Hi all, I'm Jez. I'm 29 and I have interstitial lung disease. In may 2014 I had to go to A+E due to "being very poorly". As it turned out I was going through chronic respiratory failure. My sats when I went in were somewhere between 40 and 50 and we were struggling to get them back up to a safe place. Even with the cpap it still wasn't good. The doctors decided I needed to go on a respirator so they could do a flush and some tests and I was on the ventilator for 11 days in ITU. I came round from the induced coma and was absolutely terrified as I had been having the most horrific nightmares/hallucinations. Those propofol nightmares are so terrifying. It took me 2 weeks to learn to walk again before leaving hospital. Somehow my sats had gotten to a safe level again, I think mainly through high strength steroids. I was discharged with supplemental oxygen and steroids. And I almost felt like I was back to normal. Earlier this year I had a flare up and ended up in the hospital again for another 2 weeks. Forward to now and I'm on 5 litres of oxygen at rest 24/7 and 15 litres on exertion. I'm really not getting any better and am looking at a transplant as the only way forward. I need to lose another 10kgs of weight before I'm eligible for that though, I've already lost 10.
I've been told I have interstitial lung disease, showing emphysema with some fibrosis. But I've not been given a proper diagnosis as everything they've tested for had come back clear.
Anyway I just thought I'd introduce myself and share my story.