Doctors making little sense despite severe symptoms
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 pulmonary consultant who ordered spirometry and HRCT of chest. CT was done September 2022 and spirometry in August 2022.
Spirometry showed a concerning restrictive pattern – I had about 20% lung capacity, but doctors kicked this into the long grass because CT showed only a tiny Bronchiectasis at bottom of lung. From there on, I’ve been fobbed off because I’m visibly anxious all the time and they put it down to that. However, from December 2022 it has been getting worse and about 6 weeks ago the mother of all exacerbations began. Constantly breathless and getting worse. Over past fortnight it’s become intolerable and now feels like I’m trying to breathe into lungs made of tyre rubber. I’ve also got a horrible dry cough that nothing eases. They give me salbutamol and budesonide, occasionally prednisolone, but none do anything. Also I can’t yawn and can’t sleep (been awake about four full days now) because I literally stop breathing at the point I nod off and SPO2 drops to mid 80s. When I have somehow managed sleep I wake up feeling like my lungs are tiny and and it’s very laboured sleep. I literally like if it’s not me forcing a breath, I don’t breathe. It doesn’t ease even at rest and if I just get up to sit, stand or even move slightly, my pulse goes up to 145+. This does lower to a permanent figure of 115 once I sit back down but my sats then plummet. Showering and toilet use are so difficult. I just feel like I’m going to collapse. I’ve seen GPS, been multiple times to A&E (ER) and they continue to put it down to anxiety. This is because somehow whenever a medic sees me my oxygen sats are 94-96 but it constantly dips lower and the breathlessness continues to get worse.
what I’m seeking is advice. As well as CT I’ve had multiple chest X-rays and nobody ever spots signs of fibrosis. So they continue saying anxiety. I’m so frightened and every day is a complete struggle. I’ve lost 20kg since November 2022. The fear, breathlessness and frustration is endless and it all falls on deaf ears. Even my family now believe the anxiety line. But I’m 100% it’s not anxiety. How could my lung function be so poor yet they ignore it? Im getting nowhere, just more unable to breathe – with only tiny breaths in and out and a creeping, weighted feeling on my back and over my breast areas. This sometimes hurts too. There’s also pain in my legs and arms intermittently and I really struggle to walk. I just don’t go anywhere now.
I paid to see a private doctor after Christmas and he ended up being one of the NHS docs who’d seen me so fed me the line about anxiety again. Nothing will convince anyone how ill I am. I find everything, including eating very hard. Any advice is appreciated.
Would IPF have shown on X-ray by now? Why are they ignoring a, by their own admission, very low lung function, which if PFT repeated I know will be worse than last time? It’s like I’m shouting into a lead wall and all they say is anxiety. I wish everybody on here well and await any advice you can give.
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