Life is changing for us, and it is not for a positive reason - Page 21

so sorry to hear about your hubby.  HUGE hug first, and then some information that may help.

My FIL had COPD (similar) and did pretty well for a couple of years once he got proper treatment.  I spent quite a number of years working in respiratory medical device design, so I've been around respiratory issues quite a bit.

you will want to make sure you talk with a Respiratory Therapist who specializes in Rehab.  there are lots of things your hubby may be able to do to improve how he feels and functions, in addition to medications and things the doctors prescribe.  often the RTs know quite a bit more about improving function and quality of life than the Dr.s do... especially those trained and experienced in rehab.  they specialize in recovering lost ground, and some good improvements can be made, sometimes extending the time, sometimes making it better quality time.

also ask the RT and your Doc for things to watch out for that indicate a need for change in therapy/drugs.  some things, like personality changes, are quite common as a result of oxygen deprivation - my FIL was angry, short tempered, paranoid - all of which cleared up when he got on oxygen and the proper drugs.  often things like short-temper or anxiety can come from pain but they can also come from low oxygen in the blood, and some of those things can benefit from behaivor changes as well as medication changes.

one of the things a rehab RT can do is teach him how to evaluate his limits more correctly - his body has changed and he needs to know what he can push, and what he shouldn't.  often with respiratory issues, people will let their "out of breath" sensation stop them from proceeding... in fact, they *may* be able to proceed even though they feel out of breath.  this is where the rehab RT's experience is really important - they can help your hubby understand what he actually can do - even though his past experience might tell him differently.

one of the things I heard from rehab RTs over and over is that people loose far more function than they need to, and lose it far faster than they should, mostly because the doctors, while skilled in diagnosis and medication, aren't skilled in rehab or extending a person's quality of life.

there's a good possibility your Dr. won't be eager to put your hubby in the care of a Rehab Respiratory Therapist.  be a bulldog, insist and don't take no for an answer.

one more of these:

We have a source from Hospice that helped my best friend when her hubby was dying that is helping us out with the disability and MediCal applications.  Social Security disability is apparently turned down 2-3 times before finally being approved, which really chaps my hide.  Especially with someone with a diagnosis like this.