John’s Fatal Lung Condition
My sweet husband, John, was diagnosed with idiopathic pulmonary fibrosis (IPF) in November 2009.
At first, a cough was the only symptom. As it progressed it became harder and harder to breathe.
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 became weaker. He now finds it difficult walk more than about 50 feet without stopping to catch his breath. He uses a powered 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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March 30, 2018
John’s deterioration has speeded up. He was in the hospital nine days in March and he’s still very weak. (He had blood in his lungs.) He is totally dependent on oxygen from his generator and instead of two liters per minute, he’s cranked it up to four. I’m afraid for us.
We can’t participate in many activities. It’s tough to just do necessary stuff. We did go to a cookout at a friend’s house last weekend and he did very well. He likes to get out so yesterday we went shopping. It totally wore him out.
Tuesday he had an appointment in Tampa with his pulmonologist and Monday he’ll have one with his rheumatologist.
At this point, he still thinks he can drive the 1,300 miles back to our home in Michigan in May. I’d like to see us fly back but we’ll see. I have already told him that there’s no way I’m driving back in October (and I mean it!) Flying would be so much easier on him (and me). I will leave most everything in place when we head north. It’ll all be here in when we come back in five months.
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July 9, 2018
So much has happened in the months since I last posted here.
John passed away on May 12th.
He’d deteriorated even more and finally admitted couldn’t drive back to Michigan. After several hospital stays and a bout with lung hemmorrhaging, our plans changed. He wasn’t allowed to fly back.
We had travel insurance that made arrangements to get us back (and have a driver take our truck back to Michigan.) We took a three day train ride north leaving our condo on May 9th. A male nurse traveled with us (supplied by the insurance company.) We had to go from Orlando to Washington D.C., and then to Chicago. From Chicago we rode to Flint, Michigan where the train line ended.
From Flint to Saginaw was a nightmare. We rode in a limo. John had to use an oxygen concentrator supplied by the nurse. John’s breathing pattern didn’t work well with it and by the time we got to Saginaw, he was oxygen starved. He was still talking to me as I got out of the limo to open the garage but as the driver and nurse walked him through our garage, he collapsed and died.
It was quick and painless.