I've been diagnosed with Alpha-1. Anti trypsim deficiency which has lead to me having Emphysema/COPD Gold stage 4 MRC breathless score 4 my FEV1 is 0.48, 20% predicted. I was a smoker but I've now stopped 8 months ago. My consultant was going to put me forward for a lung transplant but is now saying that because of my Osteoporosis he doesn't think that I would be a suitable candidate for this procedure. So he's now sending me to be assessed by a professor with regard for suitability for endobronchial valves or lung reduction surgery. He's also told me that if I were to get a chest infection it would probably kill me.
My GP has advised me to sign a DNR as resuscitation is brutal and he doesn't think I would survive it anyway.
I'm angry because my condition was treated as asthma for my entire life from age of 5 onwards. I always had problems with chest infections, Bronchitis, etc....I feel that my GP should of sent me for further investigations as I got older.... I just feel that I've been let down by my GP.
I'm so depressed. More importantly, I don't want to die and I've told my GP that I don't want to die. I won't sign the DNR.
I'm also wanting my consultant that I at least want to be assessed for a lung transplant.