COPD end stage: Anyone else?

ppeschke i feel for you.I was put on disability due to copd,after working my whole life..Ifeel i shouldnt havve to prove yo anyone imnot well,eople dont realize how bad copd is ,I get really down at times thanks to mywife and grown children things are alittle better.

@robertjr I wonder if you and @ppeschke happen to have more than simple COPD? I have this, but in my case it is part of my Amyloidosis/LiteChain hATTRwt. My lungs are filled with nodules and lesions and other growths. Some clinics also call it Mixed Connective Tissue Protein Deposit Disease, or some variant. Most of the material notes that COPD is an early and continuing stage of several mutations of Amyloidosis. The best early tests are the SERUM FreeLiteChain (sFLC) and the 24 hour urine collection and protein test. If the sFLC returns high light chain >1.6 mb/dL and/or Heavy chain protein >1.9 mg/dL, the mis-folded protein is a problem. This disease can be treated now with Patisiran and some other just released meds. But the most important thing I can say is “Don’t give up. I am at the point I can not go up to the third step of my step ladder, but I can still celebrate being alive. https://bit.Ly/1w7j4j8

Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?

Im sure its copd,had plenty of test through the years.Seems like things dont change for awhile then things go down sofast.Once things get bad never seem to return to full health.Start to feel like not worth doing anything too hard getting breath back.,start to wonder whatsgoing tohappen next time iget sick.

waterboy,with copd im alive but thats about it most of the time.

Robert… I am on the high end of the moderate stage, I am also a Alpha1 (MW)……. have you ever been tested? You can get it done for free. Some days just standing at the counter helping the wife make a meal is a stretch.

@ppeschke, I understand how you feel and how frustrating it is for you. I, too, live alone. Unfortunately I have no family. I’ve started looking for someone to help me that I can afford before things get too bad. Good luck.

I have family but I think we are alone as the disease progresses. We have no outward signs of being ill. Family thinks I should walk more. I can’t breathe after a few steps. I have always loved to read and I can’t settle enough to get involved in a book. I seem to stare at the wall a lot. I get upset with me and my lack of drive. I am thankful for what I have. I do agree with each bout the illness progresses. Am now coming off one. I will be better tomorrow. We are all different but so alike. There is always someone who feels worse than we do. Pray for each other as we are never completely alone. God loves us and cares for us.

@jo54 You are right. You are never alone. Lots of times I cannot breathe and I am short of oxygen while on the CPAP in my bed at night or in my big comfy chair. My family thinks I am nuts. So do most doctors.

You are not Nuts and I am willing to bet your family is so scared they do not know what to do.
Perhaps learning how to breath with a relaxation tape or assistance will help you? It helped save my life!
Dr Amit Sood has a lot of helpful suggestions in a book Stress Free Living.
linda