At this moment, we are in maintenance mode. With everything that has happened, the blessing is that we have learned hard lessons with scary, but so far non-catastrophic results. My husband and I made the difficult decision in late Spring that he needed to go on disability. It was taking every ounce of strength and energy that he had in order to get through the day and he would not be able to keep doing all he was doing and still take care of himself. When we notified each of his doctors, they marveled that he had been able to keep up as long as he had. This reaction solidified that we were doing the right thing.
As with everything he’s had to either give up or alter, he’s had to come to terms….usually fighting tooth and nail to keep his freedoms. When his Pulmonologist said he needed oxygen therapy, he resisted. When I suggested that he just ‘try it’ and see if he felt better during the day, he agreed, BUT “only for a few months”. I quickly learned that my role is to gently push him towards what he needs to do, but in such a way that he is still calling the shots.
The Monday after his last day of work, we began working at finding the source of his cough. During the Summer it had become progressively worse, sometimes to the point of him throwing up or passing out. For two months, our days were filled with diagnostic tests and doctor’s appointments. A CT scan revealed that his lungs were filled with spots, and he was promptly scheduled for a bronchoscopy. His Pulmonologist went over the results with us, and thankfully, they were not tumors. Since we had not met with him between the CT and bronchoscopy, we had no idea that he suspected tumors, so we were a bit surprised. However, not knowing this meant that we were also not worried. What he did suspect was that my husband had Bronchiolitis obliterans with organizing pneumonia (BOOP). It is a rare lung condition in which the small airways (bronchioles) and air exchange sac (alveoli) become inflamed with connective tissue. (from the American Lung Association. http://www.lung.org/lung-disease/bronchiolitis-obliterans-organizing-pneumonia/)
Unfortunately, the recommended treatment with Prednisone caused him to be hungry all the time. Compounding this was his fluid intake, which helped his cough some, but also caused swelling. At some point, excessive fluid in his intestines rendered his Lasix ineffective. In early November, he was hospitalized with acute congestive heart failure. Ten or so days of fluid removal made all the difference for him, and he was released right before Thanksgiving.
And so, our clear plan is: VERY low sodium intake, VERY careful fluid restriction. He weighs daily, and every evening he flexes his toes for me. As long as we can see the tendons in his feet, we feel we’re on the right track. It feels good to be in control of what’s necessary in order to keep him as healthy as possible. It has been a long journey to acceptance. However, acceptance has also been the gateway to peace, and we have learned that by accepting, we are now open to seeing the blessings in each day, and being thankful for what he CAN do.