Times they are a-changing

John hasn’t been doing very well. He’s been sick, short of breath and miserable.

Yesterday, he stopped taking Esbriet, which is the pricey medicine prescribed for his idiopathic pulmonary fibrosis in January. It comes with many side-effects. He felt he couldn’t cope with the constant nausea and the absence of taste sensors which mean nothing tasted good. After losing nearly 20 pounds, he felt it was time to take a break from the poisoning of his body by this potent medicine.

(I should note that a majority of those taking Esbriet quit due to the side effects. His doctors said 75% or more of their patients had quit taking it.)

He had an appointment with his Saginaw pulmonologist Monday. She recognized that he’s gone down-hill. She said normally the best you can hope for staying comparatively well (even with treatment) lasts five or six years. John’s nearly to seven years!

She is having him tested to see if his lung problem may have reached a point where he isn’t getting sufficient oxygen as he sleeps. If that’s the case, his heart could be affected. She feels the arrhythmia he’s been diagnosed with could be an indication that he’s developing this problem. The fix is to have him wear an oxygen nose mask when he sleeps (like those diagnosed with sleep apnea use). He won’t use it all the time, but at night, it might help him.

He and his physician talked over his need for a handicapped parking placard. There are times when he truly can’t walk the distances required. His doctor filled out all the paperwork and today we got him a handicap permit at the Secretary of State office.

This afternoon was a good example of his need for that privilege. We went shopping, but he could only make it to the door, and he just couldn’t go further. He’d run out of oxygen. I ran around the store while he guarded our shopping cart near the door. He was exhausted.

But looking ahead, we were also worried about our Evart festival and what would happen if we ended up with a distant campsite. He’d just be stuck at our RV. And when we’re headed back to Florida next fall, we were concerned that we’d have a similar problem to last year. Our motel room had close-by parking places but they were all handicapped. John couldn’t have handled the luggage from the non-handicapped spots. The motel management understood his situation and said, “Don’t worry about it, we’ll vouch for you and explain there were no other sites, if you have a problem.” Now he can legally occupy the closer spots.

Today we stopped at a half dozen places after he had the placard, but he never used it. He won’t abuse the privilege but he’ll have it, if needed.

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