lung disease. It’s frustrating because between pulmonary appointments that take months, I’m getting worse and worse and never getting a full diagnosis. It’s very much like doctors just don’t seem concerned. And as I’m quite an anxious person they have frequently seen this and put the… Read more

Hello all. I had a major exacerbation 9 weeks ago and my breathlessness has become severe and is progressing each day even at rest. It feels I can only breathe in a tiny bit of air. It’s dreadful. I just wondered, of those of you, bless you, who have very severe breathlessness, do you ever get days or periods where you can breathe easier? It’s… Read more

Thanks Scott,
I have a finger pulse oxometer and an Apple Watch. The pulse ox was calibrated by a paramedic on a 999 call a few months ago so I know it’s accurate. The main problem is that I am getting no sleep at all – every single time I start to nod off I stop breathing and wake up. I’m getting blocks of about an hour where I’m awake… Read more

Thank you Charlene,

The symptoms are there permanently and worsening. It actually feels like this last three weeks the structure of my lungs feel different like they’re being pulled apart. I’ve even heard a crunching type noise on some breaths in.  And this thing with the moment I nod off I stop breathing – I’m going on 7 days with NO… Read more

Hello, I’m Gavin. 46 and in UK.
For about four years now I experienced episodes of chest discomfort and an awareness I couldn’t quite breath in and out. Sometimes with gaps inbetween of 4 weeks where I’d feel Ok-ish. In 2021 these started to become more regular and I never returned to how I was before each flare up. I got referred to a… Read more