Nasty pulmonary fibrosis/asbestosis

My husband had just been put on the transplant list after waiting a year and a half, which was filled with endless testing at a major hospital far from home ( some of these had to be repeated every 4 to 6 months).  His asbestosis/interstitial lung disease/ has become so severe that a wheelchair has to be used to get him around any distance outside our home.
ANOTHER recent collapsed lung followed by complications cost him 5 weeks in the hospital, took him off the list, temporarily we hope, but he has a long way to go to get back to the already serious state he was in prior to his latest hospitalization; each time " something happens" it is a set back which can be permanent, because his lungs continue to close--pulmonary fibrosis--   He has a strong will to live, is still optimistic, and the Lord has answered many prayers so far, or he wouldn't be here, after enduring in 2009 pneumonia twice, an enormous blood clot ( PE) which traveled from his leg to both of his lungs; he almost died a few times, and has seen the ICU several times; a collapsed lung followed, with a very high heart rate then, which prompted the surgeon to give him heart medication, put him on a bipap mask and insert a chest tube, which helped the lung to reinflate and "heal" and gave him relief with breathing and high HR.  He was in bed for 4 months in the hospital, without being able to ever get up, and his leg and arm muscles atrophied almost completely; a vena cava filter was put into the main artery of his body, to " catch" the clots that would likely form.
He also had many infections, ( staph one of them) lost weight, almost went into respiratory failure, but through it all he remained hopeful that he was going to get better at some point and go into a rehab facility to regain his strength and face the intense pre-testing prior to being accepted (or rejected) on a lung transplant list-- ---a transplant the only way to save /prolong/ his life.
He was too weak to be accepted in any rehab, and because the doctors all said he had end-stage asbestosis/interstitial lung disease/fibrosis, they suggested a hospice-- normally for cancer patients---  He accepted gladly, having full intention to recover THERE; and after a discussion with me, his wife of so many years and after I had checked everything very carefully there with a grand tour and really seen the place---- which stunned me with its beauty, filled me with a sense of peace and hope in its exquisite little chapel------he was transferred there where he began to improve the very first week; the food was actually VERY good and served on regular china; the medical folks, from nurses to attendants were absolutely wonderful, devoted and friendly; all was modern, brightly colored patient private large rooms, and it was difficult to be sad in such a place, in spite of the terrible sad losses which kept happening all around us.
They catered to the families and supported them in an incredible way, with meetings, a quiet place to relax for coffee and snacks, a large fish tank, little fountains, massages weekly, and someone always there to talk to.  I will never think of the word hospice in the same way again.  Someone was there to make sure I ate, brought me a tray, and scolded me when I stayed over 12 hours, which was often, but I was allowed to stay overnight as often as I wanted in my dear husband's room; they provided a comfortable cot/blankets, etc.... and we watched TV together as if at home,where I missed him so much. His optimism was contagious, and I admired him so much for not complaining at all.
Well, he did improve much, after some unpleasant bedsore kinda thing and a light infection, he received light PT bedside everyday, I'll never forgot the joy I felt when he was able to get on the wheelchair and I took him downstairs to see the big fish tank! I wheeled him all around, close to the outside, where he had not been for 6 months.
He made it to one of the best rehab places in the country, where they worked him 3 hours daily physically--tailored to his condition----he continued to gain strength and came home after 3 weeks of good food, good "work-outs", great music and visual imagery sessions- and was accepted for PRE-TESTING for lung transplantation.
This was almost 3 years ago, and trouble has begun again, but he did get out of the hospital, fragile now, but still strong inside.  He is my hero.  He is of course on oxygen 24/7 and needs 25 L to do a simple little walk; 5 at rest, and more if he eats or talks on the phone; because he gets out of breath so easily, even WITH oxygen, he needs someone to "get this and that" for him on an almost constant basis; we do have an aide for the past 2 weeks, and it's a bit of relief for me who has been the always main caregiver, difficult at times, I get so sad, depressed, then angry, tired, a bag of mixed emotions; I am not a young person anymore, and I fear not being able to do everything for him that needs to be done, if a lack of energy remains with me--- but "I love him more today than yesterday" He calls me his angel.
I feel sorrow and sadness deeply for what happened to this good and kind man, just because of the line of work he chose to be in, which caused the asbestosis. He has always been healthy and has no other health problems.
We will continue to hope and pray that he will get strong enough to be listed again.
To any of you facing a dilemma like this, try to stay strong and focused for your loved one; he or she is trying to stay strong and focused for you. 
Thank you for reading this entry; it does help to put things into written words.
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