John’s Lung Condition

My sweet husband, John, was diagnosed with idiopathic pulmonary fibrosis (IPF) in November 2009.

At first, a cough was the only symptom he displayed but he’s now finding breathing harder.

When they told us he had a three to five-year life expectancy we found it hard to believe. He continued to be active and strong.

The year 2016 signaled a major change in his health. In January, he went on a drug for IPF called Esbriet. He didn’t tolerate it well and lost 30 pounds over a few months. He was in such a weakened conditioned that in May 2016, he developed double pneumonia. When he left the hospital, he was on oxygen 24/7.

About a month after that, he had another hospitalization which the hospital thought was a heart attack. A cardiac cath eliminated that as the cause of his pain so a doctor diagnosed it was gas from a colonoscopy he’d had. Two weeks later he was back in the hospital with the same extreme pain. Finally, he was correctly diagnosed with pancreatitis. He had his gall bladder removed in hopes that it was the cause of his pancreatitis pain. Another hospitalization in April 2017, a G.I. specialist found a growth on his pancreas. At Moffitt Cancer Center, he had an esophageal procedure to drain a pseudocyst.

He went off Esbriet in June. In November he started on a new drug called Ofev, which seems to be helping his lung condition.

His hospitalizations were not related to his IPF, but each time he was hit was something, he weakened. He now finds it difficult walk more than about 50 feet without stopping to catch his breath. He uses a mobility cart when shopping and even used it to maintain our Michigan yard this past summer. We used to go dancing several times a week. Now he’s lucky to make it around a dance floor once (while wearing his oxygen).

There are days when he feels pretty good but others when he’s very discouraged because he isn’t as strong as he was even the week before.

I do all I can, but it’s a hard balance between robbing him of his masculinity and helping him. He gets upset with me when I treat him as someone who has a health problem, but he’ll also complain when I don’t do things for him. His temper is often on a hair trigger. Under it all, he’s sweet and caring. After that difficult mood passes, he always feels bad about being crabby.

He’s made it over eight years but his deterioration is gradual and he knows that eventually, Idiopathic Pulmonary Fibrosis will win the final battle, but he’s fighting it all the way.

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